Supported Decision Making: A Discussion

 April 28, 2016
Posted by M&LAdmin4

Thursday, April 28th, 2016

As parents, we inherit many responsibilities when we bring a child into the world. We must feed, clothe, and care for our children; provide emotional support, love, and security. We guide them through their childhood and provide them with the tools that they need to succeed in life. We also make decisions on behalf of our children – decisions that we feel will have the best possible outcomes – until such a time when they can make these decisions for themselves, i.e. when they enter the adult world.

As parents of individuals with disabilities, we must acknowledge that our responsibilities do not necessarily end when our child reaches adulthood. He or she may require additional support and care well into adulthood, or perhaps for the entirety of his or her life. This can also apply to decision making – many parents ask themselves, “Is my child with disabilities able to make decisions about medical care, living arrangements, finances?”, or “How do I ensure that my child with disability has the right information and tools to make the right decisions? Do I make these decisions on his or her behalf?”

These questions have inspired the topic of today’s blog – Supported Decision Making (SDM). SDM has emerged as a new way to handle the legal, medical, and life choices that your adult child with disability will face as he or she journeys through life. If you are interested in learning more about Supported Decision Making, please read on!

Supported Decision Making: What is it?

Over the last couple of years Supported Decision Making (SDM) has emerged as a positive alternative to Adult Guardianship and is a decision-making support system that respects personal choice and autonomy. In a webinar designed by Tina Campanella, Executive Director of the Washington, D.C. based non-profit Quality Trust (the organization credited with creating the SDM movement) the supported decision making process “provides emphasis on legal capacity as a right, provides for meaningful involvement for the person needing support in decision making, discusses the need for self-advocacy support and new strategies for safeguards.” In other words, it involves  involves providing an individual with disability with the help and support that he or she needs in order to make important decisions about where they live, how they pursue medical treatment, legal matters, and other important life decisions. In this way, the individual with disabilities is able to develop and pursue personal goals, retain autonomy, and exercise control over things that are important to them.

According to this Supported Decision Making Fact Sheet, there are three core principles of SMD:

1.) Every person can express their will and preference
2.) A person with disability has the right to make decisions
3.) A person with disability can expect to have access to appropriate support to make decisions.

SDM is supported under the UN’s Convention on the Rights of the Person with Disability under Article 12. For more information about SDM, please take a moment to visit, the website for the National Resource Center for Supported Decision-Making, or Quality Trust’s The Jenny Hatch Justice Project.

Is supported decision making right for my family with special needs?

Whether or not SDM is right for your family with special needs is a question that only you can answer. Each family is unique, and each situation comes with its own set of challenges that only you, as a parent and a member of the individual’s personal support network, can fully understand.

The important thing to remember about SDM is that just because a person with disability cannot make some decisions, it does not mean they cannot make any decisionsi. Following the SDM model means helping an individual with disability identify when and where they need help, and then providing them with that help so that they can make informed, positive decisions about their own lives. This could include finding and providing information, searching for and offering alternative solutions, acting as a sounding board for ideas and possible outcomes, as well as offering discussions of pros and cons (as well as many other things). The great thing about SDM is that it can be tailored to fit the needs of each individual, as the type and level of support will both depend on the importance of the decision, as well as the person involved.

According to advocates, the goal of SDM  is to “improve the capacity of families, carers, and service providers to step away from substitute decision making and move towards more self-directed decision making.” I think that that is something with which we can all agree.

More Information

Thank you all for taking the time to visit our blog today. We hope that you enjoyed reading it as much as we enjoyed writing it – we also hope that you were able to take away some new and useful information.

Please note that this blog is for informational purposes only – if you would like to pursue SDM as a decision making option in your family with special needs, please contact legal counsel in your home state. If you would like to learn more about Supported Decision Making in general, and see real world examples of how individuals with disabilities and their families practice SDM, please visit Center for Public Representation’s Supported Decision Making Pilot Program website.

Thanks again for dropping by – please visit us again next week!


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