The word “guardian” in the popular lexicon has both positive and negative connotations. The “Guardians of the Galaxy,” in the Marvel Comics and popular movies of the same name are the good guys, albeit a motley crew. Similarly, in the film “The Legend of the Guardians,” the guardian-warrior owls fight for good and to protect the innocent in their world. Various mythologies and Indigenous religions from Greek and Roman to Chinese and Norse, have guardian figures that were deities, demi-gods or other spiritual beings often with super-powers and frequently with frightening appearances. These were definitely forces to be reckoned with. When it comes to the world of disability, the term “guardian” (or sometimes “conservator”) generates mixed reactions. While most family members and school and disability service professionals approach guardianship (or conservatorship) as a way to prevent others from taking advantage of the person with a disability, putting a person with a disability under guardianship may contribute to undermining the best practice of letting the person live and operate in the “least restrictive environment.” Awareness of this concern was raised prominently in the general public’s mind when the pop idol Britney Spears contested and successfully removed her father from his role as her conservator.
Whether any person with a disability that limits their cognitive or executive functioning capacity needs a guardian is a complex question. In order to merit a guardian, a person must be determined by a judge to lack the capacity to make important decisions, particularly around maintaining her/his own personal safety, obtaining necessary and appropriate health care and managing her/his own finances without being exploited. But capacity itself is difficult to measure. First of all, capacity to decide does not usually correlate with academic capacity or intelligence as measured by a particular psychological or vocational test. Moreover, we all run up against limits to our capacity when it comes to making specialized decisions. Without a lot of input from medical professionals I trust, I would be incapable of deciding to have a particular surgery or not. Without asking family and friends who know more about cars than I do, I would be incapable of deciding prudently whether I needed to implement every procedure a mechanic was suggesting. As a financial planner, my clients pay me to provide them the expertise they need to make good decisions about their investments, retirement, college and special needs trust funding, insurance and estate planning. If they could make these kinds of decisions unaided, I would be out of a job. (photo courtesy of Florian Schmetz via "Unsplash")
A friend of mine is African American and was born almost 80 years ago in a small Southern town. He has an intellectual disability. He had no education (never mind special education). He cannot read or write much, and he cannot do math or count change. He is not a particularly good test taker. However, he worked all his life in competitive jobs, taking Chicago area public transportation to and from work independently. Though his walking is now slowed down, he navigated easily on foot around the neighborhood where Oak Park meets Austin, was a capable grill master and, most importantly, was an excellent judge of people. This friend knows that he is perfectly capable of making some decisions alone. An example of this was when he decided to forgo his team’s bowling tournament in order to learn about an innovative supportive living community for adults with intellectual and developmental disabilities. After meeting with representatives and seeing the house where he could live, he made the decision, by himself, to join the community. He also knows that he has trouble understanding some things. He does not have a guardian. When he needs to make a major health care or financial decision, he sits down with trusted friends, some of whom are his support workers and others of whom are people he knows from his church or from the community. These people help him find the information he needs to make his decision and, when necessary, find a way to put it into accessible language.
For as long as I have known him, my friend has thus engaged—informally and on his own initiative--in what we now officially term “supported decision-making.” The Illinois Supported Decision-Making Agreement Act became effective February 27, 2022. Illinois residents with disabilities of any kind—intellectual, developmental, executive functioning, behavioral health or cognitive decline—may designate an “Identified Supporter.” This person may be a family member, friend, co-worker or professional—pretty much anyone that the person with a disability knows and trusts and who is familiar with the goals, dreams and living situation of the person with a disability. The person with a disability then completes a Supported Decision-Making Agreement. Sample language for a supported decision-making agreement can be found in section 50 of the Illinois legislation here. In the agreement, the person with a disability can specify the types of decisions with which the identified supporter may be asked to assist and can specify to which kinds of information the identified supporter may be given access. The agreement also contains language that should trigger mandatory reporting if the person to whom the agreement is presented believes that person with a disability entered into the agreement under duress or is otherwise the victim of abuse.
Because the Illinois Supported Decision-making legislation is so new, we have no way yet to evaluate its usefulness or efficacy as an alternative to guardianship or as a supplement to other forms of support designation such as powers of attorney. We intend to watch closely the development and adoption of supported decision-making in Illinois as well a continue to research the results of its use in states that adopted the process earlier. I have observed closely how well my friend and others like him have made highly effective use of their private version of supported decision-making to both maintain control of key life decisions and obtain in an accessible way the information they need to make those decisions. As a result, I encourage families and the professionals who advise them to research and consider supported decision-making as one of the options for their adult family member with a disability. You can find additional valuable information on this website devoted to supported decision-making, including a detailed presentation by an enthusiastic advocate for the process.