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.
Background
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
Advanced Directives
v This documents
choices for end-of-life care and are also called “living wills.”
v This document is
used for medical decisions.
Power-of-attorney
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].”
Resources:
Alternatives to
Guardianship factsheet-
REACH for
Transition: Supported Decision-Making & Alternatives to Guardianship
http://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
http://www.nj.gov/humanservices/ddd/documents/Documents%20for%20Web/PCPT%203-13-13.pdf
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.
Remain Hopeful,
Lauren
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)
