There are times when we get calls at Disability Network Lakeshore (DNL) asking what can be done to help children with developmental disabilities who want to be more independent. There are similar calls from adult children asking about a parent that has been admitted to a nursing facility. The children have been told their mother or father must have a guardian. In many instances, this may be the first time that a parent has thought about how their child will manage on his or her own, or an adult child has considered who will make decisions for mom or dad when they are no longer able to make decisions for themselves. Many people are not sure what options there are other than guardianship or even if other options exist.
Most of us would agree that a person who is capable of understanding the pros and the cons of an issue should be allowed to decide what is right for him- or herself. However, the issue gets cloudy when there are questions over whether that individual really understands the risks and benefits of a course of action, especially when the choice doesn’t match what most people think is the right decision.
A person who is assigned a guardian by Probate Court is called the “ward.” Guardianship removes many of a ward’s civil rights and gives them to the guardian. The guardian can then decide where the ward will live, the kind of medical care s/he will receive, what activities the ward can take part in, where his/her money is spent, who s/he can see, what s/he can do, etc. Guardianship, while it may be necessary for individuals who are incapable of understanding what’s happening, strips rights from an individual. The guardian has the final say in what happens.
Many people believe that guardianship is a way to protect their loved one, but people with guardians can still be abused. Indeed, all too often the guardian has no idea of what the ward’s preferences are, and sometimes the person who is appointed guardian has never met the ward. Fortunately, guardianship is not the only way to meet the challenges of decision-making for people with disabilities. Supported decision-making is a growing best practice that allows those with cognitive disabilities to live as independently as possible.
Although there is no legislation in Michigan regarding supported decision-making, it is a practice that is gaining popularity across America and is considered to be the gold standard for the continued independence of those with cognitive disabilities. With supported decision-making, family, friends, and professionals who care about the individual become part of a support team, explaining decisions in understandable terms, researching various options, and even attending appointments with them to help interpret what is being said. The decision-maker makes decisions with guidance from the group, but has the final say in what is happening. It does not strip an individual’s rights away but allows those who are interested and care about the decision-maker to be a part of a supportive team that helps him or her understand an issue before deciding anything.
In plain terms, supported decision-making is about help, not control. It works best when the person making the decision is included from the start. That person can ask questions, say what matters most, and choose who they trust to help. The support team can help break down hard words, compare choices, and think through what may happen next. That can be useful for many parts of life, like where to live, how to get to work, what doctor to see, what services to use, and how to stay connected with friends, family, faith, and community.
There is nothing, including guardianship, that will ensure the complete safety of an individual. Any of us can make an unwise decision. But supported decision-making allows a person to retain the dignity of choice, and the chance to succeed or to fail and learn from that failure. It allows those who need assistance in making decisions to get that help without losing all of their rights.
That dignity matters. For many people, making choices is a big part of who they are. A person may need help understanding a medical form, sorting out a bill, or deciding whether a job offer is a good fit. They may still know what they want and what feels wrong. Supported decision-making gives room for that voice. It also gives room for learning. Sometimes a person will make a choice that does not work out. With support, that moment can become a lesson instead of a loss of rights.
There are many tools available to assist the person who has chosen supported decision-making. These tools help in determining how much support is needed in making decisions regarding activities of daily living, work, health care options, social connections, spiritual growth, safety and more.
Some people may only need a little help. Others may need more. A person might want someone to sit with them during a doctor visit and take notes. Another person may want help reading mail or understanding a lease. Another may need support before agreeing to a service or treatment. The key is to match the support to the need. It should be enough help to make the decision clear, but not so much that the person loses control of their own life.
A few practical ideas can make supported decision-making easier:
- Pick people who listen well and respect the person making the choice.
- Talk about the person’s goals, likes, and fears before a big decision comes up.
- Write down questions before meetings or appointments.
- Ask doctors, landlords, case workers, and other helpers to use plain language.
- Bring a trusted support person to important meetings when allowed.
- Give the person time to think instead of rushing a decision.
- Check back after a choice is made to see what worked and what did not.
It can also help to think about the person’s daily life. What do they do well on their own? Where do they want help? What choices matter most to them? Support should fit the person, not the other way around. The best support team is one that helps the person understand the issue, not one that takes over the issue.
If you are a parent, guardian, adult child, or caregiver, this can be a hard topic to talk about. It may help to start with small questions. Who does the person trust? What decisions are hardest? What decisions can they already make? What support would make them feel safer and more confident? These talks can happen over time. They do not have to be solved in one day.
For families of youth with disabilities, supported decision-making can also be a good way to build independence step by step. A young person may start by choosing clothes, then making plans for the day, then joining in on school or work-related decisions, and later handling bigger choices about health care or housing. For adults, the same idea can help keep a person involved in choices after a health change, a move, or a hospital stay.
There may be times when guardianship is still needed. But it should not be the first and only answer without looking at other options. Supported decision-making gives people a chance to stay involved in their own lives. It respects the person first and uses support as a tool, not a replacement for choice.
For more information about supported decision-making, please contact Disability Network Lakeshore at 616-396-5326. DNL services are free, and we can help talk through options and connect you with resources.