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Adult with CHARGE shaking hands with another adult

Transition to Adulthood

Planning for adulthood is an exciting time in a young person’s life.  When that young person has CHARGE syndrome, extra care and thought must go into the process as families move from entitlement based services to eligibility based services. Planning is crucial to obtain the necessary supports for independent living, employment, medical care, continuing education, recreation and social needs.


Peer Support Group

The CHARGE Syndrome Foundation is excited to partner with Helen Keller National Center to offer Peer Support Groups for individuals with CHARGE syndrome ages 18+.  At this time, the pilot program is for the USA only.  We often wonder if others have the same interests, thoughts and fears. This is a group to connect with your peers and learn tips, strategies and gain support from each other. 

The group will be using a Zoom format and will be inclusive of all communication modalities. It will run for 8 weeks with a limit of 8 members. Sign ups have closed. Check back for future opportunities. For questions email sheri@chargesyndrome.org

Transition Planning

Transition planning with your child’s education team should start no later than age 16 and an Individualized Transition Plan (ITP) should accompany a student’s Individualized Education Plan (IEP). Information about Best Practices in Transition Planning are can be found at the following websites:

Got Transition – Aims to help youth and young adults move from pediatric to adult health care.

National Center on Deaf-Blindness (NCDB) – This group invites you to share in the national efforts developing to improve transition results for youth who are deaf-blind.

National Deaf Center on Postsecondary OutcomesAs deaf people leave high school and prepare for college or careers, the National Deaf Center wants them to succeed. 

Office of Special Education and Rehabilitative Services (OSERS)

READY Tool: Readiness Evaluation of Transition to Adulthood for Deaf-Blind Youth (available in both English and En Español) – A tool to help a transition team, which includes an individual who is deaf-blind, parents and professionals, to determine essential activities during the transition process.

A Transition Guide to Postsecondary Education and Employment For Students and Youth With Disabilities – Office of Special Education and Rehabilitation Services, US Department of Education

Person Centered Planning
Person Centered Transition Planning Webcast – from the Perkins School for the Blind
MAPs (Making Action Plans)

Legal Aspects of Transitioning
Wrightslaw – Peter and Pam Wright are special needs attorneys and share information on legal issues pertaining to special education.
Individuals with Disabilities Education Act (IDEA) – Secondary Transition
Transition Strand – 10th International CHARGE Syndrome Conference Saturday July 30, 2011

Sexuality Issues
Strategies for Minimizing the Risk of Sexual Abuse – Fact Sheet by Maurice Belote, California Deaf-Blind Services Project Coordinator
Kasee Stratton, Ph.D. presents on Sexuality Issues for Children and Adolescents with CHARGE on Friday July 26, 2013 at the 11th International CHARGE Syndrome Conference.

Hey, I reached adulthood, now what?
Adults who have CHARGE syndrome talking about school, job, living, and independence by Claudia Junghans & Rob Last
CHARGE Syndrom e.V.
CHARGE Syndrome Association of Australasia Ltd


Life Care Planning

Government Funded Supports – eligibility based income for people with disabilities.
Supplemental Security Income (SSI)
Social Security: Benefits for Children with Disabilities
Special Needs Trusts: Breakout Session 3 from Friday July 24, 2009 at the 9th International CHARGE Syndrome Conference – Brian Ruben: SPECIAL NEEDS FUTURE PLANNING: Trusts, Government Benefits, Guardianship, etc.
Planning for the Future, Part 1 and Part 2 presented by: Brian and Benjamin Rubin on Friday July 31, 2015 at the 12th International CHARGE Syndrome Conference
Special Needs Alliance: A national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them.
Frequently Asked Questions

College Planning/Financial Aid

Financial Aid Information for Individuals with Disabilities – Listing of scholarships and eligibility requirements for individuals with disabilities in the US and Canada.

Best Colleges – Financial Aid Opportunities for Students with Disabilities

Independent Living and Housing Options

Training: Adults with CHARGE syndrome and/or deaf-blindness may need special training to live as independently as possible.

Helen Keller National Center (HKNC) and Regional Offices: For Deaf-Blind Youth and Adults. Giving people who are deaf-blind the tools to live, work and thrive in the communities of their choice.

Transition To Independent Living: Tim Hartshorne, PhD and Nancy Salem – Hartshorne, PhD present a breakout session on Friday July 29, 2011 at the 10th International CHARGE Syndrome Conference

No More Confusion about the Transition to Adult Services: Beth Jordan, M.Ed., CRC presents a breakout session on Saturday July 30, 2011 at the 10th International CHARGE Syndrome Conference and outlines support services, employment and housing options.