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How Supported Decision-Making Can Help Family Caregivers

Individuals with autism should have a choice in what happens to them throughout their lives. Too often, parents of children and adults with autism, intellectual, or developmental disabilities are advised – and often when their child is very young, long before it is possible to predict their future decision-making and independent living capacity – that their only option is guardianship. However, there’s a new way to help people with autism and other developmental disabilities to make choices about their lives, and it is called Supported Decision-Making.

What is Supported Decision-Making?

The National Center Resource Center for Supported Decision-Making (see http://supporteddecisionmaking.org) has the motto “Everyone has the right to make choices.” Too often, people with autism, intellectual, or developmental disabilities are thought of as incapable of making their own decisions. With supports, individuals with disabilities can make their own life decisions. Even when their disabilities significantly impact their independent decision-making capacity, they can still have meaningful input into the choices that are made about their lives. They should have a say about where they live, go to school, work, etc. This is the “next generation” of self-determination.

How Does it Work?

Supported Decision-Making occurs when an individual with a disability has a “supporter” or support team to help them decide on important issues. Some states are starting to have Supported Decision-Making options with actual sample forms. This can be done informally and the supporter can be a family member, friend, etc. The Autistic Self-Advocacy Network has a toolkit “The Right to Make Choices” which discusses current laws and options including samples of forms (see http://autisticadvocacy.org/2016/02/the-right-to-make-choices-new-resource-on-supported-decision-making/.)

Schools can also play a major role in building the capacity of students with disabilities to be able to make decisions through a focus on independence and self-advocacy starting from a very young age. The DC Public Schools have excellent resources including an overview of goals that build toward independence and decision-making capacity at every grade beginning with preschool (see http://supporteddecisionmaking.org/events/supported-decision-making-and-youth-transition) and a Supported Decision-Making Consent form (see http://dcps.dc.gov/page/supported-decision-making).

Why is Supported Decision Making a Good Choice?

Research has shown that self-determination effects health outcomes, inclusion in the community, overall independence, and recognition and resistance to abuse.1 Conversely, research has also indicated that guardianship has a “significant negative impact on physical and mental health, longevity, ability to function, and reports of subjective well-being.”2 In addition, as a person with a disability becomes more independent there is less family caregiver burden, but most importantly, better lifelong results for the individual.

What Do Individuals with Disabilities Want?

This generation of self-advocates prefer as much control and decision-making power over their lives as possible. There is a movement towards “person-centered planning” in both the educational and now medical arenas. In healthcare, it is known as “shared decision-making” and “shared responsibility.” But shared decision making should apply not only to health decisions but to all areas of a person’s life. Person-centered planning builds on the person’s strengths and preferences. Children with autism and other developmental disabilities need to learn from an early age how to speak up for themselves and self-advocate. These children should have as much input as possible based on their abilities. Supported Decision-Making is recognized as “autonomy with support.”

Options for Family Caregivers Besides Guardianship

There are many ways that parents can assist their family member with a disability to make important life choices. These include:

 

  1. Supported Decision-Making Agreements – These can be drawn up by families, though as mentioned above some states have templates.
  2. Health Care Proxy – This form addresses medical decisions.
  3. Advanced Directives – Decisions on end-of-life care can be made using this document.
  4. Power of Attorney – This gives another individual control over legal decisions. Please note that there is also an option for “durable power of attorney” for temporary situations such as mental illness that can be revoked once the person regains decision-making capacity.

In summary, although this is a personal decision for every individual with a significant disability and their family, there are new options for parents of children and adults with autism, intellectual, or developmental disabilities. Even if an individual will not live completely on their own, Supported Decision-Making allows them choices throughout their lives. It is essential to remember, regardless of disability, “Everyone has the right to make choices.”

Additional Resources

Administration for Community Living Supported Decision-making Blog: http://www.acl.gov/NewsRoom/blog/2015/2015_01_28.aspx

Getting the Community Life You Want: A Guide to Home and Community Based Services Advocacy – Boggs Center: http://rwjms.umdnj.edu/departments_institutes/boggscenter/products/GettingtheCommunityLifeYouWant.html

Person-Centered Planning Tool – NJ Department of Human Services: http://www.nj.gov/humanservices/ddd/documents/Documents%20for%20Web/PCPT%203-13-13.pdf

Supported Decision-Making and Alternatives to Guardianship factsheet – Statewide Parent Advocacy Network: http://www.spanadvocacy.org/sites/g/files/g524681/f/files/Alternatives%20to%20Guardianship%20Fact%20Sheet.pdf

REACH for Transition: Supported Decision-Making & Alternatives to Guardianship – Statewide Parent Advocacy Network: http://www.spanadvocacy.org/content/supported-decision-making-and-alternatives-guardianship

National Resource Center on Supported Decision-Making:

Lauren Agoratus is the parent of a child with autism/kidney disease. She is the NJ Coordinator of Family Voices, the national network that works to keep families at the center of children’s health care for children with special healthcare needs; in NJ, Family Voices is housed at the Statewide Parent Advocacy Network (SPAN), www.spanadvocacy.org. SPAN is also the home of the state’s Family-to-Family Health Information Center. Lauren can be reached at (800) 654-SPAN or by email at familyvoices@spannj.org. Families can find free help in their state at www.familyvoices.org/states.php.

Footnotes

  1. Ishita Khemka, Linda Hickson, Gillian Reynolds Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse Am J Ment Retard. 2005 May;110(3):193-204.Michale Wehmeyer, Michelle Schwartz Exceptional Children 1998, Vol. 63, No. 2, pp. 245-255.

    Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behaviors of adults with mental retardation and developmental disabilities. American Journal on Mental Retardation, 100, 632-642.

  2. Jennifer L. Wright, Guardianship for Your Own Good: Improving the Well-Being of Respondents and Wards in the USA, 33 Int’l J.L. & Psychiatry 350 (2010)

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