Supported Decision-Making

Choices in Healthcare

and in Life

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.

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

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

Contrasting ApproachesSupported

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

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

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

Washington: Monitoring and Accountability

• Simple complaint process

• Professional guardians regulated, trained

• Some training for lay/family guardians

• Regular reports required

• Guardianships time-limited

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

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

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

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

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

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

Goal 1: Improve existing options

• Protections for people creating a power of attorney (POA)

• Protections for people with protective payeeship

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

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

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

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_implementation_guide.authcheckdam.pdf

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Contact

• David Lord

Public Policy Director, Disability Rights Washington

davidl@dr-wa.org

• Diana Zottman

Chair, Washington State Developmental Disabilities Council

dzottman@KellerRohrback.com