Background Brief Executive Summary
Adolescent Transition (Post Summit)
This background brief presents an overview of the status of health care transition of
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 #6:
All YSHCN will receive the services necessary to make transitions to all aspects of
adult life, including adult health care, work, and independence.
What is Health Care Transition?
Health care transition is the planned, purposeful movement of adolescents and young
adults with special health care needs from child-centered to adult-oriented health care
systems (Blum et al, 1993). Health care transition is one of many transitions that youth
with special health needs will face as they move into adulthood. Education,
employment, and living within the community are other areas of transition to adulthood
that must be addressed in order to assure the independence, productivity, and wellbeing of youth with special health care needs (YSHCN).
Why is Health Care Transition Important?
For the first time, a generation of YSHCN has survived beyond their diagnosis and
prognosis. Because of a lack of attention to health promotion and disease prevention
and/or poorly managed health (including mental health) problems, however, many
YSHCN cannot maintain placement in higher education, sustain employment, or live
independently.
For success in the classroom, in the community and on the job, young people with
special health care needs must optimize their health potential. This requires an
understanding of their health needs and involvement in their health care decision making
to the extent possible. It requires finding new providers and assuring a means of health
care financing. Youth will need preparation to take responsibility for their future health
needs, and planning to ensure access to quality care within the community as they
become adults. Ideally, this should all occur through the health care transition process.
Who are Children and Youth with Special Health Care Needs?
The federal Maternal and Child Health Bureau defines CYSHCN as those who have or
are at increased risk for chronic physical, developmental, behavioral, or emotional
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Maryland Community of Care Consortium for Children with Special Health Care Needs
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Background Brief Executive Summary
Adolescent Transition (Post Summit)
conditions and who also require health and related services of a type or amount beyond
that required by children generally. An estimated 18.6% of Maryland children ages 12-17
have special health care needs, corresponding to over 94,650 children (National Survey
of CSHCN, 2005-06).
Health Care Transition in Maryland – What Do We Know?
National Survey of CSHCN 2005-06
The National Survey of Children with Special Health Care Needs (NS-CSHCN) 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 health care transition:
 Maryland ranked 42nd among the states for success in Core Outcome #6;
 Hispanic children, publicly insured children, those in families with incomes less
than 200% FPL, and those without a medical home were least likely to report
receiving necessary transition services.
The following are the indicators used to measure Core Outcome #6 on the NS-CSHCN:
Indicator
Core Outcome #6: CYSHCN ages 12-17 who receive the
services necessary to make appropriate transitions to adult
health care, work and independence
CYSHCN ages 12-17 whose doctors and other health care
providers have discussed eventually seeing providers who
treat adults
CYSHCN ages 12-17 whose doctors and other health care
providers have discussed youth’s health care needs as
he/she becomes an adult
CYSHCN ages 12-17 who have had someone discuss how to
obtain or keep health insurance as he/she becomes an adult
CYSHCN ages 12-17 whose doctors and other health care
providers usually or always encourage development of selfmanagement skills and knowledge
Maryland %
Nation %
37.4
41.2
10.8
11.9
46.5
46.2
18.9
21.3
75.4
78.0
Pediatric Primary Care Provider Survey of Transition Practices 2006
Kennedy Krieger Institute and the Office for Genetics and Children with Special Health
Care Needs (OGCSHCN) in the Maryland Department of Health and Mental Hygiene
conducted a survey by mail of pediatricians and family practitioners to assess current
practices and needs related to supporting the health care transition process for
CYSHCN in their care. The overall response rate was 12.5% out of 2500 surveys
mailed. Some key findings:
 Areas of relative self-reported strength for pediatric primary care providers were
in the areas of keeping comprehensive medical summaries, meeting privately
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Background Brief Executive Summary
Adolescent Transition (Post Summit)
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with adolescents for part of the visit, and providing age-appropriate and
developmentally-appropriate anticipatory guidance.
Some of the areas of greatest weakness were found in creating a written health
care transition plan, ability to direct patients and their families to resources that
facilitate transition, and assisting families with identifying health care providers
who are comfortable caring for adults and collaborating with those providers.
Knowledge of health care resources, knowledge of educational and vocational
resources, and time were the top 3 issues reported to impact pediatric primary
care providers’ ability to facilitate health care transition planning.
Listening and Learning From Families and Transition-Age Youth, 2006
The Maryland Coalition of Families for Children’s Mental Health conducted focus groups
at six locations throughout the state with transition-age youth with mental health needs
ages 15-25 and their parents or caregivers to learn about a variety of transition issues.
Input was obtained from a total of 32 youth and 34 family members. Recommendations
from youth/families related to health care transition:
 Families should be informed about medical power of attorney and encouraged to
discuss this option with their children. Families should be informed of legal
resources to obtain medical power of attorney at low cost.
 At the treatment level, parents must be part of the treatment planning process
when the youth believes them to be an essential part of the team. While there
may be legal complexities to parental involvement in an adult child’s treatment, it
is clearly necessary to include parents as much as possible and for their
participation to be considered important to the child’s well-being.
Focus Groups on Health Care Transition for CYSHCN, 2004-06
The OGCSHCN contracted with the Kellidge Group to conduct focus groups throughout
the state both with YSHCN ages 13-21 and also with their parents. The goal was to
obtain youth and parental views on needs related to health care transition in Maryland.
Thirteen focus groups were conducted with a total of 79 parents/caregivers and 31
YSHCN with a variety of disabilities and special health care needs participating. Some
key findings:
 Very few parents reported that their child’s doctors had discussed health care
transition with them, and very few had begun the process on their own. Youth
under age 18 expressed little knowledge and interest regarding health care
transition.
 Parents and youth had many concerns related to finding new doctors that treat
adults including finding providers knowledgeable about the child’s health
condition or disability, finding appropriate providers in medically underserved
areas, and the nature of the adult health care environment such as differences in
bedside manner and how individuals are treated, and less accommodating hours
and scheduling.
 Some parents reported difficulty getting their children to take more responsibility
for their health care, and in families where the youth had a condition that
significantly interferes with decision-making, some parents were wrestling with
issues of guardianship. There was a general lack of information about how and
when to obtain medical surrogacy or guardianship, the benefits and risks
involved, and the cost of legal help.
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Background Brief Executive Summary
Adolescent Transition (Post Summit)
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Parents did not understand the various insurance options available, many did not
understand Medicaid eligibility rules, and they reported having to negotiate a
number of different agencies and receiving conflicting information. Most
participating youth knew very little about their health care coverage and had
given little thought to how health insurance would be obtained in the future.
Other Data
An estimated 26% of Maryland’s 19-24 year olds are uninsured according to the
Maryland Health Care Commission (2005)
Health Care Transition 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 health care transition, in Maryland.
 Youth Ready by 21: A Five Year Action Agenda for Maryland was developed in
2007; with support from the Children’s Cabinet and Governor’s Office for
Children, The Forum for Youth Investment worked with Maryland’s Ready by 21
Action Team to develop this action agenda targeted at all Maryland youth. Out of
12 strategies seen as highest priority, 2 strategies under the goal of accessible,
affordable health care address health care transition:
o Explore the feasibility of ensuring that all older youth have health care
coverage though the age of 24;
o Develop an integrated system of high quality prevention and treatment
services and activities for all youth.
Youth, Family, and Provider Education and Training
 The OGCSHCN is partnering with the Maryland State Department of Education
to provide an educational sheet entitled, “10 Steps to Health Care Transition” to
all families of children with IEPs and special health care needs in Maryland public
high schools.
 The Governor’s Interagency Transition Council holds an annual Maryland
Transition Conference to enhance the knowledge, skills and abilities of
professional staff, families, students with disabilities and other community
partners to promote the successful transition of youth with disabilities to postschool outcomes of employment; post-secondary education and training; and
healthy lifestyles, community participation and independent living.
 Kennedy Krieger’s Resource Finder, through support from OGCSHCN, hosts a
monthly Transition Lecture Series designed for YSHCN and their families and
providers that covers a wide range of topics important for transitioning youth.
Videotaped copies of the lectures are available for loan; copies are also available
at the Regional Resource Center for CSHCN located in Wicomico County on the
Eastern Shore.
 The OGCSHCN’s Regional Resource Coordinator attended regional meetings in
2007-08 with the middle and high school-based transition counselors and
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Maryland Community of Care Consortium for Children with Special Health Care Needs
www.marylandcoc.com
Background Brief Executive Summary
Adolescent Transition (Post Summit)
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presented information and resources in an effort to increase their understanding
of the health care transition process and how to better support youth and
families.
Kennedy Krieger’s Resource Finder and OGCSHCN have developed a one-page
educational sheet targeted at pediatricians that provides a brief overview of the
importance of health care transition, the steps they should take to facilitate the
process, and links to state and national resources. This sheet was disseminated
by mail to pediatricians and posted to relevant websites.
The Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger
Institute is initiating a Transition to Adult Health Care Self Advocacy Project. This
project will engage transition-age youth and their families in a year-long
collaborative process of training, education, and mentorship to facilitate planning
and movement through the health care transition process.
Health Care Financing
 The Employed Individuals with Disabilities program extends Medical Assistance
health benefits to working Marylanders with disabilities. This program allows
individuals with disabilities ages 18-64 to return to work and maintain health
benefits by paying a small fee.
 Children’s Medical Services, a program of the OGCSHCN, pays for specialty
care and related services for uninsured and underinsured youth with special
health care needs until they reach the age of 22 years, and until age 25 years in
special cases.
Direct Services
 The Johns Hopkins Hospital operates transition clinics for youth with sickle cell
disease and diabetes, supported by OGCSHCN
 The Johns Hopkins Department of Pediatrics, with support from OGCSHCN, has
initiated activities to increase focus on health care transition in the Harriet Lane
primary care clinic, including needs assessment and the training of an adolescent
transitions case manager to facilitate transition of youth with certain chronic
conditions from the Harriet Lane clinic to adult health care.
Data and Information
 The University of Maryland Department of Pediatrics has received a small grant
from the Thomas Wilson Foundation to compile information about available
health care transition resources and/or programs in Maryland and identify the
gaps in services.
Transition in Other Areas – What Are We Doing?
Leadership and Policy
 The Governor’s Interagency Transition Council for Youth with Disabilities (IATC)
is a legislatively mandated council whose purpose is to ensure effective
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Background Brief Executive Summary
Adolescent Transition (Post Summit)
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interagency planning and delivery of services for secondary students with
disabilities.
IATC and the Maryland Department of Disabilities partnered in 2007-08 for a
Resource Mapping Initiative to identify gaps and overlaps in transition services
for YSHCN, with a specific focus on employment and post-secondary education.
Based on the needs identified, five priority themes are guiding a strategic action
plan for improving transition services for YSHCN in Maryland:
o To expand the resources available that effectively educate youth,
families, professionals, and community members about transition roles,
responsibilities, services, and resources;
o To enhance and ensure effective linkages among youth, postsecondary
educational institutions, and adult service agencies;
o To regularly share, collect, report, and use data across agencies for
fiscal/resource development and program planning and improvement; and
o To individualize services and supports for youth with disabilities which
result in meaningful employment/careers and independent living.
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As noted above, the Forum for Youth Investment worked with Maryland’s Ready
by 21 Action Team in 2007 to develop Youth Ready by 21: A Five Year Action
Agenda for Maryland. The overall focus of the action agenda is to ensure that all
309,000 Marylanders ages 18-21 years old are ready for college, work, and life.
The 7 overarching goals of this agenda focus on:
o Making the case for investing in transition-aged youth;
o Support of competent, caring adults;
o Safe, stable housing;
o Accessible, affordable health care;
o Pathways to education and employment;
o Equal treatment in the social service and juvenile justice systems;
o Accountability.
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Maryland also has a number of youth councils including the legislatively
mandated Maryland Youth Council that advises the Children’s Cabinet, and
Youth MOVE, a statewide leadership organization for young people who are
consumers of mental health care.
Direct Services
 There are many agencies, organizations, and initiatives in Maryland that address
transition in education, employment, and independent living for youth with
disabilities and special health care needs. Some of the state agencies involved
most directly with oversight, administration, and/or provision of these transitionrelated services include:
o Maryland Department of Disabilities
o Maryland State Department of Education, Division of Rehabilitation
Services
o Maryland State Department of Education, Division of Special
Education/Early Intervention Services
o Maryland Department of Health and Mental Hygiene, Developmental
Disabilities Administration
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Maryland Community of Care Consortium for Children with Special Health Care Needs
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Background Brief Executive Summary
Adolescent Transition (Post Summit)
What Do We NOT Know About the Status of Health Care Transition in Maryland?
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How many CYSHCN are making “successful” health care transitions? What are
the most important factors related to this?
To what extent is health care transition for CYSHCN addressed by agencies and
organizations involved in transition planning for education, employment, and
independent living?
What are the current practices and beliefs of adult health care providers related
to health care transition for CYSHCN?
Do insurers perceive health care transition for CYSHCN as an important issue,
and are they doing anything to facilitate it?
From November 2008 CoC Summit
The current status of Transition to Adult Services in Maryland is characterized by
fractured activities with no common end. Despite the activities focused on
Transition in Maryland (see below), the state continues to lack a clearly defined,
comprehensive, coordinated, community based, culturally competent,
collaborative, youth/family centered system of care to facilitate success in
transition from pediatric- to adult-based health care. This issue is compounded
by the problem of this age group accessing their own health insurance.
Challenges/Barriers To Progress
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Youths participation in planning process
Lack of Training – Health Care Transition
Capacity and Location of HC Providers
Lack of Data
Demographics and #s of Youths
Raising Awareness of policy makers, educators. HC Providers, youths,
families, etc.
PR Campaign in HC Transition
Awareness for Youth in Self Advocacy
Resources
Strategies to Enhance Transition Services
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Maryland Community of Care Consortium for Children with Special Health Care Needs
www.marylandcoc.com
Background Brief Executive Summary
Adolescent Transition (Post Summit)
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PR Campaign for all related to CRT to increase awareness
Plan/guide for youth & family in health care decisions (Involve experts;
identify existing tools)
GIATC: bring legislative concept to council addressing insurance
(possibility summit executive Summary; MD Youth Council; CCRT
ID of Champion
Plan to collect data-(existing, identify gaps in data)
Youth Education–Taking Charge of own Health Care
Legal Component to assist Families in navigating transition
Steps to Complete Brief
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Include post secondary education data
Training Curriculum specific to providers eg. Education, health, medical
training, etc.
Information regarding SSI (data)
Mapping of agencies that address transition (public & private)
Method for Info Dissemination
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Maryland Community of Care Consortium for Children with Special Health Care Needs
www.marylandcoc.com