From NACDD's 2014 National Conference

1. Supported Decision-Making
Choices in Healthcare
and in Life

2. What we will cover
• What is supported decision-making?
• How does It compare with guardianship
and “substitute decision-making” in
Washington State. How about your state?
• Our strategy for moving toward supported
decision-making.

3. What is “supported decision-
making” (SDM)?
Supported decision-making is:
“a series of relationships, practices,
arrangements, and agreements, of more
or less formality and intensity, designed to
assist an individual with a disability to
make and communicate to others
decisions about the individual’s life.”
– Robert Dinerstein

4. Good news! There’s increasing
interest in SDM
• Convention on the Rights of People with Disabilities
• Ross v. Hatch (August 2013)
• Nonotuck and Center for Public Representation pilot
(Mass.)
• Administration for Community Living Technical
Assistance Grant

5. Contrasting Approaches
Supported
Decision-making
• Identify, support
individual competencies
• Person keeps rights
• Identify person’s choices
and preferences
• Rely on committed,
trustworthy relationship
• Person chooses who
provides support
Guardianship
• Label person as
“incompetent”
• Strip away rights
• Substitute guardian’s
“best interest” decision
• Often a professional paid
to provide service
• Court chooses the
guardian

6. Moving toward SDM includes
reforming guardianship to …
• Limit guardian authority
• Increase monitoring and accountability
• Recognize degrees of “capacity”
• Support choices, growth, independence
• Enforce preference for limited guardianship and
alternatives

7. Washington State has
a progressive law
• Favors least restrictive alternatives
• Forbids guardian-imposed placement
against will, sterilization, lobotomy, ECT
• Assures full due process – notice, jury trial
and lawyer if requested
• Retains voting rights
• Requires guardian to determine person’s
choice first, limits override

8. Washington:
Monitoring and Accountability
• Simple complaint process
• Professional guardians regulated, trained
• Some training for lay/family guardians
• Regular reports required
• Guardianships time-limited

9. Despite these provisions…
Here’s what really happens.
• Monitoring spotty, ineffective
• Alternatives often ignored
• Guardian has effective control over
placement
• Growing guardianship industry
• Complaints about costs, rights abuses

10. What really happens? (continued)
• Bias by courts supporting guardian
decisions
• Service providers often follow guardian
rather than person – even where guardian
overreaches
• “Alleged incapacitated person” often
assumed to be incapacitated
• Lack of support for growth, increased
capacity

11. Moving toward SDM: A plan
• DRW investigates and report on SDM for
people receiving services
• DRW and DDC develop a plan
– Form a task force of stakeholders and
interested parties
– Set goals

12. Choice-making in Service System
• DRW statewide monitoring of decision-making
for people in “supported living” programs (2013)
• Participants in programs:
– Lack access/support to internet and other information
sources
– Did not make everyday decisions
– Not provided training and support for decision-making
– Isolated from community activities

13. Who is interested?
• DDC
• Disability Rights Washington
• People First & other self-advocacy groups
• Arc
• Area Agencies on Aging
• AARP
• Long-Term Care Ombuds
• Office of Public Guardianship
• Professional guardians
• Elder Law Section of State Bar

14. Implementation Goals
1. Increase safety and utility of SDM options
and other less restrictive support
2. Increase availability and range of SDM
options
3. Increase awareness of SDM among:
• Individuals with disabilities, seniors and families
• Social service providers and education system
• Guardians, guardians ad litem and the legal system

15. Goal 1: Improve existing options
• Protections for people creating a power
of attorney (POA)
• Protections for people with protective
payeeship

16. Goal 2: Availability of SDM
• Expand list for informed consent for healthcare
• Expand availability of and knowledge about
payee services
• Create a service that provides supervised,
bonded fiduciaries to serve as POA agents
– Opportunity: expand role of the Office of Public
Guardianship

17. Goal 3: Increase awareness
• Awareness and education with school
personnel regarding SDM
• Information on SDM for on-line guardian
training
• Prepare success stories of people who
are doing well without a full guardian
• Self-advocacy training

18. References and Resources
• “Alternatives to Guardianship”, Report of the Washington State Office of Public
Guardianship (2009) http://www.courts.wa.gov/content/publicUpload/Office%20of
%20Public%20Guardianship/AlternativestoGuardianshipsfinalwebsite.pdf
• Robert Dinerstein, Implementing Legal Capacity Under Article 12 of the UN
Convention on the Rights of Persons with Disabilities: The Difficult Road from
Guardianship to Supported Decision Making, 19 HUMAN RIGHTS BRIEF 8, 10
(2012)
• Jenny Hatch Project http://supporteddecisionmaking.org/; Center for Public
Representation/Nontuck Project

19. References and Resources (2)
• Nina A. Kohn, Jeremy A. Blumenthal, Amy T. Campbell, Supported Decision-Making:
A Viable Alternative to Guardianship?, 117 Penn St. L. Rev. 1111 (2013)
•
• Lori A. Stiegel & Ellen VanCleave Klem, Power of Attorney Abuse: What States Can
Do About It: A Comparison Of Current State Laws With the New Power of Attorney
Act, AARP Public Policy Institute, Chart 1 at 30 (2008)
• United Nations Convention on the Rights of Persons with Disabilities, December 13,
2006, U.N. Doc. A/RES/61/106, http://www.un.org/disabilities/default.asp?id=272.
• WINGS Tips: State Replication Guide For Working Interdisciplinary Networks Of
Guardianship Stakeholders (2014)
http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_wings_i
mplementation_guide.authcheckdam.pdf

20. Contact
• David Lord
Public Policy Director, Disability Rights Washington
davidl@dr-wa.org
• Diana Zottman
Chair, Washington State Developmental Disabilities
Council
dzottman@KellerRohrback.com