Children with special health care needs should have a choice in what happens in their lives, especially as they become adults. There are things that family caregivers can do to help their child self-advocate and learn how to make good decisions.
The “next generation” of self-determination is Supported Decision-Making. This means that the individual makes his/her own decisions with the help of a supporter or a support team. Children with special needs have different capabilities regarding decision-making, but they can make choices with support. As adults, they should have a say in where they live, work, post-secondary education, etc. Many family caregivers are advised to use the legal process of guardianship for their child, especially those with developmental or intellectual disabilities. There is some flexibility in states using limited guardianships, but this still takes away many of the rights of individuals with disabilities. Using Supported Decision-Making will let people with disabilities make the best choices in their lives, with support.
Alternatives to Guardianship
v This documents choices for end-of-life care and are also called “living wills.”
v This document is used for medical decisions.
v Another person has the control over legal decisions. Note: a “durable” power-of-attorney can be revoked if the person has temporary incapacity.
Supported Decision- Making Agreements (some states have forms-See Resources)
v Making decisions with assistance from a support person.
How This Helps Family Caregivers
Research has found that self-determination results in better health, independence, community inclusion, and understanding and opposition to potential abuse.[i] On the other hand, guardianship may “have a “significant negative impact on . . . physical and mental health, longevity, ability to function, and reports of subjective well‐being.”[ii]
New initiatives emphasize “person-centered planning” and Supported Decision Making. Person-centered planning considers the assets and preferences of the individual (See Resources.) In healthcare, there is a new focus on “shared decision-making.” Supported Decision-Making will apply to all areas of the person’s life and is thought of as “autonomy with support.” Children with disabilities should be taught to self-advocate in order to have control over decisions throughout their lives.
Now there are new options for family caregivers of children with special needs. This is a personal decision for each family. Even if the child will never live completely independently, it is essential that children with special needs get opportunities to make choices from an early age. Children with disabilities should have as much input as they can, based on their abilities. Supported decision-making follows the belief that “everyone has the right to make choices[iii].”
Alternatives to Guardianship factsheet-
REACH for Transition: Supported Decision-Making & Alternatives to Guardianshiphttp://www.spanadvocacy.org/content/supported-decision-making-and-alternatives-guardianship#overlay-context=content/workshopsevents
Getting the Community Life You Want: A Guide to Home and Community Based Services Advocacy
National Resource Center for Supported Decision-Making
Person-Centered Planning Tool
Supported Decision-Making Toolkit (including resources on forms)
*This is an edited version of my article in the forthcoming March issue of Exceptional Parent magazine at www.eparent.com.
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.
[i] 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.
[ii] 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)