1. Supported Decision Making Demonstration Project : A Collaborative Approach WINGS CONFERENCE -- SEATTLE MARCH 2016 1

2. Learn about: 1. Different life experiences of adults who are their own guardians compared to those under guardianship in NCI participating states 2. The concepts and principals of Supported Decision- making. 3. Supported Decision-making initiative between a public interest law firm and a shared living provider in Massachusetts 4. Independent evaluation of SDM initiative to report on lessons learned and good practices WINGS CONFERENCE -- SEATTLE MARCH 2016 2

3. National Core Indicators (NCI) State Members 2014-15 WINGS CONFERENCE -- SEATTLE MARCH 2016 3 HI WA AZ OK KY AL NC PA MA TX AR GA NM NJ MO NH OH* IL LA NY Wash DC FL CA* SD CO KS UT MN WI MI IN TN MS SC VA DE CT RI ME VT OR 42 states District of Columbia 22 sub-state regions CA*- Includes 21 Regional Centers OH*- Also includes the Mid-East Ohio Regional Council

4. Exercising Choice No guardianship Limited guardianship Full guardianship Choice – Made decision or had some input into decision Home 62%46%41% Roommates 54%42%35% Staff (day & residential) 69%64%60% Daily schedule 90%79%77% What to buy 93%83%81% WINGS CONFERENCE -- SEATTLE MARCH 2016 4 Source: NCI-DD Adult Consumer Survey data 2013-14

5. Relationships No guardianship Limited guardianship Full guardianship Relationships Has friends who are not family or staff 78%74%73% Can date without restrictions 71%68%58% WINGS CONFERENCE -- SEATTLE MARCH 2016 5 Source: NCI-DD Adult Consumer Survey data 2013-14

6. Personal Characteristics No guardianship Limited guardianship Full guardianship Co-occurring: Mild level ID49%33%28% Use speech to communicate 85%72%65% Live with parents or other relatives 38%29%33% WINGS CONFERENCE -- SEATTLE MARCH 2016 6 Source: NCI-DD Adult Consumer Survey data from 2013-14

7. NCI Guardian Status Tracking 2015 New Question If under guardianship, guardian’s relationship to person: Family Friend Employee of state or guardianship agency Other NCI 2013-14 Adults with I/DD receiving services in NCI states: No guardian - 50% Limited guardian - 7% Full guardian - 43% Don’t know - 2% WINGS CONFERENCE -- SEATTLE MARCH 2016 7

8. Important guardianship reforms Procedural due process rights, e.g.: Notice Right to be present Periodic review Stricter reporting requirements Higher expectation on proof Limited guardianships and limits on guardian’s authority Right to counsel Substantive reforms, e.g., Functional definitions of competency WINGS CONFERENCE -- SEATTLE MARCH 2016 8

9. Common “mental capacity” test for guardianship Uniform laws -- UGPPA: Functional Impairment: An inability to receive and evaluate information or make or communicate decisions To such an extent that the individual lacks the ability to meet essential requirements for Physical health Safety Or self-care Even with appropriate technological assistance On a continuum (limited guardianship) WINGS CONFERENCE -- SEATTLE MARCH 2016 9

10. Supported decision-making (SDM) Spurred by the Convention on the Rights of Person with Disabilities (CRPD) and advances in Canada, Europe and elsewhere supported decision-making (SDM) is increasingly seen as an alternative to substituted decision-making such as guardianship. WINGS CONFERENCE -- SEATTLE MARCH 2016 10

11. Convention on the Rights of Persons with Disabilities (CRPD) Dec. 13, 2006 - Adopted by U.N. General Assembly. May 3, 2008 - Entered into “legal force.” As of February 10, 2016: 162 nations and the European Union have ratified or acceded to the CRPD – some with reservations 25 more nations have signed the CRPD. The United States signed the treaty on July 30, 2009. Not ratified. Thanks for slide design to David Hutt, nDRN WINGS CONFERENCE -- SEATTLE MARCH 2016 11

12. Map updated July 8, 2014. WINGS CONFERENCE -- SEATTLE MARCH 2016 12

13. Article 12 of the CRPD 1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. 2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. 3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require to exercise legal capacity. WINGS CONFERENCE -- SEATTLE MARCH 2016 13

14. Principles of SDM People do not inherently lack capacity Everyone has a will and preferences Will and preference can be expressed by the person or understood (interpreted) by others who know the person well & are in a voluntary, trusting and committed relationship with the person WINGS CONFERENCE -- SEATTLE MARCH 2016 14

15. Highlights of Supported-Decision Making Individual with an impairment is provided the supports necessary to make a decision. Trusted individuals, including family members, friends, professionals, will commit to help explain to the person in simple language about possible choices and the impact of those choices. WINGS CONFERENCE -- SEATTLE MARCH 2016 15

16. Definition of Supported-Decision Making “a series of relationships, practices, arrangement, 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 H UMAN R IGHTS B RIEF 8, 10 (Winter 2012). WINGS CONFERENCE -- SEATTLE MARCH 2016 16

17. Legal capacity “Legal capacity” and “mental capacity” are not the same thing Recognizes that will and preferences are the core of decision making abilities Focuses on supports and accommodations to enable will and preferences to guide decision making Adapted from materials by Michael Bach Canadian Association for Community Living WINGS CONFERENCE -- SEATTLE MARCH 2016 17

18. SDM Implemented Planning and implementation across the world No single model – drawing on, e.g., Circle of friends Person centered planning Can be informal or formal Can be court sanctioned or not Can have support and authority in statute British Columbia Texas Always need to build in safeguards WINGS CONFERENCE -- SEATTLE MARCH 2016 18

19. TEXAS SDM STATUTE 1 st state to recognize supported decision-making Purpose: “to enable the adult to make life decisions, including decisions related to where the adult wants to live, the services, supports and medical care the adult wants to receive, whom the adult wants to live with, and where the adult wants to work, without impeding the self- determination of the adult.” Tex. Est. Code §§ 1002.0154 & 1357.001 WINGS CONFERENCE -- SEATTLE MARCH 2016 19

20. Supported-Decision Making in Practice “The guardianship is to be a limited guardianship of limited powers and limited duration, with the ultimate goal of transitioning to the supportive decision making model.” Ross v. Hatch, Virginia Circuit Court for the City of Newport News (August, 2013) “[I]nternational adoption of a guarantee of legal capacity for all persons, a guarantee that includes and embraces supported decision making, is entitled to ‘persuasive weight’ in interpreting our own laws and constitutional protections.” In re Guardianship of Dameris L., 38 Misc. 3d 570, 580 (N.Y. Surr. Ct., N.Y. Cnty. 2012) WINGS CONFERENCE -- SEATTLE MARCH 2016 20

21. Massachusetts SDM Pilot Partnership between CPR & Nonotuck Resource Associates Among the first SDM demonstrations in the nation Individuals with I/DD enter into Agreements with supporters in areas such as health, relationships, finances, employment o CPR provides legal representation as necessary o Nonotuck care managers act as liaisons between the individual, his/her network and the community Advisory Council reviews progress, offers guidance Independent evaluation supported by grant from the Open Society Foundations WINGS CONFERENCE -- SEATTLE MARCH 2016 21

22. SDM Pilot Advisory Council Representatives include: People using state services Legal scholars in disability issues Judges Attorneys Medical professionals Directors of social service organizations WINGS CONFERENCE -- SEATTLE MARCH 2016 22 Video of Paige and Johnathan

23. Massachusetts SDM Pilot Currently 8 adults using shared living, 24 to 79 years old, with different disabilities and varying levels of support 2 participants have guardians & support change to SDM SDM networks of 2 to 10 supporters: parents, siblings, grandparents, aunts, past & current providers SDM Pilot Toolkit: SDM Representation Agreements Durable Powers of Attorney Health Care Proxies WINGS CONFERENCE -- SEATTLE MARCH 2016 23

24. Amanda’s SDM Arrangement Decision Support Areas: Health care, Legal, Finances, Home and Personal Life Chose 4 Supporters: Mother Live in caregiver since 2009 Respite worker WINGS CONFERENCE -- SEATTLE MARCH 2016 24

25. TERMINATION OF CORY’S GUARDIANSHIP WINGS CONFERENCE -- SEATTLE MARCH 2016 25 Reluctant family encouraged by school & state agencies to be guardians when he turned 18. 5 years later SDM provided an alternative. Also signed DPOA and AD Clinicians testified he was capable of making own decisions with support Court discharged the guardianship in 2015, finding that with support he can make his own decisions..

26. WINGS CONFERENCE -- SEATTLE MARCH 2016 26

27. Role of SDM Supporter Support person’s decision-making by: o One-on-one conversations laying out pros and cons o Demonstration and role-playing o Lots of meetings! Lots of conversations! Know how person makes decisions (for example, wait 6 minutes for Amanda’s response) Respect person’s values and preferences … and decisions WINGS CONFERENCE -- SEATTLE MARCH 2016 27

28. SDM Experience to Date Implementation lessons learned to date Types of decisions SDM used Receptiveness of community members WINGS CONFERENCE -- SEATTLE MARCH 2016 28

29. Resources & References Open Society Foundations: https://www.opensocietyfoundations.org/ https://www.opensocietyfoundations.org/ SDM initiative website: www.supporteddecisions.org www.supporteddecisions.org Representation Agreement and other document templates Brochure Advisory Council overview National Core Indicators (NCI): www.nationalcoreindicators.orgwww.nationalcoreindicators.org National Resource Center: www.supporteddecisionmaking.orgwww.supporteddecisionmaking.org WINGS CONFERENCE -- SEATTLE MARCH 2016 29

30. Contact Us! WINGS CONFERENCE -- SEATTLE MARCH 2016 30 Robert D. Fleischner, Assistant Director Center for Public Representation 22 Green Street, Northampton, MA 01060 413-586-6024 RFleischner@cpr-ma.org George Fleischner, CEO Nonotuck Resource Associates 425 Prospect St., Northampton, MA 01060 413-586-5256 fleischner@nonotuck.com Elizabeth Pell, Policy Associate Human Services Research Institute 2336 Massachusetts Ave., Cambridge, MA 02140 617-844-2307 epell@hsri.org