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A useful tool for our young people with Down syndrome is
called Making Plans: A Financial Guide for People with Down Syndrome and their
Families. Published by NDSS, you can
obtain a copy by calling our office at 561-912-1231. We also have
Planning Ahead, published by the Florida Developmental Disabilities Council
which is a handbook for Parents, Family Members and Guardians of Individuals
with Developmental Disabilities. |
Quotes from local parents:
"It has been my experience that parents of
children with Down syndrome must hold high the expectations. The years-old
stereotypes of where our young people should work, what job they should have,
where they should live, and how they should access their community are still alive and
well."
"Don't rely on the school
district to inform you or your child about what should be in a Transition IEP or all the options for transition.
We have a long way to go in providing comprehensive transition
services. It is important that parents are familiar with the
law."
Students with developmental
disabilities such as Down syndrome can receive services funded by the school
district through age 22. This may mean graduating when all credits (24)
are accumulated and re-enrolling to obtain services related to job training and
life in the community. Some students will graduate and obtain transition
services such as job training and job coaching through adult service providers.
There remains a huge void in our community for addressing transition issues
relating to having a full life. The major emphasis by the school district seems to be on
employment without any real support for future living options, continued
academic education, social/recreational activities and transportation. It
is interesting to note that many students are "coddled" in special education
classes for most of their lives and then upon finishing school expected to
understand the rules and responsibilities associated with employment. This
is why people with Down syndrome remain unemployed or underemployed.
You need to understand what "age of majority" will
mean for your child and how this can impact the IEP process. Our
experience is such that the school district respects families and understands
that students with Down syndrome do rely on their parents for input in the
decision making process. Students become adults when they turn 18. (Guardianship) You should understand diploma options
as they relate to the curriculum your child will be exposed to, and to what
extent the curriculum relates to outcome choices. Many materials and much information are available about transition. For
information specific to Florida, the
Department of Education is a good source. The
Individuals with Disabilities Education Act
(IDEA) expects schools to prepare students
for employment and independent living. Below are links to websites and
phone numbers for agencies that have information about transition.
You should learn your child's rights regarding transition and the IEP
process.
Schools often do not know all there is to know about what should happen for your
child in regard to transition planning. The IEP guides the process to
some extent and you should be taking full advantage of the law, beginning with a
Transition IEP at age 16. Be sure that the goals you and your child
have are stated clearly and correctly on the IEP, academic and/or vocational.
Remember that the I in IEP still stands for individual and as long as your child
has an IEP it should be individualized. It should not be based on
curriculum and therefore look like everybody else's in the class.
It is extremely important to have goals and desired outcomes that you can
clearly visualize. Although the idea itself seems abstract, the fact is
that you cannot obtain an outcome that you cannot see. You must be able to
articulate what the future should look like for your child. Once your child
turns 14 you are on the downhill slope toward life in the community. You must
know what you expect and hope your child's level of participation in his or her
community will be. If your child with Down syndrome has not applied for
the Medicaid Waiver...do that now! You cannot expect, at school exit, to have available the
services he or she will need to access life in the community without the waiver.
Need more information? If
you would like to come in and meet with someone from our organization to discuss
the Transition process for your son or daughter, please contact our office at
561-912-1231.
To apply for the Medicaid Waiver
call APD (Agency for Persons with Disabilities) at 561-837-5564.
Young adults with Down syndrome
who are 18 years old are eligible to apply for
SSI - Supplemental Security Income
as a family of one.
Partners in Transition,
Florida
Developmental Disabilities Council 1-800-580-7801
The Transition
Center at the University of Florida
The Advocacy Center,
Tallahassee 1-800-342-0823
National Center on Secondary
Education and Transition
Disability Law
Transcen, Inc.
Florida Division of
Vocational Rehabilitation Tallahassee 1-800-451-4327
Training Resource Network
Gulfstream Goodwill Industries West Palm Beach 561-848-7200
Coalition for Independent
Living Options West Palm Beach 561-966-4288
The Arc West Palm Beach 561-842-3213
Minnesota Governor's Council
on Developmental Disabilities
PEAK Parent Center
Family Network on
Disabilities of Florida TILES Project 1-800-TALK PEN
Center on Human Policy, Syracuse University
The Pacer Center
The Transition
Coalition
Institute on
Community Integration
The Able Trust
National Collaborative on Workforce and Disability - for Youth
AHEAD-The Association on Higher
Education and Disability
Heath Resource Center
Adolescent
Health Transition Project
National Council on Disability
Youthhood
National Secondary Transition Technical Assistance Center
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