parents have fears for the future of their child with special needs.Families wonder if their child will be able
to take care of themselves, including making medical and other life decisions.
Is Guardianship the Best Choice?
may not realize that once their child is 18 (or the age of an adult under their
state law), they get to make educational and medical decisions on their,
regardless of their disability.Because
families may have questions about their young adult’s capacity to make their
own decisions, or because a professional may encourage them to do so, they may
consider going through a legal process to have a court declare the adult with a
disability not competent to make decisions and give “legal guardianship” to
their parent(s).Many individuals with
disabilities, and a growing number of parents, now see this as a civil rights
issue, as it essentially takes away the ability of the person with a disability
to decide about their own life.While in
many states there is the ability to apply for “limited guardianship,” there are
also other options that avoid the need for guardianship and maintain the civil
rights of the adult with special needs.
Alternatives to Guardianship
many tools other than guardianship that parents can use to participate in
decision-making on behalf of their young adult with special needs while still
maintaining the civil rights of the adult.For example, parents can use a “power of attorney” or even a form signed
by their young adult authorizing them to participate in and/or make decisions
for their young adult (see Resources and Forms below.)There is an excellent guide for self-advocates,
Advocacy Guide to Guardianship” (see chapter 2) from Disability
Rights Idaho, available at http://www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf.
note: This information was current at the
time of publication. But medical information is always changing, and some
information given here may be out of date. For regularly updated information on
a variety of health topics, please visit familydoctor.org,
the AAFP patient education Web site.
Parent Training and Information Centers
PTIs help families with many issues, including transition to adult
life.Transition is more than
school-to-work and also includes adult healthcare, post-secondary education,
and self-advocacy.PTIs can be found at http://www.parentcenterhub.org/find-your-center/