1. Supported Decision-Making: International Context and Exploration of Outcomes of People Under Guardianship Valerie Bradley Elizabeth Pell Dorothy Hiersteiner Human Services Research Institute American Association on Intellectual land Development Disabilities June 6, 2016 Atlanta GA

2. Overview Formal precedents for Supported Decision- Making Definition and meaning of Supported Decision-Making Review of data from National Core Indicators regarding relative out individuals with ID/DD with and without guardianship

3. United Nations Convention on the Rights of Persons with Disabilities (CRPD) Based on the U.S. Americans With Disabilities Act Frames concerns of people with disabilities in terms of human rights. International agreement signed by 149 countries CRPD has 50 Articles. Purpose, Article 1, is to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

4. Two Key Provisions Article 5, Equality and Non-discrimination - Governments should take steps to reasonably accommodate people with disabilities, to promote equality, and eliminate discrimination 1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law. 2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds. 3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided. 4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention

5. United Nations Convention on the Rights of Persons with Disabilities (CRPD) Article 12, Equal Recognition Before the Law – 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 in exercising their legal capacity

6. Status of CRPD in the USA Signed by President Obama (2009) Submitted by Administration to US Senate for ratification (2/3 vote required)(Summer 2012) Passed US Senate Committee on Foreign Relations Defeated in US Senate (Dec. 2012) Re-submitted to US Senate Committee on Foreign Relations; two hearings held (Nov. 2013) Defeated in US Senate (August 2014) Next steps in U.S. – continue to advocate for ratification

7. Other Antecedents of Supported Decision Making Expansion of the Self Determination movement Expression of the importance of choice and autonomy in recent HCBS settings rule Language in the Affordable Care Act regarding self-direction across federal programs Olmstead and related decisions

8. SDM Bottom Line Supported Decision Making is a right not only to make decisions (with support if needed) but to have those decisions recognized and honored. SDM recognizes the use of non- speech communication.

9. Supported Decision Making (SDM) Definition SDM is relationships, arrangements, and agreements that assist a person with a disability to make and communicate important decisions. People with disabilities may choose one or more trusted support persons to assist them including: peer support community support networks natural supports (family, friends) or representatives (using a representation agreement).

10. Supported Decision-Making Is: Accessible and available to all – lack of resources should not be an excuse Support based on the will and preferences of the person (and not on presumed best interests). Legal recognition of the support person(s) chosen by the person. Person has right to terminate or change supporter. Others can verify and object if supporters are not following person’s preferences. Formal support - Registered supporters available for important decisions of legal relevance. Informal support - for more everyday decisions.

11. Common Types of SDM Generally Informal conversations for advice with friends, family members, peer support, self-advocates Advance directives for health care, “living wills” Durable power of attorney Health care power of attorney Interpreting close personal contact between two people with ID/DD to mean they wish to be intimate (even when non-verbal)

12. SDM Compared to Guardianship Guardianship Decision making rights are removed from person and given to another person Guardians make decisions for a person with ID/DD -- even if the guardian consults with the person. Guardianship is rarely removed or reduced Decisions in best interest standard (evolving now to person’s preferences) Supported Decision Making Person keeps all decision making rights Person makes decisions with help from those they select (even when extensive support to communicate and express decisions is necessary). Allows change as person’s preferences/needs change. Personal preferences more important than best interest.

13. What do NCI Data Tell Us About People with ID/DD

14. What is NATIONAL CORE INDICATORS (NCI)? NASDDDS, HSRI & State DD Directors –Multi-state collaboration –Launched in 1997 in 13 participating states – now in 45 states (including DC) and 22 sub-state areas Goal: Measure performance of public systems for people with intellectual and developmental disabilities by looking at outcomes –Help state DD systems assess performance by benchmarking, comparing to other states –Domains: employment, community inclusion, choice, rights, health, safety, relationships, service satisfaction etc. National Core Indicators (NCI)

15. NCI State Participation 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 OR MN UT CO KS MS TN SC WI MI IN VA DE MD New in 2015-16 New in 2016-17 CA*- Includes 21 Regional Centers OH*- Also includes the Mid-East Ohio Regional Council As of 2016-17: 46 states, the District of Columbia and 22 sub-state regions ME VT CT RI WY AK NV ID NE MTND IA WV

16. National Core Indicators (NCI) c Data Source: Adult Consumer Survey Standardized, face-to-face interview with a sample of individuals receiving services –Background Information - includes health information –Section I (no proxies allowed) –Section II (proxies allowed) No pre-screening procedures Conducted with adults only (18 and over) receiving at least one service in addition to case management Section I and Section II together take 50 minutes (on average)

17. What do the NCI Adult Consumer Survey data from tell us About 2014-15?

18. Characteristics of People with and Without Guardians

19. People with Full Guardianship More Likely to Live With Family

20. Of those in each residence type.....

21. People with Full Guardians Less Likely to Make Choices

22. Rights and Respect

23. Employment

24. Relationships Independent of guardianship Limited guardianship Full guardianship Has friends76%68%74% Can date with or without restrictions or is married 87%77%82%

25. Respondent is Legal Guardian or Conservator* Full Guardianship 72% 18-22 65% 23+ Limited Guardianship 6% 18-22 4% 23+ None 22% 18-22 31% 23+ * NCI Adult Family Survey 2014-2015

26. Summary At the big picture level, people under guardianship are less likely than adults not under guardianship to: Live in their own homes/apts and more likely to live in group homes (than people not under G) Be involved in making choices about their lives Have rights be respected Have community jobs or service plans with this goal Have friendships Compelling...

27. What did she say?