BY LAUREN AGORATUS, M.A.
Self-determination was just the beginning of people with disabilities having a choice in what happens in their lives. Supported decision-making is thought of as the “next generation” of self-determination, especially for people with more significant cognitive disabilities who face the greatest threats to their self-determination. Find out what this means for individuals with disabilities and their families.
PUTTING IT IN CONTEXT
Historically, people with disabilities weren’t thought of as capable of decision making. Even when self-determination was developed, at first it was “letting” people with special needs make choices. People with disabilities shouldn’t need “permission” to say where they live, with whom, where they work, go to school, etc. Even today, most parents are told to get guardianship for their family member, especially those with developmental or intellectual disabilities. In some states, limited guardianship was offered for some flexibility. However, now there are other ways to support individuals in making their own choices without taking away their rights.
ALTERNATIVES TO GUARDIANSHIP
Power of attorney (p.o.a.)/durable p.o.a.
This gives another person the power to make legal decisions on behalf of another. A durable p.o.a. can be revoked after a person who is temporarily incapacitated (e.g., car accident) recovers.
This is similar to a p.o.a. but used for health decisions.
Sometimes called “living wills”, document choices for end of life care.
Making choices with support from another person (see Resources; some states have forms).
WHY SUPPORTED DECISION-MAKING?
Guardianship can have a “significant negative impact on… physical and mental health, longevity, ability to function, and reports of subjective well‐being.” Conversely, self-determination leads to more independence, community integration, better health, and recognition and resistance to potential abuse.
Self-advocates want to have as much decision-making power and control over their own lives as possible. There is a new focus in systems serving people with disabilities that includes person-centered planning and supported decision making. Person-centered planning takes into account the individual’s preferences and strengths in planning (see Resources). “Shared decision-making” is fairly new in healthcare but actually applies to all areas of life. Supported decision-making is known as “autonomy with support.”
There are many options available for individuals with disabilities and their families. This is a personal choice for many families. It is important that individuals with disabilities are given opportunities for choice from an early age. Children with special needs should have as much input as they can, based on their abilities. Supported decision-making follows the philosophy that “everyone has the right to make choices.” •
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org
RESOURCES FOR SUPPORTED DECISION-MAKING
National Resource Center for Supported Decision-Making
Autistic Self Advocacy Network Supported decision-making (including resources on forms)
Statewide Parent Advocacy Network alternatives to Guardianship factsheet
REACH for Transition: Supported decision-making & alternatives to Guardianship
Boggs Center – Getting the Community Life You Want: a Guide to home and Community Based Services advocacy
NJ Department of Human Services Person-Centered Planning Tool
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)
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.