Part of my practice involves representing parents who are seeking guardianship of their disabled adult child. Parents have to consider whether their child will need a guardian after they become adults in the eyes of the law, which is at age 18.
Guardianship is not something that should be entered into lightly. Just like we used to routinely institutionalize people with intellectual disabilities, we used to automatically assign them legal guardians when they turned 18, with a knee-jerk assumption that they couldn’t make their own decisions.
Those days are gone. We now recognize that everyone should be allowed the ability to make their own choices, to the extent possible. Atul Gawande said, “The battle of being mortal is the battle to maintain the integrity of one’s life,” and this applies equally to the aged and the disabled.
Now we need to think seriously about whether guardianship is necessary. Sometimes the decision is easy: those of us who have children with significant intellectual impairments know that when our child becomes an adult, he or she will need to have a legal guardian appointed. My son Billy is a good example. He can’t speak or understand language beyond basic words, nor does he understand his options, so he needs someone to make decisions for him. We do our best to make sure the decisions are what he wants, although in Billy’s case it is a bit of a guessing game.
On the other end of the spectrum, sometimes it is clear that the child does not need a guardian. A person who is competent to make their own decisions, with help from others (just like the rest of us), should be able to do so. As a parent once said to me about her son on the spectrum, “He should be able to make his own mistakes, just like the rest of us.”
But in between these extremes, for children who are capable of understanding basic medical and educational issues, the question of guardianship can be quite difficult. What if an emergency comes up, and the child refuses to consent to surgery? Or what if someone tries to take advantage of her innocence and gullibility? We do not want to take a person’s rights away from them if there are better alternatives, and we want to do what we can to promote their independence, including learning how to make decisions, but we also want to keep them safe.
If the child seems like they may be fine without a guardian, but there are concerns, I might ask the parents whether they would be comfortable putting off the decision, and see how things go. There is no legal reason why the guardianship petition has to be filed at age 18. If there does come a time when it appears that guardianship is necessary, we can file then. But waiting has risks that need to be considered.
I also recommend that parents speak to the child’s clinicians about the issue. It is, after all, the clinicians (usually their medical doctor or psychologist) who will be signing the documents in support of guardianship. If they feel, after talking to you and your child, that the child doesn’t need it, that is important to know.
These in-between people may want to consider supported decision making (SDM) if and when it becomes legally enforceable in Massachusetts. SDM is an alternative to guardianship, where people use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions. For those who are working towards self-determination, this might be the way to go.
SDM is part of the national effort of guardianship reform, to move our society away from paternal protection of persons with cognitive disabilities, and instead provide assistance for the people who need it. In a supported decision making agreement, the decision-maker (the child) enters into an agreement with her supporters (e.g. family, friends, teachers or clinicians), to help the person make life decisions about where she wants to live and work, and with whom, and the services, supports, financial decisions, and medical care the person wants to receive.
The Arc of Massachusetts is advocating for a bill to make SDM agreements legally enforceable, and to require schools to tell parents about the SDM option. If the bill passes, doctors would be required to recognize the agreements, and would not be liable if they follow the decision made in accordance with the SDM agreement.
Until the bill is passed, you cannot rely on the enforceability of an SDM agreement, and guardianship might be necessary. But thinking through the SDM issues, and who are your child’s supporters, could be a useful exercise for everyone.
(I note that a Power of Attorney and Health Care Proxy are not substitutes for guardianship. Everyone over the age of 18 who is competent to sign a POA and HCP should do so. These documents come into play when a person is no longer competent to make decisions for themselves. The minute the person regains competency, the documents are moot, and the person is again in charge of their own life. In other words, a HCP and POA are helpful when a person loses competency, but not when they are the same as they were when they signed the documents. In addition, unlike guardianship, a HCP and POA can be revoked at any time, for any reason.)
Whether or not your child is under guardianship, the child should be allowed to participate in all decisions that affect him. It’s his life, after all.