Preserving the Right to Self-determination: Supported Decision-Making

January 28, 2015
Edwin Walker, Deputy Assistant Secretary for Aging
Aaron Bishop, Former Commissioner, Administration on Disabilities

For many years, state courts have routinely assigned guardians to people with intellectual and developmental disabilities as they became adults. Older adults with dementia-related disorders also frequently have been assigned guardians.

The trouble with guardianship is that it is a legal process. A court deems a person incapacitated or legally incompetent and assigns a substitute decision-maker for that person. Guardianship laws vary by state, but in some states, guardians are given the authority to make all financial, legal, and personal decisions on behalf of another person. Essentially, the person can lose ALL of his or her rights to independence, autonomy, and decision-making.

This approach assumes that people with disabilities and older adults are incapable of making decisions. That is simply not the case.

The goal of the Administration for Community Living is to maximize the independence and well-being of older adults and people with disabilities. We are proud to be a leader in exploring alternatives to guardianship. We believe supported decision-making poses the most promising and flexible model.

Supported decision-making starts with the assumption that people with intellectual and developmental disabilities and older adults with cognitive impairment should retain choice and control over all the decisions in their lives. It is not a program. Rather, it is a process of working with the person to identify where help is needed and devising an approach for providing that help. Different people need help with different types of decisions. For some, it might be financial or health care decisions. Others may need help with decisions surrounding reproductive rights or voting. Some may need help with many types of decisions, while others need help with only one or two. 

The solutions also are different for each person. Some people need one-on-one support and discussion about the issue at hand. For others, a team approach works best. Some people may benefit from situations being explained pictorially. With Supported decision-making the possibilities are endless.

The key is that the process is centered on the person to whom the decisions apply, and it enables the person to make decisions based on his or her wants and preferences. Supported decision-making keeps control in the hands of the individual, while providing assistance in specific ways and in specific situations that are useful to the person.

We know on a case-by-case basis and anecdotally that supported decision-making works, and it appears to have the potential to provide a significant improvement to current guardianship arrangements. However, it has not been formally tested, which can make it difficult for states to adopt the practice.

To address that challenge, the Administration on Intellectual and Developmental Disabilities and the Administration on Aging, two program components of the Administration for Community Living, jointly awarded a cooperative agreement to Quality Trust for Individuals with Disabilities to build a national training, technical assistance, and resource center to explore and develop supported decision-making as an alternative to guardianship. The resource center will gather and disseminate data on the various ways in which supported decision-making is being implemented and generate research in the area. Our goal is that the information collected during the period of this cooperative agreement will lead to a model that will help states as they consider alternatives to guardianship.

We are excited by the possibilities this work may generate. It is another step toward ensuring all people are treated with dignity and respect throughout their lives. It is another step toward a vision for the future that includes a collective recognition that the right to self-determination and independence are fundamental for everyone. And ultimately, it offers the promise of new opportunities for people with disabilities and older adults to live and thrive in the communities of their choice.

Update: A Message from Commissioner Bishop

February 13, 2015

Thank you to all our readers who joined this discussion and shared their personal perspectives. The range and diversity of stories, experiences, and responses shows there is no one-size-fits-all solution to this important issue. Many of the concerns shared here highlight exactly the sort of questions that the National Resource Center for Supported Decision Making seeks to explore.

As Deputy Assistant Secretary Walker and I noted in our blog, when it comes to supported decision-making, no two situations are exactly alike. The Administration for Community Living (ACL) recognizes that people with disabilities and older Americans sometimes experience challenges in understanding and communicating their preferences and needs—and, as your stories illustrate, family members and caregivers often play a critical role in ensuring that those preferences are honored and needs are met. Your stories also demonstrate the dangers that can arise when guardianship is viewed as the default option for those who only need support with making a few decisions.

ACL promotes the concept of supported decision-making not because it is the only option, but because it offers flexibility to provide as much assistance as needed—including total assistance, when that is appropriate—while also ensuring that the right to self-determination is preserved for each individual.

We thank you again for your contributions to this important discussion and hope you will keep the comments coming. The feedback you provide will help us think about, and talk about, this issue more clearly going forward


Ann - Sat, 02/10/2018 - 20:15

I am very interested in your work towards Supported Decision Making options for those who live with dementia. A family member who lives with dementia recently became a ward under full guardianship. The process in probate court was fraught with injustices, especially as concerns my father's wishes. This process took place in Indiana. There was a GAL appointed in the case, but he was appointed by the petioner for guardianship and did not support my father's wishes.
The story begins with his POA. They were two children who took their father to their lawyer and in the process were named POA. They then worked to move my father from his long time home and property into a facility. They then moved him from an independent living to a memory care unit. He had stated repeatedly that he did not want to live in a memory care unit, but rather in his home supported by family. The son instead moved in to his father's home and moved his father into a facility. In the process the son and took full control of the father's assests. At a certain point before a guardianship had been petioned he asked another son to get him out of the facility. The second son then took him to California to live with him. There my family member requested that his POA be changed. This was done. But in the meantime the first son filed for guardianship in Indiana. The GAL was given a trip by the second son to California to speak with the father. THe father repeatedly verbally and in writing stated that he wanted to live with his son in California and wanted him to be his POA. But in the end just because the man had more family members in Indiana and had property in Indiana, the GAL said that he would refer to the judge that he come back to Indiana and be under gardianship with the first son. This meant that he was placed in a facility, again against his wish. The first son still lives in his father's home, rent free and spends his father's money on all legal fees, in excess of 100,000. He also uses his father's money for all upkeep and care of the home. This son does not account to his siblings for how he has spent his father's money.
There are so many issues with guardianship for those living with dementia:
Complete financial accounting of POA and guardians
Honoring wishes of those who live with dementia according to where they live and who they would like as POA or guardian.
Fair treatment by judges and GAL

Last modified on 05/07/2020

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