Navigating Adulthood: Supported Decision-Making for Your Child with Disabilities

Earlier in my career, it was a given that when my clients’ child who had a disability turned 18, the parents would pursue guardianship. When I discussed other options, my clients would say the school district had told them they needed to become guardians for their child. Over the last decade, there has been movement towards seeking less restrictive alternatives to guardianship. Supported decision-making (“SDM”) has emerged as one of the most popular options, although its prevalence varies widely depending on what state you live in.

SDM is a model that empowers the individual with a disability to be the ultimate decision-maker for themselves, while providing a support system through others who provide the resources to make those decisions. SDM starts from a different premise than guardianship and other alternatives. With a supported decision-making agreement (SDMA), the individual with a disability retains complete decision-making authority. The agreement outlines the areas of support they desire, who will provide that support, and where in the decision-making process the support will be provided. The supporter must consent to accept the decisions of the principal and not to step in and act for them. In addition, the SDMA can be changed or revoked at any time.

In contrast, through a Power of Attorney (“POA”) document, the individual with a disability appoints another person to act for them in certain situations. Although SDM takes a different approach than a POA, they are not mutually exclusive. An individual could have both a SMDA and a POA where they appoint an individual to act for them in certain situations. Of course, the framework for when each would apply would need to be carefully delineated.

Some families will consider a limited guardianship, which carves out areas of retained capacity where the individual is able to make their own decisions. For example, a guardianship order might state that the individual can make decisions regarding their daily activities, employment, and ability to manage small amounts of money. Any decisions regarding amounts over the agreed upon threshold would then be handled by the appointed Guardian. This is fundamentally different from SDM, where the premise is that the individual has decision-making authority in all areas but needs support in making certain (or all) decisions.

With traditional guardianship, the involvement of the individual with a disability in decision-making often varies on a case-by-case basis. I serve as Guardian for a man with intellectual and mental health disabilities, but he is very independent and makes his own decisions in many arenas. His finances is one area where he has less authority, but he overcomes this by doing odd jobs for a neighbor for cash that he then spends as he wishes.

So does it matter that he has a full guardian if he is free to act independently in most ways? It is easy to miss how the psychology of the approaches is different and how meaningful that difference can be.

With SDM, the individual with a disability has autonomy to make decisions and seek support where needed. If I were to buy a car, I would seek input from someone with more experience with cars than I have. Similarly, my clients who are turning 65 come to me to ask about their Medicare and Social Security options.

SDM may not be appropriate for all people. An individual who cannot fundamentally understand a decision and its risks, even with support, or cannot communicate preferences in any way, may have trouble using SDM effectively. Another challenge of SDM is how to apply it with individuals with severe mental illness. SDM is certainly easier for people with mild to moderate intellectual and cognitive impairments than it is for people with psychosis and other types of extreme mental stress whose decision-making abilities may fluctuate rapidly. The serious issues of self-harm and aggression must be considered.

While SDM may not be right for every individual with a disability or for all decisions, it does provide an important shift in perspective that can be applied widely. Individuals with disabilities should be presumed capable of making decisions unless there is clear evidence that they cannot. Even individuals who are determined to be incapable of making or communicating their decisions can still be engaged in the process. Capacity and independence can and should be maximized by using the SDM process.

If you or a loved one is planning for SDM, POA, or any other alternatives to guardianship, please do not hesitate to contact me at ssiegel@norris-law.com.