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Special Education Articles: Parenting Articles: Future Planning for a Child With Disabilities

Future Planning for a Child With Disabilities
Taken from The Unplanned Journey: Part 5
When You Learn That Your Child Has a Disability

NICHCY News Digest Second Edition February 1997
Authors: Carole Brown, Samara Goodman, and Lisa Kupper

It is not possible for parents to imagine all the stops and detours that they will make as their unexpected journey takes them into the future. But you will probably be thinking at different times about what the future holds for your child. Advocates believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to encourage their child to develop as much independence as possible, given the nature and severity of the disability (Dickman, 1993).

Over the past 20 years, the options for children and adults with disabilities have greatly expanded. Schools have developed specialized educational techniques to promote learning and the acquisition of functional skills that will enable individuals with disabilities to have choices about where they live, work, and play, and who they have as friends. The movement to include individuals with disabilities in the mainstream of school life is growing, with significant pressure coming from parents. The premise behind inclusion is that individuals with disabilities should not be segregated but, rather, should have the same opportunities that individuals without disabilities have -- that is, the same opportunities to go to neighborhood schools, to be educated alongside their nondisabled peers, to participate as fully as possible in school activities. However, for inclusion to work, school systems must provide each student with supports appropriate to his or her needs. Support, training, and technical assistance also must be made available to teachers and to nondisabled peers. Therefore, it is important for parents to be aware of how inclusion decisions are made in regard to their child and to advocate for supports they feel their child, his or her teacher, and the peer group need in order for the inclusive setting to be a successful one.

Inclusion, however, means more than just including students with disabilities in mainstream school activities. Students will grow up, leave the school setting. What does the future hold for them as adults? This is, naturally, of great concern to parents, disability advocates, disability organizations, and persons with disabilities themselves. For far too long, students have exited the school years to an adult life that lacked opportunities for employment, further education, or community participation (McLaughlin, 1993). Now, with the help of federal legislation and the advocacy of many concerned parties, adult life for individuals with disabilities holds increasing promise. The Individuals with Disabilities Education Act (IDEA) now requires that school personnel, parents, and each student with disabilities (16 years of age or older, and, in many cases, younger) plan for the student's transition from school to post- school environments, including employment, additional education or training, independent living, and community participation (Wandry & Repetto, 1993). This legislation is intended to prepare youth with disabilities for the adult world and roles they will encounter upon leaving high school, with the purpose of maximizing their participation in the mainstream of society. Furthermore, the Americans with Disabilities Act (ADA) has incorporated into law provisions that guarantee many of inclusion's principles as individual rights. No longer may most child care centers refuse to serve children because they have a disability. No longer may a qualified individual be denied employment because he or she has a disability. Public accommodations must now be accessible to all individuals. Many states have been working actively to establish community- based supports so that individuals with disabilities can lead their lives as independently as possible.

Therefore, when you contemplate the future of your son or daughter with disabilities and develop goals for that child, it may be helpful to consider the following suggestions:

  • Ensure that your child has the opportunity to acquire skills now that will make him or her as independent as possible in the future.
  • Ensure that your child has opportunities to develop social skills that can be used in a variety of settings (regular classroom settings and exposure to many different environments are useful in this regard).
  • Write a will that will provide for your child's care and safeguard his or her eligibility for government benefits. (For more information about estate planning, request a copy of Estate Planning from NICHCY.) Some states now provide for self-sufficiency trusts which allow parents to leave money to a child with a disability without disqualifying that child (even of adult age) from government benefits. Other states require that a special needs trust be established.
  • Teach your child to be responsible for his or her own personal needs (e.g., self-care, household chores).
  • Work with the school and other agencies to ensure that transition planning for your son or daughter takes place and addresses training for future employment, coordination with adult service providers, investigating postsecondary education or training, and participation in community activities.

NICHCY News Digest Second Edition February 1997
Parenting a Child with Special Needs: A Guide to Readings and Resources

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285 (Voice/TT)
E-mail: nichcy@aed.org
Web site: http://www.nichcy.org/

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