Background Brief Executive Summary
Medical Home (Post-Summit)
This background brief presents an overview of the status of Medical Home for children
and youth with special health care needs in Maryland. This document was developed as
background material for the November 6th and 7th, 2008 Maryland Community of Care
for Children and Youth with Special Health Care Needs Summit.
The federal Maternal and Child Health Bureau, together with its partners, has identified
six core outcomes as critical indicators of success in implementing community-based
systems of services for all children and youth with special health care needs (CYSHCN)
in accordance with Healthy People 2010 and the President’s New Freedom Initiative.
Using the Maternal and Child Health Bureau’s six core outcomes as a framework, the
Summit agenda focuses on information-sharing, problem-solving, and consensus
building around needed systems change for CYSHCN in Maryland. This background
brief relates to Core Outcome #2:
CYSHCN receive coordinated ongoing comprehensive care within a medical
home.
What is a Medical Home?
A medical home is not a building, house or hospital, but rather an approach to providing
health care services in a high-quality and cost-effective manner. Children and their
families who have a medical home receive the care that they need from a pediatrician or
other pediatric primary health care provider whom they trust. Pediatric health care
providers and parents act as partners in a medical home to identify and access all the
medical and non-medical services needed to help children and their families achieve
their maximum potential. According to the American Academy of Pediatrics (AAP), care
in a medical home is accessible, continuous, comprehensive, family-centered,
coordinated, compassionate, and culturally effective.
In 2007, the AAP, the American Academy of Family Physicians (AAFP), the American
Osteopathic Association (AOA) and the American College of Physicians (ACP) used this
concept of the medical home to develop a set of joint principles that describe a new level
of primary care which they call the Patient-Centered Medical Home. The PatientCentered Medical Home (PC-MH) is an approach to providing comprehensive primary
care for children, youth and adults. The PC-MH is a health care setting that facilitates
partnerships between individual patients and their personal physicians, and when
appropriate, the patient’s family. The principles of the PC-MH include an ongoing
relationship with a personal physician; a physician-directed medical practice; a whole
person orientation to care; care that is coordinated and/or integrated across all elements
of the complex health care system and the patient’s community; quality and safety,
enhanced access to care, and payment that appropriately recognizes the added value of
a PC-MH.
Why is a Medical Home important?
A medical home is especially important for CYSHCN and their families. Due to complex
conditions and multiple needs, these children and families often require help finding
resources, setting priorities, and coordinating care with a variety of providers. This must
occur in the face of rising health care costs, complicated service systems, and dwindling
health care coverage. Available evidence on medical homes for CYSHCN supports a
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Background Brief Executive Summary
Medical Home (Post-Summit)
positive relationship between medical homes and desired outcomes such as better
health status, timeliness of care, family centeredness, and improved family functioning.
In addition, evidence shows that care delivered by primary care physicians in a PatientCentered Medical Home is consistently associated with better outcomes for adults,
reduced mortality, fewer preventable hospital admissions for patients with chronic
diseases, lower utilization, improved patient compliance with recommended care, and
lower Medicare spending.
Who are Children and Youth with Special Health Care Needs?
The federal Maternal and Child Health Bureau defines CSHCN as those who have or are
at increased risk for chronic physical, developmental, behavioral, or emotional conditions
and who also require health and related services of a type or amount beyond that
required by children generally. An estimated 15.5% of Maryland children ages 0-17 have
special health care needs, corresponding to almost 217,000 children (National Survey of
CSHCN, 2005-06).
Medical Home in Maryland – What Do We Know?
National Survey of CSHCN 2005-06
The National Survey of Children with Special Health Care Needs is a national telephone
survey that provides information about CYSHCN in all 50 States and the District of
Columbia. In each state, in-depth interviews were conducted with the parents of 750 to
850 CYSHCN. Data from the NS-CSHCN is used to monitor progress on the core
outcomes. Key findings related to medical homes:
 Maryland ranked 38th among the states for success in Core Outcome #2
 Hispanic and Black, non-Hispanic children, uninsured children, and those in
families with incomes less than 200% FPL were least likely to report care
consistent with a medical home
The following are the indicators used to measure Core Outcome #2 on the NS-CSHCN:
Indicator
Maryland %
Nation %
Core Outcome #2: CYSHCN receive coordinated, ongoing,
comprehensive care within a medical home.
CYSHCN ages 0-17 who have usual source(s) for both sick
and well care.
CYSHCN ages 0-17 who have a personal doctor or nurse
45.6
47.1
93.7
92.9
95.8
93.5
CYSHCN ages 0-17 who have no problems obtaining
referrals when needed
CYSHCN ages 0-17 who receive family-centered care from
health providers
CYSHCN ages 0-17 who receive effective care coordination
29.1
26.0
59.9
62.4
45.6
46.0
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Background Brief Executive Summary
Medical Home (Post-Summit)
Maryland Medical Home Survey 2006
The 2006 Maryland Medical Home Survey was a non-randomized survey of 501 parents
and caregivers whose CYSHCN received respite care funded by OGCSHCN through
local health departments. This survey gathered information about access to specific
components of care consistent with the medical home model. Some key findings:
 87% of respondents indicated that they had never heard the term “medical home”
 Only 43.5% of respondents indicated that they usually or always share decisionmaking with their child’s PCP
 Almost 75% reported that their child’s PCP usually or always helps with or
manages all aspects of their child’s care (ex. finding specialists, therapists, or
mental health services)
 Only 33% of respondents indicated that their child’s PCP has developed a plan of
care that is shared with other providers/organizations involved in their child’s care
 Half of the respondents reported that their child’s PCP never provides information
about public resources such as Supplemental Security Income (SSI), Medicaid,
Early Intervention (ITP) programs, and respite
 1 out of 5 respondents reported lack of availability of their child’s PCP or
someone in the practice 24 hours a day, 7 days a week, and 52 weeks per year
 Over 40% of respondents indicated that their child’s PCP never communicates
with other providers, such as other health care, education, or day care providers
involved with their child’s care
 Almost 90% of respondents said it is usually or always clear that their child’s
PCP genuinely cares for the child and family’s well-being based on the way the
doctor acts and speaks
 Over 92% of respondents indicated that their child’s PCP usually or always
recognizes and respects their child and family’s cultural background with respect
to beliefs, rituals, and customs
The Parents’ Place of Maryland Survey of Parents of CYSHCN 2006
The Parents’ Place of Maryland conducted a survey to obtain information about the
impact of caring for CYSHCN. Responses were obtained from 250 parents across
Maryland using Survey Monkey and on paper. Some key findings related to medical
home:
 Over 30% of parents reported that they or other family members spend 10 or
more hours per week arranging or coordinating their child’s care
 Over 32% of parents reported that they never get professional help coordinating
their child’s care or treatment services
 For those who have received professional help with care coordination, the
majority (almost 65%) report receiving this from a doctor’s office
 Only 24% of parents reported that they are extremely or very satisfied with the
help they receive in coordinating their child’s care
Maryland American Academy of Pediatrics Focus Groups on Medical Home 2005
Focus groups were conducted in 5 regions of the state with physicians, parents, and
other professionals. Some key findings from the physician groups:
 Most physicians reported that they enjoy caring for children with complex needs
 The greatest barriers to caring for CYSHCN reported by physicians were time
and money; caring for CYSHCN takes more time than caring for a child without
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Medical Home (Post-Summit)
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special health care needs, and much of this time is either not reimbursed or
inadequately reimbursed by insurance companies. Examples included the time
needed for extended visits, making referrals, refilling prescriptions, writing letters
of medical necessity, communicating with other providers, and generally
coordinating care.
Physicians noted problems communicating with specialists, community agencies,
and multiple insurers.
Although they thought it was a good idea, physicians reported that they don’t
have information on community resources in their offices; they either don’t know
how or don’t have the staff to get it, display it, or keep it updated
Medical Home in Maryland – What Are We Doing?
Leadership and Policy
 The Office for Genetics and Children with Special Health Care Needs
(OGCSHCN) in the Maryland Department of Health and Mental Hygiene is
charged with implementing the national agenda and core outcomes for CYSHCN,
including medical home, in Maryland
 Supported by the OGCSHCN, The Parents’ Place of Maryland (PPMD), and The
Maryland Chapter of the American Academy of Pediatrics, a Maryland Medical
Home State Plan was developed in 2006 with stakeholder input. A Medical Home
Leadership Team began work on selected components of the plan and
OGCSHCN hired a Medical Home Projects Coordinator in 2007 to oversee
implementation of the plan and related activities. The plan includes the following
goals:
o Increase awareness and understanding of the medical home concept for
families and pediatric health care providers
o Increase awareness and understanding of practice management
strategies that support medical homes for CYSHCN (ex. coding practices,
scheduling, care coordination)
o Improve the ability of pediatric health care providers to connect CYSHCN
and their families with needed state and local resources
o Improve the capacity of individual pediatric primary care practices to
provide care consistent with the medical home model using quality
improvement methodology
o Enhance communication and collaboration between the medical home
and multiple Maryland agencies that serve CYSHCN and their families
o Improve the capacity of medical homes to advance the other Healthy
People 2010 objectives for CYSHCN (ex. early and continuous screening,
transition to adulthood)
 While some of the specific activities from the state plan have been implemented,
the Medical Home Leadership Team has been on hiatus in recent months due to
loss of staff support.
Family and Provider Education and Training
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Background Brief Executive Summary
Medical Home (Post-Summit)
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The Medical Home Leadership Team developed medical home brochures for
families and pediatric primary health care providers; these have been
disseminated through multiple mechanisms including mailing to all pediatricians
and family practitioners in the state
PPMD created a 10-minute video entitled, “Effective Doctor’s Visits” that gives
families concrete tips on how to be better partners in their child’s care. This video
is available on DVD and has been distributed to both parents and providers,
potentially for use in waiting rooms.
“Extreme Medical Home Makeover” was a unique educational program piloted by
the Medical Home Leadership Team in 2007, targeting a small group of
pediatricians and key office staff. It was a series of 4 learning and sharing
sessions over a several month period aimed at providing participants with
concrete tools and strategies to enhance the provision of high quality primary
care for CYSHCN. Participants had the opportunity to hear from experts, engage
with peers in a small group format, and receive materials such as care notebooks
for their practice.
In 2005-06, Maryland participated in the Medical Home Learning Collaborative II
sponsored by the National Initiative for Children’s Healthcare Quality. In this
project, a Maryland State team supported one pediatric primary care practice
team to study, test, and implement medical home improvements using the
framework of the Care Model for Child Health in a Medical Home. The Maryland
practice team tested/implemented changes in most of the Care Model
components and had self-rated improvements on the Medical Home Index in
virtually all areas. A spread strategy based on the experience in this project was
incorporated into the Medical Home State Plan.
Service Identification and Coordination
 Baltimore City Health Department’s “Medical Homes Project”, supported by
OGCSHCN, uses strategies based on the success of the pharmaceutical industry
in “getting in the door” at medical sites and sharing its messages and products to
engage Baltimore City pediatric primary care practices with the staff of public
health programs (ex. Infants and Toddlers, Healthy Start, Childhood Asthma
Program) to share information/resources, to make personal contacts, and to
identify ways the systems of care can coordinate efforts for the children that they
serve. The goal is to help these medical homes to become better sources of
information and support for families of CYSHCN
 OGCSHCN supports gap-filling care coordination for CYSHCN in 14 local
jurisdictions. Most jurisdictions have relationships with and receive referrals from
local primary health care providers. Due to many years of level funding, the
capacity of local health departments to provide this service has greatly
diminished. The Coordinating Center has been working with OGCSHCN and
local health department staff to develop a process and tools to improve
consistency in the practice of care coordination across jurisdictions as well as a
uniform reporting system to monitor outcomes.
 OGCSHCN has developed the templates for a customizable care notebook for
families of CYSHCN, available on the web.
Direct Services
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Background Brief Executive Summary
Medical Home (Post-Summit)
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The Complex Care Program at Children’s National Medical Center supports
medical homes by bridging and filling the gap between primary care providers
and tertiary services provided by the medical center. Both clinical and care
coordination services are offered. This program receives funding from
OGCSHCN.
Johns Hopkins University, supported by OGCSHCN, is attempting to develop a
sustainable medical home model, focusing first on high prevalence, high impact
and/or high cost conditions including asthma, ADHD, and sickle cell disease.
This model will be developed and evaluated in the Harriet Lane Clinic and will
involve: 1) case management; 2) feedback to providers about medication refills
and health care utilization based on insurer data; 3) enhanced specialistgeneralist communication; 4) targeted interventions with high-utilizing children
and 5) improved services to facilitate transition of adolescents with special needs
to adult health care providers.
What Do We NOT Know About the Status of Medical Home in Maryland?
 How many pediatric primary care practices in Maryland would be considered high
quality medical homes for CYSHCN?
 What activities are occurring in the adult health care arena around medical home
development/improvement that would be of benefit to medical homes for
CYSHCN?
 What are pediatricians and family practitioners in training in Maryland learning
about the medical home model?
 Do public and private agencies that provide care coordination for CYSHCN in
Maryland perform this service in conjunction with a child’s medical home?
 Are any Maryland insurers supporting medical home improvement through
specific reimbursement strategies?
From November 2008 CoC Summit:
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Provider characteristics: communication, empathy, paternalism,
competence, and cultural sensitivity, lack of knowledge, skills and
resources to implement the Medical Home
Parent characteristics: lack of information, not prepared to effectively
coordinate child’s care, isolation and lack of platform for education in
Medical Home requirements and expectations, and care coordination
Care coordination agency fragmentation and lack of standards
Lack of compensation for: care coordination, non face-to-face care, and
non-physician care
Seeming lack of interest in Medical Home on a statewide level
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Background Brief Executive Summary
Medical Home (Post-Summit)
Current Objectives to Achieve Adequate Medical Home for CYSHCN
Our vision is that all children and youth receive comprehensive health care
through a family centered approach, encompassing on communication,
collaboration, cultural competence and respect.
Opportunities for Improvement
The current status of Medical Home in Maryland is we have tremendous
opportunities based on our ongoing partnerships and relationships and strong
interest of stakeholders in promoting the Medical Home model.
Challenges remain in the areas of providers and practices, family readiness and
education, care coordination and aligning compensation with supporting medical
home improvement.
Strategies to Enhance Medical Home in Maryland
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Medical home indexing
Physician training
Family training
Parent involvement in physician and resident training
Revisit case management
Realign compensation with Medical Home goals
Ongoing inventory of community resources (living document)
Steps to Complete Brief
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General: target audience, executive summary, one page bullet format,
data consistency
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What’s Good: brings data from different sources, highlights family
experience, leaves room for strategizing
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What’s Missing : Data base info: PPMD. KKI, oral and mental health,
emphasis on community collaboration and communication between
services and agencies, as well as between patients and provider
highlighting strength of Medicaid benefit package, Medicaid expansions,
ASK program,
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WHAT’S NEXT Practice evaluation/medical home indexing, centralized
access to resource data bases, Parent and practice training for medical
home, data on who are the kids and what are the costs, legislative
champion, aligning compensation with medical home improvements
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Background Brief Executive Summary
Medical Home (Post-Summit)
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