Issues in Residential and Community Based Care 1
Legal Nurse Consulting Principles, 3rd Edition
Vol. 2 Chapter 22
Issues in Residential and Community-Based Care
Laura E. Fox
Fox Associates
7950 Kelly Ann Ct
Fairfax Station, VA 22039
(703) 250-9369 (work)
Lfox98@cox.net
Dawn D. Nash
American Baptist Homes of the Midwest
8780 75th St S
Cottage Grove, MN 55016
(952) 807-8006 (work)
(952) 941-8567 (fax)
dnash@abhomes.org
Dawn D. Nash, RN, obtained her Registered Nursing Diploma from Arthur B. Ancker
School of Nursing, in St. Paul, Minnesota. She is currently employed as the Director of
Clinical Services for American Baptist Homes of the Midwest in Eden Prairie, MN. She
has over 33 years of long term care nurse management and consulting experience.
Need Fox’s bio in a format I can read.
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Chapter 22
Residential Care for Individuals with Developmental Disabilities
Contents
Objectives
Introduction
Definitions
Overview of Residential Care
Current Issues
Legal/Ethical issues
LNC Role
Case examples
Chapter Summary
References
Resources
Objectives:
To define the trends for long term care for individuals with DD
To describe two roles of the LNC in assisting attorneys with long term care cases for
individuals with DD
To identify areas in long term care for individuals with DD that need monitoring by the
LNC
Introduction
Residential care for people with developmental disabilities (DD) requires special
expertise and knowledge for the legal nurse consultant (LNC). The LNC needs to know
about the unique needs of people with DD, including health care issues. The LNC needs
knowledge on the residential care system for people with DD, the various options
available, the regulatory agencies, and standards of practice. The residential care system
for people with DD is a field unto itself that varies from State to State. Because people
with DD are a diverse group, the residential setting needs to be able to provide for
individualized needs that are dynamic and changing over the person’s life. The LNC in
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this field needs experience with the medical and legal aspects of long term care specific
for individuals with DD.
The LNC is often contacted by an attorney when an individual or groups of
individuals with DD living in residential care sustain an injury or insult. These injuries
may have occurred because the care was believed to be sub-standard. The attorneys often
cite nursing home and/or hospital standards of care and are unaware that most people
with DD reside in the community and in small group homes that are regulated at the
local, state and/or federal level. These standards are not nursing home or hospital
standards and the same standards of care cannot be applied. The LNC will need to be
aware of the trends in long-term care for individuals with DD, the applicable standards of
care, the different types of facilities, and issues that frequently arise.
Definitions
DD is a broad term that refers to a variety of conditions and describes an
individual’s functional limitations in society and daily life. According to the
Developmental Disabilities Assistance Act and Bill of Rights Act (2000) a developmental
disability is a chronic, severe disability which:
-Is attributable to a mental or physical impairment of a combination of mental and
physical impairment
-Occurs before the individuals reaches age 22
-Is likely to continue indefinitely
-Results in substantial functional limitations in three or more of the following areas of
major life activity: (i) self care, (ii) receptive and expressive language, (iii) learning, (iv)
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mobility, (v) self-direction, (vi) capacity for independent living, and (viii) economic selfsufficiency; and
-Reflects the individual’s need for a combination and sequence of special,
interdisciplinary or generic care, individualized supports, or other forms of assistance that
are of lifelong or extended duration and are individually planned and coordinated
The federal definition of DD is based on an individual’s functional abilities with
self-help skills and/or activities of daily living. The federal definition of DD
encompasses many different disabilities, which may include cognitive disabilities,
physical disabilities or both including but not limited to autism, Down syndrome, cerebral
palsy, spina bifida, mental retardation and epilepsy. According to the Administration on
Developmental Disabilities, there are approximately 4.5 million individuals with DD in
the United States (Administration on Developmental Disabilities, 2008).
There is not one standard definition of DD. The federal definition of DD is not
uniformly accepted and the States use different definitions for DD based on the federal
law. Many States use a diagnosis of mental retardation (MR) as the primary eligibility
criteria. The Diagnostic and Statistical Manual of Mental Disorders 4th edition defines
MR as sub average general intellectual functioning and significant limitations in adaptive
functioning in two skills areas. Sub average intellectual functioning is defined as an IQ
of about 70 or below, approximately 2 standard deviations below the mean, starting
before the age of 18 (American Psychiatric Association, 2000). By using this definition,
only individuals with mental retardation are eligible for services, and individuals with
cerebral palsy and/or seizure disorders without the diagnosis of mental retardation may
not be eligible for State DD services and supports. In California the Lanterman Act
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defines a developmental disability as starting before the age of 18 (California Lanterman
Developmental Disabilities Services Act, 1976). Using this definition, an individual who
receives a diagnosis of traumatic brain injury from a motor vehicle accident at age 20
would not be eligible for services and supports through the California DD system.
Because people with DD are a diverse group and the definition incorporates many
different conditions and disabilities, it is important that the LNC is aware of the
individual’s diagnoses and the definition for services where the individual resides. DD is
a more specific definition than chronic conditions or the term disabilities (ANA, 2004).
People with DD often need a combination of developmentally appropriate,
interdisciplinary and individualized supports and services throughout their life. This
information will be further needed when the LNC evaluates the level of care and
individualized services in the community.
Overview of Residential Care
For many years, people with DD were isolated from the community and either
lived at home or were sent away to large State Institutions often called State
Developmental Centers. People with DD were seldom mainstreamed in the community.
By the mid-20th century, the focus was on normalization and providing care in the least
restrictive environment. Normalization is used “to provide a supportive environment for
persons with intellectual and DD to make decisions regarding activities of daily living
and to live as close as possible to the norms and patterns in the mainstream of the society
in which they reside” (ANA, 2004, p. 53). The concept of normalization and living in the
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least restrictive environment started to replace the idea of segregated institutional settings
for people with DD located in the outskirts of the community.
A major de-institualization effort took place in the 1980s. This effort was fueled
with media investigations exposing poor conditions in institutional settings and resulted
in federal class action litigation demanding the people with DD be integrated into
community settings. The transition from state institutions to the community varied from
state to state (Nehring, 2003: Smith, 2006). Class action litigation continues to be a
major force influencing community care options.
Olmstead v. L.C. (1999) is considered a landmark Supreme Court ruling in
support of community care for people with DD. In this case, two women living in a State
institution in Georgia, determined to be appropriate for community care placement, were
denied residential placement. The State argued it was unable to afford to provide these
services. The decision by the Supreme Court in Olmstead v. L.C. under Title II of the
Americans with Disability Act (ADA) of 1990 stated that unnecessary institutional
segregation constitutes discrimination that cannot be justified by a lack of funding. States
are required to place individuals with DD in community settings when: (1) the state’s
treatment professionals have determined that community placement is appropriate; (2)
transfer from institutional care to the least restrictive environment is not opposed by the
individual; and (3) the placement can be reasonably accommodated, taking into account
the resources available to the state and the needs of others with mental disabilities.
Olmstead requires the states to address community care in light of ADA integration. The
aftermath of the Olmstead decision has resulted in many class action lawsuits for people
with DD to receive long-term care services in the community. Litigation also addresses
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the issue of waiting lists that result in a denial of services. In 2006, 42 states reported that
64,990 persons with DD were on waiting lists for residential services (Braddock, Hemp
& Rizzolo, 2008). The States cite that these services are not being provided because
they lack adequate funds. Other lawsuits are being filed for individuals with DD that
challenge the Medicaid services that they did or did not receive in the community.
Residential and Community Care Settings
There are many available residential and long term care options for people with
DD. These settings include State Developmental Centers, often called State Institutions,
Intermediate Care Facilities for the Mentally Retarded (ICF/MR), and Home and
Community Based Service Waiver Homes (HCBS). These small ICF/MRs and HCBS
Waivers homes are often called group homes. Group homes are funded by a variety of
sources, however the vast majority are funded by Medicaid, using a combination of
federal and State funds. There has been a continual increase in residential out-of-home
placements with an increase of 4.8% in 2004-2005 with 536,476 people with DD in
residential care (Braddock, et. al., 2008).
The large State Developmental Centers were the backbone of the DD model.
They offer a centralized model of services provided by the State. However, as the trend
in long-term care for individuals with DD shifted to community and small group
homelike settings, the State Developmental Centers have been closed or downsized. The
individuals remaining have profound DD that require extensive medical care, including
24-hour nursing care, or significant behavioral concerns (Palley & Van Hollen, 2000).
Males made up the majority of the population (Pouty, Smith & Larkin, 2007). In 2006,
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42 states continue to have state-operated institutions, while 8 states and the District of
Columbia no longer have these state-operative institutional facilities (Braddock et. al.,
2008). The majority of people with DD now reside in the small group home settings such
as the ICF/MRs and the HCBS Waiver program.
The ICF/MR statute was enacted in 1971 from the Social Security Act (PL 92223). It is based on a medical model and requires “active treatment.” The ICF/MRs must
comply with federal regulations found at 42 CFR Part 483, Subpart I, Sections 483, 400493.490 and specified in eight areas that include management, client protections, facility
staffing, active treatment services, client behavior and facility practices, health care
services, physical environment, and dietetic services (wwwcms.hhs.gov). There are
currently 7,400 ICF/MRs in the United States serving 129,000 people (Department of
Health & Human Services, 2008). Many of these people have MR, are also non
ambulatory, have seizure disorders, behavior problems, mental illness, are visually and/or
hearing impaired, or have a combination of these conditions. ICF/MRs range in size and
may be large facilities or small six bed homes. With the trend for smaller homelike
settings, there has been a decline in the larger settings, and a growth in six people or less
for ICF/MRs (Braddock et al., 2008). ICF/MRs may be operated by the State, or by
private agencies, and may be for profit or non-profit. ICF/MRs are always residential and
are regulated by the federal ICF/MR Standards through the Center for Medicare and
Medicaid Services.
The HCBS Waiver program was designed for people with DD to remain in the
community with supports without having to meet all the federal regulations of the
ICF/MRs. Congress first authorized the HCBS Waiver program in 1981 as an
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alternative to the ICF/MR program. Section 1915 (c) of the Social Security Act enables
State to request a waiver of applicable federal Medicaid requirements to provide
community support services for those individuals who would have required institutional
care. The residential model is generally limited to four or fewer individuals in the
residential home. The program needs to demonstrate cost neutrality, as the cost for
Waiver services must not exceed the cost of the institution. The HCBS Waiver is now the
principal Medicaid program for people with DD. In fiscal year 2007, the HCBS Waiver
exceeded $20 billion and paid for 5.2 times as many people with DD as the ICF/MR
Waiver (Lakin, et. al., 2008).
The State agencies receive the HCBS Waiver funding for services and private
agencies; both for-profit and non-profit agencies provide the direct services. To receive
the HCBS Waiver funds, a state submits an application to Health and Human Services
(HHS), identifies the target population, identifies the number of people they will serve
and list the services that will be provided. Federal regulations specify that the State has
(1) adequate standards for all providers of services and (2) assurance that any state
licensure of certification requirements for providers of waiver services are met. States
must annually report on the implementation, monitoring, enforcement of their health and
welfare standards and the HCBS Waiver’s impact on the health and welfare of the
individuals.
The HCBS Waiver offers a cornucopia of community based services and supports
for people with DD that may include case management, habilitation training, various
professional therapies, behavior management, etc. These services and supports are
determined by the needs of the individual, and they differ between States, and only some
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of the options are funded by each state (Braddock et al., 2008). Regulations are less
prescriptive, allowing for “person-centered and person-driven” planning, focusing more
on outcomes, rather than meeting a prescribed treatment approach. Oversight of the
HCBS Waiver program is often decentralized among a variety of agencies and rarely is
one agency accountable for the overall quality of care provided. Some waiver service
providers are regulated by state licensing agencies, others by private accreditation
organizations and others operate under a contract or other agreement with a state agency
with the vast majority provided by non-state agencies (Pouty, et al., 2007).
Current Issues
The smaller residential settings (ICF/MR and HCBS) are based on the
normalization model. Adults with DD have rights and responsibilities, as the general
population, however they may need additional supports to live safely and successfully in
the community. They work either independently or in sheltered settings or day programs
and are not at home during the day. They may have different diagnoses and different
strengths and needs for services and supports. The residents have opportunities to
interact with the community and work on independent skills. The residents have annual
goals often outlined in an Individualized Habilitation Plan or Individualized Service Plan.
They have regular visits to physicians and/or specialist. Residents have rights, which
often have to be negotiated within the guidelines of the residential home. People with
disabilities need to receive services in settings of their choices. Bannerman, Sherldon,
Sherman & Harchik (1990) described personal choices as the rights of people with DD to
eat too many doughnuts.
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Adults with DD have the same medical issues as the majority of the population.
They may have additional concerns and increased health care needs based on their
functioning abilities and/or based on their diagnosis. People with DD, as the general
population, often struggle with chronic conditions such as obesity, diabetes, high blood
pressure, etc., and these issues may be further exacerbated by their functional limitations,
for example, if the person is non ambulatory. They also may have extra medical issues,
such as individuals with Downs Syndrome, who show physical signs of aging often 20
years earlier, including Alzheimer’s (Service & Hahn, 2003). People with DD have the
same age-related impairments and illness as people without disabilities. As our society
ages, this population will also age, and will need health care services, including
preventative health assessment.
The aging of our society directly influences the demand for residential services.
As the population ages, there will be an increased need for out-of-home long-term
residential care services for all persons, including individuals with DD. Currently the
majority of individuals with DD are living at home, with their aging parents (Palley &
Van Hollen, 2000: Parish & Lutwick, 2005). It is anticipated that the future demand for
services will far exceed the supply. The DD system competes with the general
population for services and supports, including the need for care providers and
community homes. States have been experiencing an increase in the number of
individuals with DD seeking community-based services, and have been unable to keep up
with the growing demand (Smith, 2006). It is anticipated this trend will continue.
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Regulations on the Federal and State Level
Attorneys who contact a LNC generally want information regarding the standard
of care. Frequently the situation that occurs is that a person with DD has a change in their
medical condition, which goes unrecognized or is ignored by the residential facility, and
by the time the facility responds, the person has sustained an injury or at worst, has died.
However, a simple scenario of reporting a change in the medical condition is
complicated. For example, if the person with DD has communication difficulties, or is
non-verbal, they will have limited ability to communicate a change or discuss symptoms
with their care providers. Their care providers will need to look at overt signs, such as
weight gain/loss, intake and output including changes with bowel or bladder, fever, etc.
They will also need to look at more subtle signs such as grimacing with pain, lethargy, or
change in behavior. The care providers will need to know their client and need skills in
understanding and interpreting the signs and signals that the individual with DD uses to
communicate their wants and needs.
As the majority of people with DD live in the group home setting (ICF/MRs and
HCBS Waivers), and most are run by private companies that contract with the State, the
LNC will need to determine the applicable State regulatory agency. This will assist with
identifying the standards expected from the State agency. The LNC may also need to
examine the statutes and regulations including those from Medicaid and/or Medicare.
Portions of the basic information on laws, regulations and compliance information are
found on the website for the Centers for Medicare and Medicaid Services
(www.cms.hhs.gov).
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Each State determines the settings and regulations for supporting people with DD.
Because services are often de-centralized, it is important for the LNC to be aware that
different agencies are involved in the service delivery system. Most residential homes
are privately run receiving service funding from the State. Some State agencies include
DD in their name, while others may be linked to Mental Health with one State agency
that provides the umbrella for services for people with DD, mental health and substance
abuse. The National Association of State Directors of Developmental Disabilities
Services (NASDDS) provides a list of the State agencies involved in providing services
(www.nasdds.org). Another source for obtaining information is the National
Dissemination Center for Children with Disabilities (NICHY) that provides information
on various state resources, including agencies (www.nichcy.org).
Although the system is implemented differently in each state, every state has a
designated department to address the needs of people with DD. President John F,
Kennedy in the 1960s established the Office of Mental Retardation which later became
the Administration on Developmental Disabilities (ADD). The ADD, a Federal agency,
is located within the United States Department of Health and Human Services with four
grant programs responsible to work with their respective state governments and
communities. Each State has a State Council on DD and an associated agency
responsible for DD services and supports. Each state has a Protection and Advocacy (P &
A) system, with attorneys available to protect the legal rights of individuals with DD. P
& A has been involved with class action litigation especially with de-institutionalization
and ensuring community based living options and supports are available and accessible.
Each state has a University Center for Excellence in DD (formerly called University
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Affiliated Programs) that provide centers for learning, research, and clinical experience
for students in the field of DD. Each state has a Project of National Significance, a
discretionary program providing funding for national initiatives and technical assistance.
Facility Information
On the facility level, it will be important to obtain the policies and procedures of
the facilities to determine compliance. Facility policies and procedures provide
information not only on what the expectations are for the facility but also for the staff.
To work in a facility, the staff generally receives some type of training on the DD
population, first aid, medication administration, etc. It is important to remember that the
direct care staff working in the residential home is generally not medically trained. They
are instructed in basic signs and symptoms and taught to report medical changes to their
supervisors and/or designated staff.
People with DD may have medications for chronic conditions such as seizures,
psychotropic medications for behavioral issues, and medications for gastro esophageal
reflux. They are often on multiple medications with many potential side effects and
adverse reactions. The staff needs knowledge regarding medication and side effects, how
to report changes in condition and who to report to when changes occur. In addition,
psychotropic medications cannot be used as a chemical restraint, and each resident must
have a plan of care to avoid abuse of these medications and a written plan of treatment.
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Medications may be administered by nursing staff or they may be delegated to the
direct care staff. Medication administration by non nursing staff varies greatly from state
to state. For example, medication aides in Virginia are required to receive a minimum of
32 hours of classroom instruction and pass a written and practical (skill demonstration)
exam. The medication aide will then be able to assist with the self-administration of
medication to individuals and is not expected to perform any tasks or procedures
involving a medication that requires professional training and education such as that in
the field of nursing. The training program is taught by a designated licensed health care
provider who received training in the medication aide management course approved by
the Board of Nursing (Kirkpatrick, 2000). Interestingly, this medication training program
is the same program for staff working in assisted living.
In the residential setting each resident has a formal chart, but they are quite
different from a hospital chart. The residents live there and their care needs are regular
and routine. The chart may contain admission information and initial assessment,
history, medications, physician’s orders, resident’s rights, individualized habilitation plan
or Individualized Service Plan with annual goals, etc. If the resident has been in the
facility for many years, the charts are routinely thinned and only current information may
be in the chart. Daily notes are often communicated informally in logbooks written for
staff coordination. An incident report is written if an unusual incident has occurred, and
an action plan should be noted.
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Nursing Standards
The LNC will also need to determine the involvement of nursing. Nursing care in
all settings and programs are dictated by the need and health status of the individual with
DD. In some settings the resident may receive direct and daily nursing care by a licensed
registered nurse or a licensed professional nurse, and in other settings they may receive
care on a much more episodic nature. Most HCBS Waiver homes are generally
structured with minimal nursing oversight.
Each State’s Nurse Practice Act determines the scope and practice of nursing care
including what functions are performed by nursing and which tasks can be delegated. In
addition, there is the ANA Scope and Standards of Practice for Intellectual and DD
Nursing (2004). DD nursing encompasses a lifetime of care for people at different ages
with different care needs and in various settings. Developmental Disabilities Nursing
Practice (Aggen, et. al., 1995;2008) has also established standards of practice. These
standards provide direction for the professional nurse in every setting in which people
with DD receive nursing services and supports and a general framework for evaluation.
Nurses in the field of DD have had the opportunity to become certified since 1994.
Certification requires nursing experience (4000 hours working in the field of DD in the
last 5 years), ongoing continuing education specific to DD and a peer-reviewed
examination.
Role of the LNC
The LNC may assist the attorney in various ways. As this is a very specialized
field, the LNC will need experience in the field of DD and long term care. The LNC may
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be involved in the role of an educator, and build the attorney’s knowledge base about
DD, the diverse population, various diagnoses, and specifically an individual’s care
needs. In this role, the LNC will discuss the types of the residential care setting for
people with DD and how long term care differs from the acute care hospital setting and
the nursing home setting. The LNC may be involved as a consultant to examine the case,
evaluate the standard of care, obtain information, such as policies and procedures, and
assist with determining if the standard of care has been met. The LNC may need to
develop a time line to determine the sequence of events including staff involvement to
determine negligence or errors of omission. The LNC may be involved as an expert
witness with expertise in the field of DD. In this testifying role, the LNC will educate the
judge and jury. The LNC may also be involved in class action lawsuits using the
expertise and knowledge in the field of DD.
Case Examples
Medication Administration
When the majority of people with DD lived in the large state institutions, service
delivery was based on the medical model, and nursing staff were available and
responsible for daily assessment and medication administration. People with DD now
live in a variety of settings, and there may or may not be a nurse available to administer
medications. In addition, many people with DD have self-care deficits, that may include
communication difficulties, oral motor difficulties, hand-eye coordination problems,
cognitive difficulties, and deficits in fine and gross motor skills (Barks, 1994). These selfcare deficits contribute to their inability to self-administer medications that is
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compounded because of the need for multiple medications with many adverse effects.
The area of medication administration is ripe for errors in all settings, including settings
for people with DD.
Medications are often administered in bubble packs, where daily medication is
inserted in a blister from the pharmacy. Medication needs to be checked using the 6
rights of medication administration (the 6th right being right documentation), and
medication needs to be checked with the physician order. The person administering
medication needs familiarity with the medication, purpose, dose, side effects, etc.
This clinical nurse specialist working in a residential ICF/MR setting once
received a call from staff working in a residential facility because the staff had
administered medication at the wrong time, and the medication was Theragran M (a
multi-vitamin). Obviously this was not an area of concern, except for education, as the
staff needed education on what medication was being administered, side effects, etc.
Another time, this clinical nurse specialist was called when the morning staff
administered the same medication that the night staff had (duplicate dose). This
medication error occurred because the night staff had not documented the medication
doses, and the morning staff administered medication without noticing it was the wrong
date and time. The physician was contacted and the individuals were monitored during
the day without any further incidents. The results could have resulted in hospitalization,
medical appointments and worse as many individuals were on seizure medication with
tight therapeutic dose levels.
Wrongful Death
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When an individual with DD condition changes resulting in an early death, the
LNC may be contacted to determine if there was negligence at the facility. The LNC will
need to determine the standards of care and whether or not standards of care were
followed. This situation may be further complicated when an individual with DD has a
medical condition and that could contribute to the early demise. The LNC will need to
examine standards of care, federal, state and local standards, facility records, level of care
needs, in addition to knowledge of the individual with DD.
A choking incident is often a common liability issue. Individuals with DD often
have self-care deficits including oral motor difficulties. Mobility may also play a factor in
feeding and medication administration. For example, an individual with spastic
quadriplegia cerebral palsy may have difficulty sitting in an upright position and need
proper positioning in order to avoid aspiration. If an individual with DD has an injury
and/or death related to a choking incident, the LNC will need to evaluate the case for
merit. The LNC that reviews the records needs extensive knowledge about DD,
understanding of the medical needs, the aging process including physiological and
psychological changes, and the special concerns for individuals with DD. The LNC will
need knowledge on the difference between normal processes and bodily insult. While the
plaintiff attorney will cite neglect and wrongful death due to breach in the standard of
care, the defense attorney will often state that death does not necessary mean impropriety
and can occur from natural causes, especially as people with DD are classified as a
vulnerable population with a reduced life expectancy from the typical population.
The following example provided is a clear violation of the standard of care
resulting in an untimely and early death (wrongful death) of a young individual. The
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plaintiff, who had cerebral palsy and intellectual disabilities, lived in an ICF/MR in Texas
from June 1, 1992 to her death on April 16th, 1998.. When the plaintiff fell in a hallway
and defecated on the floor on 4/12/1998, the aide poured a mixture of undiluted bleach
and another cleaning compound on the floor, left the plaintiff on the floor for at least an
hour, and did not wash the bleach off the plaintiff. The plaintiff was not seen by the
facility’s doctor until 17 hours after the incident. She later was diagnosed with extensive
chemical burns covering 40% of her body and died from these complications on
4/15/1998. A wrongful death and survival suit for compensatory and punitive damages
was filed by her family, later amending it to include ongoing neglect and abuse (Wright
v. Res-care, 2002).
Abuse and Neglect
Individuals with DD are considered a vulnerable population and are at risk for
abuse and neglect at all ages. Women with DD are considered at high risk for sexual
abuse as they often may be unwilling victims, or at the other extreme, be overly friendly
without knowing the effect on others. Training programs and sexuality awareness is
taught, but this population is vulnerable to abuse and neglect.
The following is a recent example of an assault case. In determining these cases,
the issue is often whether the residential home had knowledge of a staff’s violent history,
or should have known, and if the residential home exercised ordinary care to protect its
residents from the assault.
The plaintiff, described in court documents as a severely handicapped person,
nonverbal, wheelchair dependent, and legally blind, lived in a residential facility for the
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DD in Rhode Island. She suffered a severe bruise that extended from the vagina to the
rectum. She was examined at the hospital, and police were notified, however, there were
no criminal charges filed. A civil action was filed alleging intentional and negligent
conduct on the staff. The judge found that plaintiffs failed to produce any evidence of
assault and there was no negligence as the plaintiffs failed to offer any evidence or expert
testimony that the injury was caused by a breach of the standard of care. The plaintiffs
appealed and the ruling was affirmed in the Rhode Island Supreme Court (Broadley v.
Rhode Island, 2008 )..
In another example, the direct care staff was involved in a criminal charge of
elderly and dependent adult abuse. This plaintiff, a 51-year-old individual with DD with
limited verbal skills and wheelchair dependent, resided in a residential facility for the DD
in California. On May 4, 2004, she was seated in the shower and the water heater broke,
causing a scalding and third degree burns over 60 % of her body. The aide did not report
this to her supervisor for 2 hours. The plaintiff was airlifted to Santa Clara Hospital and
is currently nonverbal and gastrostomy tube dependent reporting a $3,000 per day care in
a subacute setting. The aide was arrested for elderly and dependent adult abuse, later
pled guilty, served jail time and probation and was banned from working in other
healthcare facilities. The case was eventually settled. (Rodriguez v. Res-Care , 2004),
Other Case Examples
In this case, the staff clearly did not follow the standard of care and were
negligent, and their negligence caused injuries to the resident.
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The plaintiff, a 33-year-old-woman with DD, resided in an assistive living
facility, called a personal care home, in Pennsylvania. Her mother was contacted and
was notified that her daughter was either sick or pretending to be sick. The mother found
her daughter screaming and crying with a soiled diaper and diarrhea. The mother cleaned
her daughter without staff assistance, and informed the staff her daughter was sick. No
one at the Ivy Ridge facility responded. The mother took her daughter to the hospital
where she was admitted for viral gastroenteritis, fecal impaction and dehydration. She
was discharged three days later. The court, upheld a jury verdict, and found the Ivy
Ridge breached its duty of care by neglecting the plaintiff ( Ruta v. Ivy Ridge Personal
Care Center, 1995),
In a recent case, an individual with DD was scalded during bathing. Interestingly,
it was alleged by the defense that the resident had turned on the water of the bath causing
his own injury. The 42-year-old plaintiff was described as having severe mental
disabilities, was non-ambulatory, non-verbal with cerebral palsy, and resided in a
residential facility for the DD in Indiana. He sustained first and second-degree burns to
his lower body when placed in a bath of scalding hot water in 2000.. The estate of the
plaintiff was awarded $1.5 million in damages on January 2008 to provide for his
ongoing care needs. This was considered one of the largest jury verdicts in Madison
County’s history (McGrath, 2008)),
Chapter Summary
People with DD are a diverse group of people with different ages and abilities and
they may reside in various residential settings in the community. The LNC in this field
22
Issues in Residential and Community Based Care 23
needs a solid clinical foundation in DD and health care issues in addition to an
understanding of the residential setting options, and standards and regulations on the
federal, state and local level. This will continue to be a growing field as the population
ages, and will provide both opportunities and challenges for the LNC involved in
residential care.
References
Administration on Developmental Disabilities (2008). ADD Fact Sheet. Retrieved on
7/27/08, from http;//www.acf.hhs.gov/programs/add/Factsheet.html
Aggen, R.L., Broda, T., Brown, K, Kurlick, M, Lester, N. & Tupper, L. (2008).
Standards of Developmental Disabilities Nurses Practice. Eugene, OR:
Developmental Disabilities Nurses Association.
Aggen, R.L., DeGennaro, M.D., Fox, L., Hahn, J.E., Logan, B.A. & VonFumetti, L.
(1995). Standards of Developmental Disabilities Nurses Practice. Eugene, OR:
Developmental Disabilities Nurses Association.
American Nurses Association (2004). Intellectual and Developmental Disabilities
Nursing: Scope and Standards of Practice. Silver Spring, MD; nursebooks.org
American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental
Disorders, Fourth Edition. Washington, DC, American Psychiatric Association.
Bannerman, D. J., Sheldon, J. B., Sherman, J. A. & Harchik. A. E. (1990). Balancing the
right to habilitation with the right to personal liberties: The rights of people with
developmental disabilities to eat too many doughnuts and take a nap. Journal of
Applied Behavior Analysis 23, 79-80.
Barks, L. (1994). Approaches to medication administration. In Roth & Morse (Ed.) A
Life-Span Approach to Nursing Care. (pp. 193-218). Baltimore. Paul H. Brookes.
Braddock, D., Hemp, R., & Rizzolo, M.C. (2008). The State of the States in
Developmental Disabilities 2008. Washington D.C.
Broadley v. State of Rhode Island et, al . 2007-80-Appeal. (PC 97-387). 2008.
23
Issues in Residential and Community Based Care 24
California Lanterman Developmental Disabilities Services Act, (1976). Welfare and
Institutions Code, Section 4512 (a).
Department of Health & Human Services (2008). Intermediate care facilities for the
mentally retarded (ICFs/MR). Retrieved on 7/28/08, from
http;//www.cms/hhs.gov/CertificationandComplianc/09_ICFMRs.asp
Developmental Disabilities Assistance and Bill of Right Act Amendments (2000).
P.L. 106-402 (42 U.S.C. 15002 Sec.102).
Kirkpatrick, M. A. (2000). A resource guide for medication management for persons
authorized under the drug control act. Virginia Department of Social Services.
Commonwealth of Virginia.
Lakin, K.,C, Prouty, R., Alba, K, & Scott, N.. (2008). Twenty-five years of Medicaid
home and community based services (HCBS): Significant milestones reached in
2007. Intellectual and Developmental Disabilities (46) 4. 325-328.
McGrath, S. (2008, January 28). Update: Jury award $1.5 million to man who was
scalded. The Herald Bulletin. Retrieved on 3/10/09 from
http://www.hearaldbulletin.com/local/local_story_02811829html/resources_prints
tory
Nehring, W.M. (2003). History of the role of nurses caring for persons with mental
retardation. The Nursing Clinics of North America, 38 (2), 351-372.
Olmstead v L.C. (98-536), 527 U.S. 581 (1999).
Palley, H.A., & Van Hollen, V. (2000). Long-term care for people with developmental
disabilities: A critical analysis. Health and Social Work, 25 (3), 181-189.
Parish, S. L., & Lutwick, Z. E. (2005). A critical analysis of the emerging crisis in longterm care for people with developmental disabilities. Social Work, 50 (4), 345354.
Pouty, R. W., Smith, G. & Larkin, K. C. (2007). Residential services for persons with
developmental disabilities: Status and trends through 2006. Minneapolis:
University of Minnesota, Research and Training Center on Community Living,
Institute on Community Integration.
Rodriguez. v. Res-Care. San Mateo County Superior Court Case No. 114740. B (2004).
Ruta v. Ivy Ridge Personal Care Center, Inc. 29 Philadelphia 185. (1995).
Service, K.P. & Hahn, J.E. (2003). Issues in aging: The role of the nurse in the care of
older people with intellectual and developmental disabilities. The Nursing Clinics
24
Issues in Residential and Community Based Care 25
of North America, 38 (2), 91-312.
Smith, G. A. (2006). Status report: Litigation concerning home and community services
for people with disabilities. Human Services Research Institute. Retrieved
8/27/08, from http:www.hrsi.org/doc/litigations052906
Wright v. Res-Care, U.S. Dist. LEXIS 4507 (5th Cir. June 2, 2002).
Resources
Issues in Residential and Community Based Care- Developmental Disabilities
Administration on Developmental Disabilities (ADD)
The Federal agency that is responsible for the implementation and administration of the
Developmental Disabilities Assistance and Bill of Rights Act. ADD is located within the
United States Department of Health and Human Services and is part of the Department’s
Administration for Children and Families.
http://www.acf.hhs.gov
American Association on Intellectual and Developmental Disabilities (AAIDD)
Formerly called the American Association on Mental Retardation, AAIDD is the oldest
and largest interdisciplinary organization of professionals involved in the field of
intellectual and developmental disabilities.
http://www.aaidd.org
American Health Care Association (AHCA)
AHCA is a non-profit association of state health organizations and represent nonprofit
and for profit assisted living, nursing facility, developmentally disabled and sub acute
care providers. They focus on providing quality care to elderly and individuals with
developmental disabilities in long term care facilities and the services include
information, education, legislative, regulatory and public affairs. They also provide
information on trends and government financing of long term care.
http://www.ahcancal.org
ARC
The Arc (formerly the Associated for Retarded Citizens) is the largest community based
organization for people with intellectual and developmental disabilities. It provides
services and support for families and individuals through local and state chapters.
http://www.thearc.org
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Issues in Residential and Community Based Care 26
Centers for Medicare and Medicaid Services (CMS)
The United States Department of Health and Human Services administers the Medicare,
Medicaid and State Children’s Health Insurance Program. There is extensive information
available for lay and health care professionals including laws, regulations, and
compliance information. CMS establishes the standards for the operations of facilities
that receive funds under the Medicare or Medicaid Program. Information on Home and
Community Based programs and ICF/MRs are also available.
http:www.cms.hhs/gov
Developmental Disabilities Nurses Association (DDNA)
DDNA is a national organization for nurses specializing in the field of developmental
disabilities. The organization provides education, networking, certification and advocacy
and has developed standards for developmental disabilities nursing practice. They offer
certification in the field of nursing and developmental disabilities, annual conferences
and have local State chapters.
http://www.ddna.org/
Easter Seals
Easter Seals is a community-based health agency for children and adults with disabilities
for over 90 years. They have offices provided services and supports in most States.
Easter Seals’ recently was involved in the Living with Autism Study conducted in 2008.
www.easterseals.com
National Association of State Directors of Developmental Disabilities Services
(NASDDDS)
A nonprofit organization established in 1964 in order to improve and expand the public
services available to individuals with intellectual and other developmental disabilities.
They assist State agencies in developing effective service delivery systems. They
provide listings of the developmental disabilities State agency and contact information.
http://www.nasddds.org
National Dissemination Center for Children with Disabilities
NICHY is the center that provides information on programs and services for infants,
children and youth with disabilities, including information on special education laws,
agencies, resources and research.
http://wwww.nichcy.org
Protection and Advocacy (P & A)
P & A agencies are congressionally mandated, legally based disability rights agencies
available at the national and state level. They provide legal representation and other
advocacy services to all people with disabilities whether they reside at home or in
residential facilities. P & A monitors, investigates and attempts to remedy any adverse
conditions.
http://www.napas.org
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Issues in Residential and Community Based Care 27
University Centers for Excellent in Developmental Disabilities Education, Research
and Service
Formerly known as the University Affiliated Programs, these centers were established in
1963 and are located in universities in every state. The University Centers offer an
interdisciplinary training team in advanced practice specializing in clinical excellence
services, research, and programs in the field of developmental disabilities and help
prepare the future generation to be involved in the field of developmental disabilities.
http://www.aucd.org
United Cerebral Palsy (UCP)
Founded in 1949, this national organization mission is to advance the independence,
productivity and full citizenship of people with disabilities. State UCP services may
include housing, therapy, assistive technology training, early intervention programs,
individual and family support, social and recreation programs, community living, state
and local referrals, employment assistance and advocacy.
http://www.ucp.org
Test Questions
Issues in Residential and Community Based Care-Developmental Disabilities
1. The LNC in the role of the educator can assist the attorney by:
a. Reviewing the Nurse Practice Act
b. Obtaining information on policy and procedures
c. Detailing the differences between nursing home and community care
regulations
d. Becoming an expert witness
Answer C
2. Trends and growth in long term care for people with developmental disabilities
include:
a. Home and Community Based Service Waiver Homes
b. Intermediate Care Facilities for the Mentally Retarded
c. De-population of the State Developmental Centers
d. All of the above
Answer A
3. The LNC in this field needs knowledge on the various legislative regulations for long
term care. A good source is found at:
a. Developmental Disabilities Assistance Act and Bill of Rights
b. Centers for Medicare and Medicaid Services
c. Developmental Disabilities Nurses Association
27
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d. Easter Seals
Answer B
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ASSISTED LIVING
Contents
Objectives
Introduction
Overview of the Assisted Living
Legal/Ethical Issues
Litigation
LNC Role in Trial Preparation or as an Expert Witness
Chapter Summary
References
Resources
Test Questions
Objectives
1. To describe an overview of Assisted Living, including the Assisted Living Facility
(ALF) philosophy, services available, and the clients it serves.
2. To list the varied legal and regulatory requirements related to Assisted Living
Facilities.
3. To define the LNC role in assisting with an Assisted Living case, or in acting as an
expert witness.
Introduction
The Assisted Living portion of this chapter will focus on residential and
community based care issues for individuals who reside in Assisted Living Facilities
(ALF). Although Assisted Living residents are generally from the elderly segment of the
population, individuals with developmental disabilities also reside successfully in assisted
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Issues in Residential and Community Based Care 30
living residences. The rationale for separating Assisted Living from the Nursing
Home/Long Term Care chapter is that there is a significant difference in the federal and
state regulations and the nursing scope of practice for Assisted Living. The LNC must
understand this difference when assisting the attorney in cases involving Assisted Living
residents.
Overview of Assisted Living
Historical Perspective
Assisted Living is a senior housing concept originally developed in Scandinavia
during the 1970s, combining residential housing for the elderly, with personal care
services. Assisted Living first emerged in the United States during the mid-1980s.
(Thayer, 2003). Initially, there were residential care facilities commonly known as board
and care facilities. Board and care facilities provided non-medical care and supervision,
and were sometimes located in the private homes of the service providers. (Pratt, 2004).
Board and care providers admitted residents who required minimal assistance with
Activities of Daily Living (ADLs) and required no nursing services. As the resident's
physical condition deteriorated, it would necessitate a transfer to a skilled nursing facility
or nursing home resulting in decreased occupancy. To address the decrease in occupancy,
many board and care providers began accepting and retaining residents requiring more
assistance with ADLs and more than occasional nursing services. (Murer, 1997).
Assisted Living ultimately evolved into a long-term care alternative for seniors
requiring more assistance than is available in a retirement community, but do not need
the intense medical and nursing care provided in a skilled nursing facility. The primary
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Issues in Residential and Community Based Care 31
goal of Assisted Living then and now is to provide a setting in which individuals obtain
those services needed to allow them to live with as much independence and dignity as
possible. (Pratt, 2004)
Assisted Living environments range from shared one-room accommodations to
apartments complete with kitchens and living rooms. For most providers, Assisted Living
means providing housekeeping services, meals, laundry, transportation, and limited
licensed nursing services and/or oversight, including the administration of medication.
(Murer, 1997) Residences may be free standing or housed with other residential options,
such as independent living or skilled nursing care. They may be operated by non-profit or
for-profit companies. Most facilities have between 25 and 120 units. There is no single
blueprint, because consumers' preferences and needs vary widely. (ALFA, 2008)
Definition of Assisted Living
The National Center for Assisted Living (NCAL) reports that Assisted Living
settings have been known by as many as 26 different names, including residential care,
personal care, adult congregate care, boarding home, and domiciliary care. (Pratt, 2004)
Even government and industry leaders can’t agree on a precise definition. The Centers for
Medicare and Medicaid Services (CMS) define Assisted Living as “a type of living
arrangement in which personal care services, such as meals, housekeeping,
transportation, and assistance with activities of daily living (ADLs), are available as
needed to individuals who still live on their own in a residential facility.” In most cases
the residents of these facilities pay regular monthly rent, with additional fees for other
supportive services. (GAO, 2004)
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The Assisted Living Federation of America’s (ALFA) definition of an Assisted
Living residence is “a special combination of housing, personalized assistance and health
care designed to respond to the individual needs - both scheduled and unscheduled - of
those who require help with ADLs and the instrumental activities of daily living (IADLs).
IADLs include using the telephone, getting to locations beyond walking distance, grocery
shopping, preparing meals, doing laundry, taking medications and managing money.”
(GAO, 2004)
Philosophy of Care
Assisted Living’s philosophy of care as described by AARP (American
Association of Retired Persons) – Assisted Living is the maximization of resident’s
personal dignity, autonomy, independence, privacy, and choice; provision of homelike
environment; accommodation of resident’s changing care needs and preferences;
minimization of the need to move when care needs increase; with the involvement of
families and communities. (AARP, 2008). The LNC should understand that unlike other
medical models found in most health care settings, assisted living is based on a social
model of care, with a holistic approach.
Demographics and Scope of Services
There are approximately 36,000 state-licensed Assisted Living Facilities housing
approximately 900,000 older Americans and individuals with disabilities. (GAO, 2004).
The typical assisted living resident is a female, 75-85 years old, who is mobile, but needs
assistance with two to three activities of daily living. Of the residents who currently live
in Assisted Living Facilities, 81% need help with one or more ADLs, and 93% need help
with IADLs. (Podrazik & Stefanacci, 2005). In the 2004 GAO Report, 25% of Assisted
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Issues in Residential and Community Based Care 33
Living residents required assistance with three or more ADLs and 86% of residents
required or accepted assistance with medication. Nearly half of all assisted living
residents lived at home prior to moving to the facility, while nearly one third came from
another Assisted Living Facility, nursing facility, or a hospital. (GAO, 2004) The average
length of stay in an Assisted Living residence is about 27 months. Upon discharge from
Assisted Living, 34% of the residents will move into a nursing facility, 30% will have
expired, and the remaining will move home or to another location. (NCAL, 2008)
While the vast majority of residents are elderly persons with some level of health
care needs, Assisted Living is also becoming the environment of choice for those with
Alzheimer's or other dementias, with many Assisted Living residences having dedicated
Memory Care or Alzheimer's units. Recent studies conducted by the Alzheimer’s
Association concluded that at least half of Assisted Living residents have some degree of
cognitive impairment, though most of them do not live in specialized dementia units.
(Alzheimer’s Association, 2008).
Residents in need of end-of life care prefer to have the hospice benefit provided in
their Assisted Living residence, although not every state allows hospice residents this
right. Finally, it is conceivable that, within the near future, special care for Assisted
Living residents will go beyond dementia care to encompass intravenous medication
therapies, respiratory therapies and rehabilitation.
Legal and Ethical Issues
Regulations and Licensure
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Issues in Residential and Community Based Care 34
The LNC must consider all related federal, state and local regulations related to
Assisted Living when conducting a legal review of an Assisted Living case. Skilled
nursing facilities have been heavily regulated for decades; it is only in the past few years
that Assisted Living Facilities have been regulated to any significant degree. As the
Assisted Living focus moves from housing to medical services, it will eventually be
viewed and regulated as a health care provider. (Murer, 1997)
In most states, Assisted Living is licensed as a “single entity that provides housing
and services to residents”. However, in a growing number of states a model of Assisted
Living has emerged in which the housing and services are separate. In this model, the
building is not licensed, but instead makes arrangements with “licensed service agencies”
to provide services to the residents. The “licensed service agency”, also known as a
Home Health Care agency is regulated under state and federal law. In the unlicensed
housing arrangement, the building is subject to the relevant building codes, fire codes,
and other requirements for multiunit housing. The state may also require the building to
be registered. Registration involves a much lower level of oversight than licensure and
may require only that the building file a registration form, for example, and provide a
disclosure statement to residents. (Wright, 2007)
An Assisted Living Facility must also comply with the same regulations related to
the Fair Housing Act, Occupational Safety and Health Act (OSHA), Life Safety Code,
requirements of the Equal Employment Opportunity Commission (EEOC), and the
Family Medical Leave Act (FMLA).(Pratt, 2004) The LNC when reviewing a case
related to Assisted Living should reference the Federal Acts listed, and also carefully
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Issues in Residential and Community Based Care 35
evaluate state laws and regulations affecting licensing, resident rights and housing, as
applicable.
As noted, there are federal laws that impact Assisted Living, but oversight of
Assisted Living occurs primarily at the state level. While states vary in their approach to
regulating Assisted Living, most have comprehensive regulations in place. In those states,
surveyors conduct regularly scheduled inspections. To ensure that Assisted Living
Facilities correct the deficiencies cited during the survey, states may require the facility to
prepare a formal written plan of correction. In addition, these states may conduct
reinspections and impose financial penalties, license revocations, and criminal sanctions.
(GAO, 2004)
The LNC will benefit from an understanding of the state-specific Assisted Living
regulations and definitions when reviewing an Assisted Living case. Research of these
regulations can be exhaustive as there is no one central agency or section of state law that
encompasses all aspects for all states. The NCAL Assisted Living State Regulatory
Review is a resource that is updated annually and is based on the applicable statutes and
regulations in each state. It can be a valuable resource for the LNC in researching state
specific information related to 21 state specific categories.
Staff Requirements/Qualifications/Training
Staffing levels are much less controlled by regulation in Assisted Living than in
other levels of long term care. Whereas one Assisted Living community may offer care
specialized for individuals with dementia, another community may focus on providing
services for residents with lower acuity needs. Each facility must have the right number
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Issues in Residential and Community Based Care 36
of trained and awake staff on duty and present at all times to meet residents’ needs and to
carry out the facility’s emergency and disaster preparedness plan. (ALW, 2003)
All states require skilled nursing facility administrators to be licensed, but not so
with Assisted Living administrators. An increasing number of jurisdictions are requiring
their licensure, but there is little uniformity in those requirements. In most states that do
license Assisted Living administrators, the requirements are significantly less rigorous
than for skilled nursing facility administrators. (Pratt, 2004)
Assisted Living Facilities must ensure that personnel working in their facility
perform duties only within the scope of that State’s Nurse Practice Act, or other
professional licensing or practice requirements. The professional scope and standards of
practice as established by the American Nurses Association (ANA), National
Gerontological Nursing Association (NGNA), and the American Assisted Living Nurse’s
Association (AALNA) should be adhered to in all aspects of Assisted Living nursing
functions. In general, staff should be knowledgeable regarding basic changes in aging,
geriatric drug pharmacology, falls prevention, incontinence care, ADL skills,
communication techniques, dementia care, and recognition of acute illness/delirium.
Assisted Living Facilities have a duty to retain staff that is capable of monitoring a
resident’s well-being and determining when significant medical, cognitive, and functional
changes have occurred and evaluation by a qualified medical professional is necessary.
(Podrazik & Stefanacci, 2005) Staff should receive proper orientation and training and
performance evaluation to be conducted no less than annually.
There is a call for a federal system for criminal background checks and state
requirements regarding convictions that would disqualify individuals from providing
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Issues in Residential and Community Based Care 37
services in Assisted Living Facilities, and recommends the establishment of a national
registry of individuals with histories of abuse. (ALW, 2003)
Medication Management
An important concern in the administration of Assisted Living Facilities is how
resident’s medications are managed and administered. Research has shown that Assisted
Living residents take an average of 8 medications per day. (ALFA, 2008) Assisted Living
regulations span the gamut from requiring all residents to be capable of selfadministration to allowing unlicensed staff to administer some medications under a
licensed staff member's supervision. Many states allow staff to assist residents with their
medication. "Assistance" being interpreted to include verbal reminders, opening the
medication container, placing the medication in the patient's hand and even guiding the
resident's hand to his/her mouth. (Murer, 1997)
When reviewing an Assisted Living case, the LNC should be familiar with
Assisted Living state requirements and the State’s Nurse Practice Act scope of practice
guidelines concerning medication administration. Knowledge of state pharmacy laws is
also very important. Such issues as drug storage regulations and dispensing requirements
could alter the nature of the program. Packaging policies also vary from state to state.
(Donovan, 1997) The facility should provide ongoing training of medication assistants on
a regular basis to ensure competence. Medication administration policies and procedures
are vital to medication administration safety and consistency. (Podrazik & Stefanacci,
2005). One area that has received attention has been training for medication aides. More
states are allowing unlicensed staff, providing they are adequately trained, to assist in the
administration of medications.
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Issues in Residential and Community Based Care 38
Licensed nurses are the gate-keepers for the medication program. The nurses'
overall responsibility for administration of medication as a licensed professional remains
the same as for any setting: receiving medication orders, checking for allergies, ordering
medications from the pharmacy, validating correctness of labels, assessing effectiveness,
documenting and reporting adverse reactions, and policing the quality assurance
component of administration - in short, ensuring that the right medication is given at the
right time to the right individual. (Donovan)
Determining appropriateness of self-administration of medications by an Assisted
Living resident is a nursing process which requires a "judgment call" based on the nurse's
education and experience in caring for the geriatric population. The nurse must ensure
before a resident can participate in self administration of medications, that he/she first
demonstrates competency (mental and physical) in self-administration of medications,
and the ability to remain compliant with prescribed drug regimens. This is accomplished
through a standardized assessment conducted by the licensed nurse focusing on such
abilities as dexterity, comprehension, recall and visual acuity. The assessment is
applicable to oral medications, inhalers/nebulizers, dermal patches, topical ointments, and
occasionally injections. The medication self-administration assessment should be
conducted upon admission, and at a minimum annually or with change in condition and
results documented on a standardized form which is maintained in the medical record.
More complicated routes of administration, such as suppositories and injections,
are generally the responsibility of the nurse unless the resident has demonstrated
capability for these. Some residents may have self-administered insulin for many years,
but it must be determined that they still have the dexterity to draw up the insulin and
38
Issues in Residential and Community Based Care 39
adequate vision to read the units. For the resident who does not successfully pass the
assessment, medications are delivered in the traditional manner and a reassessment is rescheduled.
Resident Rights
Many states already address to varying degrees, the rights of Assisted Living
Facility residents, in ways that are often similar to, if not the same as, rights afforded
nursing home residents. Residents of Assisted Living do not check their rights at the
door upon moving into an Assisted Living community. To assume that an individual
cannot continue to have the same rights to privacy, independence and decision making no
matter where they live, is discriminatory. Participation of a guardian or responsible party
is facilitated to ensure that the rights of cognitively impaired residents are preserved. The
National Center for Assisted Living (NCAL) advocates that residents’ rights should
include the right to:
▪
Privacy
▪
Be treated at all times with dignity and respect
▪
Control receipt of health care services
▪
Control personal finances
▪
Retain and have use of personal possessions
▪
Interact freely with others both within the assisted living residence and in the
community
▪
Freedom of religion
▪
Organize resident councils
Consumer Disclosure
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Consumer disclosure is essential in assisting consumers with understanding the
differences among Assisted Living communities and to select the one that best meets the
needs of their loved one. The decision to reside in an Assisted Living Facility should be
an informed choice with providers fully disclosing their programs, services and fees, so
that the resident and family can make an informed choice about where to live. There
should be a decision- making process that involves the provider, resident/resident’s
family and physician to make the decision. This decision includes end of life planning.
Providing consumers with the information and tools they need to make the best
choice possible about where to live is also a recent legislative trend. Residency/admission
agreements have improved through legislation addressing information that should be
included in these agreements. In addition to the admission/residency agreement, many
states now require Assisted Living providers to disseminate disclosure documents to
prospective residents and families that include information about facility services, costs,
policies that impact residents, limitations on care delivery, and the move in and move out
processes. (ALFA, 2008)
Consumers need this information to not only be complete and accurate, but also
presented in a timely way and in a form that they can understand. Consumers rely on
facility information that they receive in various ways, including marketing brochures,
facility tours, and interviews with providers. Often marketing materials, contracts and
other written materials that facilities give consumers is vague, incomplete or misleading.
Facility’s written materials often do not contain key information, such as a description of
services that are not covered or available at the facility, the staff’s qualifications and
40
Issues in Residential and Community Based Care 41
training, circumstances under which costs might change, assistance residents would
receive with medication administration, facility practices in assessing needs, or criteria
for discharging residents if their health changes.(GAO, 2004)
Residency/Admission Agreement
Clearly defined contractual obligations to residents in the written
residency/admission agreement are an important first step in preventing or limiting
liability in Assisted Living. Residency/admission agreements can be highly state-specific,
especially in states that license or otherwise regulate ALFs. In part, the
residency/admission agreement is a housing rental contract. Thus, it must comply with
federal, state, and local housing and landlord/tenant laws. The housing portion of the
agreement covers the type of accommodation, the fee schedule, payment terms, deposits,
the period the agreement is in effect, etc. Review of the residency/admission agreement
by the LNC is essential in preparation for an Assisted Living case.
The second part of the residency/admission agreement pertains to the health-related
or other personal supportive services provided. Minimum state licensure requirements
must be included, as applicable. Resident rights and responsibilities should also be listed.
The facility is legally obligated to deliver the services promised in the
residency/admission agreement. (HRC, 1997) Assisted living facilities should provide
specific, comprehensive, straightforward information in the residency/admission
agreement. The residency/admission agreement should be consistent with oral and
written communications made to residents and family members as part of the facility’s
marketing program. Residents should have the opportunity for pre-admission review of
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Issues in Residential and Community Based Care 42
the residency/admission agreement’s terms. The residency/admission agreement should
include:
▪
The term of the agreement/contract;
▪
Comprehensive description of services provided for a basis fee;
▪
Comprehensive description of and the fee schedule for services provide on an alacarte basis;
▪
Temporary absence policy;
▪
Process for initial and subsequent assessments and the development of
individualized service plans based on these assessments;
▪
Description of all circumstances and conditions under which the Assisted Living
Facility may require the resident to be involuntarily transferred, discharged, or
evicted;
▪
An explanation of the resident’s right to notice; and the process by which the
resident may appeal the decision, and a description of relocation assistance
offered by the facility;
▪
A description of the Assisted Living Facility’s process for resolving complaints or
disputes;
▪
A list of appropriate consumer/regulatory agencies;
▪
A description of the procedures a resident must follow to terminate the agreement;
▪
Detailed pre-admission disclosures regarding advance directives, specialized
programs of care, and end-of-life care.
▪
Requirements related to resident finances (Thayer, 2003)
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▪
Verbiage to avoid claims of discrimination including range of services offered,
facility rules, and extent to which accommodation is available (HRC, 1997)
Resident Assessments/Individualized Service Planning
For the aging adult, a move to an Assisted Living Facility often signals some
medical, cognitive, or functional need which makes a comprehensive assessment crucial.
It offers the opportunity to provide optimum interventions designed to maintain
independence and prevent existing conditions from deteriorating. All residents entering
an Assisted Living Facility should have a baseline evaluation of their physical, medical,
and psychological needs completed by a qualified, licensed, independent practitioner.
Residents should receive periodic reassessment to determine if care needs have changed. .
(Podrazik & Stefanacci. 2005)
The foundation of resident centered care is the Individualized Service Plan (ISP),
which can also be known as a care plan, service plan or resident goal plan. The ISP is
designed to meet the individual needs and preference of each resident. The ISP is
developed after an assessment process that takes into account not only what services the
resident needs, but what they want as well. The ISP is completed by a licensed nurse, and
is prepared in conjunction with the resident, family and staff. (ALFA, 2008)
Negotiated Risk Agreements
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Issues in Residential and Community Based Care 44
The concept of negotiated risk has been suggested as a mechanism for Assisted
Living programs to balance resident’s personal autonomy with the provider’s duty to
protect residents from harm. Examples in which negotiated risk has been suggested
involve situations such as a resident in an ALF repeatedly departing from a medically
prescribed diet or failing to take ordered medications. Negotiated risk in Assisted Living
has been compared to the legal and ethical doctrine of informed consent. In Assisted
Living, however, the prerogative to refuse unwanted interventions applies not to discrete
medical procedures, but to ongoing health related, dietary, and residential interventions
that compromise an Assisted Living arrangement.
Although the theory has not been tested directly in court, proponents of negotiated
risk would be available as a defense to a negligent action if a defendant were able to
prove that a plaintiff voluntarily and knowingly assumed the risk of certain conduct that
might otherwise be deemed negligent. Or, even if the provider was found negligent,
liability might be reduced to the degree of the plaintiff’s own contributory negligence.
The assumption of risk, however, is predicated upon the resident or a legally authorized
surrogate being capable of a deliberate and voluntary choice.
Negotiated risk is a new approach to managing resident related risk. It will not
provide full protection from provider liability and may be inappropriate if the risk of
harm is very high. As one attorney put it, “residents may assume risk in theory, but hold
the facility responsible in practice”. Negotiated risk, properly understood and applied, can
fill some of the void in providing an analytic tool and mechanism by which providers and
residents can assess and accommodate certain unusual situations.
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Negotiated risk, while a useful tool, should play a relatively limited role in day-today operation of the ALF. Providers always have responsibility to their residents –
imposed by regulation, licensure and community expectations – which they cannot avoid
or “negotiate away”. Likewise, even though the philosophy of assisted living is to
promote resident autonomy and choice, resident rights are not unlimited. (Bianculli,
1999)
Litigation
As with skilled nursing facilities, assisted living residences have the potential for
many of the same legal actions related to negligence and medical malpractice. Many of
the traditional health and safety risk areas for long-term care related to medication errors,
accident or fall injuries, elopement, smoking, and suicide are also evident in assisted
living. Also equipment related causes (e.g. wheelchairs tipping, legs collapsing on
commodes, safety belts loosening, and unsafe electric wheelchair use) are another risk
area. Negotiated risk factors into this area, as many of the assisted living residents want
to manage their own actions in spite of the risk involved.
Abuse, neglect, and misappropriation of resident funds are another area that has
been cited in recent assisted living cases. Additionally, an assisted living facility would
also be subject to any aspect of the Fair Housing Act, Occupational Safety and Health
Act (OSHA), Life Safety Code, and Americans with Disabilities Act.
LNC Role in Trial Preparation or as an Expert Witness
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The LNC participating in an Assisted Living case has many areas of research and
review that should be considered. These efforts should include a review of the Assisted
Living Facility’s operational processes and policies related to services, environment,
consumer protections (including resident rights, contracts, and risk negotiation), and
management responsibilities.
Services. Resident screening should have occurred before move-in. In addition,
each resident should have undergone a comprehensive assessment for health,
psychosocial, and cognitive status. This would have ensured that the facility was able to
meet the resident's needs and served as a basis for the development of an individualized
service plan (ISP). Information from the resident's physician and documents such as
guardianship papers, powers of attorney, living wills, and do-not-resuscitate orders also
should have been obtained at the time of admission. The individualized service plan
should have been developed with the assistance of the resident and/or designated agent.
The individualized service plan should have included the scope, frequency, and duration
of services and monitoring, and it should have been responsive to the resident's needs and
preferences. The individualized service plan should have been reviewed at routine
intervals after move-in and annually thereafter, or as the resident's needs or preferences
change.
Environment. A safe, homelike environment should have been provided for all
residents. This environment should support choice, independence, privacy, comfort, and
individuality. Life Safety Code review reports conducted by state, county or local
authorities should be obtained and reviewed for violation of safety requirements by the
LNC.
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Consumer Protections. Residents' records should have been kept confidential and
released only with consent. In addition, providers should have ensured residents' choices
and the right to autonomy for as long as possible, even if that meant taking some risks.
Residents should have shared responsibility for decisions affecting their lives and have
been fully informed of their rights and responsibilities. A copy of the Resident Right
statement provided to the resident should be obtained and reviewed by the LNC.
Contracts and Agreements. The most significant document in the resident’s stay at
the Assisted Living Facility is the residency/admission agreement. The LNC and the
attorney must review the document signed by the resident assuring that it encompasses all
of the facility's commitments and actual practices, including the criteria and procedures
for admission, on-site transfers, and discharge. Payment information should be
comprehensive and include: rate structure and payment provisions for both covered and
noncovered services; an explanation of billing, payment, and credit policies; criteria for
determining level of service and additional charges; fees and payment arrangements for
third-party providers; provisions for payment during absences; and the facility's policy
for residents who can no longer pay for services. The admission/residency agreement is
used by the LNC in citing what should have been provided to the resident by the facility
when writing reports or testifying.
Negotiated Risk. When a resident wanted to engage in potentially risky behavior,
such as service refusal, a negotiated risk agreement should have been initiated, following
open discussions with management and family members about the consequences of the
resident's choice. If the resident's mental or physical condition changed substantially, the
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negotiated risk agreement should have been reviewed. The LNC should obtain copies of
the operational policies, procedures and forms related to Negotiated Risk.
Staffing. The facility should have maintained sufficient qualified staff members
capable of meeting scheduled and unscheduled resident needs at all times. The LNC
should obtain copies of the facility staffing patterns for the time period applicable to the
case. The facility should have ongoing training for staff on how to monitor changes in
residents' physical, cognitive, and psychosocial conditions. In facilities serving residents
with dementia, direct-care staff should receive dementia-specific training each year. The
LNC should also review the Assisted Living Facility’s orientation and training outlines
and attendance documentation, job descriptions, organizational chart, determination of
position and skill knowledge, hiring practices, including background and reference
checking processes.
Advertising. Facilities must be vigilant about advertising specific features if they
cannot ensure 100% service or compliance. Quality-of-care claims or "overselling the
product" can leave a facility vulnerable to a lawsuit if they cannot be evidenced through
documentation. Examples of such claims include: "Meadow Acres Assisted Living
provides the best care possible care," "24-hour assistance provided," "around-the-clock
support designed to meet the individual personal care needs of residents," "24-hour
supervision," "Meadow Acres supports aging in place; no need to ever move again."
Advertising or brochures contain verbal statements that promise residents and families
services that cannot be delivered. For example, "Our security system will keep your mom
from eloping." If the facility does not provide a locked unit, this claim is untrue.
(Peterson, 2005). The LNC should obtain copies of all marketing materials for the time
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period of the case, including copies of informational recordings that would be listened to
while an applicant was waiting on the telephone for assistance.
Statements of deficiencies from past state health department surveys can be used
to contradict such statements and can lend support to plaintiff's claims. The LNC can
assist the attorney with the review of state survey reports to identify negative resident
outcomes that could be blamed on the facility rather than on the resident’s age or preexisting medical problems. The survey reports provide a roadmap for the plaintiff’s
liability case at the trial, and for the recovery of compensatory damages.
Operational Documents: The LNC should obtain resident care and administrative
policies and procedures for operation of the facility related to all services provided by the
facility including:
▪
Administrator – continuing education; responsible person designated in absence of
the administrator
▪
Admission, transfer, discharge, discharge planning, and referral services
▪
Resident assessments and care plans
▪
Resident records – content and storage
▪
Personal care services – including assistance with ADLs, assistance with seeking
health care and associated transportation when indicated, obtaining functional aids or
equipment, clothing as well as maintenance of personal living quarters
▪
Nursing, social, dietary and activity services, including:
O Protocols to use in the event of serious health threatening conditions,
emergencies, or temporary illness. These protocols must include designation of a
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practitioner for each resident and notification of an appropriately licensed
professional in the event of an illness or injury of a resident.
O Provision for pharmacy and medication services developed in consultation with a
consultant pharmacist that include; assisting residents in obtaining medications
from a pharmacy, storage of medications, medication administration, disposing of
medications that are discontinued or expired, and allowing the resident to be
responsible for self-administration based on assessment of the resident’s
capabilities with respect to this function.
▪
Fire safety including fire drills, fire evacuation plans and drills
Finally the LNC must understand the specific State’s Nurse Practice Act as it
related to the scope of practice; delegating medical and nursing services as tasks
(especially medication administration and health or crisis interventions); premises of
delegation, and supervision by an RN of unlicensed persons performing assisted living
tasks. Each person involved in the delegation process is accountable for their own action;
supervision is inherent – if an RN decides to delegate, the RN is responsible for
supervising the delegate and their actions, whether the RN is physically present or not.
The RN may assign an LPN to monitor for the RN but the RN must be available for
consultation and direction; and finally per most State Nurse Practice Acts, the functions
of assessment, evaluation and nursing judgment can not be delegated.
Chapter Summary
The LNC can be invaluable in providing the attorney with an overview and
understanding of the complex world of assisted living. Being able to articulate the
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differences between long term care and assisted living requirements; having a
knowledge-base of the assisted living services and philosophy; and having the ability to
analyze the clinical aspects of an assisted living case, are why an LNC would be an
essential part of the legal team.
References
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
Alzheimer’s Association, website content, www.alz.org. 2008.
American Association of Homes and Services for the Aging (AAHSA), Operational
Practices in Assisted Living, compiled and edited by Ruth A Gulyas, 1999.
American Association of Retired Persons (AARP), website content, www.aarp.org.
2008.
Assisted Living Federation of America (ALFA), website content, www.alfa.org.
2008.
Assisted Living Workgroup (ALW), US Senate Special Committee on Aging Report,
Assuring Quality in Assisted Living: Guidelines for Federal and State Policy, State
Regulation, and Operations, April 29, 2003.
Bianculli, J., Negotiated Risk in Assisted Living, AAHSA Operational Practices in
Assisted Living; Chapter 8, p157-179, 1999.
Donovan, J., Managing Medications in Assisted Living, Nursing Homes, July-August,
1997.
General Accounting Office (GAO), Assisted Living: Examples of States Efforts to
Improve Consumer Protections, GAO Report Number GAO-04-684, May 27, 2004.
HRC Volume 3 - Long-term Care 1, Overview of Long Term Care Risks, Published
by ECRI, Plymouth Meeting, PA, January 1997.
Murer, M., Assisted Living: The Regulatory Outlook; Nursing Homes. July-August
1997
National Center for Assisted Living (NCAL). 2008 State Regulatory Review, 2008.
National Center for Assisted Living (NCAL), website content, www.ncal.org. 2008.
Peterson, S., Developing Risk Management Protocols In Assisted Living: Assisted
Living Has Its Own Litigation Traps For The Unwary, 2005.
Podrazik, P. and Stefanacci, R., Negotiating the Complexities of the Long Term Care
Continuum, Assisted Living Consult, March/April 2005.
Pratt, J., Long Term Care, Long-Term Care: Managing Across the Continuum,
Second Edition, 2004
Rubinger, H. and Gardner, R., Assisted Living’s First Steps Toward Uniformity:
Assisted Living Workgroup Submits Recommendations To Congress, Continuing
Care, July/August 2003.
Thayer, J., Written Statement of Jan Thayer on Behalf of The National Center for
Assisted Living; Federal Trade Commission/Department of Justice - Hearing on Long
Term Care/Assisted Living, For the Hearing Record, Submitted June 11, 2003.
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▪
Wright, B., AARP Study: #2007-08: Assisted Living In Unlicensed Housing: The
Regulatory Experience Of Four States, April 2007.
Resources
▪
▪
▪
▪
▪
Assisted Living Federation of America (ALFA), www.alfa.org. - The Assisted Living
Federation of America (ALFA) monitors legislative and regulatory proposals in all 50
states. The information is updated weekly and is an excellent way for ALFA to stay
on top of what is being proposed across the country. In addition, ALFA continues to
be a resource for best practices and examples of successful laws and regulations.
U.S. Senate Special Committee on Aging – www.senate.gov. Assisted Living
Workgroup (ALW) 381-page report, entitled Assuring Quality in Assisted Living:
Guidelines for Federal and State Policy, State Regulation, and Operations
Center for Excellence in Assisted Living (CEAL) – www.theceal.org. ALW report to
congress in April 2003, recommended that a National Center for Excellence in
Assisted Living (CEAL) be formed and funded to serve as an ongoing source of
information and guidance to states regulating assisted living.
American Assisted Living Nurses Association (AALNA), www.alnursing.org.
American Nurses Association (ANA) www.nursingworld.org.
Test Questions
1. Which of the following services would be available in an Assisted Living facility?
a. Medication administration
b. Hospice care
c. Assistance with ADL’s
d. All of the above
2. Which of the following statements about assisted living regulatory requirements is
NOT true?
a. All assisted living administrators are licensed by the state
b. An assisted living facility must comply with OSHA and Life Safety Code
c. Most states have regulations in place regarding assisted living facilities
and services
d. Medication can be administered by unlicensed staff
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3. Select the answer that would NOT describe a staff member’s roles and
responsibilities in an assisted living facility.
a. Nurse Practice Act
b. Job description
c. Federal Nursing Home regulations
d. Individualized Service Plan
4. Which of the following would be an essential element when reviewing an
Assisted Living case?
a. Admission/residency agreement
b. Marketing materials
c. Individualized Service Plan
d. All of the above
Answers: 1.d ; 2.a ; 3.c; 4.d
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