Sunday, October 7, 2012

Parent or Guardian

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


K. C. Wells said...

It sounds like another well thought out decision, Pam. xoxoxo

Jim Reeve said...

That seems like an incredibly tough decision to make. My son is only 8, but we may have to do the same thing. We want him to go to college and have a family, but who knows. As a parent of a child with an ASD, we've learned to be ready for anything.

Goodasitgets said...

We will seek guardianship and appoint his siblings as those in conrol of his special needs trust upon our deaths, and also have secured guardians, not necessarily the siblings, to replace us at the time we pass away. We will listen to his input always, as much as he is able to give. We feel we are best suited to have his best interests first in decision making, rather than some unknown quantity.

Pam Byrne said...

Thanks, K.C. and Jim! Unfortunately, no children come with instruction manuals, but kids with autism come with a set of new questions to answer. As you said, Jim, we just always need to be ready for anything; I hope that your child continues to get better and better so that those decisions get easier and easier.
Take care,

Pam Byrne said...

Dear Goodasitgets,
Thank you for your note. I think you have wisely chosen what is best for your son and your family, and I completely respect your decision. At some point, we may also decide that guardianship is in Alex's best interests, but right now, we feel led by God to allow Alex to remain an emancipated adult.In the meantime, I pray that our sons and all children with autism will be healed so that they won't need care throughout their lives and that parents won't have to make such heart-wrenching decisions.

David Munson said...

Like what Jim said, that was a tough choice. I believe there is no definite right and wrong answer here, as cases vary from each other. Having said that, I think you made a decision that fits your situation, since Alex seems capable of making his own decisions. It shows how much you love him to be able to have the strength to give him his freedom. My thoughts are with you and Alex!

David Munson

Pam Byrne said...

Hi David,
Thank you for your kind comments and good wishes; I really appreciate your thoughtfulness. I agree that parents have to make the best decisions for their children, which is not always easy. While I understand the reasons behind guardianship, we believe that decision is not yet necessary for us. As long as we can guide and support Alex, we would like him to have as much freedom as he can handle. Besides, he likes being able to sign his paperwork (in his illegible way), and voting is a privilege he takes very seriously as he researches the candidates more than most voters do. Thanks again for your note.
Take care,