Supported Decision-Making

EVERYONE has the Right to Make Decisions!

Supported Decision-Making came to light in the smile of Jenny Hatch, a young woman with Downs Syndrome, who fought her way out of an abusive guardianship situation and into the national limelight at the same time.

Jenny didn’t need a guardian to control every aspect of her life.  All she needed was a little help – a little support.

This is the main concept of Supported Decision-Making and NASGA wholeheartedly cheers the Supported Decision-Making movement as not only a viable alternative to guardianship, but hopefully, guardianship’s future for those who do not need someone to control every aspect of his/her life.

There will always be some individuals who are completely incompetent and unable to make decisions.  But, we see case after case where a person is deemed “incapacitated” and placed into a full plenary guardianship when all the person needed is a little help.


Since Jenny Hatch paved the way, there have been several other successes.  Read all about them and celebrate their success on the National Center for Supported Decision-Making’s page:  Stories of Supported Decision-Making!


Following is a short article from The Administration for Community Living (a part of the US Department of Health and Services) which gives a good overview of Supported Decision-Making and information about the National Resource Center for Supported Decision-Making (NRC-SDM):

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

by Aaron Bishop, Commissioner, Administration for Intellectual and Developmental Disabilities, and Edwin Walker, Deputy Assistant Secretary for Aging

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 External Web Site Policy 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.

Source

About the NRC-SDM

The National Resource Center for Supported Decision-Making (NRC-SDM) builds on and extends the work of Quality Trust’s Jenny Hatch Justice Project by bringing together vast and varied partners to ensure that input is obtained from all relevant stakeholder groups including older adults, people with intellectual and developmental disabilities (I/DD), family members, advocates, professionals and providers.

The NRC-SDM partners bring nationally recognized expertise and leadership on SDM, representing the interests of and receiving input from thousands of older adults and people with I/DD. They have applied SDM in groundbreaking legal cases, developed evidence-based outcome measures, successfully advocated for changes in law, policy and practice to increase self-determination and demonstrated SDM to be a valid, less-restrictive alternative to guardianship.

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Guardianship Alternatives:
The State of Texas is making great strides in passing significant legislation to advance alternatives to guardianship for people with disabilities, including supported decision-making.  Find information about alternatives to guardianship for persons with disabilities, including supported decision-making, at the Texas Council for Developmental Disabilities website.   The Supported Decision-Making Agreement form is available.

Guardianship does not have to be a life sentence and we shouldn’t let it be!  Supported Decision-Making is spreading across the nation state-by-state as perhaps the most valuable alternative to guardianship, especially involving the I/DD community.  We expect many states to introduce legislation beginning in the year 2017.

The State of Delaware also has passed Supported Decision-Making legislation and we look forward to watching the list grow!

Remember, Supported Decision-Making is not the only alternative to guardianship because individuals’ needs are not always the same.

A strong properly executed Durable Power of Attorney, Health Care Proxy and other Advance Directives are the best protections for the elderly or adult disabled against unwanted and unnecessary guardianships and conservatorships.

Settling family disputes instead of taking them to court is the absolute best way to avoid a guardianship or conservatorship.  Avoiding guardianship or conservatorship is the best way to avoid guardianship or conservatorship abuse.   Mediate!

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