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Greek philosopher and author Aristotle maintained, “The roots of education are bitter, but the fruit is sweet.”

No greater sweetness could be harvested as when a good education helps a disabled child. Still, every parent worries about the expense of having a disabled child.

Access to a Federal Reserve Bank vault would help. Otherwise, there are sources for education, financing special equipment, medical needs, tax issues, and Medicaid.

Fulfilling lives  
The belief at Ken-Crest Centers, in Plymouth Meeting, Penn., is upbeat: “By working closely with representatives from selected adult service provider agencies, you and your young adult child can fulfill dreams of work, continuing education, housing, recreation, health, and financial security.”

Jennifer Graham of Collegeville, Penn., developed—in response to special needs of her son—TransitionMap as a “roadmap from school to the future for students 14 to 21 with developmental delay residing and receiving special education services.”

She asserts that estate planning for families with a developmentally disabled child “must be done carefully. Seek a professional financial planner who’s knowledgeable about the legal issues of accumulating financial assets by an adult with a disability.”

Such a person “may be disqualified from needs-based government funding programs if he/she has financial assets of more than $2,000 in his/her name, including life insurance policies. Ask about informal estate planning, formal estate planning, planning for assets of the disabled person, letter of intent, life planning notebook, and planning for individuals with autism.

Significant change
Graham observes, “This is the best-educated generation of teenagers with special needs to grow up in America, (with) more inclusive social and educational opportunities. They’re confident they’ll reside, work, and enjoy social lives in their community. But the transition from school to adult life is a winding road many families with a child with a disability find difficult to navigate.

Where do you go?
Graham says under the Individuals with Disabilities Education Improvement Act (IDEIA), “one significant change is the recommendation that transition planning begin by age 16 rather than 14. Experts say best practice is to begin planning by 14.”

Personal goals

These are discussion points for an effective plan in early transition years:

• What work your teenager wants to do
• Transportation to and from work
• Where your adult child wants to live
• Social activities he/she enjoys
• Need for specialized medical care and assistive technology
• Guardianship, power of attorney, executor of your estate
• Special Needs Trust funding
• Individualized Educations Plan (IEP) should be planned around student's abilities and personal goals
• Student should have a voice in every IEP
• Include representatives from mental retardation, vocational rehabilitation, and adult provider agencies
• Identify who will supervise work, teach job skills
• Include timeline of progress reports and who will write them
• Specify that all work experiences are recorded with date, responsibilities, supervisor’s name, and performance reports
• When appropriate, ask for a letter of reference

These funders give grants or loans for equipment to individuals with disabilities:

• GiveTech
• Muscular Dystrophy Assn/ Equipment Loan Program
• National Organization Caring for Kids
• SHARE Foundation Inc.
• Travis Roy Foundation

Graham says the transition IEP team should build collaborations with employer, adult services agencies, community, colleges or vocational schools, physicians/healthcare providers with experience in treating specific disability in adults, recreation and fitness organizations for adults, and local self-advocacy groups.

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy.