Recently,
I read two excellent blog entries written by mothers of children with autism
who explain the process involved in being named their children’s legal
guardians once they reach the age of eighteen.
Both mothers candidly describe the heartache they feel in taking legal
action to make sure they will be able to make critical decisions for their
children who cannot make those decisions for themselves. As Kim Stagliano
explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to
take away her rights as an adult so that we can make her medical, legal and
financial decisions because thanks to her autism, she is not able to make safe
choices for herself.”
Similarly,
Liz Becker shares her internal conflict about becoming her adult son’s guardian
in “Guardianship and Autism,” noting, “In order to become the legal guardian
and conservator for my autistic son, the court had to first find him
incompetent to manage his own affairs. It was (and still is) a very emotional
process. It is something that I had to choose to initiate because I knew Matt
needed me to do it--but that doesn’t mean I took it in stride. It literally
took years of thoughtful contemplation to even begin the legal process.”
Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”
Some
of these rights that can be restricted once a disabled adult is deemed
incapacitated or incompetent and requiring a legal guardian include the right
to obtain a driver’s license, the right to own property, and the right to
vote. If parents wish to have some
control over their disabled adult child’s affairs but not obtain guardianship,
they may have legal papers drawn naming them as health care representatives and/or
giving them power of attorney. In addition, Social Security may name a parent
as a representative payee to oversee the distribution of disability benefits;
similarly Medicaid may also name a parent to act as the adult child’s health
care advocate. However, at times the adult with a disability may be required to
sign his or her name on paperwork.
Although
Ed and I have discussed and debated the pros and cons, we have opted not to
seek legal guardianship of Alex at this point. Certainly, I respect the
decision of those who have sought legal guardianship of their adult children
and can imagine what a difficult decision that must be. When Alex was
hospitalized last spring, we realized for the first time that we could no
longer make some health care decisions for him since he was an adult.
Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s
health care representatives so that we could make decisions regarding his
medical care. I would recommend that parents of children with autism have this
paperwork in place and ready when they turn eighteen instead of being caught
unprepared in an emergency, as we were. We had assumed that as Alex’s parents,
we would be able to make medical decisions for him, but we were wrong. Now that
we have the legal papers naming us as Alex’s health care representatives, we
take copies with us to every medical appointment so that we can be directly
involved in Alex’s health care.
When
we were filling out the countless forms last spring to obtain disability
benefits for Alex, the question arose over and over as to whether we were
Alex’s legal guardians. I found this somewhat surprising because none of my
friends with adult children who have disabilities have sought legal
guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how
common parents having legal guardianship is for adult children with autism, and
she said that those whose parents could afford the legal fees typically
obtained guardianship. Since Social
Security has named me as Alex’s representative payee to oversee the spending of
his disability benefits, and Medicaid has approved me as his health care
representative, we don ‘t feel the need at this point to seek legal
guardianship. The government allows us to manage his finances and benefits, and
the health care representative legal papers permit us to make decisions
regarding his medical needs. For everything else, Alex is capable of signing
his illegible signature, and he seems proud that he can do that for himself.
With
the upcoming elections, Alex eagerly awaits his first time to vote for the
President. As he has in every election since he turned eighteen, Alex considers
the candidates and issues before making his decision and exercising his
Constitutional right to vote. Just as I have in the past, this year I will
again help him apply for an absentee ballot, for which he qualifies as a
disabled adult, and he will proudly mark his ballot at home. To think of
denying Alex his right as a citizen of the Unites States and his joy in
participating in one of the rites of adulthood reconfirms our decision not to
seek legal guardianship for him. In addition, the eternal optimist in me hopes
that someday he will be more independent and not need us to make decisions
for him. Relying on faith, we pray that having him declared incompetent will
never be necessary, and we know with God all things are possible, including
healing that would allow Alex to enjoy fully the freedom we cannot deny him at
this point.
“Rabbi,” His disciples asked Him, “why was this man born
blind? Was it because of his own sins or his parents’ sins?”
“It was not because of his sins or his parents’ sins, “
Jesus answered. “This happened so the
power of God could be seen in him.” John 9:2-3
