The Breakthrough
Supported Decision Making – What’s Next for Michigan?
Written by DNWML Community Engagement Coordinator, Eliot Carter
Every day, people make all kinds of decisions. From the moment we wake up, many of us have to decide if we want to get out of bed or hit the “snooze” button one more time. Throughout the day, we decide what clothes to wear, what food to eat, and who we want to talk to. Some days we make big decisions, like deciding to take a new job or asking for someone’s hand in marriage. Sometimes we are forced to make difficult decisions, like whether to get surgery that would resolve a health problem but has a risk of creating other health issues.
When a person turns 18, they become legally responsible for deciding a lot more things about their life, but having a cognitive, intellectual, or developmental disability can make decision-making harder or overwhelming. It has become very common for people caring for adults with intellectual and developmental disabilities (I/DD) to seek guardianship. Guardianship is an arrangement where someone gains decision-making authority over another person that a court decides is incapable of making their own decisions. A guardian can keep someone from seeing the doctor of their choice, living more independently, getting married, and even voting in some states. It is hard to know exactly how many people have a court-appointed guardian but estimates range from 1.3 million to 1.5 million in the US (1). There is almost no data on the age, disability, race, ethnicity, or socio-economic status of people who are under guardianship (also called wards) or why they were placed under guardianship in the first place. But we do know that many parents of children with I/DD are told by their child’s school that they need to become their child’s guardian once they turn 18.
“Guardianship is not a good or bad thing,” says Jonathan Martinis, JD, author of various books and presentations on supported decision-making, “but it is a big thing, and we have to think about it. If we do it without thinking about it and we put it on someone who does not need it, we can make their lives worse instead of better.” One way he argues that guardianship can make one’s life worse is through what psychologists called “learned helplessness.” This means that if someone is told repeatedly that they cannot do something, they tend to believe that. Then, the person then tends to believe that they cannot do many other things, which lowers their self-esteem (2). Wards also lose what is often called the “dignity of risk,” or the ability to make choices even if they have negative results. This is important because we often learn the most important lessons from failures or the consequences of our actions. Some guardians may also exploit or abuse their wards by controlling them, stealing from them, or neglecting their needs. Many times, the guardian is a family member, but there are also public guardians and guardianship agencies who don’t know their wards very well. It can also be very hard to get out of a guardianship, even if you and your guardian agree it is not working for you anymore.
This is why advocates take two different approaches when it comes to securing the rights of people with I/DD. The first approach is to protect people who are under guardianship. These types of laws tell guardians to provide more information to the courts on things like why they are seeking guardianship and why they are making certain choices for their ward. This means the court will get more evidence when deciding whether to appoint a guardian and to approve major life changes for the ward. The Michigan legislature is considering many bills like this: a package of bills (HB 4632, 4634, and 4635) would create new requirements before a person can get guardianship over someone else. Another bill in the Senate (SB 0586) says that before a guardian can move their ward from their current living situation to another one (like a nursing home), a court must decide if that move would be in the best interest for the ward. Having these reports “on the record” could help an individual make a legal case for getting out of a guardianship arrangement. They also give a chance for a court to intervene if they think it’s harmful for the ward to be under the control of their guardian. All of these bills have support from both Michigan Republicans and Democrats.
The second approach is to promote alternatives to guardianship. One alternative is called Supported Decision Making (SDM). If a person uses SDM, that means that they have different people in their lives that can help them understand what their choices are, but the individual still has the power to make their own decisions. Most people already have experience with supported decision making in their own lives. For instance, a mechanic may tell you that you need work done on your car, but you talk to a family member with a lot of car knowledge to get their opinion before you make the decision on what to do. SDM is like that, but it requires legal documentation of who your supporters are and what they help you with. Many states have passed laws that go into detail about what SDM is and how it can be an alternative to guardianship for people with I/DD or cognitive disabilities. The Michigan legislature is now considering two bills (HB 4676 and 4677) that would do that, which would make it much easier to get a SDM arrangement approved by a court. The first person to do so in Michigan is Linda Vanwormer, who won her case in 2023 (3).
Michigan is one of 11 states that has not passed some type of legislation promoting SDM. Other states have enacted laws that require schools to discuss SDM as part of future planning for students with disabilities; some have laws stating SDM can be a reasonable accommodation for a person with a disability when making healthcare decisions (4). The bills that Michigan is considering can pave the way for more laws promoting alternatives to guardianship. Remember that this is a state-level issue, so be sure to contact your state-level representatives and senators if you want to advocate for this issue! Find your state representative here and your state senator here. Staff at DNWML can also answer your questions about alternatives to guardianship.
Thank you for reading! This is the first blog post I have made that is about Michigan legislation and not a federal-level issue. One reason for this is that as of writing this, the federal government is still shut down, but that could change by the time this comes out. I am also preparing for the Disability Town Hall: Your Benefits, Your Future. DNWML staff will present what we know currently about the new federal budget and what impacts it will have on our community. This event will happen on November 12 from 5:00-6:30 pm. Sign up here to attend virtually or in person: https://tinyurl.com/DNtownhall
2 https://drri.org/supported-decision-making/