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

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

“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?

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

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.

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)

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

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

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

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

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

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

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

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

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

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

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!)

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

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

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

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

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

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

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

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

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

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