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Adulthood

Adult with CHARGE shaking hands with another adultPlanning 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.

Transition to Adulthood

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:

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.
Office of Special Education and Rehabilitative Services (OSERS)

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.
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Life Care Planning

Government Funded Supports – eligibility based income for people with disabilities.
Medicaid
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.