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Medical Home and Transitions
A medical home ensures continuity of care and successful transition
for youth with special health care needs (YSHCN)
Health and Transitions Snapshot
Transitions-focused Projects
New Resources
Websites/Organizations
What Does Health Have to Do With
Transitions?
Transition Realities
- 90% of YSHCN reach their 21st birthday.
- 45% of YSHCN lack access to a physician who is familiar
with their health condition.
- 30% of 18 to 24-year-olds lack a payment source for
needed health care.
- Many youth lack access to primary & specialty providers.
1
- Increase use of emergency system of care: 40% versus
25% of typical youth annually.
- There are fewer work opportunities, and many are fearful
of losing Medicaid eligibility.
- YSHCN are 3 times more likely to live on income under
$15,000. 2
What YSHCN Say
- 90% want to live and work independently.
- Many feel they are “treated like a child.”
- Many feel a loss of control.
- They feel they are not seen as unique individual, separate
from their condition.· Health care providers defer
to parent(s). 3
If children and youth do not maintain
optimal health:
- More emphasis on crisis and less on typical life, fun,
and activities
- More on living as a patient, less as a kid
- Missed school with interruptions in learning
- Functional declines leading to social isolation
Desired Outcomes
- Health Insurance - Provide youth with
special health care needs with accessible and affordable
health insurance coverage
- Medical Home - Assure that all youth
with special health care needs have medical homes responsive
to their needs 4
The physician's role throughout the
transition process is as a team leader. While he or she
cannot be the sole player throughout transitioning YSHCN,
the physician can be a teacher to assist the youth and family
in navigating the systems of care.
 Transition for Youth with Special Health Care Needs:
How Do We Get this Done? Richard C. Antonelli, MD, MS,
Medical Home Advisor
Healthy & Ready to Work National Resource Center;
Topical Call: May 7, 2008
Transitions-Focused Projects
JaxHATS Program in Florida provides Transitions Readiness Tool
The JaxHATS Program (Jacksonville Health and Transition
Services) is an initiative to provide a medical home to
young people (14-25 years old) with special health care
needs, and promote the successful and efficient transition
from pediatric care to adult-based health care services.
Based on their work, they have devloped the Transitions Readiness Tool and it is available in two versions. One version is a Client version that is used with youth who are expected to acquire the skills needed to independently manage their own condition and health care needs, to set educational and career goals and to live independently. The Caregiver version is for Caregivers or Parents and is used when the patient, due to developmental disabilities or cognitive deficits, will not be able to learn the skills needed to independently manage their condition, health needs etc. We have the patient or caregiver complete this self-assessment at intake and we then jointly formulate a plan of care with client, family and team members to promote skill development in needed areas. We then reassess in 6 months and again at one year.
JaxHATS representatives also discussed their work at the 2007 Pediatric Academic Society Conference, in a presentration entitled 'Assessment of Readiness for Health Care Transition in Adolescents'. This presentation outlines their reliability/validity testing.
JaxHATS is happy to share their tool with others, but asks that you contact them so that they can use the data for our ongoing research. Interested persons can contact Deborah Ducett, LCSW or Dr. David Wood, the Medical Director of JaxHATS. Dr. Wood can be reached at david.wood@jax.ufl.edu .
Deborah Ducett, LCSW
JaxHATS Transition Program Manager
655 West Eighth St. C-41
Jacksonville, FL 32209
Phone: 904-244-8437
Fax: 904-244-8455
deborah.ducett@jax.ufl.edu
National Governors Association's (NGA) Policy
Academy on Transitions:
"Improving Outcomes for Young Adults with Disabilities."
Organized by the U.S. Department of Health and Human Services Office on Disability (HHS), this initiative aims to improve services for young adults ages 14-30 to support their successful transition to maximum independence and reduce instances of institutionalization, incarceration, and homelessness. Six states are particants in this Academy (WA, MT, CO, FL, KS, CT), and while each will determine the most effective
strategies for it, given its specific challenges and opportunities,
all will be urged to:
- Develop clear goals and realistic strategies for making
both tangible short-term progress and key first steps
toward broader system change;
- Design a governance structure that drives implementation
of innovative strategies and ensures coordination across
all relevant agencies;
- Undertake service integration and coordination such
as mapping delivery systems, integrating case management,
coordinating funds, and implementing effective memoranda
of understanding among agencies; and
- Develop cross-system outcomes and performance measures
for the targeted population, including strategic data
collection and analysis techniques in order to determine
what strategies are successful and where change is required.
For a summary on the Academy click
here.
Contact:
Sarah Looney Oldmixon
Policy Analyst - Social, Economic, and Workforce Programs
National Governors Association Center for Best Practices
444 North Capitol Street NW, Suite 267
Washington, DC 20001
soldmixon@nga.org
202-624-7822
Program to Mainstream Students at College
The National Down Syndrome Society received a grant of $300,000 to enable two public colleges in New Jersey to develop models for cognitively disabled students on campus. The grant was split by the College of New Jersey, a four-year institution, and Mercer County Community College, both in the Trenton area. To learn more about this program read these articles: Just a Normal Girl and DREAM Program to Begin Second Year;
Welcomes Incoming Students/Families
The states included in the 5 partnerships include:
Maine, Minnesota, Pennsylvania, Utah and Washington.The
National Technical Assistance Center on Youth Transition
has posted the abstracts of these state projects at: ntacyt.fmhi.usf.edu/partnerships/index.htm
New Healthcare Transition Video from the Institute for Child Health Policy (ICHP) at the University of Florida.
The Institute for Child Health Policy at the University of Florida recently developed a video entitled “This Is Health Care Transition”. This video was developed with funding from Children’s Medical Services, Florida’s Title V CSHCN Program. The goal of the video is to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php
This video can be viewed as a streaming video, and can also be downloaded, and then shown to youth and families from a computer. ICHP has developed an online brochure that describes and provides access to all of their health care transition products. It is available at: http://hctransitions.ichp.ufl.edu/hct-promo/
Since You're Not A Kid Anymore: It's Time To Be More In Charge Of Your Health Care
The 31 page booklet, was developed by the Institute for Child Health Policy at the University of Florida with funding from Children's Medical Services, Florida's Title V CSHCN Program. This is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document.
The booklet is available, as a PDF at: http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
It’s Time To Transition! A Workbook for Young Adults,Their Families, and Their Medical Providers. Laura Pickler, MD, MPH
A workbook to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care.
http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf
Creating a Care Plan for your Child with Special Needs
The Center for Children with Special Needs has developed new forms to help families create care plans for their child with special needs. These forms were developed in collaboration with parents who have children with special needs. A care plan can help families share important information with others who take care of their child. A care plan is simply information written down on a piece of paper about how best to care for their child's health needs. A care plan is something that parents and their child's health care provider can develop together. Care plans can help families share important information in a consistent way with others who take care of their child. Three care plan forms: Getting to Know Me, What’s the Plan? and In Case of Emergency are available to download at: http://www.cshcn.org/resources/careplans.cfm
Promoting health care transitition planning for adolescents with special health care needs and disabilities. Betz, C.L. & Nehring, W.M. Brookes Publishing
This text is the first written on the topic; the authors hope this text provides useful information and resources to interdisciplinary and nursing colleagues to provide health transition planning to youth. To access the book via Brookes Publishing, visit: http://www.brookespublishing.com/store/books/betz-68608/index.htm
The Special Ed Advocate: Feature Issue on Transition (February 2007)
This issue of The Special Ed Advocate focuses on transition and provides timely resources and information. http://www.wrightslaw.com/nltr/07/nl.0213.htm
Best Practices Guide in Mentoring Youth with Disabilities
The resource is a disabilityinfo.gov guide on best practices and programs for mentoring young people with disabilities, as well as information on how mentoring programs can benefit youth with disabilities. To access this resource go to Youth Update: Best Practices Guide in Mentoring Youth with Disabilities
Web sites/Organizations
Access America for People with Disabilities:
www.disAbility.gov
Office of Disability Employment Policy created this site
to provide one-stop online access to resources, services,
and information available throughout the Federal government.
The Adolescent Health Transition Project: depts.washington.edu/healthtr/
A resource for adolescents with special health care needs,
chronic illnesses, physical or developmental disabilities
Administration on Developmental Disabilities: www.acf.dhhs.gov/programs/add/
The Administration on Developmental Disabilities ensures
that individuals with developmental disabilities and their
families participate in the design of and have access to
culturally competent services, supports, and other assistance
and opportunities that promotes independence, productivity,
and integration and inclusion into the community.
AHEAD, the Association on Higher Education and Disability:
www.ahead.org/
AHEAD addresses current and emerging issues with respect
to disability, education, and accessibility to achieve universal
access.
Bright Futures: brightfutures.aap.org/web/
Promoting and improving the health, education and well-being
of children and adolescents ages 0-21 and their families.
The overall goal of the AAP Bright Futures Education Center
is to revise Bright Futures: Guidelines for Health Supervision
of Infants, Children, and Adolescents and accompanying
materials, to develop new materials, and to promote implementation
efforts among health care professionals, public/private
partners with key child health constituencies, and communities
and families.
The Casey Family Programs www.caseylifeskills.org/
Offers free online assessment tools to measure a youth's
life skills such as the Ansell-Casey Life Skills Assessment
(ACLSA). The ACLSA is an evaluation of youth independent
living skills. It consists of statements about life skills
that the youth and his/her caregivers complete. Available
in Spanish.
Center for Disease Control, Disability and Health Branch:
www.cdc.gov/ncbddd/dh
Disability and Health supports several programs, projects,
and activities aimed at maintaining and improving the health
of families, adults, and children living with disabilities.
Centers for Independent Living: www.virtualcil.net/cils/
These Centers receive federal funding and are non-residential
offices located around a state that offer guidance and support
people with disabilities, fight for the rights of people
with disabilities, and offer training and information on
living independently in the community.
Center for Mental Health Services: www.mentalhealth.org/cmhs/
The goal of this system is to provide the treatment and
support services needed by adults with mental disorders
and children with serious emotional problems
Center for Workers with Disabilities:
www.aphsa.org/disabilities/
The Center for Workers with Disabilities is a technical
assistance center for states enhancing or developing employment
supports programs for working persons with disabilities;
most of the 30 plus states supported by the Center are supporting
employment supports development with Medicaid Infrastructure
Grant (MIG) funds established under the Ticket to Work and
Work Incentives Improvement Act of 1999 (P.L. 106-170).
Community-based waivers in your state: www.cms.hhs.gov/MedicaidStWaivProgDemoPGI
Home and Community-Based Services 1915(c) Waivers
Department of Justice ADA Home Page: www.usdoj.gov/crt/ada/adahom1.htm
Americans with Disabilities Act
Disability Preparedness Web Site: www.disabilitypreparedness.org
The National Center on Emergency Planning for People with
Disabilities is focused on helping ensure that all individuals
are included in the development of and inclusion in plans
for protection from both natural and man-made emergencies.
In almost all cases, emergency planning, including evacuations
and sheltering during natural disasters, attacks of terrorism,
industrial and highway accidents has not taken into consideration
the communication, transportation and medical needs of persons
with disabilities, and other special populations.
Education and IDEA: www.ed.gov
US Department of Education
Emerging Leaders emerging-leaders.com/
The Emerging Leaders program recognizes undergraduate and
graduate level college students with disabilities who possess
unique traits, and matches them with paid summer internships
at prominent corporations.
Family Voices: www.familyvoices.org
This site is where advocates of children with disabilities
join to offer stories, current events, links, and opportunities
for others to help.
GAPS: www.ama-assn.org/ama/pub/category/1980.html
GAPS is a comprehensive set of recommendations that provides
a framework for the organization and content of preventive
health services.
Health Care Transition Project: hctransitions.ichp.edu/
The Promising Practices in Health Care Transition Project
is a research and training activity of the Institute for
Child Health Policy (ICHP) at the University of Florida.
Health.Gov: www.health.gov
This is a portal to the web sites of a number of multi-agency
health initiatives and activities of the US Department of
Health and Human Services and other federal departments
and agencies.
Healthfinder: www.healthfinder.gov
Healthfinder is a free guide to reliable consumer health
and human services information, developed by the US Department
of Health and Human Services.
Healthy & Ready
to Work National Center (HRTW):
The mission of the HRTW National Center is to create changes
in policy, programs and practices that will help youth
with special health care needs transition to adult health
care with funding, work, and independence - raising expectations
and making change happen for YSHCN. A national focal point for the HRSA/MCHB’s HRTW
initiative the Center will advance the HP 2010 goal
of “improving the health and quality of life of
youth and young adults with disabilities and reduce
the disparities that exist for this population when
compared to youth and young adults in general.”
For more information on HRTW and for additional transition
resources and tools, click
here.
Housing and Urban Development (HUD)
www.hud.gov
Information on Section 8 housing for people with disabilities.
Inclusion Daily Express: www.inclusiondaily.com
Inclusion Daily Express is the worldwide E-mail news service
that reports on the exciting movement toward full community
inclusion, self-determination and disability rights.
The Inclusion Network: www.inclusion.org/
A nonprofit organization creating opportunities in Greater
Cincinnati so that citizens with disabilities can become
full participants
Inclusion Press: www.inclusion.com/
Inclusion Press is a small independent press striving to
produce readable, accessible, user-friendly books and resources
about full inclusion in school, work, and community.
Institute for Family-Centered Care: www.familycenteredcare.org
The Institute for Family-Centered Care, a nonprofit organization,
provides essential leadership to advance the understanding
and practice of family-centered care. This site shares information,
facilitates problem-solving and promotes dialogue among
individuals and organizations working toward family-centered
care.
Institute for Independent Living: www.independentliving.org
The Institute for Independent Living serves self-help
organizations of disabled people who work for equal opportunities,
self-determination and self-respect. They offer training
materials, technical assistance and information on personal
assistance, advocacy, access, legislation and peer support.
Internet Resources for Special Children: www.irsc.org
The IRSC is a nonprofit web site, which has been providing
parents, educators, medical professionals, and caregivers
with information regarding children with disabilities.
KASA - Kids As Self Advocates:
KASA is a national, grassroots network of youth with
special needs and friends, speaking on behalf of themselves.
They are leaders in communities, and help spread helpful,
positive information among peers to increase knowledge
around various issues. Those issues include: living
with special health care needs, health care transition
issues, education, employment, and many more. For more information on KASA, click
here.
Labor Information: www.dol.gov/dol/audience/aud-disability.htm
US Department of Labor - information and services the Department
of Labor (DOL) offers people with disabilities.
McGill University Health Centre, Located
in Montreal, Canada
www.muhc.ca/construction/documentation/ppg/18/#Transition
This report on the care of children and adolescents was
prepared by a multidisciplinary team of patients, community
representatives, doctors, nurses, and allied health professionals,
reflects the discussions during a series of seven meetings
held between November 1996 and April 1997.Twenty patient
services planning panels, each looking at different service
groupings, were created by the Patient Services Steering
Committee (PSSC) to provide the foundation for a consistent
and consolidated vision of the McGill University Health
Centre (MUHC). The process was structured to focus the recommendations
for service delivery on the needs of the patient and family.
National Adolescent Health Information Center
nahic.ucsf.edu/index.php/about/index/
The National Adolescent Health Information Center (NAHIC)
was established in 1993 with funding from the Maternal and
Child Health Bureau (MCHB) of the U.S. Department of Health
and Human Services. It is based within the University of
California, San Francisco’s Division of Adolescent
Medicine, Department of Pediatrics and Institute for Health
Policy Studies. The overall goal of NAHIC is to improve
the health of adolescents by serving as a national resource
for adolescent health information and research, and to assure
the integration, synthesis, coordination and dissemination
of adolescent health-related information.
The National Alliance for Secondary
Education and Transition (NASET)
www.nasetalliance.org/
A national voluntary coalition of more than 40 organizations
and advocacy groups representing special education, general
education, career and technical education, youth development,
multicultural perspectives, and parents.
The National Collaborative on Workforce
and Disability for Youth
www.ncwd-youth.info/index.html
NCWD/Youth is a group composed of partners with expertise
in disability, education, employment, and workforce development
policy and practice. NCWD/Youth, funded through the U.S.
Department of Labor's Office of Disability Employment Policy,
is charged with assisting state and local workforce development
systems to integrate youth with disabilities into their
service strategies.
Also available on the NCWD/Youth Web site are quick
reference guides for administers, youth service practitioners,
and policymakers. Topics include:
- Workplace success: The guide describes
how to create successful work-based experiences for youth
and their employers that foster adult employment success
for all youth, particularly for those with disabilities.
- Youth development and youth leadership for all
youth: The guide explains youth development and
leadership components and how they lead to more effective
workforce development programs.
- Assessment: The guide gives an overview
of the process of collecting information that can be used
in decision-making, career-planning, and service plan
development for a young person.
- Hidden Disabilities: The guide provides
a basic understanding of how to identify and screen for
hidden disabilities; connect to formal diagnosis; provide
appropriate accommodations; and identify support services.
- Benefits Planning for Youth with Disabilities:
The guide helps those assisting youth with disabilities
navigate the range of state and federal government programs
and benefits for people with disabilities in the United
States.
- Universal Access: The guide assists
those developing a program, service, or activity to make
them accessible to youth and adults with disabilities.
The National Collaborative on
Workforce and Disability for Youth
www.ncwd-youth.info/index.html
This is a group composed of partners with expertise in disability,
education, employment, and workforce development policy
and practice. NCWD/Youth, funded through the U.S. Department
of Labor's Office of Disability Employment Policy, is charged
with assisting state and local workforce development systems
to integrate youth with disabilities into their service
strategies.
National Center for the Study of Postsecondary Educational
Supports(NCSPES)
www.rrtc.hawaii.edu/
The Rehabilitation Research & Training Center at the
University of Hawai'i at Manoa.
The vision of the NCSPES is to move beyond what has and
has not worked in the past, toward a new system of educational
supports for people with disabilities in the 21st century.
Postsecondary programs of the future must foster high expectations,
build self-confidence, and develop an understanding of strengths
and weaknesses of all students.
National Center on Self-Determination:
www.self-determination.com/
The self-determination movement was founded on four basic
American principles: Freedom, authority, support, and responsibility.
National Information Center for Children and Youth with
Disabilities: www.nichcy.org
NICHCY is the national information and referral center that
provides information on disabilities and disability-related
issues for families, educators, and other professionals.
Our special focus is children and youth (birth to age 22).
Newmobility.com: www.Newmobility.com
T he Web site for New Mobility Magazine and the leading
online resource for disability culture and lifestyle. Newmobility.com
is a tremendous research and communication tool for anyone
with an interest in disability issues. And note that almost
all our site is accessible without having to log in.
The Office of Disability Employment Policy
www.dol.gov/odep/welcome.html
This is a new site that is from the Office of Disability
Policy at the US Department of Labor. This agency provides
national leadership and advocacy to increase employment
opportunities for adults and youth with disabilities.
PACER Center: www.pacer.org
The mission of PACER Center is to expand opportunities and
enhance the quality of life of children and young adults
with disabilities and their families, based on the concept
of parents helping parents.
President's Committee on Employment of People with Disabilities:
www.peo7.com/htmFiles/The49.htm
President's New Freedom Initiative
www.whitehouse.gov/news/freedominitiative/freedominitiative.html/
or www.dol.gov/odep/newfreedom/main.htm
President Bush's New Freedom Initiative-to consolidate resources
for people with disabilities and encourage integration into
all aspects of community and work life.
Scholarship Information: www.regis.edu/grants/scholar.htm
Starting your Scholarship Search
Social Security Administration: www.ssa.gov
The Official Web site of the Social Security Administration.
Social Security Office of Disability: www.ssa.gov/disability
Social Security Administration Office of Disability
Social Security Work Incentive Programs www.mchbhrtw.org/ssawork/
This site provides information, videos and web links for
people with disabilities on how you can go to work without
losing your SSI or SSDI benefits, and get rehabilitation
and vocational services.
Thomas - Legislative Information on the Internet: thomas.loc.gov
A Service Of The Library of Congress
Ticket to Work: cms.hhs.gov/default.asp?fromhcfadotgov=true
This landmark legislation modernizes the employment service
system for people with disabilities and makes it possible
for millions of Americans with disabilities to no longer
have to choose between taking a job and having health care.
Transition of Patients with Sickle Cell Disease from
Pediatric Disease to Adult Care:
sickle.bwh.harvard.edu/transition.HTML
People with sickle cell disease often need help and guidance
as they cross life's stream that separates childhood and
adulthood.
Transitionlink is an on-line community
for sharing ideas, strategies, resources, and information
concerning the transition to life after high school for
adolescents with disabilities. www.transitionlink.com/
US Department of Labor: www.onestoptoolkit.org
The Tools & Resources for Serving People with Disabilities
Web site provides individuals with disabilities, advocates,
parents, counselors, and other professionals with accessible
and comprehensive information that will help improve employment
outcomes for people with disabilities.
The Wisconsin Statewide
Transition Initiative (WSTI) www.wsti.org/about.cfm
A Department of Public Instruction (DPI) state
discretionary project that offers a comprehensive approach
to providing transition services in the State of Wisconsin.
Twelve CESA-based Transition Coordinators, a project director,
and a DPI Transition Consultant provide transition support
services, information dissemination, and staff development
to parents, education professionals, and community agency
professionals throughout Wisconsin.
Youthhood.org www.youthhood.org
Between childhood and adulthood, there's Youthhood, a new
online research-based transition curriculum for use by students,
parents, teachers and others who work with transition-aged
youth.
1. CHOICES Survey, 1997;
NOD/Harris Poll, 2000; KY TEACH, 2002
2. NOD/Harris Poll Survey, 2004
3. NYLN Survey 2002; Rosen DS. Grand Rounds:
all grown up and nowhere to go: transition from pediatric
to adult health care for adolescents with chronic conditions.
Presented at: Children’s Hospital of Philadelphia;
2003; Philadelphia, PA
4. The
HRTW National Center
Last Updated August 18, 2008
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