1. Matthew Smith, Esq.
Joan Cornachio
Project Coordinator
Education & Training Coordinator

2. Guardianship
The legal process by which the right and power to make decisions and enter into legal relationships is taken away from one person because of his/her alleged incapacity, and given instead to another, the Guardian

3. “Protection” of Persons with Intellectual Disabilities
1900 to 1970, institutionalization in “schools” for the retarded
1964, Willowbrook
1969 to present, guardianship
1969, Article 17-A enacted
2017 and forward, supported decision- making?

4. A Human Rights Lens: Choice, Legal Recognition, Non-discrimination, Dignity
Universal Declaration of Human Rights (1948)
United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2008)
signed, but not yet ratified by the US

5. CRPD, Article 12
States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

7. What Is Supported Decision-making?
Supported decision-making (SDM) 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, “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 (Winter 2012)

8. Kinds of Support Gathering necessary information
Educating the Decision-Maker (DM) about that information
Identifying possibilities and alternatives
Aiding the DM in weighing choices and understanding consequences
Communicating the DM’s decision to others
Helping to implement the DM’s decision

9. SDMNY, in Brief
In 2016, Hunter College/CUNY, NYSACRA, and the Arc of Westchester, in partnership with Disability Rights New York (DRNY) as the legal arm, began a 5-year project to promote the use of SDM in New York
Funded by the NYS Developmental Disabilities Planning Council (DDPC) at $300,000/year
Independently evaluated, pursuant to a separate DDPC grant, by CQL

10. Supported Decision-Making Facilitation Training
January 18, 2017
Objectives of SDMNY
Education
Facilitation
Diversion
Restoration
Transformation
SDMNY, made possible by funding from the NYS DDPC

11. Pilot Projects Sweden Latvia Massachusetts Bulgaria Czech Rep.
New York
Israel
Texas
Colombia
Kenya
Australia

12. SDM Around the United States
ME: Study
WA: Bill
MA: Bill
DC: Policy + Bill
IN: Study
VA: Study
TN: Bill
NC: Study
DE: Legislation
TX: Legislation

13. Supported Decision-Making Facilitation Training
January 18, 2017
Who Supports SDM?
2017
American Bar Association Commission on Disability Rights adopts Resolution 113
2016
American Association on Intellectual and Developmental Disabilities & The Arc issue Joint Position Statement
Social Security Administration releases Issue Brief
National Guardianship Association issues Position Statement
American Bar Association publishes PRACTICAL Tool for Supporting Decision-Making
Delaware passes legislation recognizing SDMAs
2015
Texas passes legislation recognizing SDMAs
2014
Administration for Community Living creates Supported Decision-Making Program
SDMNY, made possible by funding from the NYS DDPC

14. Our Process Phase 3 Phase 2 Phase 1 Mentors Facilitators
Get to know the DM
Phase 2
Reach out to Supporters
Phase 3
Negotiate the SDM agreement
Mentors
Facilitators
Supporters
Decision-makers

15. The Cast of Characters
The person with I/DD who we call “the Decision-Maker” or DM
The facilitator
The mentor
The supporters

16. Steps in SDM Facilitation
Phase 1: DM facilitation
Phase 2: Supporter facilitation
Phase 3: Team (DM + Supporters) facilitation
Post-SDMA follow-up

17. Where We Recruit DMs Information sessions at
schools,
provider agencies, and
self-advocacy organizations
Referrals from attorneys, courts, law school clinics
Conferences and community presentations

18. Who Are the Facilitators?
MSW students
Volunteers (retired professionals, teachers, social workers, etc., from Re-Serve)
Provider agency personnel
OTA students
Parents (not for their own children!)

19. Who Are the Mentors?
Persons experienced in SDM and who have done several facilitations who will:
train facilitators
be available for questions and advice
convene facilitators in a group for shared learning

20. The Big Four Components of the SDMA: Which?
Areas in which the DM wants to receive support
Who?
Persons from whom the DM wants to receive support
What?
Kinds of support the DM wants to receive
How?
Process or procedure by which the DM will utilize supporters in making a decision

21. Phase 1: DM Facilitation
Working with the DM and utilizing the SDMA worksheet to ascertain:
decision-making areas where she currently makes and wants to make in the future (e.g., health, money, work, education)
who helps her in making decisions and who she would like to support her in the future
what kinds of support she wants to receive (entering information, communicating decisions, helping weigh alternatives, etc.)
how the DM wants to use her Supporter(s) when a decision is to be made

22. Phase 2: Supporter Facilitation
Working with the DM’s chosen Supporters to:
educate them about SDM
“reposition” them from their existing roles (such as parents who currently make decisions for the DM)
gain their commitment to that role and to honoring the primacy of the DM in her decision-making

23. Phase 3: Team Facilitation
Working with the DM and Supporters
Utilizing the SDMA worksheet to negotiate the supported decision-making agreement (SDMA)
Modeling what that process should look like, with the DM at the center
Helping all parties understand the SDMA

24. Core Principle of the SDMA
The DM has the right, at any time, to revoke the agreement, to change or add Supporters, areas in which she wishes to receive support, the ways in which she wishes to receive support, or the process utilized for making decisions with Supporters

25. Purpose of the SDMA
Serves as an end product for the facilitation process and signals its success
Formalizes parties’ agreement and provides a reference if misunderstandings occur
Allows for flexibility as DM’s decision-making skills and confidence increase
Prepares for if Supporters “age out” or otherwise become unavailable
Demonstrates that there is a clear system in place that is a “less restrictive alternative” that avoids guardianship

26. Additional Activities of the Project
Partnering with DOE (NYC and NYS) to incorporate SDM in transition planning
Working to change special education to incorporate decision-making skills from pre-K to graduation
Working with OPWDD to develop SDM-friendly policies
Developing modules on SDM for appropriate courses in Social Work, Nursing, OT, Ed and Law schools

27. Supported Decision-Making Facilitation Training
January 18, 2017
SDMNY, Today
In New York City, we are currently facilitating 12 decision-makers towards making SDMAs with their Supporters
This year, we are starting to facilitate decision-makers in Westchester County
Starting next year, we will begin to facilitate decision-makers in other sites throughout New York State
SDMNY, made possible by funding from the NYS DDPC

28. For more information about SDMNY, please visit www.sdmny.org.
Thank you for joining us!