Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
Objective:
 Overview of transition
o Educational—school transition, post-secondary education
o Guardianship
o Wills/trusts
o Adult services
o Healthcare
 Special needs youth: ASD
 Resources
I.
Transition Process—educational
Transition planning supported under the IDEIA of 2004—identifies specific transition requirements and provides
guidance for students from age 16 (many states begin by age 14).
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Needs to Begin EARLY—assess student career interests/needs/strengths, goals,
Student centered—ideally student run!
Assessment (goals, needs, strengths)
Planning and realistic measurable goals.
Training and community experiences*
Linkage with adult services
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Vocational /Employment: (Vocational Rehab—eval, placement, training; paid, supported
(specialized placement, on the job training, long term support), or competitive employment
(minimum wage)
Developmental services;
Living/being part of a household: (independent, in-home support, supported living, family care,
residential)
Social/Community :
Summary of Performance to students after graduation or who have aged out—academic
achievement and functional performance with recommendations regarding supports that
might be helpful in post-secondary settings.
Post secondary education—more options and opportunities for youth with disabilities.
Vermont Family Network www.vermontfamilynetwork.org
NH Family Voices www.nhfv.org
Maine Parent Federation www.mpf.org
Vocational Rehab agencies in each state
Vermont Student Assistance Corporation
New Hampshire Higher Education Assistance Foundation (NHHEAF)
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
II.
Transition: SSI/SSDI
SSI—Supplemental security Income, monthly cash benefit for eligible individuals with disabilities.
Automatic eligibility for Medicaid
Eligibility based on: monthly income (parent income counted up to age 18) and resource limit AND
disability as defined by social security rules
SSDI
III.
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IV.
Transition: Wills/trusts and Guardianship
Register males for draft at age 18
Pros-cons of guardianship—at 18, parents no longer have legal right to make decisions on behalf of the child
unless a family member has filed with the courts for right of guardianship.
o Full guardianship
o Alternatives to consider FIRST:
 Power of Attorney to assist with certain affairs (health, finances,etc)
 Health Care Agent
 Voluntary guardianship
 Limited involuntary guardianship (in areas where individual needs assistance—e.g finances.
Trusts and wills that leave assets to individuals will affect eligibility status for local, state, and federal programs
Special Needs trusts/supplemental needs trust--funds or other assets for an individual with a disability while
protecting government benefits. Assets placed in a properly drafted SNT are not counted as resources for
SSI/Medicaid.
o “B” trust—funded by someone other than the beneficiary.
o “A” trust—funded by beneficiary’s own funds (e.g. settlement/inheritance). State is first payee after
beneficiary’s death
Transition: Adult services
Key is the difference between ENTITLEMENT under IDEA VS ELIGIBILITY for adult services.
 Employment
o www.fctd.info (Family Center on Technology and Disability)
o Vocational Rehab
V.
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Living/housing VCIL.org
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Self Advocacy and Support—developmental services
Transition: health care
Start early!
• Childhood: start teaching advocacy and self-care skills
• Pre-teen and teen: increased involvement in own healthcare and planning
• 21 years: transition to adult care
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
“toolkits” available
http://www.mahec.net/media/brochures/Healthcare_providers_guide.pdf **
Transition planning toolkit with planning guideline, timeline, transition readiness/assessment for
both youth and parents, medical summary sample, etc.
Biggest barriers:
Not a lot of data on best practice. New AAP statement/guideline imminent.
Finding adult physicians/specialists***
?IDEAS
 Period of co-management
 Consultation PRE/POST
 List of identified preferred adult PCPs; cultivated relationships/collaboration
 Portable medical record/summary
 Care coordination
 Other……
Letting go
Insurance
“Culture Shock”
Benefits:
VI.
attention to adult diseases
Chronic care models/experience
Sexuality/fertility issues
Focus on self management/responsibility
Adult “medical home” model /PCC
Unique challenges for youth with ASD:
Employment:
Key time is transition period after HS/education---.
The lack of social skills and social understanding has been cited as a primary cause of unemployment or underemployment for many otherwise skilled individuals on the autism spectrum.
Community Integration:
In teens, social difference gap often widens.
Friendships and relationships limited, no matter where on the spectrum.
Family/parent stress: Increased care-giving demands increased stress/depression in parents of youth with ASD.
Improved benefit when child with ASD lived away from home—increased community participation, independent
functioning, and interpersonal behavior.
Supports: careful transition planning, community experience, teaching life skills, disclosure, ongoing supports/coaches.
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
RESOURCES:
General:
Vermont Family Network www.vermontfamilynetwork.org staff at VFN talk with families about educational
concerns, SSI, VocRehab, VCIL, college programs and supports, guardianship, health insurance, community
inclusion, etc
NH Family Voices www.nhfv.org
Maine Parent Federation www.mpf.org
http://web.syntiro.org/hrtw//?n=hrtw/ Healthy and Ready To Work National Resource Center Website—
Initiative of the MCH bureau. Project has ended but resources remain updated on the website. Many other
sites reference the HRTW resources. Contains information, downloadable files, and numerous links to other
resources related to systems and services, youth involvement, health care access and funding, education,
employment, recreation, and independence
www.medicalhomeinfo.org American Academy of Pediatrics website offers a variety of information for
providers including resources on CPT codes to use when caring for children and youth with special health care
needs, the Medical Home Training Module, and AAPs Medical Home Policy and description. Has state pages of
resources at http://www.medicalhomeinfo.org/states/index.html
http://depts.washington.edu/healthtr Materials from the University of Washington Adolescent Health Project
– suggestions for families to prepare their children for independence to greatest extent possible; Adolescent
Autonomy Checklist is downloadable and printable
http://www.iod.unh.edu/Projects/fctp/project_staff_contacts.aspx UNH Center on Disabilities: Search
“Transition”.
Health care:
** http://www.mahec.net/media/brochures/Healthcare_providers_guide.pdf **
Health Care Transition: A Health Care Provider's Guide to Helping Youth Transition from Pediatric to Adult
Health Care (No. Carolina) Carolina Health and Transitions (CHAT). This is a wonderful, comprehensive look at
transition for clinicians….
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
Education:
http://education.vermont.gov/new/html/pgm_sped/policy/transition.html#additional Vermont Dept of
Education secondary transition planning resources
http://www.ncset.org and www.pacer.org (health and disabilities) National Center on Secondary Education and
Transition (NCSET)
www.nsttac.org National Technical Assistance and Dissemination Center—support and information on
transition planning. Has NSTTAC Indicator 13 checklist form A and B—assists states in addressing the quality of
IEP indicators. Can also be useful for parents (high literacy level) to help assess and guide the IEP process in
terms of assessment, curriculum planning, and meaningful goals.
www.fctd.info Family Center on Technology and Disability: Family Information Guide to Assistive Technology
and Transition Planning
http://www.ed.gov Education and IDEA
www.nsttac.org National Secondary Transition Technical Assistance Center website with materials to assist
teachers, parents, and students regarding effective transition education and services.
Autism specific Transition topics:
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http://www.researchautism.org/resources/reading/documents/TransitionGuide.pdf Life Journey Through
Autism: A Guide for Transition to Adulthood by DANYA International, OAR, and SARRC, 2006 from
www.researchautism.org (other resources on site as well). Nice discussion on specific skill building (advocacy,
goal setting, life skills, etc)
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Autism Speaks Family Services Transition Tool Kit www.AutismSpeaks.org or email:
TransitionToolKit@AustismSpeaks.org
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Transition to Adult Health Care: A Training Guide in Three Parts (Wisconsin):
http://www.waisman.wisc.edu/wrc/pub.html
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Life Plan Instruments:
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http://teacch.com/about-autism/a-familys-reference-guide-to-services-for-youth-and-young-adults-withautism. A Family’s Reference Guide to Services for Youth and Young Adults with Autism, The Chapel Hill
TEACCH center. Online guide focused on NC services BUT with excellent appendices addressing specific
information on federal agencies, transition planning, setting goals, job ideas for youth with ASD, developing self
advocacy skills, pros/cons of “when and if to disclose”, reasonable job accommodations.
www.autism-info.com/lyfplntr.htm
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
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http://www.ocali.org/view.php?nav_id=5 OR www.ocali.org/transition
Ohio Center for Autism and Low Incidence (OCALI)—several tools related to Autism and transition, including a
set of Autism Transition to Adulthood Guidelines, and 16 webcasts that focus on adult issues.
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JAN (Job Accommodation Network) Accommodation and Compliance Series: Employees with Asperger
Syndrome. Askjan.org They are also available to respond to other disabilities and/or individual situations.
Other:
www.disabilityinfo.gov Website of the federal government that is a starting point for all government services and
information sites.
www.doleta.gov/youth_services/ and www.studentjobs.gov Department of Labor’s Employment and Training
Administration website with information on work and preparing for work.
www.ncwd-youth.info NCWD/Youth -- source for information about employment and youth with disabilities. Experts
in disability, education, employment, and workforce development …
www.socialsecurity.gov Social Security Administration information and calculators
www.nichcy.org National Dissemination Center for Children with Disabilities has teaching materials on transition;
state pages of resources at http://www.nichcy.org/states.htm
http://www.dol.gov Department of Labor Information and programs
Special thanks to the following people who provided information and resources,
Jan Hancock
Family Support Consultant
Ph: 1-802-876-5315, ext. 215
1-800-800-4005
Fax: 1-802-876-6291
VermontFamilyNetwork.org
Katy Chaffee
Vermont School Transition Specialist
Agency of Human Services--VocRehab
802 281-5045
Clair Bruno
Education Consultant
Vermont Dept of Education
120 State Street
Montpelier, VT 05620
802 828-5116
claire.bruno@state.vt.us
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD
References:
(2007). Rehabilitation of individuals with autism spectrum disorders (Institute on Rehabilitation Issues
Monograph No. 32). D. Dew and G. Alan. Washington DC, George Washington University.
(2011). A Family's Reference Guide to Services For Youth and Young Adults with Autism. Chapel Hill
TEACCH Center
AAP, AAFP, et al. (2002). "A Consensus Statement on Health Care Transitions for Young Adults with
Special Health Care Needs." Pediatrics 110: 1304-1306.
Brin, A., MSN, MA, PCNS-BC (2008). American Academy of Pediatrics: The state of Transitions: 60.
Fuller, C. and M. Rosenshein (2008). "Autism transition to Adulthood Guidelines." Retrieved May 5,
2011, 2011.
Hendricks, D. R. and P. Wehman (June 2009). "Transition from School to Adulthood for Youth with
Autism Spectrum Disorders
Review and Recommendations." Focus on Autism and Other Developmental Disabilities 24(2): 77-88.
Lotstein, DS, Ghandour R, Cash, A, McGuire, E, Strickland, B, Newacheck, P. (2009) “plannging for
Health Care Transitions: Results From the 2005-2006 national Survey of Children with Special
Health Care Needs. Pediatrics 123: e145-e152.
McManus, M., H. Fox, et al. (October 2008). Pediatric Perspectives and Practices on Transitioning
Adolescents with Special Needs to Adult Health Care. Fact sheet No. 6.
Scal, P. (2002). "Transition for Youth with Chronic Conditions: Primary Care Physicians'
Approaches." Pediatrics 110: 1315-1321.
Transition to Adult Care
NNERPA Spring meeting
May 13, 2011
Kim Aakre, MD