The decision to
pursue guardianship represents an intensely personal struggle and a
lot of soul searching. Typical teenagers seek a sense of
independence as a sign that they have reached adulthood. They make
decisions about clothes, friends, and what to do on a Saturday night
and many chafe against rules and restrictions. But what about you?
Coming of age for an individual with a severe intellectual,
emotional, or communication disability presents challenges to living
an independent life. If you have a severe disability, you may find
yourself struggling to understand the choices you have to make and
you may rely on your parents to make your decisions for you. Your
parents may have made most of your educational, financial, and health
decisions up until now, but once you turn 18, unless your parents
have pursued guardianship for you, professionals will expect you to
make these kinds of decisions.
Guardianship used to be the method used
to protect an individual's property. Conditions in state-run
facilities were often grossly negligent and did not provide any type
of quality care for those who lived under their care. Guardianship
over a person's estate came about in a time when people with
intellectual or other disabilities were considered incompetent
'imbeciles' (Hoyle and Harris, 1) who would only fritter their
property away. Today, in the absence of these deplorable conditions
and inhuman “insights” into the psyche of the individual with an
illness or disability, many view guardianship as a violation of the
civil rights of a person with a disability. While most parents
pursue guardianship out of love and a desire to protect their
children, individuals with guardians experience a loss of their legal
rights. If someone else has full guardianship over you, they have
the legal right to make ALL your decision for you, including what you
eat, what you wear, and when you brush your teeth. Under full
guardianship, you cannot make your own decisions about what where to
live, how to spend your money, or choose your own health care
options. The guardian will make these decisions for you. Most
often parents pursue guardianship wither when their child turns or
the parents are older and looking to place their son or daughter in a
group home or other type of state-run facility. Documents requiring
signatures at these times often push parents into making legal
decisions about their offspring's ability to make decisions. Parents
feel that guardianship is a way to protect their children, but in
truth, guardianship has taken away your legal rights to make
decisions. In some cases, guardianship remains appropriate, but
today parents may choose different options.
At least one year before turning 18,
the school district will notify you that you are reaching the age of
majority and will be signing your own IEP and other legal documents.
You will have the choice to make all your own decisions, share
decision-making with your parents, or to have your parents or legal
guardian make all your decisions for your IEP. If you choose the
third option and delegate all decision-making abilities to your
parents or guardians, you are giving up your legal right to make
decisions about your education and you should pursue guardianship.
You may, however, choose to share decisions with your family and
discuss what you think would make the best sense for you in your
educational setting. You will then be signing your own IEP, but you
would continue to have your family's support at your IEP meetings and
you could discuss your options with them.
When you leave school, you will have
income from a job or social security. You might want to have an
apartment with a friend and you will have medical co-pays and other
expenses. You may have a lot of questions about how to handle your
money. If you have a significant disability that affects your
ability to pay bills and handle your finances, you might find power
of attorney helpful. You can appoint your parents power of attorney
over your money or you may choose to have a joint checking and
savings account. Your parents could then make financial decisions
for you and assist with paying your bills while you retain the
ability to make other important decisions in your life. If you have
a psychiatric illness or an emotional disability, you may want to
have a power of attorney or an advanced directive should you become
unable to make informed decisions for you health-care needs.
Your family can help you become better
prepared to be your own self-advocate by letting you make decisions
about your clothes, what you eat, what time you go to bed, and other
countless daily decisions that most young adults make for themselves.
By giving you a say in small decisions, they are building up your
ability to make larger decisions and to practice self-determination.
This may also mean letting you fail once-in-a-while because not every
decision you make will be a good one. Everyone makes poor decisions
sometimes and you will be no exception. By allowing you to
experience the consequence of you actions, your parents are preparing
you for the challenges of independence.
Guardianship remains appropriate for
someone who cannot give their own opinion or make decisions about
their life even with the vast array of adaptive equipment available
today. Switches and communication devices make it easier for people
who have a difficult time communicating to make their wishes and
preferences known, but if an individual cannot make decisions known
to others even with such equipment, then guardianship may be
appropriate. Your parents might also want to pursue guardianship if
you are so oppositional that you would say “yes” when you really
mean “no.” Some individuals with mental illness or an emotional
or behavioral disorder may intentionally make poor choices because of
their illness. In such cases, these individuals require a guardian
to protect them from their own poor choices. However, the vast
majority of people with disabilities can make decisions with some
assistance or devices and require power of attorney in certain areas
of their lives to help them make appropriate decisions.
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Resources:
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Resources:
- Guardianship. Various articles discussing guardianship and alternatives. The ARC of San Juan County. Web 7 May, 2010. http://www.thearcthriftown.org/guardianship.html
- Guardianship. The Center for Self-Determination. Web. 7 May, 2010. http://www.centerforself-determination.comhttp://www.centerforself-determination.comhttp://www.centerforself-determination.comhttp://www.centerforself-determination.com /
- Alternatives to Guardianship Materials. The University of Montana Rural Institute. Alternatives to Guardianship Materials. Web 7 May 2010. http://ruralinstitute.umt.edu/transition/WebConf_materials.aspSources:Hoyle, Dohn and Harris, Kathleen. Rethinking Guardianship. 2001. Web 7 May 2010. http://www.thearcthriftown.org/guardianship.html
