Future Planning for a Child
Taken from The Unplanned Journey: Part 5
When You Learn That Your Child Has a Disability
NICHCY News Digest Second Edition
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
- 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
Web site: http://www.nichcy.org/