The Power of Integrated Information:
Benefits and Challenges of Developing a Long
Term Care Data Warehouse in California
Prepared for: California Community Choices
California Health and Human Services Agency
August 2011
Prepared by:
David Zingmond, MD PhD
Kathleen Wilber, PhD
Sutep Laohavanich, MS
Panayiotis Pelargos, BA
This document was developed under Grant CFDA 93.779 from the U.S. Department of Health and Human Services,
Centers for Medicare and Medicaid Services. The contents of this report do not necessarily represent the policy of
the U.S. Department of Health and Human Services or the California Health and Human Services Agency and you
should not assume endorsement by the Federal Government or State of California.
Table of Contents
EXECUTIVE SUMMARY ......................................................................................................................... V
I. INTRODUCTION .................................................................................................................................. 1
Why a data warehouse? ........................................................................................................................... 1
The California Community Choices Project .......................................................................................... 2
Building on findings from the CCCP Financing Study ......................................................................... 2
Roadmap to a data warehouse ............................................................................................................... 3
II. STUDY OVERVIEW ............................................................................................................................ 4
Goals for Study ......................................................................................................................................... 4
Scope of Work .......................................................................................................................................... 4
III. STUDY METHODS ............................................................................................................................ 6
Existing data resources ........................................................................................................................... 6
Interviews with data managers ............................................................................................................... 6
Identifying promising practices in California and elsewhere .............................................................. 6
Feedback from the CCCP Advisory Committee .................................................................................... 7
IV. DEFINING THE LTSS DATA WAREHOUSE ................................................................................ 8
The target population ............................................................................................................................... 8
Needs for a long term care data warehouse .......................................................................................... 8
Defining the data warehouse for long term care ................................................................................. 10
Data warehouse models ........................................................................................................................ 11
V. EXISTING DATA RESOURCES IN CALIFORNIA ....................................................................... 13
Table of example data resources in California .................................................................................... 13
VI. INTERVIEWS WITH CALIFORNIA STATE OFFICIALS ......................................................... 15
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Data managed by surveyed programs ................................................................................................. 15
Reliability and validity of currently collected data .............................................................................. 16
Current approaches to sharing, matching, and linking datasets ...................................................... 16
Support for creation of a state data warehouse .................................................................................. 18
Identified barriers to establishing a data warehouse ......................................................................... 18
Summary of findings .............................................................................................................................. 19
VII. LONG TERM CARE DATA WAREHOUSE INITIATIVES IN OTHER STATES ................. 21
Oregon ACCESS ..................................................................................................................................... 21
Washington State CARE ........................................................................................................................ 22
Minnesota MNCHOICES ......................................................................................................................... 23
Vermont Choices for Care ..................................................................................................................... 23
Summary: Lesson from other states .................................................................................................... 24
VIII. CALIFORNIA LTSS PROMISING PRACTICES ....................................................................... 25
Lessons from the Center for California Long Term Care Integration ............................................... 25
California’s Aging and Disability Resource Connection (ADRC) Partnerships ............................... 28
San Mateo Universal Assessment Tool ............................................................................................... 29
San Diego Long Term Care Integration Project .................................................................................. 30
California Medicaid Research Institute ................................................................................................ 31
Office of Statewide Health Planning and Development ...................................................................... 31
Summary: Lessons from California efforts in integrating information ............................................ 32
IX. DEVELOPING A DATA WAREHOUSE IN CALIFORNIA ........................................................ 34
Operational and technical barriers ....................................................................................................... 34
Legal issues ............................................................................................................................................ 34
Sustainability .......................................................................................................................................... 35
Risks and Rewards ................................................................................................................................. 35
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Future opportunities .............................................................................................................................. 37
X. RECOMMENDATIONS ..................................................................................................................... 38
Promising models and practices .......................................................................................................... 38
Incremental Goals to Reach the Long Term Vision ............................................................................ 38
Sustainability of a Data Warehouse ..................................................................................................... 40
Conclusion .............................................................................................................................................. 41
XI. APPENDICES .................................................................................................................................... 42
Appendix 1: Acronyms .......................................................................................................................... 42
Appendix 2: Interview Departments and Data Sources ...................................................................... 43
Appendix 3: California Community Choices Data Warehouse Study: Interview Questions .......... 44
Appendix 4: OSHPD: Data Request Forms .......................................................................................... 45
Appendix 5: Survey of California Patient Data Resources ................................................................ 46
Appendix 6: Building Integrated Information Systems for Chronic Care: The California
Experience .............................................................................................................................................. 61
Appendix 7: California Center for Long Term Care Integration. (2003). Creating Better Systems of
Care for People with Chronic Conditions: A Building Block Approach; Chronic Care Integration
Planning Guide ....................................................................................................................................... 70
Appendix 8: Chapter Two: California Pathways—Review of Assessment Protocols and
Assessment Grid .................................................................................................................................... 75
Comparison of Assessment Tools ....................................................................................................... 79
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Executive Summary
More than 9.5 million people (one in three adults) in California have at least one chronic
condition. As indicated in a recent report, California’s Long Term Services and Supports (LTSS)
have been consistently described as fragmented, difficult to access and highly variable across
different regions (Mollica and Hendrickson, 2009). Fragmentation also makes it difficult to track
consumers’ use of service and to compare costs and outcomes within and across services. As
a result, consumers are often expected to coordinate a complex array of services and supports
offered by different providers from a range of home, community, and institutional supports with
disparate financing and eligibility requirements.
In addition to creating difficulties for consumers, information describing LTSS delivered by the
public and private sector in California is often unavailable or is only available for narrowly
defined services due to the multiple information management systems used by state
departments and federally required electronic reporting systems. This lack of integrated
information is a significant barrier to the evaluation of utilization, costs, and person-centered
outcomes and to the implementation of coordinated interventions to decrease waste, lower
costs, and improve outcomes.
In response to the need to evaluate and improve the delivery of LTSS in the State of California,
this report reviews resources, opportunities, and barriers for the establishment of a statewide
data “warehouse” to integrate LTSS data. The report presents findings from interviews of data
managers within the state healthcare departments, includes example models from statewide
efforts outside of California and countywide efforts within California, and provides a general
framework to consider in the establishment of a data warehouse in California.
A data warehouse is a system that has the capacity to collect/assemble, match, reconcile,
integrate, process, store and manage, examine, quality-assure, study, and model data across
existing systems and services. The purpose of a data warehouse is to release the potential of
the information that is collected by using that information to drive program and policy decisions,
analyze and reduce costs, provide information on effectiveness, and identify waste and fraud.
Data warehouse typology is classified into (1) independent data systems; (2) a data system with
common identifiers; (3) a hub and spoke data system, (4) a centralized system, and (5) a
federated system.
Data warehouse practices could be used to address cost management and service quality
initiatives. For example, the development of a comprehensive LTSS data warehouse that
incorporates data across programs and funding sources would enable California to examine
cost saving initiatives and enhance the delivery of LTSS. In addition, a comprehensive long
term care data warehouse may also enable the State to develop consumer profiles based on
actual characteristics of LTSS users. These consumer profiles could be modeled to identify
critical pathways and better complement an individual’s long term service and supports needs.
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In interviews with 23 data managers across eight departments within the California Health and
Human Services Agency, managers shared broad enthusiasm for the development of some
form of a long term care data warehouse that would support data linkages and offered
strategies for overcoming barriers and moving forward with a data warehouse.
The
respondents emphasized the great effort to integrate the existing data systems, which are of
varying types and vintages. Although a systematic, system-wide replacement of legacy
systems performed solely for the creation of a data warehouse would incur high costs if done de
novo, some departments are already in the process of updating their systems. Cost savings
from these improved data systems have potential to offset infrastructure costs. As systems are
updated there is an opportunity to standardize information before replacement systems are in
place.
One of the most challenging barriers to developing a data warehouse is the non-uniformity of
the media (elements and definitions) used for the data. While many data sets are electronic,
data from some programs are mostly in paper files. Data from services that are not in an
electronic format are essentially inaccessible – they can neither be efficiently matched nor
linked with other data. In order to make these data accessible and usable, resources will have
to be devoted towards creating new databases for data collection going forward and
transcribing/encoding existing paper records into electronic records.
A statewide data warehouse for LTSS delivery is feasible, but will require key ingredients to go
from proposal to implementation. These key items include: (1) building on promising practices
within and outside of California, (2) developing incremental goals to reach the long term vision,
(3) identification of resources for startup and ongoing support, and (4) leadership.
California has approaches in place that can serve as the foundation for a more extensive data
warehouse system. For example, the Department of Health Care Services, the deliverer of
California’s Medicaid program, already holds a significant amount of data in a data warehouse.
The California Office of Statewide Health Planning and Development (OSHPD) has in place
protocols that function across departments and guide external data use agreements, which
could be applied to requests for data use from a data warehouse. The state’s Institutional
Review Board (IRB), Committee for the Protection of Human Subjects (CPHS) of the California
Health and Human Services Agency could also be more broadly applied to requests to use data
from the data warehouse. Finally, the California Medi-Cal Research Institute’s approach to
letting researchers work behind the database firewall should also be assessed as a possible
approach. The processes and actual data warehouses within the state provide a platform with
which to build a comprehensive data warehouse. We recommend that California begin long
term care data warehouse planning with a comprehensive vision of what could be achieved
coupled with an incremental plan to start the process by building capacity.
Although the development of a data warehouse is a daunting task that will take time, a number
of instrumental steps should be taken to begin the process. The most important is to develop a
vision of where the state should go and map the most immediate steps to achieve the vision.
The form and content of a data warehouse are likely to change over time. Thus, a set of
reasonable goals that allow for technical changes (e.g., choice of centralized versus federated
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databases) and the addition of new data sets overtime is recommended. Allowing for the
evolution of goals will improve flexibility and add a tactical component to the implementation.
The plan must include strategies for data usage including how to integrate and how to
use/analyze the integrated data. This will require a plan for staffing for both technological
capacity and data analysis capacity. Recommended Steps to Develop a Data Warehouse
include:
1. A strategic planning process is necessary to agree on the vision and develop the steps
to build a data warehouse. It is anticipated that this process would take about 6 months.
a. Determine priorities for use of the data warehouse.
b. Garner agreement on definitions and decision rules for data entry for matching.
i. Begin the process by updating the Assessment Grid developed as part of
the California Pathways Project (See Appendix 8).
2. Identify specific operational steps needed to implement the data warehouse. (This
activity is expected to take 9 months.) Potential building blocks for a data warehouse
include:
a. Identify possible funding.
b. Clarify structure.
c. Agree on what would be in the data warehouse including initial priorities and
downstream additions.
d. Determined legal requirements/restrictions and the legal and policy frameworks.
e. Determine how security requirements would be addressed. (e.g., Conduct
privacy and security requirements audit)
f.
Assess each Department/program’s readiness and what would be required in
terms of data development for it to participate. Determine technical/data
management issues/considerations.
g. Determine approaches to ensure data integrity, reliability, and validity.
h. Develop a funding and sustainability plan to ensure continuation of the effort.
Identification and provision of resources from state government, including staffing and budget,
are key first steps. Initial resources could be through resource redistribution, federal grants, or
private foundational support of this concept.
Establishing core ongoing support for data warehouse goals across governmental decision
makers, providers, and patient advocates will ensure that the data warehouse continues. A
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strategy of drawing support and maintaining shared responsibility and access will be very
important to the success of a long term care data warehouse.
The benefits of developing a data warehouse that integrates fragmented information and makes
it available for use by policy makers, providers, and researchers are fundamental and obvious.
Although the challenges and barriers to developing a LTSS data warehouse should not be
underestimated, the potential positive outcomes are significant. As evidenced by the
stakeholder interviewers in this report, promising practices, and literature published over the last
several decades, the costs of collecting and managing siloed information are high.
Concomitantly, there is untapped potential to address these costs and improve services by
improving the management and productive use of data. California would benefit greatly by the
outcomes that a data warehouse could offer. Among these are assessing the effectiveness of
interventions for all users to better understand what works and what doesn’t work, improving the
state’s ability to identify and provide interventions for high cost users, improving the assessment
of quality and the relationship of cost to acute and long term care quality. Among the most
obvious cost saving outcomes is reducing duplication of effort by different providers who
must enter and manage the same data. In addition integrated data facilitates tracking
service use across settings to identify duplication and gaps in care. Finally, a data
warehouse will enhance the state’s ability to identify waste and fraud in the system.
As noted throughout this report, strong leadership will be needed to facilitate buy-in among key
programs to make the data warehouse a success. This will require reaching out, educating and
generating support from those most impacted by a data warehouse, including the many
stakeholders who stand to benefit.
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I. Introduction
Why a data warehouse?
According to a recent report by the California Health Care Foundation, more than one-third of
adults in California (36%)—or more than 9.5 million people, report having one or more chronic
conditions. Yet, California’s Long Term Services and Supports (LTSS), that many Californian’s
with chronic conditions rely on, have been consistently described as fragmented, difficult to
access and highly variable across different regions (Mollica and Hendrickson, 2009).
Fragmentation also makes it difficult to track consumers’ use of service and to compare costs
and outcomes within and across services. As a result, consumers are often expected to
coordinate a complex array of services and supports offered by different providers from a range
of home, community, and institutional supports with disparate financing and eligibility
requirements.
In addition to creating difficulties for consumers, information describing LTSS delivered by the
public sector in California is often unavailable or is only available for narrowly defined services
due to the multiple information management systems used by state departments and federally
required electronic reporting systems. This lack of integrated information is a significant barrier
to the evaluation of utilization, costs, and person-centered outcomes and to the implementation
of coordinated interventions to decrease waste, lower costs, and improve outcomes.
In its seminal publication Crossing the Quality Chasm, the Institute of Medicine (IoM)1,
characterized the challenge of maneuvering through the maze of health and LTSS as a
“nightmare to navigate” (2001, p. 4). The IoM report goes on to describe the enormous potential
of information technology to improve the quality of health care by making it more safe, effective,
patient-centered, timely, efficient, and equitable. Specifically, the IoM suggests that an
integrated, organized, and reliable information infrastructure is needed to coordinate care over
time and across providers and settings, measure performance and outcomes, test and support
evidence-based approaches, improve accountability, and make information available to a wide
range of stakeholders.
To facilitate evaluation and improve the delivery of LTSS in the State of California, this report
reviews resources, opportunities, and barriers to the establishment of a statewide data
“warehouse” to integrate LTSS data. The report includes examples of model systems from
statewide efforts outside of California and countywide efforts within California.
Data warehouse practices could be used to address cost management and service quality
initiatives. For example, the development of a comprehensive LTSS warehouse, that
incorporates data across programs and funding sources, would enable California to examine
cost saving initiatives and enhance the delivery of LTSS. In addition, a comprehensive long
1
Institute of Medicine, Crossing the Quality Chasm:
(Washington, D.C., National Academy Press, 2001).
A New Health System for the 21st Century,
1
term care data warehouse may also enable the State to develop consumer profiles based on
actual characteristics of LTSS users. These consumer profiles could be modeled to identify
critical pathways and better complement an individual’s long term service and supports needs.
The California Community Choices Project
This exploration of a potential California data warehouse fulfills one aim of the California
Community Choices Project (CCCP), an initiative of the California Health and Human
Services Agency (CHHS) funded under a five year Real Choice Systems Transformation Grant
by the Centers for Medicare and Medicaid Services (CMS). In addition to the data warehouse
study, the major objectives of the CCCP were to:
1. Conduct a comprehensive financing study of long term care that included
recommendations, to improve the State’s understanding of the financial and structural
barriers to increasing access to home and community-based services. This study,
Home and Community-Based Long-Term Care: Recommendations to Improve
Access for Californians, was completed in 2009;
2. Establish Aging and Disability Resource Connection (ADRCs) partnerships in two
counties to provide a coordinated system of information, referral and assistance for any
person seeking long term care services and supports; and
3. Launch a website focused on LTSS in California. In its pilot phase, the CalCareNet
website (www.calcarenet.ca.gov) features local services in Orange and Riverside
counties. It also provides statewide information about licensed care facilities and alcohol
and drug programs and a wealth of education and tips to help anyone learn about long
term care.
The guiding principle of the CCCP is to support choice and independence and to help people
with disabilities and older adults avoid unnecessary institutionalization. As part of this effort, the
project seeks to promote infrastructure development that increases access to home and
community-based long term care services. A major focus is the use of information technology
to facilitate the comparison of services, track outcomes and improve overall systems quality.
One approach is to explore options for developing a data warehouse system; this approach has
been used successfully in several other states.
Building on models from other states as well as promising practices within California, this report
identifies the components and steps necessary for developing a data warehouse. The report
explores different definitions of a data warehouse is, examines different models and promising
practices, discusses where California is in the effort to better integrate data, identifies barriers to
implementing a data warehouse, and recommends how California can move forward towards
implementation of a data warehouse. In the current fiscal crisis, rational policy and budget
planning is critical, but is impaired without the kind of meaningful and accurate data that a data
warehouse could provide.
Building on findings from the CCCP Financing Study
The current report builds on and complements important findings of the 2009 long term care
financing study that identified the financial and structural barriers that need to be addressed to
2
improve LTSS in California. Conducted by Robert Mollica, Ed.D., and Leslie Hendrickson,
Ph.D., that study identified a number of strengths as well as challenges that California leaders
confront in seeking to improve the delivery of LTSS. As noted in that report, in 2007 statefinanced long term care spending exceeds $10 billion annually, with 52% spent on home and
community-based services. At the same time, the programs that serve adults with physical
disabilities and older adults have separate and independent delivery systems and management
structures. The Finance Study noted that services for older adults and adults with disabilities
are organized by program rather than by person. This means that there are a number of
different LTSS programs that are funded and monitored by multiple state and local agencies
and are administered by a variety of organizations at the local level. Individuals needing more
than one service often have to locate and qualify for each program separately resulting in
unnecessary costs to both consumers and the system through duplication of effort. Because
those who access multiple services may not have their information shared, as Mollica and
Hendrickson (2009) note, they “shift between programs in complex passages resulting in costs
and consumer outcomes that are rarely studied since no one department is responsible for the
entirety of a person’s care and services” (p.2). A data warehouse would be one approach to
address this fragmentation.
Roadmap to a data warehouse
This report examines what a data warehouse could do to support the LTSS network in California
and discusses what is required for California to take such an initiative. The report includes:
1. Identification of currently collected data available to describe consumers of LTSS
including both electronic and paper files across health, social services, rehabilitation,
and support services.
2. Results of interviews with key stakeholders in eight different state departments and
offices.
3. Specification of a data warehouse, including a review of promising practices in several
other states as well as lessons learned from data integration efforts in California.
4. Summary of technical aspects and risks and benefits of developing a data center as well
as the barriers inherent in developing a data warehouse.
5. General recommendations for next steps towards the development and maintenance of
a data warehouse.
Taken together, these findings can provide direction to developing a data warehouse for the
integration of LTSS delivery in California.
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II. Study Overview
Goals for Study
The purpose of this study was to identify the opportunities, models, and barriers to integrating
LTSS data. These data may come from a range of service and support programs that can
provide valuable information on consumer demographics, cost and service utilization, and
clinical assessments in order to improve service delivery and identify potential cost efficiencies.
The overarching goals of this study were to:
1. Define what data are available that describe users of long term services and supports in
California; across state, federal and locally funded health care and social service programs,
including Medicare, Medicaid, Older Americans/Californians Acts, Rehabilitation Act,
Lanterman Acts and others.
2. Identify promising practices in other states that could inform California’s efforts to describe
and serve consumers of long term services and supports.
3. Identify how California can access and use data to inform state policy decisions for health
care, public health, preventive health and long term services and supports.
4. Identify data analysis modeling opportunities using integrated data warehouse in the state.
5. Identify barriers that would need to be overcome in order to make a data warehouse
available in California.
Scope of Work
The scope of work outlines the tasks that were conducted to accomplish the study goals. A key
task was to conduct an inventory of available electronic or manual systems that include health
and social services data. This inventory identifies how data are gathered, mapped, and
reported. The inventory provides an overview of the state agencies and departments and their
respective roles in managing the information. In aggregating the various data collection
systems, gaps in and duplicative overlap of information is anticipated. Identifying gaps and
reducing unintentional duplication of data expected to enhance the overall accuracy in providing
supports and services to individuals needing LTSS. A comprehensive LTSS data warehouse
can potentially include qualitative and quantitative data that describe the individual, the service
providers, the programs and services. A strong incentive to develop a LTSS data warehouse is
the capacity to crosswalk the quality of program and services with corresponding cost data to
monitor and enhance the effectiveness of long term care supports.
The scope of this report was to accomplish the following tasks:
1.
2.
3.
4.
Identify lessons-learned from the Long term Care Integration planning at the state and
local level that could inform a data warehouse initiative
Identify lessons-learned that are applicable to California from other states
Identify promising practices/current data integration initiatives in CA
Identify technical aspects and potential state benefits of a data center:
a. Central repository: data available for purposes of research, state policy and
population trending
4
5.
6.
7.
8.
b. Integrated longitudinal service utilization data: program level
c. Case management and service coordination at the client level
d. State and local budgeting across the data silos
Identify costs and consequences of not having a data warehouse.
Identify and work with key stakeholders to identify and prioritize key needs and priorities
for a data warehouse (client, provider, state level)
a. Example: How to better identify and serve individuals at risk of costly nursing
facility care.
b. Example: How to identify and better serve individuals who are getting duplicate
services
Identify barriers to establishing and maintaining a data warehouse (client, provider, state
level).
Provide recommendations for establishment of a data warehouse in CA, including
activities and timeline.
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III. Study Methods
Existing data resources
Based on shared experience and internal discussions with data managers and data users, the
research team identified a number of data sets collected by California and the federal
government covering programs for specific populations, institutions providing healthcare,
programs offering LTSS, and conditions that are tracked by public health agencies. Personlevel data resources identified covered insurance (Medicare and Medicaid), services for
disabled individuals (e.g. In-home supportive services), required evaluations by long term care
sites (e.g., Minimum Data Set for nursing home residents), all-payer data for hospital
encounters (e.g., inpatient discharges, emergency department encounters, and ambulatory
surgeries), and statewide registries (e.g., state cancer registry and state death statistical master
file). We specifically excluded other routinely collected data by the state (e.g., unemployment,
taxes, and driver license) that might provide potentially useful information regarding financial
resources or supplemental personal information (e.g., height and weight as reported on the
driver license) as there is little or no precedent for linking such data to healthcare or LTSS
information.
After compilation of the list of available data sources, each data source was reviewed for
existing publicly available data dictionaries and documentation for data requests. For each data
set, we provide information on the target population in the data set, the data elements collected,
and the published approach to requesting data. This information was later supplemented by
stakeholder interviews, where data managers were able to discuss data uses and prior
experience with the linkage of data collected and managed by different state agencies.
Interviews with data managers
Interviews were conducted with 23 data management representatives from eight departments
within the California Health and Human Services Agency. The intention of these interviews was
to establish an understanding of the current environment and responsiveness to an integrated
data warehouse. The team reviewed past and current initiatives that support data integration
within the California state health bureaucracy; and considered the potential of these initiatives to
inform the long term care data integration effort in California. (Please see Appendix 2 for the
structured interview questions.) Each interview lasted approximately one hour.
Identifying promising practices in California and elsewhere
A web-based search was conducted to glean information about promising practices in other
states. The team also reviewed studies of California system development efforts including the
Center for California Long Term Care Integration, San Mateo’s uniform assessment pilot, Aging
and Disability Resource Connection partnerships, the San Diego Long Term Care Integration
program, the California Medi-Cal Review Institute, and the California Statewide Office of Health
Planning and Development. Finally, the team reviewed literature on data warehouse models
and approaches; and identified and reviewed examples of data warehouse efforts from other
states.
6
Model descriptions include details on how a data warehouse implementation can support the
statewide LTSS infrastructure. These models and examples provide some of the details
necessary for the development of a LTSS data warehouse and offer insights in the amount of
resources and degree of difficulty such an undertaking will require.
Feedback from the CCCP Advisory Committee
During the project, three presentations were made to the California Community Choices
Advisory Committee to inform members of plans for carrying out the study, to describe progress
made on the work plan and to get input on findings and suggestions on next steps.
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IV. Defining the LTSS Data Warehouse
A data warehouse is a system that has the capacity to collect/assemble, match, reconcile,
integrate, process, store and manage, examine, quality-assure, study, and model data across
existing systems and services for consumers of LTSS. The purpose of a data warehouse is to
release the potential of the information that is collected by using that information to drive
program and policy decisions, analyze and reduce costs, provide information on effectiveness,
and identify waste and fraud.
The target population
Historically LTSS have been designed to serve older adults and individuals with disabilities.
Services for these populations are provided through largely distinct delivery systems. These
populations, which have been referred to as aged, blind, and disabled (ABD) or as Seniors and
People with Disabilities (SPD), access LTSS through a variety of different programs and
entities, including Medicaid waiver programs, area agencies on aging (AAAs), mental health
agencies, independent living centers, county social services agencies, regional centers, and
health providers. These services cover an array of supports for older adults, adults with
physical disabilities, and adults with developmental disabilities, as well as children (with and
without disabilities). The scope of the integrated data warehouse will be defined by the target
LTSS population, focusing on older adults and adults with disabilities.
Needs for a long term care data warehouse
Many consumers of LTSS have multiple chronic conditions and needs.
For each
client/participant, the data warehouse should capture integral elements of the individual’s
characteristics, needs, care, and outcomes. These can be defined across a number of
measurement domains in order to provide programs with information regarding eligibility,
processes of care received, and relevant clinical assessments to determine outcomes (success)
measured clinically or monetarily. These domains include:
1. Demographics – gender, age, race/ethnicity, income, wealth, employment status, family
status (married, dependents), area of residence, citizenship, health status;
2. Services and supports – identification of appropriateness and receipt of processes of
care, including devices or prosthetics;
3. Outcomes – assessments of outcome, which might include mortality, functional
assessments, adverse outcomes, and intermediate outcomes; and,
4. Utilization – overall evaluation of all service delivery with quantification of costs (or
normalized values per service) for care received by a client / patient / participant.
In preparing the data warehouse, each constituent data set will identify some, but not every
element described above for each consumer. Across data sets, there likely will be unintentional
duplication of information collected, such as demographics. Programs will have overlap in some
services and there will be gaps in services between some programs.
8
Depending on the end-user of the data, different data elements will have greater or lesser
importance and relevance. Data users include:

Case managers, Service Coordinators/Peer Mentors who assess need, authorize and
coordinate services must to know what services a consumer is eligible to receive, what
services are currently being received, and which providers currently are involved in a
consumer’s services and supports.

Policy makers are interested in how to ensure that services are reaching those in need,
that they are cost effective, and that they are achieving expected outcomes.

Consumers need information about eligibility for and availability of services2.
In California, as well as in other states, many LTSS function as separate and largely
independent entities that run the gamut from small stand-alone entitles to large state
organizations. Each collects and maintains information to support its specific service functions
and to fulfill its business and reporting requirements (see Appendix 5 for summaries of the
types of data and how these various data sets are accessed). Under these circumstances,
much of the information to inform data users is unavailable in the aggregate. Rather information
is measured, collected, managed, and kept separate by different programs. Furthermore, these
programs use different legacy data systems and have varying definitions of similar data
elements operating as data silos. These data silos are stand-alone data receptacles that can be
connected with other data only through extraordinary effort.
Although because of complex needs, consumers may participate in several services and
programs at the same time, or transition sequentially among different services, formal sharing of
information across LTSS entities is uncommon and linking consumer data across services is
rarely done. Case managers, service coordinators and peer mentors within each entity typically
operate independently of each other, neither routinely sending nor routinely receiving service
information outside of their own program or organization.
Thus, when an individual receives services from different entities within the LTSS network,
service and support information is not shared to aid in service planning. This results in
duplicative effort and increased costs to collect the same information, which may delay the
timely delivery of services to the individual, with potentially adverse outcomes for the consumer.
Even if these independent entities may excel in providing their core support functions, the
inability to share information across programs may result in overlooking the larger objectives of
2
This report focuses on a data warehouse developed for the purpose of administrative management of
data from diverse programs. It is assumed that integrated data will also improve care for consumers and
some of the information described touches on consumer outcomes. However, improved consumer
access to information is not the focus of this report.
9
providing and coordinating a repertoire of LTSS to individuals with multiple chronic conditions
and extensive needs.
Defining the data warehouse for long term care
The broad concept of a data warehouse is to integrate information from disparate data systems
so that information can be managed across multiple entities. Information management is an
inclusive term and implies not only electronic systems, but paper based systems as well.
Although a data warehouse may imply an integrated system where information is shared across
an organization or network, this is not always the goal of such a system. For example, a data
warehouse may include some but not all relevant data or it may focus on a specific aspect of
data. There are many examples of data warehousing in the private sector, including retail
supply chains, financial services, manufacturing, and many other industries.
Data warehouses are used to integrate data across an organization or across a network of
organizations. While most entities will have some mechanism to manage information within
individual programs, sharing information within and across organizations and networks presents
many potential infrastructure challenges. Sharing information requires a common language so
that data can be linked and compared. A common language can allow data elements to be
cross-walked, comparing compatible measures and metrics. Linking data elements may be
done by simply having a common identifier such as a social security number or California state
ID number that uniquely identifies the individual across data sets. If the information can be
connected or linked, a more complete picture of characteristics of the LTSS users, the services
they receive, and the cost of services can be established.
Defining the LTSS data warehouse begins with identifying two key elements: (1) the support
goals of the service entity and (2) the specific capabilities that will be utilized. Addressing these
two specific elements will determine how information is managed and shared; and will identify
the consumers and programs that the LTSS data warehouse will support.
Subsequently, the data warehouse architect(s) and users of the data will define the support
functions that will be performed. An integrated LTSS data warehouse can provide essential
business and service information to deliver a more continuous range of services. These
enhancements can include creating decision support
An integrated long term care
analysis, enhancing the coordination of care,
data warehouse can provide
streamlining support planning and service provision, and
essential business and service
providing
performance
metrics
and
reporting
information to deliver a more
mechanisms. These features are made possible by the
continuous range of services.
richness of the integrated data, adding functionality that
would be absent if each dataset remained separate.
Evaluation is a core aspect of service provision, different types of evaluative tools are available
and employed in a variety of settings. Because a Uniform Assessment Instrument (UAI) or
Uniform Assessment Tool (UAT) and an Integrated Information System may be key components
of a data warehouse, it is important to define both. A UAI/UAT is the standardization of
assessment components by using common definitions, questions, and measures as information
is collection rather than having each program collect its own unique assessment information.
10
The nursing facility minimum data set used as part of the resident assessment instrument is an
example of a uniform assessment instrument. An Integrated Information System (IIS) has been
defined as an array of information sets that are linked together to better capture, organize, and
coordinate data sources (Shugarman and Zawadski 2005). An IIS can be developed by using a
UAI/UAT or by combing and cross walking data from multiple sources.
Data warehouse models
Different data warehouse models may be employed, emphasizing different architectures
resulting in a variety of modalities of data sharing, flexibility, and security. Examples of how
data might be linked include the five data warehouse models that are described below:
(1) independent data systems,
(2) a data system with common identifiers,
(3) a hub and spoke data system,
(4) a centralized system, and
(5) a federated system
Independent data systems are designed to primarily support the function of a single entity or
organization. The information collected is not intended to be utilized outside the entity or
organization. This entity might be a service provider operating as a free standing agency or a
specific program that does not share information outside the specific program. .
A data system with common identifiers allows participating entities to link and share
information, but may not be a streamlined process. For example, multiple agencies collecting
specific client and service information would be able to link information through a common
identifier such as a social security number or state assigned identification number. The data
system itself would not necessarily be a single shared electronic system.
A hub and spoke data system moves toward an integrated system where information is
collected and staged into a central data warehouse, but information sets are created to meet the
specific departmental or functional needs within an organization.
A centralized data system is similar to a hub and spoke data warehouse model where
information is collected and staged to a central data warehouse, but users and applications
directly access data from the data warehouse. The experience for a user may not differ from a
hub and spoke model, but there is greater potential to link data across different data elements.
A federated data system is considered a practical approach to an integrated data warehouse,
whereby existing data across the network is not consolidated onto a centralized database, but
common data elements are linked such that users and applications can access information
across systems.
A federated approach may be appropriate for complex information
infrastructures with various data warehouses and legacy systems, but may be limited compared
to a centralized data warehouse model.
11
The current state bureaucracy manages and shares data in a way that resembles the first two
data systems, viz. multiple, free standing systems, some of which have shared client/participant
identifiers that can be used to uniquely identify client/participant records and link across data
systems.
Ultimately, it is important to understand that an integrated data warehouse will serve as a
valuable tool only if it has a clear purpose and is utilized appropriately to support the integration
of LTSS data. Implementation strategies can only be developed after the key decisions are
made about who will be served and what model will be used. Determining the “how” of
implementation will need to consider the opportunities, resources, and barriers that exist.
12
V. Existing Data Resources in California
The State of California routinely collects a great deal of healthcare and other types of program
and service data. These data range from all-payer databases to databases detailing statesponsored healthcare programs. Some data collected are mandated by the federal government
and require permissions from the federal bureaucracy for their use. These data sets should be
considered as existing resources in the development of an integrated long term care data
warehouse in California.
Table of example data resources in California
Type of Database
Database Name
Agency
Patient Discharge Database
Emergency Department Database
Ambulatory Surgery Database
California CABG Outcomes Reporting
Program
OSHPD*
OSHPD
OSHPD
Minimum Data Set (MDS)
Outcome and Assessment
Information Set (OASIS)
CMS**
All Payer Databases
Hospital Care
OSHPD
Inpatient Post-Acute,
Sub-Acute Care, and
Custodial Long Term
Care
CMS
Disease Registries
California Cancer Registry
CDPH***, Cancer Surveillance
and Research Branch
California HIV/AIDS surveillance data
CDPH, Office of AIDS
Death Statistical Master File
CDPH, Office of Vital Records
Birth Statistical Master File
CDPH, Office of Vital Records
Fetal Death Statistical Master File
CDPH, Office of Vital Records
Birth Cohort File
CDPH, Office of Vital Records
California Medicaid Enrollment and
Claims - Medical
California Medicaid Enrollment Claims
- Mental Health
Medicare Enrollment and Claims
Department of Health Care
Services
In-Home Supportive Services
Department of Social Services
Vital Statistics
Public Sector Programs
Insurance
Department of Mental Health
CMS
Other Services
13
*OSHPD – Office of Statewide Health Planning and Development
**CMS – Centers for Medicare and Medicaid Services
***CDPH – California Department of Public Health
This list is not and cannot be an exhaustive list of all relevant programs. (See Appendix 5:
Survey of California Patient Data Resources for more detailed examples of data collection in
California) Rather, these programs are examples of well-known and well-used files where
researchers and policy makers have extensive prior experience.
In the case of many public sector programs, information collected consists primarily of eligibility
and enrollment information. In the case of the databases reported above, all contain records
with evaluations and utilization information. Excluding public sector programs that do not
routinely collect evaluation and utilization information makes the above compendium more
manageable and does not exclude the inclusion of enrollment in these programs.
To examine the similarity and differences in how several of these programs assess consumer
characteristics, and to explore what would be involved in cross walking data from different
assessments, researchers developed a grid of assessment measures as part of the California
Pathways Program. The grid, the Comparison of Assessment Tools,, is described in Chapter
Two of the California Pathways Final Report (2008).3 Chapter Two, including the comparison of
assessments from 13 different programs can be found in Appendix 8. Among the assessments
included are California’s In Home Supportive Services (IHSS) program, Multipurpose Senior
Services Program (MSSP), California Assisted Living Program, and San Mateo, and Santa
Rosa assessment tools. The crosswalk also includes MDS and OASIS national assessment
tools and assessment tools from selected states.
3The
Report can be found at
http://www.dhcs.ca.gov/services/ltc/Documents/CA_Pathways_MFP_FinalRpt.pdf.
14
VI. Interviews with California State Officials
During July and August of 2010, the research team performed a series of structured interviews
with 23 data managers from eight healthcare related departments and offices from within the
California Health and Human Services Agency (CHHS). The interviews were meant to gauge
the current state of data collection, management, and dissemination at these institutions; and
the experience with and attitudes towards data integration efforts, including the development
and creation of an integrated data warehouse. Most departments provided more than one
representative at these interviews.
The interview participants were from:
(1) Department of Developmental Services (DDS)
(2) Department of Social Services (DSS)
(3) Office of AIDS, Department of Public Health (CDPH)
(4) Department of Health Care Services (DHCS)
(5) Office of Statewide Planning and Development (OSHPD)
(6) Department of Aging (CDA)
(7) Department of Rehabilitation (DOR)
(8) Department of Mental Health (DMH)
In addition, the team interviewed researchers from the California Medicaid Research Institute
(CaMRI) at the University of California San Francisco about their experience with creating a
static research data warehouse of multiple linked healthcare databases.
The following section provides a detailed description of the responses to the interviews.
Data managed by surveyed programs
Most of the departments represented in the interviews are responsible for multiple types of data
from several different types of programs. Some groups collect both facility-based care and
home and community-based services. For example, DDS oversees data from the Regional
Centers as well as 24-hour care facilities. DOR oversees data from the vocational rehabilitation
program, Independent Living Centers, Assistive Technologies, Traumatic Brain Injuries and
Older Individuals who are blind. Consumers that they serve can be in one of these programs or
in several simultaneously.
Data inclusion criteria are generally related to the type of program and the respective eligibility
requirements. Sometimes there are specific data sets carved out for particular programs (e.g.,
CalOptima, the county organized health plan in Orange County, California; not only does it have
its own data set, but it has its own data system as well). In some instances, certain types of
data were excluded (e.g., health care data exclusions because of HIPAA privacy mandates).
15
Similarly the types of encounters that are tracked within the different databases varied. Some
encounters are reported only when a specific service is received or at intake/entry into the
system (e.g., hospital visits reported to OSHPD, calls to case management); others have
reporting cycles (e.g., monthly, quarterly or annual summary reporting requirements). Many
report different types of encounters in different databases. In contrast to encounter data some
databases record assessment information, such as the IHSS functional assessment.
Assessment data tend to be based on specific collection schedules. In the case of IHSS, based
on statutory criteria, assessments occur every 12 to 18 months or when the client has a change
in condition. The variability and non-uniformity of the data sets present potential challenges in
integrating the information into a long term care data warehouse.
Reliability and validity of currently collected data
When asked about the reliability and validity of the data collected; respondents indicated that
there were different standards of validation. Most were not aware of any efforts to evaluate the
accuracy of their data and had no basis upon which to judge how reliable the data they used
were. A few, however, had standardized data and processes to evaluate data quality. For
example, OSHPD performs periodic audits to ensure data completeness and accuracy of a
specific subset of data elements. Some of those interviewed believe that certain types of data
(e.g., demographic data) are reliable and valid; whereas other areas such as data on service
utilization might be less so. Some of the respondents mentioned that there may be variations in
interpretation of the information collected during data entry. Moreover, as some programs are
very consumer focused, files tend to be narrative (viz. “free text”) and include elements that are
individualized according to the needs of each consumer. Some interviewees reported that
departments use a variety of different metrics and measurement tools.
Moreover,
programs/organizations may collect standardized items such as functional impairments (e.g.,
ADLs/IADLs), but may evaluate or measure these items differently (e.g., yes/no, Likert scale,
numerical value, etc.) or they may phrase questions about similar items somewhat differently.
A common response to the question of data quality was that the data were “getting better.”
Some of the respondents also noted that they receive data from a number of different sources;
for example, the CDSS data system, Case Management, Information and Payrolling System
(CMIPS) II, which is expected to go live soon will include 125 interfaces (e.g., Treatment
Authorization Requests [TAR], claims data, unique Medi-Cal identifier, death records, public
health, etc.) Thus, these data systems are extremely complex.
In addition to complexity, other issues identified were that much of the data come from local
programs so that the data go through several iterations from initial collection and entry at a local
program where data are aggregated (in some programs) and submitted to the state-level office
or department. Several programs (most typically the waiver programs) noted that they do not
use electronic data. Rather program data are collected and housed, in hard copy files, at the
local service delivery site.
Current approaches to sharing, matching, and linking datasets
Apart from public record requests, which appear to be fairly routine to manage within state
agencies, data sharing is often a highly complex process that requires Interagency Agreements
(IAs) including specific protocols established between the security offices from each
16
participating department. It is not unusual to encounter a variety of restrictions put in place to
safeguard consumers. For example, the California Medical Information Act spells out
requirements for releasing confidential patient information.
(See http://www.emotrics.com/people/milton/practice/privacy/confidentialitymedinfoact.html)
Data sharing includes routine requests as well as ad-hoc requests. While some data requests
are routine, these types of requests are infrequent. For example, DHCS has had a Medi-Cal
Data Warehouse (Management Information System/Decision Support System [MIS/DSS]) for
the last three years, which regularly receives routine provider and eligibility IHSS and Short
Doyle (California’s Community Mental Health Services Program) data. While there has been a
recent increase in requests for access to the IHSS and Short Doyle data, overall requests to link
the IHSS and Short Doyle data are infrequent.
300 users, primarily DHCS staff, currently have access to the Medi-Cal Data Warehouse. In
addition, the data warehouse also processes two or more significant complex data requests per
month which require assistance from the MIS/DSS contractor. In addition to routine requests, a
few departments also receive a high number of ad hoc requests for data use or data sharing.
For example, OSHPD receives “50-100 requests annually.” Departments that received multiple
requests typically have a data use agreement (DUA) process that delineates how data are to be
used and for how long. The DUAs also varied depending on whether the request is internal
(within state government, which is usually handled through IAs or external. Data sharing
requirements are also delineated under state statutes including the Information Practices Act
(IPA). Provisions of the IPA include a requirement that “all planned releases of personal
information to the University of California (UC), or to a non-profit educational institution
conducting scientific research, be reviewed and approved by the Committee for the Protection
of Human Subjects (CPHS) of the California Health and Human Services Agency (CHHS).”
Requirements for external access to data include that the requesting agency is a non-profit
educational institution and that the academic entity define the minimum data necessary, receive
approval from the CPHS, and ensure computer security and maintain confidentiality.
In contrast to these requirements, some departments/offices rarely or never receive data nor do
they receive requests for data either from within or from outside of state government
Several respondents noted that, given high workloads, and sometimes low pay-off, there are
disincentives to data sharing. In addition to sharing data across departments, some
respondents described processes for addressing requests from outside investigators for data
related to research studies. For example, “state law limits entities which may receive
confidential patient data to specified state government entities (i.e., CDPH and DHCS), local
health departments, eligible hospitals, federal government entities (i.e., Centers for Disease
Control and Prevention and CMS), and other eligible entities (i.e., educational institutions).
Also, OSHPD reviews the measures taken on a case-by-case basis to ensure adequate privacy
protection and security of the data. More common functions for these agencies than data
sharing was releasing aggregated data in the form of summaries or reports.
17
Support for creation of a state data warehouse
Respondents were supportive of a data warehouse in general terms but, they also noted the
importance of considering what is required to implement and maintain a comprehensive data
warehouse. In addition to cost including opportunity costs, building a data warehouse requires
ongoing staff and resources to sustain the effort.
Identified barriers to establishing a data warehouse
Respondents identified a number of potential barriers to developing and implementing a data
warehouse. These included privacy and security concerns such as ensuring confidentiality and
the need to protect the data from being breeched. There were also concerns about political
sensitivity reflected in questions of how data might be used (e.g., to make decisions to cut
programs). Related to this concern was the fear that departments would perceive a data
warehouse as a loss of control over their own data. Not only would control of the data be
elsewhere, those who had access and opportunities to interpret the data might not understand
or correctly interpret nuances and implications.
Also, respondents noted, that based on past failures, it has become very difficult to get any IT
project through the state system with technical costs analyses and reviews at various levels
within such entities as the Department of General Services, the Department of Technology
Services, Department of Finance, etc. Respondents also pointed out that data sharing was
seen as a “no win.” If something goes wrong, those who authorized or supported the effort may
be blamed, whereas the converse was not true—there was little credit for data sharing efforts
that were effective. Thus in addition to lost opportunity costs for efforts that could be focused in
other more immediate areas, there is little incentive because of the lack of rewards and
recognition if it goes well and the potential for significant sanctions if it does not go well.
Moreover, given heightened anxiety over the state budget deficit and lack of resources, there
was concern over the anticipated high startup costs that would be needed for both hardware
and software given the state’s old legacy systems.
Other concerns included at least one well publicized data breech that— not surprisingly— led to
reactive responses by the legislature. Of course with any type of data sharing the Health
Insurance, Portability and Accountability Act (HIPAA) is raised as a significant barrier.
Decentralized authority for data decisions was also identified as a problem. Within the state, the
focus is on achieving organizational outputs with an unintended consequence that no one
owns/is responsible for cross-department efforts such as linking data. Similarly, within each
department/office, the need to execute data use agreements and data release agreements is
time consuming and allocating resources to these activities is often a low priority. Given a
dearth of resources and the state budget problems, it is not clear where the funding would come
from for data integration work across state departments. It would likely require significant
funding outside the state general funds.
Other barriers discussed briefly above include the lack of data capacity among some
departments/programs to transmit data into a data warehouse. (e.g., waiver programs that rely
on decentralized paper files). There is great variation among departments/programs in their
data collection, data entry, and data storage processes. A number of programs would need to
start from scratch to develop electronic data capacity and build their system going forward.
18
Even among sectors which have well developed internal data systems such as managed care
organizations, requirements for collecting and sharing data are limited. As one respondent
noted, there are large information gaps in several statewide sectors including residential care as
well as managed care.
Another significant barrier was lack of awareness among decision makers of the need for and
benefits of a data warehouse. Moreover, in terms of priorities, when programs are at risk of
being cut or closed, data development might seem like an unnecessary luxury. It was
recognized among many of the respondents that it is a large undertaking to build a data
warehouse. To be successful, there must be strong support for the initial investment as well as
willingness to invest sufficiently to sustain the warehouse for the long term.
Summary of findings
In general, those interviewed shared broad enthusiasm
One of the most challenging
for the development of some form of a long term care
barriers is the non-uniformity
data warehouse that would support data linkages. The
of the media (elements and
data managers noted a number of challenges and
definitions) used for the data.
offered strategies for moving forward with a data
warehouse. The respondents emphasized that the current state of data fragmentation will
require great effort to integrate because the existing data systems were built unsystematically
within diverse programs from the bottom up. As a result, a great deal of variation exists in the
content of available data and how the data are collected. In addition, the various data systems
are of disparate vintages.
Many of the legacy systems currently in use are outmoded. Their replacement and associated
costs cannot be justified solely for the purpose of facilitating the creation of a data warehouse.
However, some departments are already updating their systems, presenting an opportunity to
implement designs that could facilitate the future creation of a future data warehouse. While
some systems are 20 years old, others (e.g., CMIPS) are dynamically evolving with new
updated approaches that are currently being built and piloted. It is important to recognize that
the timing of these updates is important. As systems are updated there is opportunity to
standardize information to make them more consistent with other related data systems. This
task of standardization becomes more difficult once the replacement systems are in place.
One of the most challenging barriers is the non-uniformity of the media (elements and
definitions) used for the data. While many data sets are electronic, data from some programs
are mostly in paper files (e.g. waiver programs, Independent Living Centers, (ILC), non-MediCal programs provided by non-profit organizations, and others). Data from services that are not
in an electronic format are inaccessible – they can neither be efficiently matched nor linked with
other data. In order to make these data accessible and usable, resources will have to be
devoted towards creating new databases for data collection going forward and transcribing
paper records into electronic records.
California does have in place approaches that offer a foundation upon which to build a more
extensive data warehouse system. For example, the Department of Health Care Services, the
deliverer of California’s Medicaid program, already holds some data in a data warehouse. In
19
addition, OSHPD has in place protocols and agreements that could function across departments
and guide external data use. These could be applied to requests for data use from a data
warehouse. The state’s (Institutional Review Board), Committee for the Protection of Human
Subjects (CPHS) of the California Health and Human Services Agency could also be more
broadly applied to requests to use data from the data warehouse. Finally, CaMRI’s approach to
letting researchers work behind the firewall should also be assessed as a possible approach.
20
VII. Long Term Care Data Warehouse Initiatives in Other States
State data collection initiatives have developed from various quality improvement, cost
reduction, care coordination, and person-centered initiatives (such as federally-funded Real
Choice and Money Follows the Person, as well as state funded initiatives). These initiatives
serve different purposes, but ultimately seek to improve consumer access to long term care
supports and serves and allow older adults and persons with disabilities to live as independently
in the community as possible.
The following section describes examples from states that have developed data warehouses to
enhance the delivery and management of long term services and supports: Oregon,
Washington, Minnesota, and Vermont. These examples provide insight into prospective
integration of information across different long term services and functions. It is recognized that
each state has developed an information system to meet the needs in their respective state and
are at various stages of implementing an integrated data warehouse. Moreover, based on
sheer size alone, California is expected to have unique challenges in developing a data
warehouse. It should also be noted that at the present time (2011), these integrated state data
systems do not include Medicare.
Oregon ACCESS
Oregon has been one of the early leaders in developing a comprehensive system that
integrates assessment, eligibility, and claims in to one system. Under this development initiative
around the year 2000, Oregon developed the Oregon ACCESS (Automated Computer Capture
and Storage System). This system was integrated into the state’s Department of Health
Services’ information management infrastructure. Seniors and people with disabilities are the
target population that the Oregon Department of Human Services (DHS) serves. The
integration process involved combining data from over 70 databases into a centralized,
consolidated database. Over the past decade, Oregon has continued to enhance and update
their system, adding features, improvements, and building tools onto the Oregon ACCESS data
warehouse to support the long term care functions in the state.
One of these long term care functions of Oregon’s DHS is an automated screening tool called
the Client Assessment Planning System (CAPS). The CAPS system covers three domains: (1)
assessment
(ADLs
and
full
assessment);
(2)
client
information
(diagnosis,
strengths/preferences, risks/goals, personal); and (3) service planning (authorized services,
providers, hours). By collecting and centrally capturing client information, unnecessary
duplication of information is avoided and there is less risk of error occurring because of multiple
entries and linking errors, thus improving the accuracy of the information. The integration of
eligibility determination and service planning allows each client to be matched up with the
appropriate services and supports; whereas a manually developed support plan might
unintentionally omit some services and supports due to limited of case manager/coordinator
familiarity with certain programs.
The Oregon ACCESS is an example of a centralized data warehouse model that supports and
enhances the state’s long term care infrastructure by consolidating information across different
data repositories into one central system. This system created almost 10 years ago is still used
21
and has been able to evolve and adapt to the current needs of the state and its long term
support programs.
Washington State CARE
Faced with a large budget crisis in the 1980s and 1990s, decision makers in Washington State
chose to invest in information technology infrastructure efficiencies. This ultimately resulted in
an assessment process that is automated and applied to all recipients of home and community
based services. Washington State’s system is based on and is similar to Oregon’s ACCESS,
with the initial development process starting at the beginning of 2002. The Washington system
supports the Comprehensive Assessment Reporting Evaluation (CARE) Tool, a computer
based assessment tool created to assess and develop service plans for long term care clients.
Washington’s objective was to implement legislative mandates to develop an inter-rater reliable
tool that accurately measures medical, cognitive, behavioral, and personal care needs.
CARE assessments are performed on a laptop with the stand alone assessment tool that is
conducted in the field. Support plans can be developed in the field. The information is
synchronized with the state’s central database when the laptop is docked back at the agency
office. Assessments are performed by social workers or registered nurses in the field in a
client’s home or in a nursing facility. The system is designed so that all data fields can be
queried by users from their locations. Assessment information can be compared to payment
data. Even if multiple providers perform the assessment, all the information is captured just
once and does not need to be reentered thus the client/participant avoids duplication of
assessments and providers do not unnecessarily conduct multiple assessments.
While this is an example of a centralized data
In Washington State, having
warehouse infrastructure, what was learned from
these data allowed them to
examining Washington State’s development efforts was
conclude that for every dollar
the investment and buy-in that was needed to build such
invested in their care
a system. Washington took the initiative to make
management program, three
investments to develop, manage, refine, and sustain
dollars were saved in medical
their system such that it has become a model of a
care costs.
promising long term care support system. Despite initial
reservations and push-back to take a significant systems change approach, the ultimate results
from advocating for a support system is realized by those staff and case managers who perform
the assessment today. Their approach in standardized assessments and a centralized data
warehouse support system has allowed the state to develop more consistent and effective
service plans and has enhanced its ability to conduct system wide continuous quality
improvement. The state contracts with 13 local Area Agencies on Aging for services including
care management for home care clients as well as nursing services and caregiver training.
Washington is able to use this system to compare costs, test interventions, and glean
information on consumer outcomes and cost outcomes. In a presentation at a California
conference in 2008, they described a multi-year pilot program, in which they linked their LTSS
assessment data with Medicaid health care utilization data to identify the most expensive
Medicaid clients. They then compared the outcomes of those receiving the intervention, which
was designed to improve management of chronic conditions, to a control group using their
22
linked data system. Using these data, they were able to conclude that for every dollar invested
in their care management program, three dollars were saved in medical care costs.4
Minnesota MNCHOICES
Minnesota is currently implementing their universal MNCHOICES instrument which assesses
multiple long term care support domains to develop a client-centered support plan. This
assessment instrument is a broad initiative that incorporates all ages and disabilities addressing
eligibility, payment, and case management needs. MNCHOICES will replace all other
assessments in the state and will be used across the state’s Medical Assistance State Plan long
term care services and home and community-based waivers.
The MNCHOICES assessment instrument is intended to be a web-based tool to collect and
share information across the state’s long term care services and home and community-based
waiver programs. Minnesota is refining their tool and plans to pilot their implementation and
data warehouse support system. In visioning the comprehensive assessment instrument, the
state planned and mapped out the data warehouse infrastructure to the assessment tool.
The MNCHOICES is an example of a data warehouse system to support an initiative with a
broad mandate to integrate old, young, and disabled populations. MNCHOICES will be able to
consolidate the various assessment tools into one comprehensive assessment instrument
supported by a centralized data warehouse system. As such, it faces a distinct challenge to
successfully implement a system that merges disability, aging, and children into an integrated
data warehouse.
Vermont Choices for Care
Vermont’s Department of Disabilities Aging and Independent Living uses a commercial product
to collect client information, develop care plans, and perform assessments. The product is the
SAMS database, a web-based tool that is used to manage Vermont’s Choices for Care
program. SAMS is a human services information management product, used by similar social
services agencies around the country. Vermont’s Choices for Care program aims to reduce
institutionalization through increased access to HCBS for low-income residents through an 1115
waiver.
Vermont is different than the other example states. As the other states developed more
comprehensive programs and developed long term care data systems in-house, Vermont
utilizes a commercial human services information management product. Vermont’s Choices for
Care had around 4,000 participants in 2007 and may be more cost effective to customize a
commercial product than to initiate an in-house develop. It will depend on the state to determine
the purpose of a data warehouse and the scope and functions. The more comprehensive and
larger the target client/participant population, more resources must be invested – and potentially
more benefit returned.
4
The SCAN Foundation (2009). The Future of Care Coordination in California: A Synthesis of the “Beyond the
MSSP Waiver” Convening.
http://thescanfoundation.org/future-care-coordination-california-synthesis-beyond-mssp-waiver-convening
23
Summary: Lesson from other states
This brief overview illustrates the need to consider the purposes, scope, and target populations
that a California data warehouse would serve. Although California as the most populous state in
the country serves many times the number of people as the states described in this section
(e.g., Vermont has 4,000 participants, Washington serves a caseload of approximately 11,000
in skilled nursing facilities and 38,000 in Home and Community-Based programs), these states
offer valuable lessons. The Oregon ACCESS is the oldest and most established example of a
centralized data warehouse model. ACCESS, which was created a decade ago, has provided a
platform that has accommodated growth and development since its inception. By effectively
consolidating information across different data repositories into one central system, the Oregon
model has also offered a template for other states to replicate. Building on this approach, the
Washington State program illustrates how linked data can be used for real time decision
making. Washington has also used their data warehouse successfully to inform decision
makers by offering a means to evaluate program outcomes and test the cost effectiveness of
different approaches. Perhaps the broadest and most ambitious initiative—Minnesota’s
MNCHOICES includes a wide variety of programs and incorporates all ages and disabilities. An
important goal of MNCHOICES is to create efficiencies by replacing all other assessments
across the state’s Medical Assistance State Plan long term care services and home and
community-based waivers. Although it is a much smaller state, Vermont’s model illustrates how
commercial products can meet the needs of the state, as opposed to developing an in-house
long term care data infrastructure solution. Such a choice would require weighing the
advantages and disadvantages of purchasing a program off the shelf versus developing one
internally. Considerations include development costs, system support, and customization and
creation of features unique to meet the diverse needs and existing infrastructure of a state such
as California.
Short-term goals may be met by customizing commercial information
management systems, however a long term vision needs to consider the utilization of systems
that may need to be integrated in the forthcoming years should California continues the initiative
of having a statewide long term care information system.
Many of the lessons these integrated information systems offer involve addressing the
challenges inherent in agreeing on a common language and data set. This allows States to
develop common practices and support functions across programs and services. Better data
also helps to inform LTSS users about their care options and to assist them to make selfdirected choices. As California begins to develop its vision, each of these states offers methods
and approaches worth considering. There is evidence to suggest that these systems improve
quality and are cost-effective. Moreover, these states have continued to expand and refine their
efforts suggesting that the initial investment in development has paid off sufficiently to continue
to support and enhance the effort. Such evidence may be helpful in marshaling the startup
funding needed to develop the infrastructure for a LTSS data warehouse in California.
24
VIII. California LTSS Promising Practices
Although the experience of other states offers important lessons, California is unique in many
ways including its large size and diversity (demographically, geographically, and structurally).
Development and implementation of a data warehouse will have to account for these Californiaspecific features. A critical initial step in developing a data warehouse is to assess potential
sources of data by inventorying and identifying how each data set can be utilized to benefit
consumers, providers, policy makers, and the overall system. While there are rich data sets,
these data are utilized for different purposes and driven by different incentives (e.g., financial,
claims, client status, etc.) and therefore are often difficult to link and compare across data
systems. For these reasons, we next describe several state and county-level data collection
initiatives in California that offer lessons for the development of a data warehouse.
Lessons from the Center for California Long Term Care Integration
The Center for California Long Term Care Integration
Because startup resources for
conducted the Long Term Care Integration Project
this type of project are
(LTCIP). A collaboration between USC and UCLA,
significant, this program also
LTCIP was developed to help counties in California
illustrates the need for long
improve their long term care delivery systems. Because
term sustainable funding
the Center used and analyzed a variety of linked data
beyond an initial investment
sources, it serves as a model for a data warehouse. A
for data procurement and
report by Frank W. Neuhauser, Henry E. Brady, and
preparation.
Jason S. Seligman entitled, Planning for a
Comprehensive Database on Aging Californians: Meeting Public Policy and Research Needs for
Better Information, summarizes the Center’s work as follows:
The data are complex and difficult to organize usefully for analytical purposes. Nonetheless,
LTCIP has created a thoughtful and sophisticated solution to the problems of organizing the
data and has completed a major portion of the time consuming work needed to integrate these
resource-intensive services into a Comprehensive Database on Aging Californians. Because of
these factors, as well as its work resolving the access and confidentiality issues with the
agencies supplying data, LTCIP is the obvious candidate to continue developing the data in this
area by bringing together several additional resources not yet included in its datasets (p. 25).
Although the LTCIP lost its funding in 2004, the program offers a model of how linked data can
be integrated and analyzed with academic researchers working collaboratively with state
decision makers. Because startup resources for this type of project are significant, this program
also illustrates the need for long term sustainable funding beyond an initial investment for data
procurement and preparation.
Launched in July of 2000 with funding from the California Department of Health Services' Office
of Long Term Care and the California Health Care Foundation, the Center’s primary mission
focused on providing counties with information to help build high quality, consumer driven, and
cost effective integrated delivery systems. The Center’s collaborating researchers came from a
variety of disciplines including gerontology, demography, health administration, health policy,
25
social welfare, medicine, and economics. USC and UCLA researchers collaborate with faculty
and staff members at UC Berkeley, University of Maryland, The Rand Corporation, and other
institutions.
The Center conducted data analysis and provided support and technical assistance to the
California Department of Health Services, Office of Long Term Care Integration Pilot (LTCIPP)
Program and 18 participating California counties as they worked to develop integrated health
and long term care services. The Center’s Scope of Work included: 1) Providing encrypted
county-specific linked and summarized Medi-Cal, Medicare, IHSS, and MSSP data files for
Calendar years 1996—2000 and California Nursing Facility data from 1999 and 2000; 2) Using
the linked data set to determine client/participant characteristics, service utilization patterns, risk
factors, quality indicators, and cost indicators of California’s Aged, Blind, and Disabled (ABD)
population; 3) Developing and managing a clearinghouse to facilitate sharing of information,
resources, practices, and plans; 4) Identifying, describing, and analyzing models of service
delivery including care management; and, 5) Assisting counties with strategic planning
processes to facilitate the development of an integrated service system.
Data for this effort were linked through an outside vendor (Jen and Associates, Inc. [JAI]). In
addition to data procurement and linkage, JAI Inc. encrypted the data after the linkage by
removing identifiers. The Center provided each county with summaries of their linked data and
conducted specific county-level analyses to inform possible financial risk decisions. In addition
to providing each county with analyses of their data, the Center used the data to conduct
analyses of high cost users, examine characteristics of those in HCBS who had long-stay
nursing facility placements, examine risks for frequent emergency department use, examine
quality indicators in nursing facilities and HCBS, and explore costs and service use associated
with multiple chronic conditions. One of the products developed by the Center was a paper on
California’s Integrated Information Systems that described promising practices in three different
approaches to IIS within the state: Network of Care, CareAccess, and SF-GetCare (See
Appendix 6 for a copy of the paper.) The authors suggested six design criteria that could be
used to assess IIS and could be considered for a data warehouse. These are: (1) the
information on programs and services is comprehensive, (2) the system has the capacity to
serve the needs of diverse users, (3) the system integrates multiple layers and levels of
information, (4) information from multiple sources is standardized and uniform, (5) information
can be accessed in a timely manner, and (6) provisions are adequate to meet all requirements
for privacy and confidentiality.
The Center also developed a monograph to assist communities interested in improving system
integration. Entitled Creating Better Systems of Care for People with Chronic Conditions: A
Building Block Approach; Chronic Care Integration Planning Guide, the guide dedicated one
section each to the strategic and action planning process, and to each of seven building blocks
of chronic care integration, including: 1) a comprehensive benefits package; 2) Delivery system
capacity; 3) Care management mechanisms; 4) System-wide governance/program
administration; 5) Quality mechanisms that include performance measures and accountability
for outcomes, 6) Financing and cost containment strategies, and 7) Integrated information
26
systems. (The section on Building Block 7: Integrated Information Systems from the guide can
be found in Appendix 7.)
In addition to its work with the 19 counties participating with the LTCIPP effort, the Center
provided leadership and technical support to the Communities Creating Long Term Care
Options Group, consisting of representatives from 19 counties (some also participated in the
LTCIPP and some did not). The Options workgroup, which included government agency and
office staff responsible for aging and adult services, providers, and consumers, met regularly
from February 2001 through February 2003. The Options workgroup sought to improve
coordination of LTSS and improve client access by helping counties move toward one of three
levels of system integration: 1) coordination, 2) partial integration, and 3) full integration.
Commonalities among the three models included a number of characteristics including uniform
assessment and improved information systems. Uniform individual assessment was defined
as—providers that agree on obtaining a core set of client information and are able to share this
information with other providers in the system, so that clients only have to answer core
questions once. Improved information systems should be developed to serve both consumer
and provider needs as follows:


Consumers - Highly visible web-based portal for information and assistance with
through of traditional means of communication including toll-free telephone service,
handbook/service directory, and drop-in sites.
Provider/administrators – Databank to centralize and track client information for
improved service delivery and quality assurance.
OPTIONS
Intake/
Assessment
Coordinated Service
Delivery System
Partially Integrated
Service
Delivery System
Protocols for coordinated
service access and
delivery; uniform intake
tool with basic client
information; minimum
common assessment tool
used by all agencies.
“No wrong door;”
multiple points of entry;
uniform assessment.
Fully Integrated
Service
Delivery System
Process to be
designed by
contracting agency;
uniform assessment
required.
The Center developed a number of tools and products during its three years of operation, which
were disseminated through its clearinghouse. Although it demonstrated that a comprehensive
linked data system that could be developed and used to inform policy decisions, lessons also
included recognition of the time and effort to procure and link data from different sources.
Obtaining Medicare data was particularly slow. This means that data are not available in real
time and at best can be expected to have about a 12 month lag before the full compendium of
linked data is available for analysis through this particular model. This timeframe may be
shortened but real time data from diverse LTSS and health care sources were not available.
27
California’s Aging and Disability Resource Connection (ADRC) Partnerships
Beginning in 2004, California implemented the Aging and Disability Resource Connection
(ADRC) partnership model to improve consumer access to long term services and supports
(LTSS). According to the Administration on Aging’s (AoA) website, ADRCs are a collaborative
effort of AoA and the Centers for Medicare & Medicaid Services (CMS) designed to:

create a person-centered, community-based environment that promotes independence
and dignity for individuals;

provide easy access to information to assist consumers in exploring a full range of long
term support options; and

provide resources and services that support the range of needs for family caregivers.
(http://www.aoa.gov/AoAroot/AoA_Programs/HCLTC/ADRC/index.aspx)
The California Department of Aging received federal grants to develop ADRC initiatives in San
Diego City & County, Del Norte & Humboldt Counties, San Francisco, and a five county rural
area in Northern California (Butte, Colusa, Glenn, Plumas, and Tehama Counties).
Subsequently, the CCCP federal grant has enabled the CHHS to launch ADRC initiatives in
Riverside and Orange Counties. An additional federal grant has underwritten enhancements to
San Diego and San Francisco ADRCs. In 2008, the State Independent Living Council (SILC)
received federal support to implement a new ADRC partnership in Nevada County and support
the state’s interest in implementing ADRCs across the state. As of this writing, there are seven
ADRC partnerships in California.
As part of the ADRC vision, each local partnership
ADRCs could be a model for
explores methods for streamlining consumers’ access to
implementing uniform data
services and supports across program barriers, age
systems capturing data across
groups and funding streams. Although each has unique
programs and funding
features, the ADRC model is a step towards the goal of
streams.
supporting consumers’ needs for LTSS from the whole
person perspective instead of from a single service or program perspective. Some ADRC
partnerships are evaluating opportunities to streamline data collection, intake procedures and
assessments of need tools. Potentially, ADRCs could be a model for implementing uniform
data systems capturing data across programs and funding streams. With data that describe
multiple types of LTSS, the state would have current and accurate information upon which to
plan, monitor and evaluate program effectiveness and costs. Currently, ADRCs do not require
common assessment tools and procedures, for the reasons discussed above (e.g., resources
required, time needed to implement, etc.). Rather, the state’s approach has been to embrace
local systems and support and coach professionals as they assist consumers who utilize
services across multiple LTSS. Because the ADRC is a short term grant project moving to a
common assessment was not feasible without ongoing resources for data systems changes to
support local and state infrastructure.
We would anticipate that the ADRCs, of the future, would have client assessment of need,
service and cost information that would potentially be available to a statewide long term care
data warehouse. However, as discussed in several sections of this report a potential challenge
28
to an integrated data system is establishing a common language (service definitions, for
example) across programs in order to share and compare this information in an integrated
system.
San Mateo Universal Assessment Tool
Similar to the examples in other states, San Mateo County developed a comprehensive
assessment tool for the county’s Aging and Adult Services professionals and implemented a
database infrastructure to support the assessment tool. The county piloted its first
comprehensive Uniform Assessment Tool (UAT) in 2008. Data collected from the Uniform
Assessment Tool include demographic, social, cognitive, behavioral, functional and clinical
measures. This information is then used to support service planning for the individual
participating in the pilot.
California Assembly Bill 786 (2003) designated San Mateo as a pilot county, which enabled the
county to implement the UAT. The universal assessment integrated demographic, social,
cognitive, behavioral, functional and clinical measures that were utilized to develop a support
service plan. The UAT is based on interRAI’s MDS-Home Care tool. An outside vendor was
contracted to develop the electronic data warehouse system.
An evaluation report of the UAT pilot5, published in 2009, identified several major operational
and technical challenges. This report does not focus on the issues in implementing a state-level
data warehouse, but rather addresses the development,
A long term care data warehouse
implementation, and piloting of the assessment tool.
can serve as a support tool, but
The report identified operational challenges with the
if not appropriately designed to
launching of the pilot that included issues in training and
support the functions of the
ability of assessors to administer the UAT. As with many
initiative and backed by
startup data systems, there were technical difficulties
appropriate policies,
and duplication of work in administering the UAT. While
unaddressed policies and
the information system was intended to reduce the
practices could potentially be an
duplication of work, case managers experienced
additional barrier to the
increased workload in using the automated tool and data
implementation of a data
entry. Much of the increased workload was due to the
warehouse.
transition,
which
necessitated
simultaneous
maintenance of the old system with all its data entry requirements, while implementing the new
UAT data entry system. In many cases, lack of familiarity with the new system and legacy
policies and mandates added to the work of the case managers.
The evaluation report provides important considerations when implementing initiatives that
support California’s long term care goals such as a comprehensive assessment tool. A long
term care data warehouse can serve as a support tool, but if not appropriately designed to
support the functions of the initiative and backed by appropriate policies, unaddressed policies
5
Lisa R. Shugarman, Katherine Mack, Evaluation of the Uniform Assessment Tool (UAT): Final Report,
(Prepared for the County of San Mateo, Aging and Adult Services, May 2009).
29
and practices could potentially be an additional barrier to the implementation of a data
warehouse.
The evaluation report suggested modifications in the implementation and piloting of the UAT.
San Mateo continues to use the UAT and is enhancing the technical components and quality
assurance issues of the tool.
A common assessment process and data warehouse
infrastructure has been intermittently discussed by advocates and policy makers; however, lack
of consensus and resources have prevented implementation of a statewide universal
assessment tool. If such a uniform protocol were adopted and replicated across the state, the
assessment tool would potentially be tool to integration onto a statewide long term care data
warehouse.
San Diego Long Term Care Integration Project
The San Diego Long Term Care Integration Project (LTCIP) represents one of several initiatives
in California, seeking to improve consumer access to LTSS. In the San Diego program, efforts
to implement key principles of integration are supported by a host of local stakeholders in
concert with San Diego County’s Aging & Independence Services (AIS) organization within the
California Health and Human Services Agency. AIS has integrated intake functions of more
than 30 programs offered by 60 community organizations to resident older adults, adults with
disabilities, individuals with HIV, and others requiring home-based care to avoid
institutionalization. AIS integrated services by developing its system around a central entry
point—the San Diego Call Center. The Call Center provides: 1) information and assistance on
services, funding, and providers; 2) screening for service eligibility; 3) service coordination
across funding streams, and 4) contracting with direct service providers.
In 2004, San Diego was selected to be one of the first two ADRCs in California. To further
develop its intake systems, AIS enhanced its web based access to information using Network of
Care (NoC).6 The NoC, a proprietary subscription service, incorporates an integrated database
to support information and referral functions, intake and screening data gathering, call center
support and consumer service planning. It offers an example of a consumer-oriented
comprehensive information system that operates as single internet site through which a
consumer or a professional can access service information. As of this writing, seventeen
counties in California utilize NoC to improve consumer access to information and to support call
center management. It should be noted that NoC, as an information system designed to
provide information and referral to consumers, is not a model for a data warehouse as
described earlier. San Diego has customized the NoC database to merge information and
referral, the county-specific resource finder, assistive devices, consumer-entered health/medical
information, links to public eligibility determination entities, and benefits checkup.
As currently offered, the primary function of the San Diego NoC is to increase consumer access
to information about programs and services in the San Diego area. As this and other county
initiatives demonstrate, individual counties are at different stages of consolidating their service
6
Network of Care can be viewed at http://networkofcare.org/index2.cfm?productid=1&stateid=6
30
information. This raises the question of how or even if a data warehouse will address the
potential challenges to linking and comparing this information at the state level. For example, in
developing a statewide LTSS data warehouse, it is an open question how consumer and service
information from locally adopted and maintained data systems would be integrated. To some
extent, this issue is being addressed at the state level through revisions to CalCareNet.
CalCareNet is the statewide information system designed to increase consumer access to
information. In contrast to a data warehouse, however, neither CalCareNet nor NoC include
individual consumer data on service usage. Nevertheless, these integrated information systems
show that it is possible to agree on terms and program descriptions to build a consumer
accessible web-based program to inform LTSS users about their care options and to assist
them to make self-directed choices.
California Medicaid Research Institute
The California Medicaid Research Institute (CaMRI) at the University of California, San
Francisco, in cooperation with the DHCS Medi-Cal Division is currently conducting a statewide
study of home and community-based long term services and supports. CaMRI is conducting a
comprehensive analysis of LTSS programs, focusing on the one million SPD who participate in
the Medi-Cal program. The purpose of this study is to inform policy decisions making about the
effectiveness of HCBS programs and services to help users remain in the community. To
conduct this research, CaMRI with funding from CHHS and the SCAN Foundation, is building a
database by linking state-level data from all long term care Medi-Cal eligible users between
2005 and 2008 as well as Medicare data. The project will use this de-identified static database
to comprehensively review utilization and cost of all home and community-based services
(HCBS) in California. Because certain issues, including data linkage, require views of the
confidential data, within the CaMRI project, there is a process for letting researchers interface
with the data “behind the fire wall” while addressing state’s security concerns and assurances.
As the CaMRI study illustrates, the complexity of procuring and linking data, especially Medicare
claims data results in a time lag of 1-2 years before data are available for analysis. In contrast,
real-time data collected through uniform assessments, as illustrated in State programs such as
Washington and Oregon, including allow interventions and deviations in quality to be more
promptly identified.
Although the project is early in its implementation, the CaMRI HCBS study offers promising
lessons for better understanding the steps needed to integrate large state and national datasets
and providing a viable means of partnering with researchers to address pressing state
questions.
Office of Statewide Health Planning and Development
The Office of Statewide Health Planning and Development (OSHPD), a department within the
California Health and Human Services Agency, collects and maintains patient-level data on all
inpatient discharges, emergency department encounters and ambulatory surgeries from all
licensed acute care hospitals in California (excluding federal facilities and prison hospitals) as
well as patient level data from all licensed ambulatory surgery clinics. Additionally OSHPD
collects financial and utilization data from all acute hospitals and medically based long term care
facilities and utilization data from licensed clinics and home health agencies. OSHPD regularly
31
produces reports to guide policy and quality improvement. OSHPD has a long tradition of
releasing de-identified data to eligible health services researchers. Within OSHPD, research
databases have been created that link the inpatient discharge data to birth certificates and
death certificates. These data linkages are updated annually. In addition, hospital inpatient
discharge data, ambulatory surgery data, and emergency department data have been linked by
other state agencies to Medi-Cal data, to the state cancer registry, and to the state AIDS
registry.
Summary: Lessons from California efforts in integrating information
As this discussion illustrates, over the course of more than ten years, a number of local
stakeholder groups as well as several state-federal partnerships have been used to develop
models that can inform the development of a data warehouse. Through the process, significant
political and technical barriers emerged that prevented
the adoption of state policy that would support taking
Although California has been
these initiatives to the next level. State policy changes
home to some local-level
benefit from analysis of the service needs, costs and
innovations, the current
demographics describing current LTSS users. The four
fragmented information
states described earlier have developed data systems
system infrastructure does not
that support such data driven decisions. Although
provide the integrated data
California has been home to some local-level
needed to analyze the success
innovations, the current fragmented information system
or cost benefits of the State’s
infrastructure does not provide the integrated data
array of programs and
needed to analyze the success or cost benefits of the
initiatives.
State’s array of programs and initiatives.
A data
warehouse would build the capacity to address this deficit.
Because of California’s political culture of bottom-up local program development, California has
experience with a number of local initiatives that can be instructive in the development of a data
warehouse. The LTCIP and CaMRI illustrate what is currently required in the absence of a
UAI/UAT to build a linked data set. They also offer lessons in developing data use agreements,
partnering with research and educational institutions and managing large linked data sets.
California’s ADRC offer an incremental approach to linking data and streamlining access to
information, yet they do not address the need for a common language and common data
collection processes. The ADRC illustrates the importance of bringing consumer data and
program information together to focus on a whole person perspective rather than viewing LTSS
through the lens of single services. Moreover, ADRCs offer the potential framework for entities
to build upon common data that could be used to monitor and evaluate program effectiveness
and costs.
Lessons learned from both San Mateo and San Diego are also instructive to the development of
a data warehouse. San Diego County has worked with several components to build an
integrated system at the county-level. They have linked their web-based and call-based
information and assistance program and incorporated lessons from bringing together
stakeholders for their long term integration project, which put them in the position to become
one of the first two ADRCs in the state. In the absence of state mandates for a UAI/UAT San
32
Mateo’s UAT offers insight into what is required to develop the measures and the process for
converting the system from multiple assessments to a consolidated UAT. Startup efforts and
costs, and ensuring staff buy-in are common challenges, as they launched their system (e.g., as
similarly experienced by Washington State).
Finally OSHPD offers a number of lessons and approach for involving others (e.g., research
universities, non-government organizations) in research and analyses. It has experience with
Interagency Agreements and protocols for data release that could be applied to other state
departments.
While there are lessons and partial solutions, an integrated LTSS database still eludes
California; a comprehensive, cross program database that can identify duplication, cost centers,
service gaps and demographics of LTSS utilization. Without sound analytics, California has no
comprehensive source of data upon which to make future policy and budget decisions in
response to a growing and diverse group of LTSS consumers.
33
IX. Developing a Data Warehouse in California
As the interviews with key stakeholders and state and local models suggest, a data warehouse
offers a number of benefits. However, to effectively develop and implement a statewide data
warehouse for long term care delivery, a number of practical and theoretical barriers must be
recognized and overcome. Through our interviews with California Department representatives
and research on other programs, we developed a clear sense of challenges that include
operation/technical barriers, legal issues, sustainability, risks and rewards, and aligning current
efforts with existing initiatives. Together, these five areas represent difficulties of varying
degree.
Operational and technical barriers
Significant operational and technical barriers exist. First, agencies identified and tasked with
providing data and creating the data warehouse must decide whether the inclusion of their data
will benefit themselves and the overall effort. Overcoming the strong incentives to continue the
status quo requires institutional champions to bridge the typical concerns that might otherwise
persuade an agency to consider these efforts as superfluous or minimally beneficial to their
respective goals. This barrier might be termed the will to participate.
Second, there must be agreement about how to link data
Data linkage requires
based on the information that is available in disparate
universal/common identifier…
record sets. Data linkage requires universal/common
in the absence of such an ID
identifier within the universe of included databases; in
(since one does not exist), the
the absence of such an ID (since one does not exist),
use of other client/participant
the use of other client/participant identifying information
identifying information of
of varying accuracy and consistency must be used
varying accuracy and
(client/participant name, birth date, address, social
consistency must be used.
security number, gender, race/ethnicity, and dates of
service). The creation of a crosswalk to link a single person’s records across databases is a
necessary first step, but one with degrees of difficulty and success depending on a person’s
identifiable information collected in each data set.
Given the nature of confidential
client/participant identifying information, a framework would need to be developed for handling
these data. Ideally, in creating a data warehouse system, beneficiaries would be assigned a
unique ID, dramatically improving the ability to link the data. Nevertheless, legacy data would
still require identification and merging as described above.
Legal issues
Legal issues represent a formidable barrier to data sharing. First, privacy issues must be
addressed. Second, data ownership and stewardship must be agreed upon once data are
warehoused. Ownership and stewardship include establishing ground rules for sharing records,
observations, and variables. Certain aspects of the current initiative fall into important
circumstances – e.g. quality improvement and public health – areas that allow for a degree of
flexibility for policy makers. However, such flexibility would not necessarily extend to other
worthy data uses (e.g. research). Even in limited current situations in which agencies routinely
link data (e.g. Medicaid to death, Medicaid to hospital discharge data, hospital discharge data to
34
death, state cancer registry to hospital discharge data), internal data use agreements (DUAs)
are in force. External data users, however, must obtain separate DUAs, specifying protocols to
all agencies, obtain IRB approvals (the state Committee for the Protection of Human Subjects
plus local IRB review), and maintain ongoing documentation regarding training for human
subjects and HIPAA. Currently, such reviews are performed independently by each agency
whose data are being used. A data warehouse would need to streamline such barriers to use.
To the extent that data are collected by agencies for different uses, legal considerations may
derive from the intended uses of these data – e.g., internal policy uses for quality improvement
and public health versus research.
Sustainability
Sustainability of a data warehouse is of practical concern. Accepting the limitations of data
permission to use and combine data, the infrastructure must exist to create and maintain a data
warehouse, or if absent, the staffing and other resources must be identified and allocated. Not
only must there be staff, but the individuals must understand the constituent databases in ways
that go beyond the literal contents (e.g., data dictionary) to knowledge of how the data are
collected, biases and limitations of the data, and current and future changes to the data. This
argues that staff might come from (or be trained by) contributing agencies or be drawn from
knowledgeable end users (viz. researchers). We envision that migration of trained staff from
contributing agencies to the data warehouse would be resisted by these agencies and would be
counterproductive for the success of the warehouse.
Identifying resources, especially a budget, for the data warehouse is a clear obstacle. In the
current tight fiscal environment, new initiatives would come at the expense of existing
programs/efforts. Although this might be a disincentive for departments to contribute, it could be
offset to the extent that there was a sense of value added for participation.
Risks and Rewards
Cost and consequences of not having a data warehouse
LTSS does not fit into predictable profiles as compared to medical treatment models such as
predicting drug use based on certain diagnoses. Managing information for any one consumer is
uniquely complex due to the number and type of variables; e.g. service type, service setting,
service payer, etc. Many states are moving to develop
Without a comprehensive
data warehouses to overcome the information
LTSS data warehouse,
management challenges in delivering and managing
information is not available to
long term services and supports. Our descriptions of
effectively evaluate the cost
current problems and information gaps created by
and quality of program and
fragmented data silos suggest that there are costs and
services, making it difficult for
consequences of not having a data warehouse. Without
local and state policy makers
a comprehensive LTSS data warehouse, information is
to track efforts to decrease
not available to effectively evaluate the cost and quality
waste, lower costs, and
of program and services, making it difficult for local and
improve outcomes.
state policy makers to track efforts to decrease waste,
lower costs, and improve outcomes. Without a data
warehouse, California is unable to examine specific cost saving initiatives or determine how
35
effective LTSS are as a whole to address multiple chronic conditions. Currently, it is not possible
to assess duplication or gaps in service or to determine profiles of users apart from those
presented in individual program databases. Because overall data on consumers are also
lacking, it is unclear how consumers transition across services (including service settings) and
how many individuals use LTSS simultaneously and for what purposes. Similarly, individual
programs are unable to determine what other services their consumers receive. It is important
to note that complex conditions characteristic of many LTSS users requires participation in
different services and programs. Currently the ability to identify multiple service use and track
information across services is lacking, which is not optimal for care planning on an individual
level or tracking resources on a program or service system level.
In a period of constricting resources, it is critical to provide data that can inform difficult
decisions about funding priorities in the future. As the Washington State example discussed
earlier shows, better information will help decision makers manage resources for a growing
population of high cost service users. A data warehouse offers a viable tool to be more
proactive with health prevention and cost saving measures (e.g., assessing the potential for
interventions to identify cost/risk and provide more cost effective treatment and supports). A
data warehouse can also help measure program quality and examine the relationship between
types of care and outcomes. For example, one of this report’s authors (Zingmond) has used
linked administrative data to measure performance on 41 quality indicators, finding a
relationship between better quality of care and frail elders’ improved outcomes in functioning
and survival a year later.7
A data warehouse also increases the state’s capacity to save money by identifying and rooting
out fraud and exploitation that puts at risk California’s frailest citizens and may dramatically
increase costs for the State. Although fraud detection within the health care field is highly
complex, banking and financial services fraud management programs illustrate that linked data
can be screened using techniques such as identification and analyses of outliers, system audits,
pattern recognition and pattern monitoring to help identify fraud throughout the service delivery
system.
Integrated data also can help decision makers establish tangible goals to support the
investment of scarce resources. Better integration of data helps with the evaluation of
7
Zingmond, D. S., Ettner, S. L., Wilber, K. H. & Wenger, N. S. (in press). Association of Claims-Based
Quality of Care Measures with Outcomes among Community Dwelling Vulnerable Elders. Medical
Care.
Zingmond, D. S., Saliba, D. Wilber, K. H., Maclean, C. H. & Wenger, N. S. (2009). Measuring the Quality
of Care Provided to Dually Enrolled Medicare and Medicaid Beneficiaries Living in Nursing Homes.
Medical Care, 47(5), 536-544.
Zingmond, D. S., Wilber, K. H., Maclean, C. H. & Wenger, N. S. (2007). Measuring the Quality of Care
Provided to Community Dwelling Vulnerable Elders Dually Enrolled in Medicare and Medicaid. Medical
Care 45(10):931-938.
36
programs, cost effectiveness studies, and the assessment of how policies and specific
programs result in desired outcomes. State government entities such as legislative committees,
the Legislative Analysts’ Office, and the Department of Finance are heavily reliant on existing
state data. Recognizing that multiple service use is necessary for many LTSS users,
systematically linked data that could be accessed by all authorized entities would reduce
unintentional or unnecessary duplication, particularly in data collection and management, while
helping to ensure that consumers are accessing the services they need and benefitting from
these services.
Key outcomes sought by a data warehouse effort should address data linkage and data sharing
problems that currently make data sharing cumbersome, time consuming, staff intensive, and
expensive. Moreover, the data warehouse should offer a foundation for data sharing to
anticipate future data improvements and contributions, such as the management and inclusion
of actual clinical data or compliance with new data reporting requirements (e.g. collection of
race, ethnicity, and spoken language). Finally, the data warehouse effort has the potential to
reduce the redundancy in data linkage and use across agencies, including streamlining and
validating linkages.
As data increase in volume and complexity, custom, staff-heavy
approaches currently used by agencies would be refined.
In order to move forward, the state must carefully examine the business case for a data
warehouse along with its associated costs and future benefits. Although such an entity has high
cost investment requirements even beyond the initial development of a data warehouse, it offers
California the potential to save dollars in multiple areas of state government. A LTSS data
warehouse requires an infrastructure that is adequately developed and resourced to feed quality
data into the warehouse. Thus, a comprehensive assessment of costs and cost benefits
including potential cost savings, development and sustainability costs will need to be part of any
business case that is provided.
Future opportunities
Finally, the existence of a data warehouse creates an avenue for new opportunities in terms of
current and future initiatives, data improvement, and future support. The existence of a data
warehouse would make a California effort attractive to federal funding initiatives, providing a
jump start to the creation and/or expansion of the data warehouse from LTSS management to
all elder care, care of adults with disabilities, and ultimately care for all ages.
Federal initiatives to develop integrated LTSS data warehouses/repositories could provide a
catalyst and should be explored.
The implementation, improvement, and success of the data warehouse will be an iterative
process. As currently conceived, the data warehouse is a starting point for several layers of
policy change and quality improvement. Detailed assessments of quality, appropriateness, and
access will require a greater degree of granularity and clinical specificity (coming from EHRs)
than available in the data already described. Nevertheless, the advantages of leveraging
currently collected data to address certain questions regarding resource utilization,
centralization, and patterns of care cannot be understated.
37
X. Recommendations
As other states have illustrated a statewide data warehouse for LTSS delivery can be
developed, but will require key ingredients to go from proposal to implementation. These key
items include: (1) building on promising practices within and outside of California, (2) developing
incremental goals to reach the long term vision, (3) identification of resources for startup and
ongoing support, and (4) leadership.
Promising models and practices
This report describes several approaches used effectively in other states as well as local
models in California. These more targeted initiatives or practices within specific departments /
agencies / programs should be considered as building blocks for building a data warehouse
effort.
The processes and actual data warehouses within the state provide a platform with which to
build a comprehensive data warehouse. For example, OSHPD manages large numbers of data
requests as well as routine data linkages. These protocols for managing data request could be
utilized more broadly and made available to more entities. A second example is offered by the
Emergency Medical Services Agency, which is exploring linking data related to the
California/National Trauma Registry (C/NTR) to variables within the National Highway Traffic
Safety Administration (NHTSA) V 2.2.5 dataset (www.emsa.ca.gov/systems).
Although the CaMRI project is not complete, lessons learned from the CaMRI data integration
efforts should also be incorporated as they become available.
There are also a number of statutes and regulations that delineate data sharing policy. The
California Medical Information Act includes confidentiality requirements. Conversely the Public
Records Act (http://ag.ca.gov/publications/summary_public_records_act.pdf) requires public
disclosure of government records unless there is a specific reason not to do so such as per
individual privacy rights or HIPAA.
Several pilot and implementation efforts are currently underway in California, as represented by
our examples that potentially pave a foundation for California to develop a long term care data
warehouse.
We would anticipate that California would begin long term care data warehouse planning with a
comprehensive vision of what could be achieved coupled with an incremental plan to start the
process by building capacity.
Incremental Goals to Reach the Long Term Vision
Although the development of a data warehouse is a daunting task that will take time, a number
of instrumental steps should be taken to begin the process. The most important is to develop a
vision of where the state should go and map the most immediate steps to achieve the vision.
38
Incremental goals
The form and content of a data warehouse are likely to change over time. Thus, a set of
reasonable goals that allow for technical changes (e.g., choice of centralized versus federated
databases) and the addition of new data sets overtime is recommended. Allowing for the
evolution of goals will improve flexibility and add a tactical component to the implementation.
Develop a common vision and plan
The plan must include strategies for data usage including how to integrate and how to
use/analyze the integrated data. This will require a plan for staffing for both technological
capacity and data analysis capacity. We outline a potential process to develop a common
vision and strategic plan below:
1. As with the fiscal plan, a strategic planning process is needed to develop the steps to
build a data warehouse. It is anticipated that this process would take about 6 months.
a. An important step early in the process is to determine priorities for use of the
data warehouse. Questions to be addressed include: What specific areas would
it need to focus on? How will data be used? Who will the primary users be?
One respondent noted that “having data and using data are different.”
b. A second early step is garnering agreement on definitions and decision rules for
data entry for matching. Currently there are no standards for the way data are
defined which causes variation and makes matching difficult. This problem could
also be addressed by having common identifiers, which would allow linking,
which is less prone to error, rather than matching on characteristics.
i. An immediate step that can begin the process would be to update the
Assessment Grid that was developed as part of the California Pathways
Project. The Grid (See Appendix 8) was completed in 2007 and
published as part of the Pathways Report in 2008. It offers a starting
place to begin identifying components that could be included within a
more comprehensive uniform assessment process and data warehouse
development.
2. After the strategic plan has been completed, the planning process should identify any
additional specific operational steps needed to implement the data warehouse. This
phase is expected to take about 9 months. Potential building blocks for a data
warehouse include:
a. Identify possible funding sources to conduct development activities. Identify
possible funding sources to leverage in building and sustaining efforts including
Federal Initiatives and the Affordable Health Care Act.
b. Clarify structure. Should the data warehouse be centralized? What auspices
should it come under? Would a federated approach work or should data be more
centralized?
39
c. Agree on what would be in the data warehouse including initial priorities and
downstream additions.
d. Determined legal requirements/restrictions. Determine the legal and policy
frameworks involved in a data warehouse. Identify what changes in laws and
regulation would be required. Determine what would need to be included in data
sharing agreements.
e. Determine how security requirements would be addressed. (e.g., Conduct
privacy and security requirements audit)
f.
Assess each Department/program’s readiness and what would be required in
terms of data development for it to participate. Some programs will need to
convert to electronic data. All groups will need to work on standardization of data
collection practices and procedures. Build on what exists—as data systems
evolve from older legacy systems, work toward ability to link data as these
systems are updated.
g. Determine technical/data management issues/considerations.
h. Determine approaches to ensure data integrity, reliability, and validity.
i.
Develop a funding and sustainability plan to ensure continuation of the effort.
Sustainability of a Data Warehouse
Identification of available resources
Identification and provision of resources from state government, including staffing and budget,
are key first steps. Initial resources could be through resource redistribution, federal grants, or
private foundational support of this concept.
For example as this report was being written, there were provisions for Health Information
Technology (HIT) within the American Recovery and Reinvestment Act (ARRA) that included
initiatives for data warehouses to improve quality of care and reduce costs. Such federally
supported approaches offer potential opportunities to explore long term care data warehouses.
It will be advantageous for California to consider these funding opportunities, but the state will
have to capitalize on these opportunities as they become available.
Ongoing support of LTC data warehouse goals
Establishing core ongoing support for data warehouse goals across governmental decision
makers, providers, and consumer advocates will ensure that the data warehouse continues. A
strategy of drawing support and maintaining shared responsibility and access will be very
important to the success of a long term care data warehouse.
40
Conclusion
The benefits of developing a data warehouse that integrates fragmented information and makes
it available for use by policy makers, providers, and researchers are fundamental and obvious.
Although the challenges and barriers to developing a LTSS data warehouse should not be
underestimated, the potential positive outcomes are significant. As evidenced in this report by
the stakeholder interviewers, promising practices, and literature published over the last several
decades, the costs of collecting and managing siloed information are high and concomitantly
there is untapped potential to address these costs and improve services by improving the
management and productive use of data. California would benefit greatly by the outcomes that
a data warehouse could offer. Among these are assessing the effectiveness of interventions for
all users to better understand what works and what doesn’t work, improving the state’s ability to
identify and provide interventions for high cost users, improving the assessment of quality and
the relationship of cost to quality, the ability to track consumers across services and to share
information among providers. Among the most obvious cost saving outcomes is reducing
duplication of data collection and data management effort by different providers who must
enter and manage the same data. In addition integrated data facilitates tracking service use
across settings to identify patterns of service use and gaps in care. Finally, a data
warehouse will enhance the state’s ability to identify waste and fraud in the system.
As noted throughout this report, strong leadership will be needed to facilitate buy-in
among key programs needed to make the data warehouse a success. This will require
reaching out, educating and generating support from those most impacted by a data
warehouse, including the many stakeholders who stand to benefit.
41
XI. Appendices
Appendix 1: Acronyms
ABD—Aged, Blind, and Disabled
ARIES—AIDS Regional Information and Evaluation System
CARS—California Aging Reporting System
CMIA—California Medical Information Act or California Confidentiality of Medical Information Act
California Civil Code, sections 56 - 56.37
CA-MMIS—California Medicaid Management Information System
CIO—Chief Information Officer
CMIPS—Case Management, Information and Payrolling System
IHSS—In-Home Supportive Services
IRB—Institutional Review Board. A committee established to review, approve if acceptable, and
monitor research that uses human subjects. The Committee is established to ensure the safety
and ethical treatment of individuals approached to participate in research and/or individuals
whose information is used in research and evaluation studies.
MSSP—Multipurpose Senior Services Program
MITA—Medicaid Information Technology Architecture
NAPIS—National Aging Program Information System
SAWS—Statewide Automated Welfare System
SPD— Seniors and People with Disabilities
TAR— Treatment Authorization Requests
42
Appendix 2: Interview Departments and Data Sources

10 interview sessions with 23 managers representing 8 Departments/Offices within DHHS
o CDDS (Department of Developmental Services)
 Developmental Centers (24 hour care)
 Community Facilities (Regional Centers)
o CDSS (Department of Social Services)
 IHSS (Case Management, Information and Payrolling System—CMIPS and
CMIPS II (pilot). Also Statewide Automated Welfare System (SAWS) and
Public Authorities
o CDPH (Department of Public Health, Office of AIDS)
 AIDS Regional Information and Evaluation System (ARIES)
o DHCS (Department of Health Care Services)
 Medi-Cal Data Warehouse (Management Information System/Decision
Support System)
 Contains all Medi-Cal Program fee-for-service claim and managed
care encounter data along with related beneficiary eligibility, provider
and other associated reference data. This universe of data comes
from 38 different data sources; including the Departments of Social
Services, Mental Health, and Alcohol and Drug
o OSHPD (Office of Statewide Planning and Development, Healthcare Information
Division)
 Patient level data from acute care hospitals and licensed ambulatory
surgical clinics
 Facility level financial and utilization data from acute hospitals and
medically based long term care facilities
 Facility level utilization data from licensed clinics and home health
agencies
o CDA (Department of Aging)
 Primary (NAPIS) - electronic
 Additional (ADHC; MSSP) paper record
o DOR (Department of Rehabilitation)
 Primary: Independent Living Centers
 Additional (Vocational Rehabilitation, Traumatic Brain Syndrome (TBI)
Assistive Technologies, Older Individuals who are blind (OIB)
o DMH (Department of Mental Health)
 Primary (Consumer Services Information System—CSI)
 Additional (Medi-Cal data related to waiver; Data Collection and Reporting
(DCR); Mental Health Services Act—Prop 63; full service partnerships)
o CaMRI Study
 Long Term Care Services (2005-2008)
43
Appendix 3: California Community Choices Data Warehouse Study:
Interview Questions
These are the questions asked for the data managers and policy makers:
1. Which individuals are represented in this database?
a. Are there any specific inclusion or exclusion criteria for inclusion?
2. How often are encounters reported in these data?
3. Are these claims or encounter data or are they evaluative data (such as functional
assessments)?
4. How accurate are these data?
a. Are the data validated and reliable?
5. What are the processes that you have in place for requesting and obtaining these data – for
intra-agency requestors, for inter-agency requesters, and for external data users (such as
UC investigators)?
6. What processes do you have in place for linking these data to other confidential healthcare
databases collected by this or other government agencies?
a. Are any data linkages performed routinely?
b. Which data linkages are performed frequently on the behalf of requestors, but
which are considered “custom data requests”?
c. How feasible would it be to routinely link these data to other healthcare
databases to facilitate the answering of important policy questions?
7. Approximately how many confidential data requests are made annually?
8. What are the barriers to receiving confidential data?
9. Have there been any abuses in the use of these data in the past or lapses in confidentiality?
10. How would you (or your agency) feel about creating an integrated data warehouse that
would allow for the creation and management of an integrated database of publicly collected
healthcare data?
a. Has this ever been proposed to your agency?
b. Has your agency ever considered such a proposal?
c. What would be the necessary steps to create such a data warehouse?
d. What would be the best way of locating and managing such a data warehouse?
Should it be based in Sacramento? Would it be feasible to have regional centers
(e.g. located around UC research centers or in Departments of Public Health)?
e. Are there barriers that you foresee in setting up a data warehouse?
44
Appendix 4: OSHPD: Data Request Forms
Request for Non Public Patient Level Data (IPA) (OSH-HIRC-409 (Rev. 2009-07-09)
Specification and Justification for Patient Discharge Data
Specification and Justification for Linked Patient Discharge Data and Birth Cohort File_w/ED/AS
Specification and Justification for Linked Patient Discharge Data and Vital Statistics Death File
45
Appendix 5: Survey of California Patient Data Resources
MIRCal - Hospital (Inpatient Discharges Only) Data Collection Program
Owner of Data: Office of Statewide Planning and Development (OSHPD)
Data Source:
All licensed hospitals in California
Data Frequency: Semiannual
Lag-Time to Publication
The required data must be filed semiannually, no later than three months after the close of the calendar
semiannual reporting period. Data is made available to the public no later than 15 days after the data is approved.
http://www.oshpd.ca.gov/HID/MIRCal/IPManual.html
Processes of Obtaining Data
http://www.oshpd.ca.gov/HID/MIRCal/IPManual.html
Facilities submit their data by either File Transmission (attaching a data file) or by manually entering individual
records through the use of MIRCal’s "web entry" function. Hospitals are required to report nineteen data
elements for each inpatient discharged from the hospital. Hospitals are defined in Subsection (c) of Section
128700, California Health and Safety Code. Because this reporting requirement is based on the hospital’s license,
the reporting requirement covers every patient discharged from a bed appearing on the hospital’s license. Federal
hospitals (operated by the Veterans Administration, the Department of Defense, or the Public Health Service) are
not required to report because they are not subject to state licensure.
The Patient Data Section (PDS) of OSHPD is responsible for collecting data on all inpatients discharged from all
licensed hospitals in California, identifying errors in the data, and guiding the reporting facilities toward
compliance with data requirements. MIRCal processes each record through a series of complex editing programs
and provides submission results— summary and detailed error reports, to facilities, usually within 24 hours.
Goals for Obtaining Data
As part of its mission, OSHPD maintains several health facility information programs relating to hospitals, long
term care facilities, licensed clinics, and home health agencies. OSHPD makes this information available to the
public in order to promote informed decision-making in today’s healthcare marketplace, to assess the
effectiveness of California’s healthcare systems, and to support statewide health policy development and
evaluation.
In addition to the error reports, MIRCal also generates the following “informational reports”: Data Distribution
Report, MDC/DRG Grouper Statistics Report, Questionable DRG Report, and E-Code Report. Once the data is
made available to the public, a “Hospital Inpatient Profile (HIP) Report” can be accessed for each facility on the
public MIRCal Informational website. This is a three-page summary that displays each data element and lists the
numerical and percentage breakdown of records within each data element category.
http://www.oshpd.ca.gov/MirCal/default.aspx
Information Collected in the Data
(http://www.oshpd.ca.gov/HID/MIRCal/Text_pdfs/ManualsGuides/IPManual/Intro.pdf):
Type of Care
Other Diagnoses and Present On Admission Indicator
Facility Identification Number
Principal Procedure and Date
Date of Birth
Other Procedures and Dates
Sex
Principal External Cause of Injury E-Code and Present
on Admission Indicator
Race
Other External Cause of Injury E-Codes and Present
on Admission Indicator
Ethnicity
Pre-hospital Care and Resuscitation (DNR)
Zip Code
Disposition of Patient
Admission Date
Total Charges
Discharge Date
Abstract Record Number (optional)
Type of Admission
Patient Social Security Number
Source of Admission
Principal Language Spoken
46
Principal Diagnosis and Present On Admission Indicator
Expected Source of Payment
MIRCal - Emergency Department Data Collection Program
Owner of Data: Office of Statewide Planning and Development (OSHPD)
Data Source:
Each hospital must submit an Emergency Care Data Record for each patient encounter in a
hospital emergency department. “Emergency department” is defined in Subsection (c) of Section
128700 of CHSC: "Emergency department" means, in a hospital licensed to provide emergency
medical services, the location in which those services are provided. An emergency department
includes those providing standby, basic, or comprehensive services. A hospital does not report an
Emergency Care Data Record if the encounter resulted in a same-hospital admission
Data Frequency: Quarterly
Lag-Time to Publication
http://www.oshpd.ca.gov/HID/MIRCal/EDASManual.html
The required data must be filed quarterly, no later than 45 days after the end of each quarterly reporting period.
MIRCal processes each record through a series of editing programs and provides submission results within 24
hours. Data is made available to the public no later than 15 days after the data is approved.
Processes of Obtaining Data
http://www.oshpd.ca.gov/HID/MIRCal/EDASManual.html
Facilities submit their data by either File Transmission (attaching a data file), or by manually entering individual
records through the use of MIRCal’s "web entry" function. MIRCal processes each record through a series of
editing programs and provides submission results within 24 hours. The editing process applies field edits to each
record, which are described in the MIRCal Edit Flag Description Guide – Emergency Department and
Ambulatory Surgery Data, and can be accessed on the MIRCal website. In addition to the error reports, MIRCal
also generates the following informational reports: Data Distribution Report and E-Code Report.
Reporting facilities have the option of either submitting data directly to OSHPD or designating an outside agent
(abstractor or data processing firm) to do so on their behalf. Pursuant to Section 97246 of Title 22 of CCR, if an
agent is designated to provide the data, it remains the responsibility of the facility to make sure that its data are
filed by the due date and all reporting requirements are met.
Goals for Obtaining Data
As part of its mission, OSHPD maintains several health facility information programs relating to hospitals, long
term care facilities, licensed clinics, and home health agencies. OSHPD makes this information available to the
public in order to promote informed decision-making in today’s healthcare marketplace, to assess the
effectiveness of California’s healthcare systems, and to support statewide health policy development and
evaluation.
In addition to the error reports, MIRCal also generates the following informational reports: Data Distribution
Report and E-Code Report. Once the data is “made available”, a profile report can be accessed for each facility
on the public MIRCal Informational website. This is a summary that displays each data element and lists the
numerical and percentage breakdown of records within each data element category.
http://www.oshpd.ca.gov/MirCal/default.aspx
Information Collected in the Data
(http://www.oshpd.ca.gov/hid/mircal/Text_pdfs/ManualsGuides/EDASManual/AppdxF.pdf):
Date of Birth
Other Diagnoses
Sex
Principle Procedure
Race
Other Procedures
Ethnicity
Principal External Cause of Injury E-Code
Zip Code
Other External Cause of Injury E-Codes
Patient Social Security Number
Disposition of Patient
Service Date
Expected Source of Payment
Abstract Record Number (optional)
Principle Language Spoken
47
Principal Diagnosis
Facility Identification Number
MIRCal - Ambulatory Surgery Data Collection Program
Owner of Data: Office of Statewide Planning and Development (OSHPD)
Data Source:
Ambulatory surgery procedures performed in hospital or a freestanding ambulatory surgery clinic.
Ambulatory surgery procedures are defined in Subsection (a) of Section 128700 of CHSC:
"Ambulatory surgery procedures" mean those procedures performed on an outpatient basis in the
general operating rooms, ambulatory surgery rooms, endoscopy units, or cardiac catheterization
laboratories of a hospital or a freestanding ambulatory surgery clinic. “Freestanding ambulatory
surgery clinic” is defined in Subsection (e) of Section 128700 of CHSC: "Freestanding ambulatory
surgery clinic" means a surgical clinic that is licensed by the state under paragraph (1) of
subdivision (b) of Section 1204: A "surgical clinic" means a clinic that is not part of a hospital and
that provides ambulatory surgical care for patients who remain less than 24 hours. A surgical
clinic does not include any place or establishment owned or leased and operated as a clinic or
office by one or more physicians or dentists in individual or group practice, regardless of the name
used publicly to identify the place or establishment, provided, however, that physicians or dentists
may, at their option, apply for licensure.
.Data Frequency: Quarterly
Lag-Time to Publication
http://www.oshpd.ca.gov/HID/MIRCal/EDASManual.html
The required data must be filed quarterly, no later than 45 days after the end of each quarterly reporting period.
MIRCal processes each record through a series of editing programs and provides submission results within 24
hours. Data is made available to the public no later than 15 days after the data is approved.
Processes of Obtaining Data
http://www.oshpd.ca.gov/HID/MIRCal/EDASManual.html
Facilities submit their data by either File Transmission (attaching a data file), or by manually entering individual
records through the use of MIRCal’s "web entry" function. MIRCal processes each record through a series of
editing programs and provides submission results within 24 hours. The editing process applies field edits to each
record, which are described in the MIRCal Edit Flag Description Guide – Emergency Department and
Ambulatory Surgery Data, and can be accessed on the MIRCal website. In addition to the error reports, MIRCal
also generates the following informational reports: Data Distribution Report and E-Code Report.
Reporting facilities have the option of either submitting data directly to OSHPD or designating an outside agent
(abstractor or data processing firm) to do so on their behalf. Pursuant to Section 97246 of Title 22 of CCR, if an
agent is designated to provide the data, it remains the responsibility of the facility to make sure that its data are
filed by the due date and all reporting requirements are met.
Goals for Obtaining Data
As part of its mission, OSHPD maintains several health facility information programs relating to hospitals, long
term care facilities, licensed clinics, and home health agencies. OSHPD makes this information available to the
public in order to promote informed decision-making in today’s healthcare marketplace, to assess the
effectiveness of California’s healthcare systems, and to support statewide health policy development and
evaluation.
In addition to the error reports, MIRCal also generates the following informational reports: Data Distribution
Report and E-Code Report. Once the data is “made available”, a profile report can be accessed for each facility
on the public MIRCal Informational website. This is a summary that displays each data element and lists the
numerical and percentage breakdown of records within each data element category.
http://www.oshpd.ca.gov/MirCal/default.aspx
Information Collected in the Data
(http://www.oshpd.ca.gov/hid/mircal/Text_pdfs/ManualsGuides/EDASManual/AppdxF.pdf ):
Date of Birth
Other Diagnoses
Sex
Principle Procedure
48
Race
Ethnicity
Zip Code
Patient Social Security Number
Service Date
Abstract Record Number (optional)
Principal Diagnosis
Other Procedures
Principal External Cause of Injury E-Code
Other External Cause of Injury E-Codes
Disposition of Patient
Expected Source of Payment
Principle Language Spoken
Facility Identification Number
CCORP (California CABG Outcomes Reporting Program)
Owner of Data: Office of Statewide Planning and Development (OSHPD)
Data Source:
California hospital where coronary artery bypass graft (CABG) surgery is performed. A report
shall contain a record for each CABG surgery patient 18 years or older on the date of surgery who
was discharged from the hospital during the reporting period.
Data Frequency: Semiannual
Lag-Time to Publication
http://www.oshpd.ca.gov/HID/CORC/LawsRegs.html
A hospital shall file a report by the date the report is due. The due date is 90 days after the end of a reporting
period. The Office shall accept or reject each report within 60 days of receipt
Processes of Obtaining Data
http://www.oshpd.ca.gov/hid/corc/LawsRegs.html
Hospitals must use the Cardiac Online Reporting for California (CORC) system for transmitting reports
utilizing a Microsoft Internet Explorer web browser that supports a secure Internet connection and 128-bit
cipher strength Secure Socket Layer (SSL) through either: Online transmission of a report as an electronic data
file, or Online entry of individual records as a batch submission.
Goals for Obtaining Data:
Programs within OSHPD promote healthcare safety, quality, and accessibility for Californians. OSHPD’s
Healthcare Outcomes Center, a program within the Health Information Division, reports risk-adjusted results of
adult isolated coronary artery bypass graft surgery in California hospitals. The law requires hospitals to submit
semi-annual clinical data for CABG surgeries and for hospital and surgeon risk-adjusted outcomes reports to be
published. The reports use risk-adjusted operative mortality to evaluate both hospital and surgeon performance.
Hospitals are rated yearly and cardiac surgeons every other year. The reports provide quality of care
information for hospitals, the medical community, the insurance industry, employee benefit managers, and the
health care consumer.
Information Collected in the Data:
Each surgeon identified as a responsible surgeon in a report shall attest to the accuracy of the reported data for
his or her CABG surgeries using the CCORP Surgeon Certification Form:
(http://www.oshpd.ca.gov/HID/CORC/Text_pdfs/surgeon_certification_form.pdf).
CABG Data Abstract Reporting Form:
http://www.oshpd.ca.gov/HID/CORC/Text_pdfs/CABGAbstractForm_copy.pdf;
http://www.oshpd.ca.gov/HID/SubmitData/CCORP_CABG/TrainingManual_2008_Final.pdf
California Cancer Registry
Owner of Data: State of California, Department of Public Health (CDPH), Chronic Disease Surveillance and
Research Branch (CDSRB)
Data Source:
Any hospital or other facility providing therapy to cancer patients within an area designated as a
cancer reporting area shall report each case of cancer to the department or the authorized
representative of the department in a format prescribed by the department. Any physician and
surgeon, dentist, podiatrist, or other health care practitioner diagnosing or providing treatment for
cancer patients shall report each cancer case to the department or the authorized representative of
49
the department except for those cases directly referred to a treatment facility or those previously
admitted to a treatment facility for diagnosis or treatment of that instance of cancer.
Data Frequency: Annually
Lag-Time to Publication
http://www.ccrcal.org/pdf/Data_Statistics/CCRDataAccessDisclosure_v04.5.pdf
Currently the CCR requires about eighteen months after the close of a calendar year to collect, quality control,
and consolidate data to produce analysis files which include greater than 95% of the cases for a given year.
Processes of Obtaining Data
http://www.ccrcal.org/pdf/Data_Statistics/CCRDataAccessDisclosure_v04.5.pdf
Hospitals and other cancer reporting facilities are required to report cancer data from their medical records.
Physicians and other health care providers are required to report information about cancer patients who are not
referred to a facility. Information must be reported within six months after the patient is admitted to the facility
or care commenced.
A network of regional registries receives these data and checks for accuracy, performs quality control activities
with health care providers and utilizes the data for surveillance and research.
CDPH’s Chronic Disease Surveillance and Research Branch (CDSRB) manages the CCR program through a
prime contract with Public Health Institute (PHI) and subcontracts with the regional registries for coordination
and aggregation of cancer data into a statewide data set. It oversees the release of data to external researchers
and conducts surveillance and research projects with the data.
CCR also has out-of-state case sharing agreements with 22 states, including all of California’s bordering states
in order to capture information on tumors diagnosed in other states for California residents.
Goals for Obtaining Data
http://www.ccrcal.org/pdf/Data_Statistics/CCRDataAccessDisclosure_v04.5.pdf
The law expressly requires that CDPH and the regional registries use the CCR data for surveillance, cancer
control initiatives and research into the causes and cures of cancer. The law also allows access to be granted to
certain qualified persons. It also allows the disclosure of CCR data to qualified institutions for cancer control,
surveillance and research. In addition, it allows the publication of reports about the incidence of and mortality
from cancer, case counts and rates for specific population subgroups and local communities.
Information Collected in the Data:
http://www.ccrcal.org/pdf/data_statistics/data_dictionary.pdf
California Department of Public Health, Office of AIDS (CDPH/OA)
Owner of Data: State of California, Department of Public Health (CDPH), Office of AIDS (OA)
Data Source:
HIV/AIDS cases are reported to the California Department of Public Health, Office of AIDS
(CDPH/OA) by local health department communicable disease investigators in collaboration and
with the support of the Office of AIDS.
Data Frequency: Semi-Annual
Lag-Time to Publication
http://www.cdph.ca.gov/data/statistics/Pages/OAHIVAIDSStatistics.aspx
The semi-annual reports are cumulative reports that will be current through June 30 and December 31; they will
be released within two months after the reporting period
Processes of Obtaining Data
http://www.cdph.ca.gov/programs/aids/Documents/ACRHIVRptgFlowChart2006-04.pdf
HIV/AIDS cases are reported to the California Department of Public Health, Office of AIDS (CDPH/OA) by
local health department communicable disease investigators in collaboration and with the support of the Office
of AIDS.
50
Goals for Obtaining Data http://www.cdph.ca.gov/programs/aids/Pages/tOAHIVRptgSP.aspx
To provide demographic and clinical information on individuals who have received a confirmed diagnosis of
HIV infection or AIDS from a healthcare provider.
California Department of Public Health, Office of Vital Records: Birth, Death, Fetal Death, Still Birth &
Marriage Certificates
Owner of Data: State of California, Department of Public Health (CDPH)
Data Source:
County Health Department and County Recorder's Office
Data Frequency:
Lag-Time to Publication
http://www.cdph.ca.gov/certlic/birthdeathmar/Pages/ImportantInformation.aspx
Birth and death records are available from the State Office of Vital Records approximately 6 months after the
event.
Processes of Obtaining Data
http://www.cdph.ca.gov/certlic/birthdeathmar/Pages/ImportantInformation.aspx
Birth and death records are only available from the State Office of Vital Records after they have been registered
by the County Health Department and recorded by the County Recorder's Office in the county where the event
took place.
Goals for Obtaining Data
http://www.cdph.ca.gov/Documents/CDPH-Strategic-Plan.pdf
To provide access to vital records, such as birth and death certificates, in order to provide detection, treatment,
prevention and surveillance of public health and environmental issues.
Information Collected in the Data:
http://www.cdph.ca.gov/data/dataresources/requests/Documents/Death%20Statistical%20Master%20File%20V
ariables.pdf
National Death Index
Owner of Data: National Center for Health Statistics, Centers for Disease Control and Prevention
Data Source:
The National Death Index (NDI) is a central computerized index of death record information
(beginning with 1979 deaths) compiled from computer files submitted by State vital statistics
offices.
Data Frequency: Annually
Lag-Time to Publication
http://www.cdc.gov/nchs/data_access/ndi/about_ndi.htm
Death records are added to the NDI file annually, approximately 12 months after the end of a particular calendar
year.
Processes of Obtaining Data
http://www.cdc.gov/nchs/data_access/ndi/about_ndi.htm
The National Death Index (NDI) is a central computerized index of death record information on file in the State
vital statistics offices. The national file of identifying death record information (beginning with 1979 deaths) is
compiled from computer files submitted by State vital statistics offices.
Goals for Obtaining Data
http://www.cdc.gov/nchs/data_access/ndi/about_ndi.htm
NCHS established the NDI as a resource to aid epidemiologists and other health and medical investigators with
their mortality ascertainment activities. NDI is available to investigators solely for statistical purposes in
medical and health research. It is not accessible to organizations or the general public for legal, administrative,
or genealogy purposes. NDI assists investigators in determining whether persons in their studies have died and,
51
if so, provide the names of the States in which those deaths occurred, the dates of death, and the corresponding
death certificate numbers.
Information Collected in the Data
http://www.cdc.gov/nchs/data/ndi/NDI_Retrieval_Back.pdf
 Name: first, middle, last
 Father’s surname
 Social security number
 Birth date
 Age
 Sex
 Race
 Marital status
 State of residence
 State of birth
 State of death
 Date of death
 Death certificate number
National Vital Statistics System
Owner of Data: National Center for Health Statistics, Centers for Disease Control and Prevention
Data Source:
Data are provided through contracts between NCHS and vital registration systems operated in the
various jurisdictions legally responsible for the registration of vital events. Legal authority for the
registration of these events resides individually with the 50 States, 2 cities (Washington, DC, and
New York City), and 5 territories (Puerto Rico, the Virgin Islands, Guam, American Samoa, and
the Commonwealth of the Northern Mariana Islands).
Data Frequency: Annually
Lag-Time to Publication
http://www.cdc.gov/nchs/deaths.htm
Approximately two years.
Processes of Obtaining Data
http://www.cdc.gov/nchs/nvss/about_nvss.htm
Data are provided through contracts between NCHS and vital registration systems operated in the various
jurisdictions legally responsible for the registration of vital events – births, deaths, marriages, divorces, and fetal
deaths. Vital Statistics data are also available online.
Goals for Obtaining Data
http://www.cdc.gov/nchs/deaths.htm
Mortality data from the National Vital Statistics System (NVSS) are a fundamental source of demographic,
geographic, and cause-of-death information. This is one of the few sources of health-related data that are
comparable for small geographic areas and are available for a long time period in the United States. The data
are also used to present the characteristics of those dying in the United States, to determine life expectancy, and
to compare mortality trends with other countries.
Information Collected in the Data:
http://www.cdc.gov/nchs/data/dvs/DEATH11-03final-ACC.pdf
http://www.cdc.gov/nchs/data/series/sr_04/sr04_028.pdf
Center for Medicare & Medicaid Services: MDS
Owner of Data: U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services
(CMS)
52
Data Source:
MDS data is collected on ALL residents of long term care facilities certified to participate in
Medicare or Medicaid. In other words, all residents are given MDS assessments regardless of
payer type.
Data Frequency: All residents in Medicare and/or Medicaid certified facilities are assessed at admission, annually,
for a significant change in status assessment, significant correction of prior assessment, and a
quarterly review assessment. Admission assessments must be completed by 14th day of resident's
stay (unless Medicare which have more requirements). The annual reassessment must be within 12
months of the most recent full assessment. Significant change reassessments must be within 14
days following a change in status has occurred. Quarterlies must be no less frequently than once
every 3 months. This means that (at a minimum) 3 quarterly reviews and one full assessment is
required in each 12 month period. Because subsequent assessments are based on timing of
admission assessments or other full assessments quarterly assessments will not necessarily be in a
specific quarter. According to the RAI Users Manual facilities may vary or stagger their schedules
(all residents in Feb, May, August and November or stagger with some in January, some in
February, remainder in March and first group again in April).
Lag-Time to Publication
http://www.resdac.org/cms-data/file-availability
There is approximately a 3-month delay until the MDS data is available for research. Facilities have a month to
transmit data to their State but they are frequently late. Generally CMS extracts data from the State database to
their National database for target dates after 2-3 months.
Processes of Obtaining Data (should this be MDS 3.0?)
http://www.cms.hhs.gov/MDSPubQIandResRep/
The Minimum Data Set (MDS) is part of the federally mandated process for clinical assessment of all residents
in Medicare or Medicaid certified nursing homes. This process provides a comprehensive assessment of each
resident's functional capabilities and helps nursing home staff identify health problems. Resident Assessment
Protocols (RAPs), are part of this process, and provide the foundation upon which a resident's individual care
plan is formulated. MDS assessment forms are completed for all residents in certified nursing homes, regardless
of source of payment for the individual resident. MDS assessments are required for residents on admission to
the nursing facility and then periodically, within specific guidelines and time frames. In most cases, participants
in the assessment process are licensed health care professionals employed by the nursing home. MDS
information is transmitted electronically by nursing homes to the MDS database in their respective States. MDS
information from the State databases is captured into the national MDS database at CMS.
Goals for Obtaining Data
(http://www.cms.hhs.gov/NursingHomeQualityInits/downloads/NHQIssaqiomergedoc200512.pdf)
(http://www.cms.hhs.gov/NursingHomeQualityInits/downloads/NHQIombudqio472a200512.pdf):
The nursing home quality measures come from resident assessment data that nursing homes routinely collect on
the residents at specified intervals during their stay. These measures assess the resident's physical and clinical
conditions and abilities, as well as preferences and life care wishes. These assessment data have been converted
to develop quality measures that give consumers another source of information that shows how well nursing
homes are caring for their residents' physical and clinical needs.
Relationship of Quality Improvement Organizations (QIOs) and State Survey Agencies (SSAs):
For purposes of the Nursing Home Quality Initiative, QIOs have been given the responsibility to promote
awareness and use of publicly reported nursing home quality measures, and to provide assistance to nursing
homes in their State which seek to improve performance. QIOs will seek to accomplish this by conveying
the message that some nursing homes do better than others in regards to quality measures that are important
to beneficiaries and their caregivers, and by making available information and assistance to facilities about
how they can achieve better performance. From CMS’ perspective, SSAs and QIOs have distinct missions.
QIOs seek to promote improvement and excellence in care. The QIO mission does not include inspection
and enforcement around regulatory standards. SSAs seek to ensure that facilities meet regulatory standards.
Under State laws and directives, many SSAs have also undertaken activities to promote improvement.
Relationship of Quality Improvement Organizations (QIOs) and State Offices of the Long-Term Care
Ombudsman (LTCOPs):
53
For purposes of the Nursing Home Quality Initiative, QIOs have been given the responsibility to promote
awareness and use of publicly reported nursing home quality measures, and to provide assistance to nursing
homes in their State which seek to improve performance. QIOs will seek to accomplish this by conveying
the message that some nursing homes do better than others in regards to quality measures that are important
to beneficiaries and their caregivers, and by making available information and assistance to facilities about
how they can achieve better performance. For the purpose of this initiative, LTCOPs will assist residents,
family members, concerned citizens and others with the use of quality measures in nursing home selection
and in assessing nursing home care and will assist, as feasible and appropriate, QIOs with other aspects of
the initiative.
Information Collected in the Data:
- RAI User's Manual (posted October 2009) [ZIP 3.9 MB] - http://www.cms.gov/Medicare/Quality-
Initiatives-Patient-AssessmentInstruments/NursingHomeQualityInits/MDS30RAIManual.html
Center for Medicare & Medicaid Services: OASIS
Owner of Data: U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services
(CMS)
Data Source:
OASIS data are collected for Medicare and Medicaid patients, 18 years and older, receiving
skilled health services, with the exception of patients receiving services for pre- or postnatal
conditions. Patients whose care is reimbursed by other than Medicare or Medicaid or who are
receiving only personal care, homemaker, or chore services exclusively are excluded since these
are not considered skilled services. Note, OASIS data collection and submission are not required
for patients who have a single visit in a quality episode.
Data Frequency: OASIS-C data are collected at the following time points:
 Start of Care
 Resumption of Care following inpatient facility stay
 Recertification within the last five days of each 60-day recertification period
 Other Follow-Up
 Transfer to inpatient facility
 Discharge from home care
 Death at Home
According to Resdac: Medicare certified home care agencies are required to conduct patientspecific comprehensive assessments at specified time points. The data are collected at start of care,
60-day follow-ups, and discharge (and surrounding an inpatient facility stay).
Lag-Time to Publication
http://www.resdac.org/cms-data/files/oasis
There is approximately a 3 month delay until the OASIS data is available for research.
Processes of Obtaining Data
CMS's OASIS Implementation Manual - http://www.resdac.umn.edu/OASIS/data_available.asp
The comprehensive assessment and OASIS data collection should be conducted by a registered nurse (RN) or
any of the therapies (PT, SLP/ST, OT). An LPN/LVN, PTA, OTA, MSW, or Aide may not complete OASIS
assessments. In cases involving nursing, the RN completes the comprehensive assessment at SOC. Any
discipline qualified to perform assessments – RN, PT, SLP, OT – may complete subsequent assessments. For a
therapy-only case, the therapist usually conducts the comprehensive assessment. It is acceptable for a PT or SLP
to conduct and complete the comprehensive assessment at SOC. An OT may conduct and complete the
assessment when the need for occupational therapy establishes program eligibility. Note: Occupational therapy
alone does not establish eligibility for the Medicare home health benefit at the start of care; however,
occupational therapy may establish eligibility under other programs, such as Medicaid. The Medicare home
health patient who is receiving services from multiple disciplines (i.e., skilled nursing, physical therapy, and
occupational therapy) during the episode of care, can retain eligibility if, over time, occupational therapy is the
only remaining skilled discipline providing care. At that time, an OT can conduct OASIS assessments.
54
Goals for Obtaining Data
http://www.cms.hhs.gov/HomeHealthQualityInits/14_HHQIOASISUserManual.asp#TopOfPage – OASIS-C
Guidance Manual Ch. 1
- OASIS data elements are designed to enable systematic comparative measurement of home health care
patient outcomes at two points in time. Outcome measures are the basis for outcome-based quality
improvement (OBQI) efforts that home health agencies (HHAs) can employ to assess and improve the
quality of care they provide to patients. Under OBQI, CMS provides HHAs with agency-patient related
characteristic (case mix), risk-adjusted outcome, potential avoidable event (adverse event outcome), and
patient tally reports for their patients for a 12-month period. The agency also is provided with comparison
data from the HHA’s prior 12-month period and national reference data.
- According to Resdac http://www.resdac.org/resconnect/articles/129, the Home Health Outcome and
Assessment Information Set (OASIS) contains data items that were developed for measuring patient
outcomes for the purpose of performance improvement in home health care.
Information Collected in the Data:
- http://www.cms.gov/Research-Statistics-Data-and-Systems/Files-forOrder/IdentifiableDataFiles/downloads/sasIDhha.pdf
- http://www.resdac.org/cms-data/files/oasis/data-documentation
- http://www.cms.hhs.gov/HomeHealthQualityInits/downloads/HHQIOASISVolume4.pdf#search=%22OAS
IS%20CHRONICLE%20AND%20RECOMMENDATIONS%22 - OASIS Chronicle Summary (Chapter 3
of Volume 4 of the National OBQI Demonstration Final Report) contains an excellent variable by variable
resource for researchers wanting more information about individual OASIS data variables.
California Department of Social Services: In-Home Supportive Services (IHSS)
Owner of Data: California Department of Social Services
Data Source:
Applicants for IHSS. To be eligible, applicants must be over 65 years of age, or disabled, or blind.
Disabled children are also eligible for IHSS. Applicants may be eligible for IHSS if they:
 are a current recipient of Supplemental Security Income/State Supplementary Payment
(SSI/SSP); or
 meet all the eligibility criteria for SSI/SSP except that your income is in excess of the
SSI/SSP income levels; or
 meet all the eligibility criteria for SSI/SSP, including income, but do not receive SSI/SSP;
or
 are a Medi-Cal recipient who meets SSI/SSP disability criteria.
Data Frequency: Data on the caseload, hours paid, and expenditures for IHSS services is produced monthly.
Lag-Time to Publication
http://www.cdss.ca.gov/agedblinddisabled/PG1282.htm
The monthly report is available after the beginning of the next month.
Processes of Obtaining Data
http://www.canhr.org/factsheets/misc_fs/html/fs_ihss.htm;
http://www.disabilitybenefits101.org/ca/programs/health_coverage/medi_cal/ihss/program2.htm
Applicants complete an IHSS application. Once IHSS receives the application, a caseworker will be assigned to
conduct a needs assessment. During the needs assessment, the caseworker will come into the applicant’s home
and ask the applicant questions about his/her physical and mental capacity in order to determine what he/she
can and cannot do. The applicant’s living situation will also be evaluated.
Both service recipients and providers fill out the required forms and send them to the local IHSS office at the
appropriate county agency.
Goals for Obtaining Data
http://www.csus.edu/isr/reports/ihss/materials/consumers/handbooks/cons_english_handbook.pdf
http://www.cdss.ca.gov/agedblinddisabled/res/pdf/QA_Monitoring_Activities_Report(5-7-08).pdf
Applicant data is collected in order to determine applicant eligibility for IHSS.
Quality Assurance/Quality Improvement Initiative: To ensure the quality of the in-home supportive services
provided, to ensure accurate assessments of needs and hours, respond to data claim matches indicating potential
55
overpayments, implement procedures to identify third-party liability, monitor the program to detect and prevent
fraud, and to ensure program integrity.
Information Collected in the Data
http://www.cdss.ca.gov/agedblinddisabled/PG1810.htm
http://www.cdss.ca.gov/agedblinddisabled/PG1816.htm
http://dpss.lacounty.gov/dpss/forms_library/form.cfm?id=249&fileName=MCRD_Forms-English.pdf
California DMV
Owner of Data: California Department of Motor Vehicles
Data Source:
Public citizens applying for a license or registering for a vehicle; physicians who perform medical
examinations and prepare health reports on these applicants.
Data Frequency
Lag-Time to Publication
Processes of Obtaining Data
Applicants and their physicians complete the required forms and submit to the California DMV.
Goals for Obtaining Data
Information Collected in the Data
http://www.dmv.ca.gov/forms/formsdl_alpha.htm
California Department of Mental Health Client and Services Information (CSI) System
Owner of Data: California Department of Mental Health
Data Source:
Data are provided monthly by county mental health programs and summarized at the state level.
The data includes statistical information and reports about county mental health programs using
the Client and Service Information (CSI) system.
Data Frequency: Annually
Lag-Time to Publication
http://www.dmh.ca.gov/statistics_and_data_analysis/CSI.asp
Approximately 3 years.
Processes of Obtaining Data
http://www.dmh.ca.gov/statistics_and_data_analysis/CSI.asp
Data are provided monthly by county mental health programs. In county-staffed providers, all clients and
services must be reported. In contract providers, those clients and services provided under the contract with the
county mental health program must be reported.
Goals for Obtaining Data
http://www.dmh.ca.gov/statistics_and_data_analysis/CSI.asp
http://www.bbs.ca.gov/pdf/mhsa/resource/other/dmh_client_services_annual_rpt_200203.pdf
The system is used to provide service and utilization data to DMH management and staff, county mental health
programs, other federal and state agencies, the Legislature, and other interested groups and individuals.
The Department of Mental Health’s (DMH) Client and Services Information (CSI) System collects data
pertaining to mental health clients and the services they receive at the county level.
A basic principle of the CSI system is that it reflects both Medi-Cal and non-Medi-Cal clients, and services
provided in the County/City/Mental Health Plan program. This includes all providers whose legal entities are
reported to the County Cost Report under the category Treatment Program and the individual and group
practitioners, most of which were formerly in the Fee-For-Service system. These practitioners are individual or
group practice psychiatrists, psychologists, Licensed Clinical Social Workers (LCSW), Marriage, Family and
Child Counselors (MFCC), and Registered Nurses (RN) as well as the Mixed Specialty group practices.
56
In county-staffed providers, all clients and services must be reported. In contract providers, those clients and
services provided under the contract with the county mental health program must be reported.
Information Collected in the Data
http://www.dmh.ca.gov/Statistics_and_Data_Analysis/docs/Cnty_MH-CSI-Rpts/CSI_DataElements2.pdf
Medicaid
Owner of Data:
U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services
(CMS)
Data Source:
The Medicaid Analytic eXtract (MAX) data is a set of person-level data files on Medicaid
eligibility, service utilization, and payments. The MAX data are created to support research and
policy analysis. The MAX data are extracted from the Medicaid Statistical Information System
(MSIS). States provide CMS with quarterly computer files containing specified data elements for:
(1) persons covered by Medicaid (Eligible files); and, (2) adjudicated claims (Paid Claims files)
for medical services reimbursed with Title XIX funds. The CMS Medicaid enrollment and claim
files, State Medicaid Research Files (SMRFs), contain data for Medicaid eligibles who actually
enroll. SMRF or MAX cannot, therefore, be used to study individuals who are eligible but not
enrolled.
Data Frequency: MSIS data is collected quarterly. MAX data is collected annually.
Lag-Time to Publication
http://www.resdac.org/cms-data/file-availability
Under optimal conditions, MAX data for a given year should be available about 22-24 months after the close of
that calendar year.
Processes of Obtaining Data
http://www.cms.hhs.gov/MSIS/;
http://www.cms.hhs.gov/medicaiddatasourcesgeninfo/07_maxgeneralinformation.asp
States provide CMS with quarterly computer files (MSIS) containing specified data elements for: (1) persons
covered by Medicaid (Eligible files); and, (2) adjudicated claims (Paid Claims files) for medical services
reimbursed with Title XIX funds.
The MAX data are extracted from the Medicaid Statistical Information System (MSIS).
Goals for Obtaining Data
http://www.cms.hhs.gov/MSIS/;
http://www.cms.hhs.gov/medicaiddatasourcesgeninfo/07_maxgeneralinformation.asp
MSIS data are used by CMS to produce Medicaid program characteristics and utilization information for those
states. These data also provide CMS with a large-scale database of state eligibles and services for other
analyses. The purpose of MSIS is to collect, manage, analyze and disseminate information on eligibles,
beneficiaries, utilization and payment for services covered by State Medicaid programs. The current uses of
MSIS data include
 health care research and evaluation activities;
 program utilization and expenditures forecasting;
 analyses of policy alternatives;
 responses to congressional inquiries; and
 matches to other health related databases.
The MAX data are created to support research and policy analysis.
Information Collected in the Data
http://www.resdac.umn.edu/Medicaid/max-1999.asp
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Medicare
Owner of Data:
U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services
(CMS)
Data Source:
- Standard Analytical Files (SAFs): final action claims submitted by inpatient hospital providers,
skilled nursing facility providers, institutional outpatient providers, home health agency providers,
non-institutional providers, Hospice providers, and Durable Medical Equipment suppliers
- Medicare Provider and Analysis Review File (MedPAR) Files: inpatient hospital and skilled
nursing facility (SNF) final action stay records
- Part D Drug Event (PDE) File: When a beneficiary fills a prescription under Medicare Part D, a
prescription drug plan sponsor must submit a summary record to CMS
- CCW Beneficiary Summary File: contains existing CMS beneficiary data (from multiple data
sources) linked by a unique identifier; contains data from fee-for-service Institutional and Noninstitutional claims, enrollment/eligibility, and assessment (all payers) data (Minimum Data Set,
Outcome and Assessment Information Set, Swing bed assessments, and Inpatient Rehabilitation
Facility Patient Assessment Instrument) from January 1, 1999 forward for a random 5% Medicare
beneficiary population, and from January 1, 2005 forward for 100% Medicare population
Data Frequency: Annually
Lag-Time to Publication
http://www.resdac.umn.edu/Medicare/data_file_descriptions.asp#rif
- Standard Analytical Files (SAFs): available during the next calendar year
- Medicare Provider and Analysis Review File (MedPAR) Files: available the during next calendar year
- Denominator File: available during the next calendar year
- Beneficiary Annual Summary File: approximately two years
- Part D Denominator File: approximately two years
- Part D Utilization File: approximately two years
- Chronic Care Condition Data Warehouse (CCW) Beneficiary Summary File: available during the next
calendar year
Processes of Obtaining Data
http://www.resdac.org/cms-data/request/cms-data-request-center
http://www.resdac.umn.edu/Medicare/data_file_descriptions.asp#rif
http://www.resdac.umn.edu/Medicare/file_descriptions.asp#inpatient
The data available are claims and records of services that were paid for, and enrollment and eligibility
information on the Medicare beneficiaries. A claim is a request for reimbursement that providers submit to
insurance companies for services rendered. It includes the description of services and diagnoses.
- Standard Analytical Files (SAFs): final action claims submitted by inpatient hospital providers, skilled nursing
facility providers, institutional outpatient providers, home health agency providers, non-institutional providers,
Hospice providers, and Durable Medical Equipment suppliers for reimbursement of costs; generated by
processing the National Claims History (NCH) file's raw claims through final action algorithms that match the
original claim with adjusted claims to resolve any adjustments
- Medicare Provider and Analysis Review File (MedPAR) Files: inpatient hospital and skilled nursing facility
(SNF) submits an inpatient "stay" record which summarizes all services rendered to a beneficiary from the time
of admission to a facility through discharge; since June 1995, the inpatient and SNF claims from the NCH file
became the source for the MedPAR file
- Part D Drug Event (PDE) File: when a beneficiary fills a prescription under Medicare Part D, a prescription
drug plan sponsor must submit a summary record to CMS
Goals for Obtaining Data
http://www.resdac.umn.edu/Medicare/file_descriptions.asp
http://www.ccwdata.org/cs/groups/public/documents/document/ccw_userguide.pdf
The data available are claims and records of services that were paid for, and enrollment and eligibility information
on the Medicare beneficiaries.
58
- Standard Analytical Files (SAFs): contain information collected by Medicare to pay for health care services
provided to a Medicare beneficiary
- Medicare Provider and Analysis Review File (MedPAR) Files: contains inpatient hospital and skilled nursing
facility (SNF) final action stay records; each MedPAR record represents a stay in an inpatient hospital or SNF;
an inpatient "stay" record summarizes all services rendered to a beneficiary from the time of admission to a
facility through discharge; each MedPAR record may represent one claim or multiple claims, depending on the
length of a beneficiary's stay and the amount of inpatient services used throughout the stay
- Denominator File: contains demographic and enrollment information about each beneficiary enrolled in
Medicare during a calendar year; used to determine beneficiary demographic characteristics, entitlement, and
beneficiary participation in Medicare Managed Care Organizations
- Vital Status File: contains demographic information about each beneficiary ever entitled to Medicare; often
used to obtain recent death information for a cohort of Medicare beneficiaries
- Name and Address File: contains name and mailing contact address; often the Name and Address File is
requested to contact Medicare beneficiaries for participation in a study
- Beneficiary Annual Summary File (BASF) File: beneficiary level file that contains enrollment, eligibility, vital
statistics, and summarized information about the service utilization by file type; in addition, the file contains
two different condition categories, the Condition Categories or CCs and the Chronic Conditions Data
Warehouse flags called CCW Flags
- Part D Denominator File: contains demographic and enrollment information about each beneficiary enrolled in
Medicare during the calendar year
- Part D Drug Event (PDE) File: contain prescription drug costs and payment data that enable CMS to make
payments to the plans and otherwise administer the Part D benefit; the PDE data are not the same as individual
drug claim transactions but are summary extracts using CMS-defined standard fields
- Chronic Care Condition Data Warehouse (CCW) Beneficiary Summary File: intended use of the CCW data is
to identify areas for improving the quality of care provided to chronically ill Medicare beneficiaries, reduce
program spending, and make current Medicare data more readily available to researchers studying chronic
illness in the Medicare population
Information Collected in the Data
http://www.resdac.umn.edu/Medicare/data_file_descriptions.asp#rif
Medi-Cal
Owner of Data:
Data Source:
State of California, Department of Health Care Services
- Paid Claims and Encounters Standard 35C-File: Records for the services paid for in part with
federal financial participation funds (FFP) are collected. This includes claims processed by
Electronic Data Systems (EDS), Delta Dental Services, the Departments of Mental Health (DMH)
and Alcohol and Drugs, services provided under such managed care (capitation) models as County
Organized Health Systems (COHS), geographic managed care (GMC), and two-plan counties.
Data Frequency: Monthly
Lag-Time to Publication
Processes of Obtaining Data
- Paid Claims and Encounters Standard 35C-File: The Department of Health Care Services (DHCS) manages
California's Medi-Cal program and the program's eligibility, scope of benefits, reimbursement, and related
components. DHCS contracts with Fiscal Intermediaries (FIs) to process fee-for-service claims and requires the
Managed Care contractors to provide encounter records. To obtain Medi-Cal funding, the waiver programs and
Departments of Mental Health and Alcohol and Drug must submit claim records. DHCS collects and processes
all of these records for various purposes. The current DHCS FIs are Hewlett Packard (HP) and Delta Dental.
Goals for Obtaining Data
- Paid Claims and Encounters Standard 35C-File: Research, Public Health Analysis & Policy Setting, Program
Management and Control, Budgeting (Local Assistance and Administration Support), Rate Setting, Fraud &
Abuse (Surveillance, Restricted Services, Case Finding, Case Building, Court Documents, etc.), Audits, Third
Party Collections (Auto accidents, estates, etc.), Medicaid funding for other Departments/Programs (Mental
Health/ADP - Short Doyle, Waivers for DDS, AIDS etc.), State and Federal Reporting, Drug Rebate - Volume
59
purchase information, Comparing Health Models (FFS vs. Managed Care), and Data Warehousing, Data
Mining and drill down.
Information Collected in the Data
- Paid Claims and Encounters Standard 35C-File:
http://www.dhcs.ca.gov/provgovpart/Documents/PdClms_S35C_FileDED.pdf
State Disability Employment
Owner of Data: State of California, Employment Development Department
Data Source:
Disability insurance claims forms filled out by workers
Data Frequency:
Lag-Time to Publication
Processes of Obtaining Data
Goals for Obtaining Data
Information Collected in the Data
- Disability Insurance Claim Form: http://www.edd.ca.gov/pdf_pub_ctr/de2501.pdf,
http://www.edd.ca.gov/About_EDD/Quick_Statistics.htm#DIStatistics
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Appendix 6: Building Integrated Information Systems for Chronic
Care: The California Experience
Shugarman, Lisa R., Nishita, Christy M. and Wilber, Kathleen H.(2006) 'Building Integrated Information
Systems for Chronic Care: The California Experience', Home Health Care Services Quarterly, 25: 3, 185
—200
To link to this Article: DOI: 10.1300/J027v25n03_11
URL: http://dx.doi.org/10.1300/J027v25n03_11
ABSTRACT. For over three decades, chronic-care services have been described as fragmented, complex,
difficult to access, overlapping, and duplicative in function. Although a number of remedies have been
implemented to improve service delivery, little has been written about the potential of integrated
information systems (IIS) to serve as a remedy to fragmentation. We begin to address this gap by
comparing and contrasting three unique models of chronic-care IIS developed in California to improve
service delivery. To analyze the current status of each IIS, we apply six design criteria: (1) the
information on programs and services is comprehensive, (2) the system has the capacity to serve the
needs of diverse users, (3) the system integrates multiple layers and levels of information, (4) information
from multiple sources is standardized and uniform, (5) information can be accessed in a timely manner,
and (6) provisions are adequate to meet all requirements for privacy and confidentiality. Although much
work remains to be done, there is reason to be optimistic that innovative IIS can contribute to the
development of more effective chronic-care delivery systems.
BACKGROUND
The Need for Integrated Care
Approximately one-third or 125 million Americans have one or more chronic illnesses; this proportion
increases to nine out of every 10 Medicare beneficiaries (Anderson and Knickman 2001; Institute of
Medicine 2001; Kaiser Family Foundation 2005). And although the majority of health care dollars are
devoted to treating chronic illnesses, accessing appropriate care requires skilled navigation through a
medical care system that is generally not oriented around the needs of chronically ill individuals.
Moreover, consumers who have multiple chronic conditions often require a complex mix of services
typically offered by different providers in a range of home, community, and institutional settings. To
acquire needed care at the appropriate times consumers themselves and/or their families must coordinate
several disparate financing and delivery systems. Problematic tasks include assessing needs, assembling
individualized service packages, coordinating services and providers, monitoring health and functional
status, and responding to crises (Kodner and Spreeuwenberg 2002). In a report by the Institute of
Medicine, this complex mix of services was characterized as a “nightmare to navigate” (2001, p. 4).
An integrated chronic-care system that can address these problems is defined as a “set of methods and
models on the funding, administrative, organizational, service delivery, and clinical levels designed to
create connectivity, alignment, and collaboration within and between the cure and care sectors” (Kodner
and Spreeuwenberg 2002, p. 3). One method of integration is through information systems, defined as an
array of information sets that are linked together to better capture, organize, and coordinate data sources
(Shugarman and Zawadski 2005).
The Potential of Information Systems
The Internet has become a powerful tool for obtaining information and sharing data. In the field of
chronic care, the Internet holds the promise of building a virtual system to link consumers, providers,
administrators, and policymakers to information on an array of programs and services needed by
individuals with long term illnesses or chronic impairments. In addition, with the increasing presence of
61
electronic medical records (EMRs), the Internet may become a common tool for viewing and maintaining
patient records. The intended goal is to build systems that can overcome the fragmentation inherent in
chronic care by effectively structuring information across such diverse areas as acute, primary,
rehabilitative, and personal care; home and community-based services; facility-based care; and assistive
devices.
The Internet’s power to organize and make available information in real time offers a relatively low cost
approach to coordinate the complex array of health and long term care services. Moreover, an integrated
information system (IIS) is useful for a variety of potential users, including direct consumers of chroniccare services and their families, case managers, providers, administrators, and policymakers. Information
and the electronic infrastructure (including all sources from servers to desktop computers) that hold the
information have been designed to support program managers in establishing eligibility, paying providers,
developing care plans, and tracking utilization over time. In this paper, we focus on the role of
information and information systems in publicly funded community-based long term and chronic-care
systems. Like most states, California provides care and services through such programs as personal care
services, home health, case management, and Adult Day Care with authority for these programs cutting
across a variety of local- and state-level departments including the Departments of Aging, Health
Services, Mental Health, Rehabilitation, and Social Services.
An IIS offers consumers (e.g., patients, clients, residents) several important benefits including improved
access to information about programs and services, treatment updates, and disease management
approaches to help them better manage their illness. In addition to providing similar information to
providers, the Internet offers the untapped potential to share information, reducing the burden of multiple
assessments on the client and increasing efficiency in the system by reducing duplication. Providers and
administrators can also use aggregate data to create and disseminate reports and linked information that
can be used to support decision-making at the micro (e.g., care planning and service allocation for the
consumer), mezzo (e.g., feedback for the provider), and macro (e.g., policy-making for the state) levels.
An IIS offers the potential to integrate clinical, administrative, and financial operations, linking key
players in order to improve care for consumers, as well as for the system as a whole.
Despite the promise of an integrated information system, developing an effective chronic-care IIS is
challenging because it requires incorporating information from an array of diverse sources for a variety of
different users with different informational needs. For example, consumers want information about
available services and products that target their needs. To determine each individual’s eligibility for
services, case managers need to know how programs assess need, as well as the types and sources of
information that have already been collected on patients/clients. They also need to coordinate information
from the various providers who may be involved in each person’s care. Administrators and policymakers
often look for information to justify the existence of programs through improved outcomes or to assess
cost effectiveness. In addition to serving different users, information across the continuum of chronic-care
services typically is collected and managed by various sources often using different instruments,
measures, and data systems. Thus, an IIS requires the use of common instruments and protocols for data
collection and management or at the very least a means to crosswalk data from diverse sources. Although
the need for an IIS is well recognized and is one of the major building blocks of chronic-care service
integration (National Chronic Care Consortium 2001), we are unaware of any existing chronic-care IIS
evaluation. However, before undertaking a formal evaluation of these systems, key characteristics and
components of IIS and descriptions of actual IIS designed for the chronically ill population need to be
identified. As a first step, researchers should establish important criteria for the development of integrated
system for the chronically ill and apply these criteria to the structure and operations of current programs.
This initial step will guide further program development and facilitate evaluations of the impact,
effectiveness, and outcomes of IIS.
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The purpose of this paper is to address this gap by identifying, describing, and applying key design
criteria necessary for an effective chronic-care IIS system. These criteria, which emerged from a review
of the limited literature on chronic-care IIS (Leutz, Greenlick et al. 1994; Leutz 1999; Shugarman and
Zawadski 2005), and from discussions with providers and policymakers, include (1) that information on
the array of programs and services that comprise the chronic-care delivery system is comprehensive; (2)
that the system has the capacity to serve the needs of diverse users including consumers, providers,
program administrators, and system-level decision makers; (3) that the software can integrate, store and
make accessible multiple levels and layers of information; (4) that the data elements included in the IIS
are accessible and uniform across programs to facilitate data sharing and reduce duplication in
information-gathering efforts; (5) that the system provides timely information; and (6) that privacy of
information on individuals is adequately safeguarded. This paper applies these criteria to three promising
practices developed in California in 2001. We begin by examining the six specific design criteria before
turning to a brief overview of the background and characteristics of the three IIS models.
Design Components of an Integrated Information System
Comprehensiveness of Information on Programs and Services
The ideal IIS brings together a broad array of information on medical, social, housing, and supportive
services needed by people with chronic diseases and disabilities. In addition, it should integrate payment
information from federal, state, and local funding sources (i.e., Medicare, Medicaid, and “categorical”
programs aimed at specific populations such as the aged, disabled, mentally ill, or developmentally
disabled). The administrative infrastructure, including governance, accounting, and patient-level and
management information systems, also needs to be integrated across services, funding sources, and
populations (California Center for Long Term Care Integration 2004).
Capacity to Serve Diverse Users
There are several categories of IIS users, including service recipients and family members, those who
arrange services (e.g., case managers, hospital discharge planners), direct providers of service (e.g., social
workers, home health aides, nurses, therapists), program managers and administrators, and those charged
with oversight (e.g., regulators, monitors, funding agencies). For direct consumers of care, the Internet is
the most logical medium by which to access information on a wide scale, as it is already a major source
for health care information. Chronically ill people and their families currently comprise more than onethird of all users of Internet-based health care information (Cain, Sarahsohn-Kahn et al. 2000). The
proportion of seniors using the Internet has increased by almost 50 percent in the 2000-2004 period and
about two-thirds of these individuals have used the Internet to look for health or medical information (Fox
2004). Internet services are increasingly inexpensive, easy to access, and widely available. According to
one report, over 80 percent of all households will have Internet access by 2010 (eTForecasts 2005).
Making relevant health care information available in an accessible manner through the Internet can
facilitate the consumer’s involvement in self-care.
Consumers want information about available services and products that target their needs to help them
make educated decisions about the care they receive; and to the extent that they wish to do so, consumers
should have access to information needed to participate in decision making processes related to their care.
Additionally, access to information about community-based chronic-care providers in their area, what
services they provide, how to enroll, and what accommodations are made for those with special needs
(e.g., language, physical challenges, etc.) facilitates informed choice.
Comprehensive web-based information is also useful to discharge planners and case managers. Resources
should include those specific to the local community and the network of federal and state resources case
managers also need to know what programs and services are available, as well as how programs assess
need and determine eligibility, and the types and sources of information that have already been collected
from providers involved in each person’s care. Administrators and policymakers often look for
63
information to justify the existence of programs through improved outcomes or to assess cost
effectiveness.
Ability to Integrate Levels and Layers of Information
In addition to serving different users, an IIS should integrate information at multiple levels, including
information related to consumers, providers, organizations, and the system. At the consumer level, the
system should link assessment information over time, track outcomes, and link service use and outcomes
to cost across all involved providers. Enabling providers to share information about consumers can reduce
duplication of efforts, which in turn can reduce waste in the system (both financial and time). In order to
maximize efficiency, data should be entered once and systems should be set up that enable the transfer of
that information to another provider or system. Additionally, sharing information across providers can
reduce the number of assessments, particularly when different providers ask for similar information. The
IIS should also be able to aggregate individual data to evaluate cost effectiveness of each program and of
the system. Finally, integrating information within and across organizations produces some of the same
efficiencies as sharing information across providers. This information can be used to track services and
costs of consumers served by multiple agencies and allow policy analysis and budget tracking.
Accessibility and Uniformity of Information
Managing the complexity of information from multiple sources and providers requires that both the
technology and software are flexible and accessible. Uniformity in key data elements across providers and
sites facilitates assessment of quality of care and the comparison of outcomes across settings. Uniformity
also ensures that all parties involved are speaking the same “language.” Chronic-care information comes
from a variety of sources: enrollment files (tracking program eligibility), administrative files (tracking
encounters between client and provider), surveys or assessments (tracking changes in functioning, health
status, health risks/behaviors, satisfaction, etc.), and clinical information (i.e., medical records, lab results,
etc.) from acute, primary, and long term care services (Shugarman and Zawadski 2005). IIS participants
need to agree on a core set of data elements for assessment and tracking that can be shared across all
participating providers, while also allowing providers to collect information unique to their own service
needs. Ideally, all data sources will use the same software platform, or at a minimum make provisions for
cross-walking data. Additionally, linking resources requires unique identifiers (for both consumer and
provider) that are shared across providers and information sources.
Timely Access to Information
Timely access to information is important for the consumer, the provider, and policymakers. Consumers
require up-to-date information on community resources to make decisions about their care. From the
provider perspective, having information about the consumer in “real time” improves the ability of the
provider to develop care plans that meet the needs of the consumer today. Real-time information about
the service population needs and costs may facilitate better planning and the ability to make “mid-course
corrections” to existing policies to reflect changing needs and circumstances.
Safeguarding the Privacy of Information
An IIS must be compliant with the Privacy Rule, which is part of the Health Insurance Portability and
Accountability Act (HIPAA). HIPAA includes regulations safeguarding the privacy of health
information, introducing a federal floor of privacy protection for individuals (Department of Health and
Human Services Office for Civil Rights 2003). The Privacy Rule limits the ability of covered health care
providers, health plans and other institutions (referred to as Covered Entities) to use or share protected
health information (PHI) for their patients or clients. Providers are not restricted by the regulations in
sharing information that is needed to treat the patient’s condition or to develop a course of treatment;
however, patients must be notified of how their PHI may be used or shared.
64
Although the Privacy Rule only addresses the handling of health information, an IIS that incorporates
health care providers and social services providers will need to abide by the regulation, given that health
care information will likely be relevant to establishing a care plan in the home or other setting in which
the client resides. The Privacy Rule not only defines what is protected health information and who is
subject to the regulations but it also establishes rules to ensure the security of the information in its
storage and transfer. The Rule requires that administrative procedures (e.g., written procedures and
guidelines for security) and physical safeguards (e.g., assurances that only authorized individuals have
access to information) are established by Covered Entities. Additionally, the Rule requires the
implementation of technical security processes and mechanisms to protect, control, and monitor access to
information within the organization and when transmitting information over a network.
IIS Models in California
California, like most other states, faces a number of challenges as it struggles to integrate chronic-care
services. These include inflexible California, like most other states, faces a number of challenges as it
struggles to integrate chronic-care services. These include inflexible and “siloed” funding sources and
regulations that foster the fragmentation of responsibility. Building on three decades of efforts to improve
chronic-care service delivery (Wilber 2001), former Governor Gray Davis’ “Aging with Dignity
Initiative” provided one-time start-up funds
in 2001 to several targeted areas including innovative coordination and collaborative partnerships. A total
of three projects were funded to develop chronic-care IIS–Network of Care, CareAccess, and SFGetCare. Illustrating the nascent state of the field, none of these California IIS have been formally
evaluated Given the relatively recent development and implementation of these programs, we take the
first step in analyzing the design and characteristics of these programs by applying the design criteria to
each program. Table 1 summarizes compliance with the integration design criteria by assigning programs
a score of “low,” “moderate,” or “high” compliance with each criteria.
Network of Care. Network of Care (www.networkofcare.org) is a web-based service, which offers
information about the spectrum of services available and the providers in each county where it is located.
Network of Care, first developed for Alameda and Sacramento counties, has been adopted in 19
additional counties2 with more scheduled for the near future. The primary focus is the “Resource Finder,”
a searchable database of local providers. In addition, Network of Care includes a secure site for
consumers and their caregivers to create a record of medical information that includes physician contact
information (e.g., names, phone numbers), medical history (e.g., diagnoses, medications, allergies),
histories of medical appointments, insurance information, etc. The website also includes a database of
assistive devices that can be searched by function, manufacturer, and brand name. There is a library that
enables consumers to access health care information and resources as well as a collection of articles
targeted specifically for caregivers. Finally, the website includes a link to recent news articles of interest
and links to both state and federal legislature and bill tracking. Service provider data and educational
materials are updated on a monthly basis and newspaper articles and advocacy materials are added to the
site daily. These services are provided by Network of Care staff, who are paid by each participating
county to maintain and regularly update the program.
Network of Care’s strengths are that it offers comprehensive information for a diverse array of users, as
well was provide information in several languages. Although consumers have the option of entering and
maintaining information in their individual private files, Network of Care currently does not provide for
system-level consumer assessment or tracking information. Furthermore, although Network of Care has
seen rapid dissemination to California counties since its inception in 2001, it is unclear how well Network
of Care’s efforts are coordinated with existing aging network information and referral (I & R) as well as
other county-based consumer information systems. Nevertheless, useful information is easy to access and
updated regularly. Consumers are provided with timely information, with legislative information and
news updated daily and service information updated monthly. Feedback from consumers to the
65
developers suggests that Network of Care is a user-friendly technology and provides useful resources.
The developers report that they served over 700,000 individuals in California in 2003 (Afshin Khosravi,
CEO of TrilogyIR, personal communication, March 8, 2004). Maintaining privacy is not an issue because
the personal health information that can be stored on the website is password protected by the individual
patient who is the only one who can give special permission for others to view it.
CareAccess. CareAccess (formerly Partnership for Integrated Data Management or PIDM) was developed
by a consortium of California counties3 as an Internet-based tool for providers, including social workers,
and care managers to share information about individual consumers (disabled adults, age 18 and over)
across five different services. The services linked by CareAccess include two care management programs:
Linkages, funded with state general funds to serve people aged 18 + and Multipurpose Senior Services
Program (MSSP), California’s Home and Community-Based Medicaid Waiver Program that service
nursing home certifiable individuals aged 65+. The other three services/programs are: Adult Protective
Services, California’s personal care program (In-Home Supportive Services-IHSS), and Home Delivered
Meals (funded by the Older Americans Act to serve people aged 60+). CareAccess enables providers and
the county to access information across those programs on a “real-time” basis. A key feature is its use of a
single assessment instrument completed during the client’s first contact with the system. Additional
providers can access assessment care plan information, thus increasing efficiencies in the system and
reducing the burden to the client.
CareAccess is relatively comprehensive because it is a system that integrates case management
information from multiple agencies and facilitates the sharing of client information among providers. The
program, which is primarily used by providers, does benefit multiple users at various levels of integration.
At the consumer level, the use of a uniform assessment and consolidated database of services benefits
both the recipients of services and increases provider efficiency in part because the consumer avoids
multiple assessments by multiple providers. At the organizational level, CareAccess integrates
information across various agencies to facilitate information sharing. Enrollment files and client
assessment information is accessible to providers and is uniform because of a standardized software
platform. Data can be available in real time, although this may vary depending on whether information is
entered directly into the system (e.g., via laptop) or completed on paper forms and then entered into the
system at a later time. However, it is limited in scope to five participating services. Privacy issues are
addressed by restricting access to county service providers who are authorized to share consumer
information within the county structure.
SF-GetCare. Developed by the Department of Aging and Adult Services (DAAS) and RTZ Associates
(technical consultant) in San Francisco County, SF-GetCare (www.sfgetcare.com) includes both a
consumer- tracking component and a resource directory. The system includes a “care tool,” which enables
DAAS and providers who contract with the Department to assess, refer, enroll, and track long term care
consumers and the services they receive. DAAS and its associated providers all have access to the system
to record, track, manage, and report information on the population they serve. A single assessment
instrument standardizes and automates the assessment process across different programs. SF-GetCare’s
online provider directory allows consumers, caregivers, and discharge planners access through the
Internet to search for needed services. Service provider data for SF-GetCare is updated each quarter or
when new information is available. The developers of SF-GetCare have been building an online multiagency case management system that will allow multiple programs to serve the same individual and
coordinate care by sharing assessments, care plans, and progress notes.
Given this ambitious agenda, SF-GetCare has faced numerous challenges since its implementation. A
pilot project was planned to test the multi-agency case management component; however, budget cuts at
the county level have required them to postpone implementation. The $2 million budget established to run
the SF-GetCare system was recently cut and the remaining budget supports only a “bare-bones”
66
operation. According to administrative staff in San Francisco, the existing system has varied
effectiveness; there are approximately 1000 services in the service directory, translated into multiple
languages. The existing assessment tool, is currently being used by many providers to support care
planning within the provider organization and sharing of information across providers and the information
can be aggregated and made available at the county level for policy development and planning. However,
there is a continuous need for training providers in the use of the care tool as there are high levels of
turnover among provider agencies. DAAS, working with the site developer is soliciting provider feedback
to make the tool more useful. Although the care tool reduces duplicate entry of basic client information,
this does not reduce duplication because providers must complete information in the care tool on their
clients and report duplicate information, albeit in a different format to the state and/or federal
government. Thus, being compliant with state and federal regulatory requirements requires double data
entry. Nevertheless, the online resource is seen as a benefit for consumers to the county and there are no
intentions of moving away from the technology.
SF-GetCare is an effort to provide all the design criteria of an integrative system. It seeks to be
comprehensive by providing both a resource directory and a mechanism to assess and track consumers
across services. The system serves the needs of diverse users, particularly providers, consumers, and their
families. At the same time, the system is integrated at both consumer and provider levels and further
strives for integration at the organizational level because it plans to coordinate case management
information from multiple agencies. Information is both accessible and uniform because enrollment and
assessment information is available using a uniform software platform. From the perspective of the
resource directory, SF-GetCare offers to make updated provider information available to potential
consumers on a quarterly basis. Consumer information can be entered and accessed in a timely manner.
One of the major challenges, however, is getting providers to regularly update their information. Because
many providers do not view the system as a marketing tool for capturing new clients, they lack an
incentive to update their information on a regular basis. Finally, client information is available to selected
providers only and consumers are unable to access safeguarded health information on the Internet,
thereby ensuring privacy protection.
DISCUSSION
The three California programs are still in their infancy in terms of their implementation. In analyzing the
design of these programs, SFCare is the most integrated because it coordinates both consumer and
provider information. It strives to become integrated on an organizational level as well by combining
multiple case management systems, but faces budget cuts and other political problems. In comparison,
Network of Care and CareAccess are less comprehensive, each focusing on one target group and layer of
integration, either the consumer or provider level. Nevertheless, Network of Care links a comprehensive
array of resource for consumers (i.e., provider directory, sources for durable medical equipment, medical
data, and legislative updates). CareAccess’s strength is in its use of a uniform client assessment that can
be shared among providers and, therefore, reduces duplication and inefficiency. These two programs lack
the characteristics of a fully integrated information system, but can serve as a platform to a future
expansion of integration efforts.
SF-GetCare, which strives to be the most fully integrated system, also faces the most barriers and
challenges in implementation. The program faces budget cuts and high levels of turnover among provider
agencies. In addition, governmental requirements and regulations can hamper efforts at integration
because providers must complete the care tool and report duplicate information in different formats to the
state or federal government. Furthermore, sustainability of the program seems challenging because it
requires buy-in from providers, who need incentives to regularly update their provider information. In
comparison, the Network of Care reports wide utilization by individuals in California and rapid
dissemination to various California counties.
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CONCLUSION
Clearly, there is still more to learn about the optimal structures for an integrated chronic-care information
system. State budget constraints may curtail some of the efforts to expand integrated information systems
but it does not appear that reduced funding has turned counties back to the “old way” of operating. Next
steps should include a formal evaluation to understand how compliance with the different integration
design criteria serve intended populations. In particular, next steps should focus on IIS performance in:
(1) facilitating consumers ability to access care and whether or not the IIS can produce better outcomes of
care than the current system; (2) sharing assessments and care planning when multiple providers are
involved; (3) reducing duplication; (4) providing data with which to assess overall service delivery
effectiveness; and (5) replicability and sustainability across diverse counties. Currently, there is reason to
believe that these integrated information systems will meet the promise of improving service to
consumers while laying the foundation for better integrated, more effective systems of care for an aging
population.
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Washington, DC, National Academy Press.
Kaiser Family Foundation (2005).Medicare Chartbook, Third Edition.
http://www.kff.org/medicare/upload/Medicare-Chart-Book-3rd-Edition-Summer-2005-Report.pdf.
(Accessed on: February 3, 2006).
Kodner, D. L. and C. Spreeuwenberg (2002). “Integrated care: Meaning, logic, applications, and
implications: A discussion paper.” International Journal of Integrated Care 2(3).
Leutz, W. N. (1999). “Five laws for integrating medical and social services: Lessons from the United
States and the United Kingdom.” MilbankQ77(1): 77-110, iv-v.
Leutz, W. N., M. R. Greenlick et al. (1994). “Integrating acute and long-term care.” Health Aff
(Millwood) 13(4): 58-74.
68
National Chronic Care Consortium (2001). Integrating Information: Selected Issues.
http://www.hhp.umd.edu/AGING/MMIP/TApapers/TApaper10.pdf. (Accessed on: April 23, 2003).
Shugarman, L. R. and R. T. Zawadski (2005). Integrated Information Systems. The Continuum of LongTerm Care, Third Edition. C. J. Evashwick. Clifton Park, NY, Delmar Learning.
Wilber, K. (2001). History of Program, Service, and System Development in California: Themes,
Thoughts, and Lessons Learned. http://www.ltci.ucla.edu/ccltciproducts/CA_ltc_history.ppt . (Accessed
on: February 16, 2004).
69
Appendix 7: California Center for Long Term Care Integration. (2003).
Creating Better Systems of Care for People with Chronic Conditions:
A Building Block Approach; Chronic Care Integration Planning Guide
The aim of integrating services for the chronically ill and disabled is to build effective, consumerfocused systems that organize acute and chronic care financing and service delivery into an
easily accessible array of services and enable providers to deliver cost effective continuity of
care to a defined target population.
Building Block #7: Integrated Information Systems
One of the major building blocks for chronic care integration is the development of integrated
information systems (IIS). An effective IIS integrates clinical, administrative, and financial
operations, linking key players in an individual’s care at all organizational levels (e.g., case
manager, providers, policymakers, etc.) to improve care for consumers and for the system as a
whole. The integration of information builds on QA efforts to develop common data elements
and measures. It requires the integration of program data across programs that can be shared
across providers.
Moving to an integrated information system (IIS) – planning questions





Which agencies, programs, and providers will need to collect and use program data?
Are their existing data and computer systems compatible?
Is there a uniform assessment process?
Are there uniform data elements?
If multiple types of assessment are used, are there mechanisms to integrate (i.e., link) the
information?
Service and provider information base for consumer access
Consumers should have access to information needed to participate in decision-making
processes related to their care (to the extent that they wish to do so). At a minimum, a
centralized repository for information describing the providers and services that are located in
the consumer’s local area should be made available to the public. Criteria for a centralized
repository of information include:



There must be a process for providers listed in the database to correct, update, and
otherwise have input into the form and content of what is presented about them.
Information on providers and services must be kept up to date.
Information should be presented in multiple ways to reach all potential audiences.
Systems, ideally, should be web-based, but also accessible by telephone and through
specialized equipment for various disabilities. Additionally, provider information should be
available as a directory or resource guide that can be placed in libraries, senior centers,
doctors’ offices, and can be easily used by people who do not have computers or special
equipment.
70


Information must be translated into languages used by the target audience, including
Braille.
Active promotion must be used to ensure that all stakeholders are aware of the service
and are encouraged to use it. Promotion must include media in local neighborhoods and
in the same languages as are used in the database translations.
Client-level information base
The second level of a centralized information source is a client-level database that enables
shared access across providers to intake and assessment information, care plans, key health
data, and service utilization information. If true coordination is to happen, such that the client
does not experience duplication and fragmentation, then providers and care managers will need
to have access to relevant client data. Each provider participating in a shared client-level
information system would need to agree to the data elements included in the client record.
Most plans for a client-level information system have multiple levels of security and specificity.
Figure 3 shows that each record would have core data elements that every user would need.
These include such things as the client’s name and address, eligibility information, and
information about the person to contact in case of emergency. The second level of information
would include functional assessment results and other information that would be useful to most
providers. At the third level would be the most sensitive information as well as the most
specific. Medical information such as diagnoses and medications would go here. At this level
would also be more agency-specific information such as food preferences for meal programs
and activity interests for day care programs. Each level would have appropriate security
features to enable only those who need the information to gain access to it.
Fig. 3: Client-level information
Name, Address
SSN
Aid Code
Informal
Supports
Food
preferences
Activity Interests
Medications
Diagnoses
Increasing specificity
Functional
Assessment:
ADL
IADL
Cognitive
Agency-specific
data elements
Shared
Assessment
Elements
Core
Universal
Data
Elements
Design criteria for client-level information system
71




Agreement from participants on core data elements to include in a uniform assessment
tool or agreement on an “off the shelf” system.
A hierarchical or nested approach to data elements – going from identification information
(client name, address, etc.), to general information about condition (ADLs, cognitive
status, social supports, etc.), to program-specific information (such as food preferences for
a meal plan).
Multiple-level access provisions assigned on a “need-to-know” basis.
HIPAA-compliant privacy protections (CMS Main HIPAA page:
www.cms.gov/hipaageninfo/




Redundancy and backup so that access is virtually guaranteed.
Compatibility with handheld systems (optional, but more and more providers are using
such systems to enter data at the “bedside”).
Decentralized data upload.
Compatibility with “smart card” technology that can be encoded on a credit-card type of
medium that can be carried to ensure that important information is available to nonnetwork providers in an emergency
In order to make the phase-in of such a system as painless as possible, it is important to design
familiar views/forms for each participant that automatically display information from other
sources in the relevant data fields (with reference to the original source). In other words, if
another provider has already entered information called for in an agency’s assessment form, it
will be entered automatically and show where the information came from. The agency would
then have the choice of accepting that information or deleting it (if they have that level of
security access) and entering their own. For example, any information used in both IHSS and
MSSP assessment forms would automatically show up formatted according to the requirements
of each program. This is a fairly typical database function.
This concept is in the infancy stages presently. The hardware, software, and agreements/
protocols necessary to implement this system will require substantial investments from
participants and from state and county government.
Uniform assessment
Part of the problem of fragmentation is the burden of multiple assessments and reporting
requirements. Uniform assessment facilitates client tracking over time and uses the same
instrument no matter where someone enters the system. Even if the payment and/or service
delivery systems are not completely integrated, uniform assessment will be of value.
One example of a uniform assessment instrument is the Minimum Data Set for Home Care
(MDS-HC). The MDS-HC is a comprehensive instrument, designed for care planning, that
collects information on clinical, functional, and social characteristics of the client. The
information that is collected serves as the basis of algorithms or “triggers” that can be used to
identify potential problems that might be addressed by care planning. The associated client
assessment protocols (CAPs) assist the care planner in thinking through the design of an
appropriate care plan. For every condition identified, a “treatment” suggestion will be inserted
automatically into the care plan and can then be changed, accepted as is, or deleted. The data
72
can also be used for administrative purposes (i.e., policy and planning), tracking outcomes, and
quality assurance. Quality indicators have been developed for the MDS-HC. While it would be
possible to apply the technology of the triggers and CAPs without an automated system, the
process of hand-calculating the triggers would be so burdensome to the case manager as to be
ineffective for most client populations.
Worksheet on integrated information systems
General questions to consider in approaching the design of an IIS:
 Do you intend to use a uniform assessment tool?
 What will be your process for choosing or developing such a tool?
 Who will be involved in choosing or developing it?
 How comprehensive will it be (what types of service will it be designed to encompass)?
 What “off the shelf” IIS product are you using or considering?
 What functions will/does your IIS serve? (See table 10)
Table 10: Worksheet on integrated information systems
Have now
Plan to add
Is or will be
web-based
Consumer education and information
Provider tracking
Client tracking
Enrollment/disenrollment information
Assessment and re-assessment.
Census/socio-demographic
client
information
on
Eligibility data
Utilization data
Medical record
Physician order entry system
Medical care reviews
Service authorization
Appointments
73
Prescription refills
Unusual incident tracking
Complaint and Grievance tracking
Managerial cost/expense tracking
Personnel data
Marketing data
Financial data
Outcomes tracking
Quality assurance
Other:
Other:
Other:
74
Appendix 8: Chapter Two: California Pathways—Review of
Assessment Protocols and Assessment Grid
75
76
77
78
Comparison of Assessment Tools
National Assessment Tools
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
Determines eligibility for nonMedicaid consumers seeking
nursing home placement
N/A
N/A
N/A
Determines Medicaid functional
eligibility (Nursing Facility Level of
Care Determination)
N/A
N/A
N/A
Redetermines functional
eligibility (also used for
reassessment?)
Yes (using an abridged
form)
N/A
No
Assists in nursing home
diversion
N/A
N/A
N/A
Assesses preference to remain
in or transition from nursing home
Yes (with one question,
Q1a)
No
No
N/A
N/A
N/A
Yes (RUGs)
No
No
N/A
N/A
N/A
Yes
Yes
Yes
N/A
N/A
N/A
N/A
N/A
N/A
Yes (RUGS)
No
No
N/A
N/A
N/A
Name of Assessment Tool
How is the tool is used within
the system?
Creates single entry point into
system
Automatically categorizes client
into levels of need
Determines appropriate
placement/living arrangement
(e.g., home, assisted living,
nursing home)
Assessment findings used to
develop care plan
Determines eligibility/
authorization for home &
community-based services
(HCBS)
What funding sources for
services are included?
Automatically linked to
reimbursement level
Determines financial eligibility
79
National Assessment Tools
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
Older Adults, Persons
with Disabilities, Persons
with Developmental
Disabilities/Retardation
in Community NHs
Adults aged 18+ in
home and
community-based
settings
18 +, Nonmaternity Patients
Receiving
Medicare or MediCal Home Care
from Medicare
Agency, (Those
receiving only
personal care,
homemaker
services etc. are
excluded)
Paper/Electronic (to Administer
Assessment)
Both
Both
Both
Use of standardized algorithm to
synthesize responses to
determine level of care and/or
reimbursement level
Yes (RAPs)
Yes (CAPs)
No
Nursing Homes
Multiple (Home
Health Agencies,
Social Worker,
Public/Private Orgs,
etc.)
Home Care
Agencies
Name of Assessment Tool
What populations receive this
assessment?
MDS Full Assessment
Format
Administration of the
Assessment
What organization is responsible
for conducting the assessment?
What type of staff are required to
administer the assessment? (e.g.,
Social Worker, Registered Nurse)
Social Worker, Nurse,
Dietitian, O/T, P/T
Social Worker,
Nurse, Dietitian,
O/T, P/T
RN for
Multidisciplinary
Cases, PT,
SLP/ST, OT or
Primary
Therapists for
Therapy Only
Cases
Where is the assessment
conducted?
Nursing Home
Community
In home
Time to complete
1.5 - 2 hours
1.5 - 2 hours
1 hour
80
National Assessment Tools
Name of Assessment Tool
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
Has the tool been tested for interrater reliability by researchers?
Yes
Yes
Yes
Do Assessors Receive
Training/Certification on Using
the Tool?
Yes
Yes
Yes
N/A
N/A
N/A
Yes
Yes
Yes
Has shared assessment
potential (consistency/usability by
other providers in other
agencies/programs)
Yes (potential to link
MDS with MDS-HC to
track residents over
time)
Yes (potential to
link MDS with
MDS-HC to track
residents over time)
Yes
Enables simplicity/brevity (Leads
the assessor down paths that
need to be followed rather than
requiring Reponses to every item)
No
No
No
Reduces data entry time
N/A
N/A
N/A
Reduces Duplication (repeat
assessments, repeat service
authorizations between programs)
N/A
N/A
N/A
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Systems Integration
Is the tool electronically linked to
intake and referral systems?
Is the tool used to track quality?
(e.g. quality of care, person
receiving the right
services/needed services)
Instruction Manual
Is there an instruction manual?
Does the manual include
guidelines on how to perform the
assessment?
Does the manual have detailed
interview
questions/protocols/script
Demographics
Gender
Race
81
National Assessment Tools
Name of Assessment Tool
Marital status
Education
Date of birth
Language spoken
MDS Full Assessment
MDS for Home
Care
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
OASIS (Outcome
and Assessment
Information Set)
No
No
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Assessor determination,
Staff determination,
Record/Supporting
documentation
Assessor
determination
Assessor
determination,
Self-report
Yes/No, Scale
Yes
Yes
Yes
Yes
Yes
Yes
Scale
Yes
Yes
Yes
Yes
Yes
Yes
Scale
Yes
No
No
No
No
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes (inside room)
Yes (inside corridor)
Yes
Yes
Yes
Yes
Yes
Yes (in home)
Yes (outside home)
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
No
No
No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Referral
Date case opened
Reason for referral
Where lived at time of referral
Who lived with at referral
Physical Functioning- Ability
and Need for Assistance
(ADL/IADL)
How section is measured
How responses are coded
Locomotion
Stair climbing
Wheeling
Stamina
Functional potential
Transfer
Assistive devices (incl. walking
and transferring)
Eating
Bathing
Dressing
Toileting
Hygiene
Mobility inside
Mobility outside
Bed Mobility (Client's ability to
move and change positions while
in bed)
Housework
Laundry
Shopping and errands
Meal preparation & cleanup
Telephone use
Activity Pursuits Patterns
82
National Assessment Tools
Name of Assessment Tool
How section is measured
How responses are coded
Time awake
Involvement in daily activities
Preferred activity setting
General activity preference
Prefers change in daily routine
Cognitive
How section is measured
How responses are coded
Comatose
Memory recall
Decision making skills
Indicators of delirium
Orientation
Use of mini-mental state exam
(MMSE)
Judgment
Change in cognitive pattern
Disease Diagnoses
How section is measured
How responses are coded
Asks for physician name/
specialist name
Heart/Circulation-related
Neurological- related
Musculo-Skeletal- related
Endocrine- related
Psychiatric/mood- related
Pulmonary- related
Nephrology-related
Gastro-Intestinal Related
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
N/A
N/A
N/A
No
No
No
No
No
N/A
No
No
No
No
No
Performancebased, Self-report,
Caregiver
determination
Assessor
determination,
Self-report
Yes/No, Scale
No
Yes
Yes
Yes
No
Scale
No
Yes
Yes
No
Yes
No
No
No
No
Yes
No
No
No
No
MDS Full Assessment
Assessor determination,
Caregiver and Staff
determination, Selfreport
Yes/No, Scale
Yes
Yes
Yes
Yes
Yes
Performance-Based,
Records/Supporting
Documentation,
Assessor Determination,
Caregiver and Staff
Determination
Yes/No, Scale
Yes
Yes
Yes
Yes
Yes
Yes/No, Open-ended
Self-report,
Caregiver
determination,
Records/
Supporting
Documentation
Yes/No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Records/Supporting
Documentation
Self-report,
Records/
Supporting
Documentation
Open-ended
83
National Assessment Tools
Name of Assessment Tool
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
Vitals
How section is measured
How responses are coded
Temperature
Blood Sugar
Pulse
Blood Pressure
Respiration rate
Mood/Behavioral Problems
N/A
N/A
No
No
No
No
No
N/A
N/A
No
No
No
No
No
N/A
N/A
No
No
No
No
No
Self-report, Assessor
Determination
Self-report,
Caregiver
observation
Self-report,
Records/
Supporting
Documentation
Yes/No, Scale
Yes
Yes
Yes
Yes
No
Scale
Yes
Yes
Yes
Yes
No
Open-ended
Yes
Yes
No
No
No
No
No
No
Yes
Yes
Yes
Yes
No
No
How section is measured
Self-report, Assessor
Determination
Self-report,
Caregiver
observation
Self-report,
Records/
Supporting
Documentation
How responses are coded
Scale, Yes/No
Scale
Scale
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
No
Yes
No
No
How section is measured
How responses are coded
Indicators of depression
Indicators of anxiety
Mood change
Behavioral symptoms
Self injury
Significant life changes (death,
divorce, etc.)
Person is violent/suicidal
Use of Restraints (geriatric
chair, vest/belt, wrist/mitten)
Communication/Hearing
Ability to hear
Making self understood
(expression)
Ability to understand others
(comprehension)
Communication decline/changes
Use of communication devices
(hearing aid)
Modes of expression (speech,
signs, etc.)
Speech clarity
84
National Assessment Tools
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
How section is measured
Self-report, Assessor
Determination
Self-report,
Caregiver
observation,
Performance test
Self-report,
Records/
Supporting
Documentation
How responses are coded
Scale, Yes/No
Scale
Scale
Vision (ability to see)
Yes
Yes
Yes
Visual limitations/difficulties
Yes
Yes
No
Vision change
Yes
Yes
No
Use of visual appliances
Yes
Yes
Yes
Records/Supporting
Documentation, Staff or
Caregiver determination,
Self-report
Self-report,
Caregiver
determination,
Records/
Supporting
Documentation
Self-report,
Assessor
determination,
Measurement
Name of Assessment Tool
Vision
Nutrition/Hydration
How section is measured
How responses are coded
Height
Weight (incl. obesity)
Weight change
Consumption/ Intake
Swallowing, Chewing Problem
Special Diet
Food allergies
Nutritional treatments (IV, tube
feeding)
Yes/No, Open-ended,
Scale
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
No
No
Open-ended,
Scale
No
No
No
No
No
Yes
No
Yes
Yes
Yes
Self-report, Direct
examination
Self-report
Yes/No
Yes/No
Self-report,
Assessor
determination
Scale
Yes
Yes
Yes
Yes
Yes
No
Yes/No, Scale
Dental Status
How section is measured
How responses are coded
General Oral status (Odor,
Salivation, Use of Dentures, etc.)
Problem chewing
85
National Assessment Tools
Name of Assessment Tool
MDS Full Assessment
MDS for Home
Care
Problem brushing teeth
Dental care/ Date of last dentist
visit
Yes
Yes
OASIS (Outcome
and Assessment
Information Set)
No
No
No
No
Self-report, Direct
Examination,
Records/Supporting
Documentation
Self-report,
Caregiver
Determination,
Direct Examination,
Records/
Supporting
Documentation
Self-report,
Assessor
Determination
Scale, Yes/No
Scale, Yes/No
Yes/No, Scale
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
No
No
Self-report, Assessor
Determination,
Records/Supporting
Documentation
Self-report
Self-report,
Assessor
Determination
Scale, Yes/No
Yes
Yes
Yes
No
No
No
Scale, Yes/No
Yes
Yes
Yes
No
No
No
Scale
Yes
Yes
Yes
Yes
No
No
Self-report
Self-report
Scale
Scale
Skin Conditions
How section is measured
How responses are coded
Skin problems (rash, burns,
itches, etc.)
Ulcers
Type of ulcer
Other skin problems requiring
treatment
Receipt of wound/ulcer care
Foot problems
Fingernails and toenails (color,
texture)
Incontinence
How section is measured
How responses are coded
Bladder continence
Bladder devices
Bowel continence
Frequency/urgency
Elimination pattern
Change in continence
Health Behaviors
How section is measured
How responses are coded
Self-report, Assessor
determination
Yes/No, Scale
86
National Assessment Tools
Name of Assessment Tool
Preventive health behaviors
Falls
Drinking/ Alcohol
Smoking/ Tobacco
Pain
Exercise
MDS Full Assessment
MDS for Home
Care
No
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
OASIS (Outcome
and Assessment
Information Set)
No
No
No
No
Yes
No
Medications
Yes
Yes
No
Self-report,
Caregiver
Determination,
Assesor
Determination
Open-ended,
Yes/No, Scale
Yes
Yes
Yes
No
Yes
Yes
No
No
No
Yes
No
Yes
How section is measured
Self-report, Assessor
Determination,
Records/Supporting
Documentation
Self-report
Self-report,
Assessor
Determination
How responses are coded
Yes/No
Yes/No
Scale
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
How section is measured
Self-report
Self-report
Self-report,
Assessor
Determination
How responses are coded
Open-ended (By # of
days; hours & mins)
Open-ended (By #
of days; hours &
Scale
How section is measured
Assesor Determination,
Records/Supporting
Documentation
How responses are coded
Open-ended, Yes/No
Number of medications
Types of medications
Compliance
Self-administration or needs
assistance
Medication allergy
Client needs to be reminded
Special
Treatments/Programs/Therapies
Special Treatments (e.g.,
Chemotherapy, Dialysis, IV
medication, Radiation)
Special Programs (e.g.,
mood/behavior, alcohol/drug
treatment)
Therapies (e.g., speech, PT,
OT, respiratory, psychological)
Self-report,
Assessor
Determination
Scale
No
No
Yes
Service Utilization
87
National Assessment Tools
Name of Assessment Tool
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
mins)
Impending surgery
Home health aides
Visiting nurses
Meals
Homemaking services
PT/OT
Day care
Social worker
Equipment management
Other specific programs (MSSP,
ADHC, CIL, NF waiver, etc.)
No
No
No
No
No
Yes
No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
Yes
No
No
No
Social Functioning
How section is measured
How responses are coded
Involvement in activities
Change in social activities
Isolation
Unsettled relationships (conflict,
anger, no contact w/ kin)
Significant current/past
activities/interests
Yes/No
Yes
No
No
Self-report,
Assessor
Determination
Yes/No
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
N/A
N/A
No
No
No
Self-report
Open-Ended; Scale
Yes
Yes
Yes
Self-report
Scale
Yes
Yes
Yes
N/A
Assessor
Determination
N/A
No
Yes/No
Yes
Assessor
Determination,
Self-report
Scale
Yes
No
Yes
Yes
No
Yes
No
Self-report, Assessor
Determination
N/A
N/A
No
No
No
Informal Support / Caregiving
How section is measured
How responses are coded
Key informal helpers
Caregiver status
Extent of informal help (hrs)
Living Arrangements
How section is measured
How responses are coded
Living with another person
Living situation (apt., house,
etc).
Client or another feels client
would be better in another
environment
88
National Assessment Tools
Name of Assessment Tool
MDS Full Assessment
MDS for Home
Care
OASIS (Outcome
and Assessment
Information Set)
Home Environment
How section is measured
How responses are coded
Access to home
Access to rooms
Lighting
Flooring/carpeting
Kitchen
Heating/cooling
Personal safety
Bathroom
Phone Accessible/usable
Home modifications required
Pets
Smoke detector
Emergency plan in place
N/A
No
No
No
No
No
No
No
No
No
No
No
No
No
Assessor
Determination
Yes/No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
N/A
Self-report
N/A
Scale
Self-report,
Assessor
Determination
Scale
No
Yes
Yes
No
No
Yes
No
Yes
No
N/A
N/A
No
No
No
Self-report
Scale
Yes
Yes
No
N/A
N/A
No
No
No
N/A
N/A
No
No
N/A
N/A
No
No
N/A
N/A
No
No
N/A
N/A
N/A
No
No
No
No
No
No
No
No
No
No
No
No
No
Transportation
How section is measured
How responses are coded
Ability to Drive/ Use
Transportation Services
Difficulties/Limitations
Transportation Preferences
Money Management/Finances
How section is measured
How responses are coded
Ability to Manage Money/Finances
Difficulties/Limitations
Preferences
Current Employment
How section is measured
How responses are coded
Employment Status/History
Job Type
Legal Issues
89
National Assessment Tools
OASIS (Outcome
and Assessment
Information Set)
Self-report,
Assessor
Determination
MDS Full Assessment
MDS for Home
Care
Records/Supporting
Documentation
Records/Supporting
Documentation
Yes/No
Yes
Yes
Yes/No
Yes
Yes
Scale
No
No
Yes
Yes
Yes
No
Yes
No
How section is measured
Self-report
N/A
N/A
How responses are coded
Yes/No
N/A
N/A
Yes
No
No
Yes
No
No
No
No
No
No
No
No
Name of Assessment Tool
How section is measured
How responses are coded
Conservator
Legal guardian
Advanced directives/ Durable
power of attorney
Potential for Abuse/Neglect
Preference
Assesses individual preference
for living arrangements
Family/friends support client's
preference
Family/friends oppose client's
preference
Any difficulties in meeting
preference (e.g. what would make
it difficult for person to live in
different setting)
90
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Name of
Assessment Tool
MSSP
Assessment
Tools: Initial
Health, Initial
Psychosocial,
Reassessment,
and Deinstitutional
Case
Management
(DCM)
IHSS
Assessment
Standards
California
Assisted
Living Waiver
Assessment
Tool
San Mateo
County InterRAI HC
Transitions
Initial
Interview
No
No
No
No
No
Yes
No
Yes
No
No
No
No
How is the tool is
used within the
system?
Determines
eligibility for nonMedicaid
consumers seeking
nursing home
placement
Determines
Medicaid functional
eligibility (Nursing
Facility Level of
Care
Determination)
Redetermines
functional eligibility
(also used for
reassessment?)
Assists in nursing
home diversion
Yes (using
reassessment
tool)
No
Yes
No,
reassessment
will be
abridged
Yes
No
Yes
Yes
91
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
Assesses
preference to
remain in or
transition from
nursing home
Yes (using
DCM tool)
Creates single
entry point into
system
Automatically
categorizes client
into levels of need
Determines
appropriate
placement/living
arrangement (e.g.,
home, assisted
living, nursing
home)
Assessment
findings used to
develop care plan
Determines
eligibility/
authorization for
home & communitybased services
(HCBS)
What funding
sources for services
are included?
In-home
Supportive
Services
Program
No (but, do
conduct a
needs
assessment
of eligible
applicant who
wants to
transition
from nursing
home)
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
No
Yes
No
No
No
Yes
No
No
Yes
Yes
Yes
No
No
No
Determines
eligibility for
ALWPP--not
whether
ALWPP is the
most
appropriate
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
County,
State, and
Federal
Funds
Medicaid
HCBS Waiver
Programs,
Medicaid State
Plan Services,
OAA, SSBG,
State General
Revenue
N/A
N/A
Medicaid
HCBS Waiver
Programs,
Medicaid State
Plan Services,
OAA, SSBG,
State General
Revenue
92
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Automatically
linked to
reimbursement
level
Determines
financial eligibility
What
populations
receive this
assessment?
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
No
Yes
Yes
No
No
No
No
No
No
No
Older Adults
65+ and NF
Certifiable
Adults 65
years or over,
or legally
blind, or
disabled,
including
disabled
children
Older Adults,
Persons with
Disabilities
Aged 21 or
older
Older adults,
persons with
physical
disabilities,
persons with
developmental
disabilities or
retardation,
children,
persons with
AIDS or
symptomatic
HIV
Persons with
disabilities of
all ages
Both
Paper
(maintained
Electronically)
Paper
Electronic
Paper
No
Yes (to
determine
NSI or SI,
number of hrs
and
reimbursem’t
level
Yes
Yes (to
determine care
level/service
needs)
No
Local MSSP
sites, 41 sites
in CA
County
Department
of Public
Social
Services
(most
counties)
ALWPP Care
Coordination
Agencies
San Mateo
Division of
Aging and
Adult Services
Community
Resources
for
Independenc
e
Format
Paper/Electronic (to
Administer
Assessment)
Use of standardized
algorithm to
synthesize
responses to
determine level of
care and/or
reimbursement
level
Administration of
the Assessment
What organization
is responsible for
conducting the
assessment?
93
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
What type of staff
are required to
administer the
assessment? (e.g.,
Social Worker,
Registered Nurse)
Social Worker
& RN
County Social
Workers (at
client's home)
Registered
Nurses
Social Worker,
Registered
Nurse
Nurse,
Social
Worker
Where is the
assessment
conducted?
In home
In home, in
institution
Face-to-face;
Wherever
Potential
Client is Living
In home
In person
Time to complete
Initial- 2-3 hrs/
Reassessment
1.5 hours,
DCM - 3 hrs
1-2 hours
Don't Know
Tool in
development,
estimate: 1.5
hours
2-2.5 hours
No
Yes, IRR
was
adequate;,
Case Review
Team
Monitors
"Uniformity")
No
No- in
development
stage
No
Yes, on the job
training
Yes
Yes, by CHDS
and NCB
Development
Corp
Training will be
done
No
No
No
No
Yes
No
No
No
Yes
No
No
No
No
No
Yes
No
Has the tool been
tested for inter-rater
reliability by
researchers?
Do Assessors
Receive
Training/Certificati
on on Using the
Tool?
Systems
Integration
Is the tool
electronically linked
to intake and
referral systems?
Is the tool used to
track quality? (e.g.
quality of care,
person receiving
the right
services/needed
services)
Has shared
assessment
potential
94
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
(consistency/usabili
ty by other
providers in other
agencies/programs)
Enables
simplicity/brevity
(Leads the
assessor down
paths that need to
be followed rather
than requiring
responses to every
item)
Reduces data entry
time
Reduces
Duplication (repeat
assessments,
repeat service
authorizations
between programs)
Instruction Manual
Is there an
instruction manual?
Does the manual
include guidelines
on how to perform
the assessment?
Does the manual
have detailed
interview
questions/protocols/
script
Demographics
Gender
Race
Marital status
Education
Date of birth
Language spoken
Referral
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
No
No
No
Yes
No
No
No
No
Yes
No
No
No
No
Yes
No
Yes
Yes
In
development
Not at this
point
No
Yes
Yes
In
development
N/A
N/A
No
Yes
In
development
N/A
N/A
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
95
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Date case
opened
Reason for
referral
Where lived at
time of referral
Who lived with at
referral
Physical
FunctioningAbility and Need
for Assistance
(ADL/IADL)
How section
is measured
How
responses are
coded
Locomotion
Stair climbing
Wheeling
Stamina
Functional
potential
Transfer
Assistive devices
(incl. walking and
transferring)
Eating
Bathing
Dressing
Toileting
Hygiene
Mobility inside
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
No
Yes
No
Yes
No
No
No
No
Yes
No
Yes
Yes
No
No
Yes if it is
where they
will receive
services
Yes
Yes
No
Yes
No
Assessor
determination
Self-report,
Assessor
Determination
Self-report,
Assessor
Determination
Assessor
determination
Self-report,
Assessor
determinatio
n,
Scale
Scale
Scale
Scale
Yes/No
No
Yes
No
No
No*
No*
No*
No*
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
No*
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes*
(includes
responses
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes (in home)
Yes
Yes
96
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
marked with *
above
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
No
Yes
Yes (outside
home)
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
No
Yes
Yes
No
N/A
N/A
N/A
N/A
Self-report
N/A
N/A
N/A
N/A
Open-ended
No
No
No
No
No
No
No
No
No
Yes
No
No
No
No
No
No
No
No
No
Yes
No
No
No
No
No
How section
is measured
Performancebased/Selfreport
Self-report,
Assessor
Determination
Self Report
Assessor
Determination
Performancebased, Selfreport,
Caregiver
determination
N/A
How
responses are
coded
Scale
Scale
Yes/No
Yes/No, Scale
N/A
Name of
Locality/Program
Mobility outside
Bed Mobility
(Client's ability to
move and change
positions while in
bed)
Housework
Laundry
Shopping and
errands
Meal preparation
& cleanup
Telephone use
Activity Pursuits
Patterns
How section
is measured
How
responses are
coded
Time awake
Involvement in
daily activities
Preferred activity
setting
General activity
preference
Prefers change in
daily routine
Cognitive
97
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Comatose
Memory recall
Decision making
skills
Indicators of
delirium
Orientation
Use of minimental state exam
(MMSE)
Judgment
Change in
cognitive pattern
Disease
Diagnoses
How section
is measured
How
responses are
coded
Asks for physician
name/ specialist
name
Heart/Circulationrelated
Neurologicalrelated
Musculo-Skeletalrelated
Endocrinerelated
Psychiatric/moodrelated
Pulmonaryrelated
Nephrologyrelated
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
No
Yes
No
Yes
No
Yes
No
Yes
No
No
No
Yes
Yes
Yes
No
No
No
No
Yes
No
Yes
Yes
No
No
No
Yes
No
No
No
No
Yes
Yes
Yes
No
No
No
No
Yes
No
No
N/A
Self-report,
Assessor
Determination
N/A
Self-Report,
Assessor
Determination
Self-report,
Caregiver
determination,
Records/
Supporting
Documentation
Yes/No
N/A
Fixed
Response
Categories
Open-ended
N/A
Yes
No
Yes
No
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
No
Yes
No
98
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Gastro-Intestinal
Related
Vitals
How section
is measured
How
responses are
coded
Temperature
Blood Sugar
Pulse
Blood Pressure
Respiration rate
Mood/Behavioral
Problems
How section
is measured
How
responses are
coded
Indicators of
depression
Indicators of
anxiety
Mood change
Behavioral
symptoms
Self injury
Significant life
changes (death,
divorce, etc.)
Person is
violent/suicidal
Use of Restraints
(geriatric chair,
vest/belt,
wrist/mitten)
Communication/H
earing
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
No
No
Yes
No
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
Yes
No
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
Self-report,
Caregiver
observation
N/A
Self-report,
Assessor
Determination
Self-report,
Caregiver
observation
N/A
Yes/No
N/A
Scale
Scale
N/A
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
No
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
No
No
No
No
No
No
No
No
Yes
No
No
Yes
No
No
No
No
No
No
99
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
How section
is measured
How
responses are
coded
Ability to hear
Making self
understood
(expression)
Ability to
understand others
(comprehension)
Communication
decline/changes
Use of
communication
devices (hearing
aid)
Modes of
expression
(speech, signs,
etc.)
Speech clarity
Vision
How section
is measured
How
responses are
coded
Vision (ability to
see)
Visual
limitations/difficultie
s
Vision change
Use of visual
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Self-report
N/A
Self-report,
Assesor
Determination
Self-report,
Caregiver
observation
Self-report,
Assessor
determinatio
n
Open-ended,
Yes/No
N/A
Scale
Scale
Yes/No
Yes
No
Yes
Yes
Yes
No
No
Yes
Yes
No
No
No
Yes
Yes
No
No
No
No
Yes
No
Yes
No
Yes
Yes
Yes
No
No
Yes
No
No
No
No
No
No
No
Self-report
N/A
Self-report,
Assessor
Determination
Self-report,
Caregiver
observation,
Performance
test
N/A
Yes/No
N/A
Scale
Scale
N/A
Yes
No
Yes
Yes
No
Yes
No
No
Yes
No
Yes
Yes
No
No
No
No
Yes
Yes
No
No
100
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Assessor
Determination
Self-report,
caregiver
determination,
Records/
Supporting
Documentation
Self-report,
Assessor
determinatio
n
Yes/No, Scale
Yes/No
No
No
appliances
Nutrition/Hydratio
n
How section
is measured
Self-report
How
responses are
coded
Yes/No, OpenEnded
N/A
Yes
No
Fixed
Response
Categories,
Yes/No
No
Yes
No
No
Yes
No
Yes
No
Yes
Yes
No
No
No
No
Yes
Yes
Yes
No
No
Yes
No
Yes
Yes
No
No
Yes
Yes
No
No
Yes
No
Yes
No
No
Yes
Yes
Self-report
Self-report
N/A
Self-report
N/A
Yes/No
Yes/No
N/A
Yes/No
N/A
No
No
No
No
No
No
No
No
No
No
Yes
Yes
No
No
No
Yes
No
No
No
No
Height
Weight (incl.
obesity)
Weight change
Consumption/
Intake
Swallowing,
Chewing Problem
Special Diet
Food allergies
Nutritional
treatments (IV, tube
feeding)
Dental Status
How section
is measured
How
responses are
coded
General Oral
status (Odor,
Salivation, Use of
Dentures, etc.)
Problem chewing
Problem brushing
teeth
Dental care/ Date
of last dentist visit
N/A
101
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Self-report,
Caregiver
determination,
Direct
examination,
Records/
Supporting
Documentation
Self-report,
Assessor
determinatio
n
Skin Conditions
How section
is measured
How
responses are
coded
Skin problems
(rash, burns, itches,
etc.)
Ulcers
Type of ulcer
Other skin
problems requiring
treatment
Receipt of
wound/ulcer care
Foot problems
Fingernails and
toenails (color,
texture)
Incontinence
How section
is measured
How
responses are
coded
Bladder
continence
Bladder devices
Bowel continence
Frequency/urgency
Elimination
Self-report,
Assessor
Determination
N/A
Self Report,
Assessor
Determination
Yes/No
N/A
Fixed
Response
Categories
Yes/No, Scale
Yes/No
Yes
No
Yes
Yes
No
Yes
Yes
No
No
Yes
No
Yes
Yes
No
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
Self-report
Self-report,
Assessor
Determination
Self-report,
Assessor
Determination
Self-report
Self-report,
Assessor
determinatio
n
Yes/No
Scale
Scale
Scale, Yes/No
Yes/No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
102
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
pattern
Change in
continence
Health Behaviors
How section
is measured
How
responses are
coded
Preventive health
behaviors
Falls
Drinking/ Alcohol
Smoking/
Tobacco
Pain
Exercise
Medications
How section
is measured
How
responses are
coded
Number of
medications
Types of
medications
Compliance
Selfadministration or
needs assistance
Medication allergy
Client needs to be
reminded
Special
Treatments/Progra
ms/Therapies
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
No
Yes
No
No
Self-report
N/A
N/A
Self-report
N/A
Yes/No
N/A
N/A
Scale
N/A
Yes
No
No
Yes
No
Yes
Yes
No
No
No
No
Yes
Yes
No
No
Yes
No
No
Yes
No
Yes
Yes
No
No
No
No
Yes
Yes
No
No
Self-report
Self-report,
Assessor
Determination
Self-report,
Assessor
determination
Self-report,
caregiver
determination,
Assesor
determination
Records/
Supporting
Documentati
on
Open-ended
Yes/No
Open-ended
Open-ended,
Yes/No, Scale
Open-ended
Yes
No
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
No
No
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
No
No
Yes
Yes
Yes
Yes
No
103
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
How section
is measured
Self-report
N/A
Self-report,
Assessor
Determination
Self-report
Self-report
Open-ended
N/A
Yes/No
Yes/No
Yes/No
Yes
No
Yes
Yes
Yes
No
No
Yes
Yes
No
Yes
No
Yes
Yes
Yes
Self-report
N/A
Self-report,
Assessor
Determination
Self-report
N/A
Open-ended
(Service type &
hours)
N/A
Yes/No
Yes/No
N/A
No
No
No
No
No
No
No
No
Yes
No
No
Yes
No
No
No
No
Yes
Yes
No
No
Yes
No
No
Yes
No
Yes
Yes
No
No
No
No
No
No
No
Yes
Yes
Yes
No
No
No
No
No
No
Yes
No
How
responses are
coded
Special Treatments
(e.g.,
Chemotherapy,
Dialysis, IV
medication,
Radiation)
Special Programs
(e.g.,
mood/behavior,
alcohol/drug
treatment)
Therapies (e.g.,
speech, PT, OT,
respiratory,
psychological)
Service Utilization
How section
is measured
How
responses are
coded
Impending
surgery
Home health
aides
Visiting nurses
Meals
Homemaking
services
PT/OT
Day care
Social worker
Equipment
management
104
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Other specific
programs (MSSP,
ADHC, CIL, NF
waiver, etc.)
Social
Functioning
How section
is measured
How
responses are
coded
Involvement in
activities
Change in social
activities
Isolation
Unsettled
relationships
(conflict, anger, no
contact w/ kin)
Significant
current/past
activities/interests
Informal Support /
Caregiving
How section
is measured
How
responses are
coded
Key informal
helpers
Caregiver status
Extent of informal
help (hrs)
Living
Arrangements
How section
is measured
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
No
Yes
No
No
Self-report
N/A
Self-report
Self-report,
Assessor
determination
Self-report
Open-ended
N/A
Scale
Scale
Open-ended
Yes
No
No
Yes
Yes
Yes
No
Yes
Yes
No
No
No
Yes
Yes
No
No
No
Yes
Yes
No
Yes
No
No
No
No
Self-report
N/A
N/A
Self-report
Self-report
Open-ended
N/A
N/A
Open-Ended;
Scale
Open-ended
Yes
No
No
Yes
Yes
Yes
No
No
Yes
Yes
No
No
No
Yes
No
Self-report,
Assessor
Determination
N/A
N/A
Assessor
observation
Self-report
105
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
How
responses are
coded
Living with
another person
Living situation
(apt., house, etc.)
Client or another
feels client would
be better in another
environment
Home
Environment
How section
is measured
How
responses are
coded
Access to home
Access to rooms
Lighting
Flooring/carpeting
Kitchen
Heating/cooling
Personal safety
Bathroom
Phone
Accessible/usable
Home
modifications
required
Pets
Smoke detector
Emergency plan
in place
Transportation
How section
is measured
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Open-ended
N/A
N/A
Scale
Open-ended
Yes
No
No
Yes
Yes
Yes
No
No
Yes
Yes
No
No
No
Yes
Yes
Assessor
observation
N/A
Self Report,
Assessor
Determination
Assessor
observation
N/A
Yes/No
N/A
Yes/No
Scale
N/A
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
Yes
No
No
Yes
No
Yes
No
Yes
Yes
No
Yes
Yes
No
No
No
Yes
Yes
Yes
No
No
Yes
No
No
Yes
No
Self-report,
Assessor
Determination
N/A
Self-report,
Assessor
Determination
Self-report
N/A
106
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes/No, OpenEnded
N/A
Scale
Scale
N/A
Yes
No
Yes
Yes
No
Yes
No
No
Yes
No
Yes
No
No
No
No
Self-report,
Assessor
Determination
N/A
Self-report,
Assessor
Determination
Self-report
N/A
Yes/No, OpenEnded
N/A
Scale
Scale
N/A
Yes
No
Yes
Yes
No
Yes
No
No
Yes
No
Yes
No
No
No
No
N/A
N/A
N/A
Self-report
N/A
N/A
N/A
N/A
Open-ended,
Scale
N/A
No
No
No
Yes
No
No
No
No
No
No
How section
is measured
Self-report,
Assessor
Determination
N/A
Self-report,
Assessor
determination
Self-report
N/A
How
responses are
coded
Yes/No, OpenEnded
N/A
Yes/No
Scale, Yes/No
N/A
Name of
Locality/Program
How
responses are
coded
Ability to Drive/ Use
Transportation
Services
Difficulties/Limitatio
ns
Transportation
Preferences
Money
Management/Fina
nces
How section
is measured
How
responses are
coded
Ability to Manage
Money/Finances
Difficulties/Limitatio
ns
Preferences
Current
Employment
How section
is measured
How
responses are
coded
Employment
Status/History
Job Type
Legal Issues
107
California Assessment Tools
Note: The MSSP and IHSS are primary California assessments related to aging and disability
programs and services. These two columns are color coded to reflect similarities and differences
in the content of the two assessment tools. Cells are shaded in green if there is agreement
between both assessments. Cells are shaded in red if there is disparity.
Name of
Locality/Program
Conservator
Legal guardian
Advanced
directives/ Durable
power of attorney
Potential for
Abuse/Neglect
Preference
How section
is measured
How
responses are
coded
Assesses
individual
preference for living
arrangements
Family/friends
support client's
preference
Family/friends
oppose client's
preference
Any difficulties in
meeting preference
(e.g. what would
make it difficult for
person to live in
different setting)
Multipurpose
Senior
Services
Program
In-home
Supportive
Services
Program
California
Assisted
Living Waiver
Program
San Mateo
Santa Rosa
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
No
Yes
No
Yes
Yes
No
Yes
No
No
Yes
No
N/A
N/A
N/A
N/A
Self-report
N/A
N/A
N/A
N/A
Open-ended
No
No
No
No
Yes
No
No
No
No
Yes
No
No
No
No
Yes
No
No
No
No
Yes
108
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
No
No (only if
consumer is
likely to
convert to
Medicaid
within 180
days)
No
No
Yes (plan to
as of July 1,
2006)
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
How is the tool is
used within the
system?
Determines
eligibility for nonMedicaid consumers
seeking nursing home
placement
Determines
Medicaid functional
eligibility (Nursing
Facility Level of Care
Determination)
Redetermines
functional eligibility
(also used for
reassessment?)
Assists in nursing
home diversion
Assesses
preference to remain
in or transition from
nursing home
No
Yes
Yes
No, Already
established
that
individuals
want to
transition from
NH. Tool only
assesses
need for
services.
Creates single entry
point into system
No
Yes
Yes
No
109
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Automatically
categorizes client into
levels of need
Determines
appropriate
placement/living
arrangement (e.g.,
home, assisted living,
nursing home)
Assessment
findings used to
develop care plan
Determines
eligibility/
authorization for
home & communitybased services
(HCBS)
What funding
sources for services
are included?
Automatically linked
to reimbursement
level
Determines
financial eligibility
Oregon
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
No
Yes
Yes
No
No - Although
used locally
to set rates
for residential
care based
on level of
function and
need
No
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Medicaid
Waiver,
Medicaid State
Plan, Older
Americans Act,
Medicare,
State General
Revenue
Medicaid
Waiver,
Medicaid
State Plan,
OAA
Medicaid
Waiver,
Medicaid
State Plan,
Other State
Funded
Services
N/A
Medicaid
Waiver,
Medicaid
State Plan
No
Yes
Yes
No
Yes
No
No
Yes
No
No
110
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Older Adults,
Adults with
Physical
Disabilities
Older Adults,
Adults with
Physical
Disabilities,
People w/
MR/DD,
children
needing
Medicaid
Personal Care
Older Adults,
Adults with
Physical
Disabilities
Persons of All
Ages and
Disabilities
Residing in a
Nursing Home
Older Adults,
Adults with
Physical and
Development
al Disabilities
Both
Electronic
Electronic
Paper
Electronic
No
Yes
Yes
No
Yes
Local waiver
agencies
State Agency
Field Offices,
Area
Agencies on
Aging (for inhome clients)
Seniors and
People with
Disabilities
Division, State
Department of
Human
Services
Centers for
Independent
Living
Aging and
Disability
Resource
Centers,
county-level
intake units
Registered
Nurse, Social
Worker
Social Worker
with training
and option for
referral to a
RN
Not specified,
option to refer
to an RN
No
qualification
requirement
Either SW or
RN with
Training and
Certification
In-home
In person
In person
In nursing
home
In person
1.5-2 hours
3 hours
1 - 1.5 hours
1-2 hours
2.5 hours
What populations
receive this
assessment?
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Format
Paper/Electronic (to
Administer
Assessment)
Use of standardized
algorithm to
synthesize responses
to determine level of
care and/or
reimbursement level
Administration of
the Assessment
What organization is
responsible for
conducting the
assessment?
What type of staff are
required to administer
the assessment?
(e.g., Social Worker,
Registered Nurse)
Where is the
assessment
conducted?
Time to complete
111
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
No
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
No
Yes
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
Yes
Has the tool been
tested for inter-rater
reliability by
researchers?
Do Assessors
Receive
Training/Certificatio
n on Using the
Tool?
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Systems Integration
Is the tool
electronically linked to
intake and referral
systems?
Is the tool used to
track quality? (e.g.
quality of care,
person receiving the
right services/needed
services)
Has shared
assessment potential
(consistency/usability
by other providers in
other
agencies/programs)
Enables
simplicity/brevity
(Leads the assessor
down paths that need
to be followed rather
than requiring
responses to every
item)
Reduces data entry
time
Reduces Duplication
(repeat assessments,
repeat service
112
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
N/A
Yes
No
Yes
No
N/A
Yes
No
No
No
No
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
No
Yes
No
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
No
Yes
Yes
No
No
No
No
Yes
No
No
No
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
authorizations
between programs)
Instruction Manual
Is there an
instruction manual?
Does the manual
include guidelines on
how to perform the
assessment?
Does the manual
have detailed
interview
questions/protocols/s
cript
Demographics
Gender
Race
Marital status
Education
Date of birth
Language spoken
Referral
Date case opened
Reason for referral
Where lived at time
of referral
Who lived with at
referral
Physical
Functioning- Ability
and Need for
Assistance
(ADL/IADL)
113
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Yes
Yes
Yes
Yes
Yes
Yes
Self-report,
Caregiver
observation,
Records/Supp
orting
Documentatio
n
Fixed
Response
Categories
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
No
No
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
How section is
measured
Self-report
How responses
are coded
Scale
Locomotion
Stair climbing
Wheeling
Stamina
Functional potential
Transfer
Assistive devices
(incl. walking and
transferring)
Eating
Bathing
Dressing
Toileting
Hygiene
Mobility inside
Mobility outside
Bed Mobility
(Client's ability to
move and change
positions while in
bed)
Housework
Laundry
Shopping and
errands
Meal preparation &
cleanup
Telephone use
Oregon
Self-report
Assessor
determination,
Self-report
Self-report,
Assessor
Determinatio
n
Open-ended
Open-ended,
Scale
Scale
Yes
No
No
No
No
Yes
Yes
Yes
Yes
No
No
Yes
Yes
No
Yes
No
No
Yes
114
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
N/A
Self-report
N/A
N/A
N/A
N/A
N/A
N/A
No
No
No
Activity Pursuits
Patterns
How section is
measured
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
No
Fixed
Response
Categories
Yes
No
Yes
No
No
No
No
Yes
No
No
No
No
Yes
No
No
No
No
Yes
No
No
No
How section is
measured
Self-report,
Assessor
Determination
Performancebased
Self-report,
Assessor
Determination
Self-report
Self-report
How responses
are coded
Yes/No
Scale, Openended
Yes/No
Yes/No,
Scale
Yes
Yes
No
No
No
Yes
How responses
are coded
Time awake
Involvement in daily
activities
Preferred activity
setting
General activity
preference
Prefers change in
daily routine
Cognitive
Comatose
Memory recall
Decision making
skills
Indicators of
delirium
Orientation
Use of mini-mental
state exam (MMSE)
Judgment
Change in cognitive
pattern
Disease Diagnoses
N/A
No
Yes
Fixed
Response
Categories
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
No
No
Yes
No
No
No
No
Yes
Yes
Yes
Yes
No
Yes
No
Yes
Yes
115
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Oregon
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Self-report,
Family
determination
, Records/
Supporting
Documentati
on
How section is
measured
Self-report
Self-report
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
How responses
are coded
Open-ended,
Yes/No
Fixed
Response
Categories
Open-ended
Yes/No,
Open-ended
Yes/No
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
N/A
Self-report,
measurement
by nurse
N/A
N/A
N/A
N/A
Open-ended
N/A
N/A
N/A
No
No
No
No
No
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
No
No
No
No
No
No
No
No
No
No
Asks for physician
name/ specialist
name
Heart/Circulationrelated
Neurologicalrelated
Musculo-Skeletalrelated
Endocrine- related
Psychiatric/moodrelated
Pulmonary- related
Nephrology-related
Gastro-Intestinal
Related
Vitals
How section is
measured
How responses
are coded
Temperature
Blood Sugar
Pulse
Blood Pressure
Respiration rate
116
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
How section is
measured
Self report,
Caregiver
observation
Self-report,
Caregiver
observation
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report
How responses
are coded
Scale
Fixed
Response
Categories
Scale, Openended
Yes/No
Scale
Yes
Yes
No
Yes
No
Yes
No
Yes
Yes
No
No
No
No
No
No
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
Yes
Yes
No
Yes
Yes
No
No
No
Yes
No
How section is
measured
Self-report,
Caregiver
observation
Self-report,
caregiver
observation
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report
How responses
are coded
Scale
Scale, Openended
Scale, Yes/No
Scale
Yes
Yes
No
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Mood/Behavioral
Problems
Indicators of
depression
Indicators of anxiety
Mood change
Behavioral
symptoms
Self injury
Significant life
changes (death,
divorce, etc.)
Person is
violent/suicidal
Use of Restraints
(geriatric chair,
vest/belt, wrist/mitten)
Communication/Hea
ring
Ability to hear
Yes
Fixed
Response
Categories
Yes
117
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
How section is
measured
Self-report,
Caregiver
observation,
Performance
test
Self-report,
caregiver
observation
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report
How responses
are coded
Scale
Scale, Fixed
Response
Categories
Scale, Openended
Scale, Yes/No
Yes/No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Making self
understood
(expression)
Ability to
understand others
(comprehension)
Communication
decline/changes
Use of
communication
devices (hearing aid)
Modes of
expression (speech,
signs, etc.)
Speech clarity
Vision
Vision (ability to
see)
Visual
limitations/difficulties
Vision change
Use of visual
appliances
Nutrition/Hydration
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
118
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Oregon
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report,
Assessor
Determinatio
n
Yes/No
Yes/No
Yes/No
No
No
No
How section is
measured
Self-report
How responses
are coded
Yes/No, Scale,
Open-ended
Height
Weight (incl.
obesity)
Weight change
Consumption/
Intake
Swallowing,
Chewing Problem
Special Diet
Food allergies
Nutritional
treatments (IV, tube
feeding)
Dental Status
No
Fixed
Response
Categories
Yes
Yes
Yes
No
No
No
Yes
Yes
Yes
No
No
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
No
No
No
No
No
Yes
Yes
No
No
Yes
How section is
measured
Self-report,
Direct
examination
Self-report,
Caregiver
observation
N/A
Self-report,
Family
determination,
Supporting
documentation
N/A
How responses
are coded
Yes/No, Openended
Fixed
Response
Categories
N/A
Open-ended
N/A
Yes
Yes
No
Yes
No
Yes
Yes
Yes
Yes
No
No
Yes
Yes
No
No
General Oral status
(Odor, Salivation, Use
of Dentures, etc.)
Problem chewing
Problem brushing
Self-report
119
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
teeth
Dental care/ Date of
last dentist visit
Skin Conditions
Yes
Yes
No
How section is
measured
Self-report,
Direct
examination,
Records/
Supporting
Documentation
Self-report,
Caregiver
observation,
Records/Supp
orting
Documentatio
n
How responses
are coded
Yes/No, Scale,
Open-ended
Skin problems
(rash, burns, itches,
etc.)
Ulcers
Type of ulcer
Other skin problems
requiring treatment
Receipt of
wound/ulcer care
Foot problems
Fingernails and
toenails (color,
texture)
Incontinence
How section is
measured
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Yes
No
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report,
Family
determination
, Direct
examination,
Records/
Supporting
Documentati
on
Fixed
Response
Categories
Scale, Openended
Yes/No,
Open-ended
Yes/No
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
No
No
Yes
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
No
No
Yes
Yes
Yes
No
No
No
Yes
No
No
No
Self-report
Self-report,
Caregiver
observation
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report
120
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
How responses
are coded
Scale
Oregon
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Yes
Yes
Yes
Yes
Yes
Scale, Fixed
Response
Categories
Yes
Yes
Yes
Yes
Yes
No
Yes
No
No
No
How section is
measured
Self-report
Self-report,
Caregiver
observation
Self-report,
Assessor
Determination
Self-report,
Family
determination,
Supporting
documentation
Self-report
How responses are
coded
Scale
Fixed
Response
Categories
Scale, Openended
Yes/No
Scale
Yes
Yes
No
No
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
Yes
No
No
Yes
Yes
No
No
How section is
measured
Self-report,
Supporting
Documentation
Self-report,
Supporting
documentatio
n
Self-report,
Supporting
documentation
Self-report,
Family
determination,
Supporting
documentation
Self-report
How responses
are coded
Yes/No, Openended
Fixed
Response
Categories
Yes/No,
Open-ended
Yes/No,
Open-ended
Scale
Bladder continence
Bladder devices
Bowel continence
Frequency/urgency
Elimination pattern
Change in
continence
Health Behaviors
Preventive health
behaviors
Falls
Drinking/ Alcohol
Smoking/ Tobacco
Pain
Exercise
Medications
Scale, Openended
Yes/No,
Open-ended
Scale
Yes
No
Yes
Yes
No
Yes
No
Yes
No
No
Yes
Yes
Yes
No
No
121
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
No
No
Yes
Yes
Yes
No
Yes
No
Yes
Yes
No
No
Yes
Yes
Yes
No
Yes
Self-report
Number of
medications
Types of
medications
Compliance
Self-administration
or needs assistance
Medication allergy
Client needs to be
reminded
Special
Treatments/Program
s/Therapies
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
How section is
measured
Self-report
Self-report
Self-report
Assessor
determination,
supporting
documentation
How responses
are coded
Yes/No
Fixed
Response
Categories
Open-ended
Yes/No
Yes/No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Self-report
Self-report
Self-report,
Assessor
Determination
Assessor
determination,
Self-report
Self-report
Special Treatments
(e.g., Chemotherapy,
Dialysis, IV
medication,
Radiation)
Special Programs
(e.g., mood/behavior,
alcohol/drug
treatment)
Therapies (e.g.,
speech, PT, OT,
respiratory,
psychological)
Service Utilization
How section is
measured
122
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Open-ended
(By # of days;
hours & mins)
Yes
Yes
Yes
Yes
Fixed
Response
Categories
No
Yes
Yes
Yes
Yes
How responses
are coded
Oregon
Client
Assessment
and Planning
System tool
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Scale, Openended
Yes/No
Scale
No
No
No
Yes
No
No
No
Yes
No
No
Yes
No
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
Yes
No
No
Yes
No
No
Yes
Yes
No
No
No
No
Yes
No
No
No
How section is
measured
Self-report,
Caregiver
determination
Self-report
N/A
N/A
How responses
are coded
Yes/No
Self-report,
Caregiver
determination
Fixed
Response
Categories
Open-ended
N/A
N/A
Impending surgery
Home health aides
Visiting nurses
Meals
Homemaking
services
PT/OT
Day care
Social worker
Equipment
management
Other specific
programs (MSSP,
ADHC, CIL, NF
waiver, etc.)
Social Functioning
Involvement in
activities
Change in social
activities
Isolation
Unsettled
relationships (conflict,
anger, no contact w/
kin)
Significant
current/past
activities/interests
Yes
Yes
No
No
No
Yes
Yes
No
No
No
Yes
Yes
No
No
No
Yes
Yes
No
No
No
No
Yes
Yes
No
No
123
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Self-report
Self-report
Self-report
N/A
Self-report
Names; Scale
Fixed
Response
Categories
Open-ended
N/A
Scale
Yes
Yes
Yes
No
No
Yes
Yes
No
No
Yes
Yes
Yes
No
No
Yes
N/A
Self-report
Self-report
N/A
Yes/No, Scale
Yes/No
Informal Support /
Caregiving
How section is
measured
How responses
are coded
Key informal
helpers
Caregiver status
Extent of informal
help (hrs)
Living
Arrangements
How section is
measured
Assessor
determination
How responses
are coded
Yes/No
Living with another
person
Living situation
(apt., house, etc).
Client or another
feels client would be
better in another
environment
Home Environment
Self-report,
Assessor
determination
Fixed
Response
Categories
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Yes
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
Yes
Yes
No
Yes
Yes
How section is
measured
Assessor
determination
Assessor
determination
Self-report,
Assessor
Determination
Self-report
N/A
How responses
are coded
Yes/No
Open-ended
Yes/No
N/A
Yes
Yes
Yes
Yes
Yes
No
No
No
No
Access to home
Access to rooms
Lighting
Yes
Yes
Yes
Fixed
Response
Categories
Yes
Yes
Yes
124
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
No
No
No
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
No
Yes
Yes
No
No
How section is
measured
Self-report
Self-report
Self-report,
Assessor
Determination
Self-report
Self-report
How responses
are coded
Scale
Fixed
response
categories
Scale, Openended
Yes/No,
Scale, Openended
Scale
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
No
How section is
measured
Self-report
Self-report
Self-report,
Assessor
Determination
Self-report
Self-report
How responses
are coded
Scale
Fixed
Response
Categories
Scale, Openended
Yes/No, openended
Scale
Ability to Manage
Money/Finances
Yes
Yes
Yes
Yes
Yes
Flooring/carpeting
Kitchen
Heating/cooling
Personal safety
Bathroom
Phone
Accessible/usable
Home modifications
required
Pets
Smoke detector
Emergency plan in
place
Transportation
Ability to Drive/ Use
Transportation
Services
Difficulties/Limitations
Transportation
Preferences
Money
Management/Financ
es
Oregon
Texas
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
No
No
No
No
No
125
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Yes
No
Yes
Yes
Yes
Yes
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
Yes
Yes
N/A
Self-report
N/A
N/A
Self-report
N/A
Fixed
Response
Categories
N/A
N/A
Scale
No
Yes
No
No
Yes
No
Yes
No
No
Yes
N/A
Self-report
Self-report
Self-report
Self-report
Open-ended
Yes/No,
Open-ended
Yes/No
Yes
Yes
No
Yes
No
Yes
Difficulties/Limitations
Preferences
Current
Employment
How section is
measured
How responses
are coded
Employment
Status/History
Job Type
Legal Issues
How section is
measured
How responses
are coded
Conservator
Legal guardian
Advanced
directives/ Durable
power of attorney
Potential for
Abuse/Neglect
Preference
How section is
measured
How responses
are coded
Assesses individual
preference for living
arrangements
Family/friends
support client's
preference
Family/friends
oppose client's
preference
Oregon
Texas
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
Yes
No
No
No
Fixed
Response
Category
No
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
No
No
N/A
Self-report
N/A
Self-report
Self-report
N/A
Open-ended
N/A
Scale, Openended
Scale
No
Yes
No
Yes
Yes
No
No
No
No
Yes
No
No
No
No
Yes
N/A
126
Assessment Tools from Other States
Name of
Locality/Program
Michigan
Washington
Name of
Assessment Tool
MI-Choice
Care
Management
Assessment
(Part of MI
Choice Waiver
Program)
Comprehensi
ve
Assessment
Reporting
Evaluation
(CARE)
Client
Assessment
and Planning
System tool
Any difficulties in
meeting preference
(e.g. what would
make it difficult for
person to live in
different setting)
No
No
No
Oregon
Texas
Inventory Of
Community
Service And
Support
Needs For
Transition
From Nursing
Facilities To
Community
No
Wisconsin
Wisconsin
Long term
Care
Functional
Screen
No
127