Supported Decision Making

1. Supported Decision Making Laura Waterland, Esq., Community Legal Aid Society, Inc. Lexie McFassel, Esq., Office of the Public Guardian Terri Hancharik, Program Director EPIC, Parent-Advocate

2. Understand how Supported Decision Making came about in Delaware • Know the options for Decision Making in Delaware • Identify the difference between Supported Decision Making and other methods of decision-making assistance • Discuss capacity and who is able to use Supported Decision Making • Describe how Supported Decision Making works in Delaware • Describe efforts towards use of Least Restrictive Alternatives Objectives

3. Creating Supported Decision Making in Delaware • In 2006, the General Assembly of the United Nations adopted the Convention on the Rights of Persons with Disabilities. The Declaration recognizes the right to autonomy and personal decision making. • Article 12 requires Parties to the Convention to “recognize that people with disabilities enjoy legal capacity on an equal basis to others in all aspects of life.. And to take appropriate measures to provide access by a person with disabilities to the support they require in exercising their legal capacity.” • Research shows that people with greater self -determination are more independent, more integrated into community life, better able to recognize and resist abuse and tend to have higher self –esteem. ( Presentation of Morgan Whitlach, Legal Director Quality Trust, June 2018 Presentation)

4. First Steps • This began a shift in approach to core decision making processes and increasing awareness that guardianship can be over-utilized in the absence of, or ignorance about, alternatives. • In 2014/2015, advocates in Delaware serving individuals with disabilities, and specifically the Division of Developmental Disabilities Services (DDDS), organized a working group which met over the course of two years. • Advocates included representatives from CLASI, DDDS,DSAAPD, the Developmental Disabilities Council, and the Governors Advisory Council for Exceptional Citizens, among others

5. Activities of Working Group • The group reviewed statutes from other jurisdictions • Only Texas had a statute at the time • Model statute • Statutes from British Columbia and Australia • Technical assistance from other advocates from ASAN and from Quality Trust • National focus on supported decision making • Administration on Community Living Initiative https://acl.gov/programs/consumer-control/supported-decision-making-program • DDC mini grant from Quality Trust • ABA Publications and Interest https://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice/ • DDC Activities • Video https://www.youtube.com/watch?v=dGJe5KyflxM&feature=youtu.be • Summit April 2016 • Research Collection

6. Legislative Process • Many, many drafts, debates about scope • Education ground work • Addressing concerns • Delaware Bar Association Elder Law Section • Advocacy groups representing families of individuals with disabilities • Importance of viewing SDM as part of a spectrum of possible supports • Other Approaches • Pilot programs • Litigation • More states are passing laws: Indiana law signed last week

7. Starting Point • The starting point in the law is a presumption that adults possess the capacity to undertake any legal task they choose, unless they have been adjudicated as incapacitated to perform the task in the context of guardianship. • The abilities that are relevant to a person’s capacity to make reasoned decisions: Ability to evidence a choice Ability to understand relevant information Ability to appreciate the situation and its likely consequences Ability to manipulate information rationally.

8. What is Supported Decision Making? • Supported Decision Making generally occurs when people with disabilities [or others] use friends, family members and professionals to help them understand the everyday situations they face and choices they must make, allowing them to make their own decisions without the need for a substitute decision- maker. (National Council on Disability, Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities, March 22, 2018, page 130, https://ncd.gov/publications/2018/beyond-guardianship-toward-alternatives). • Link to SDM form in Delaware: https://www.dhss.delaware.gov/dhss/dsaapd/files/supported_decision_making_agreement.pdf • More Information: National Resource Center for Supported Decision Making http://supporteddecisionmaking.org

9. Spectrum of Capacity The goal is to determine what the individual is able to do and then use that ability to resolve present and future decision-making challenges. Sooner rather than later. Guardianship should only be sought if there are no possible alternatives. Can they make their own decisions? Do they have a basic understanding of simple documents? Are these abilities increased with supports?

10. SPECTRUM OF CAPACITY IN DECISION-MAKING

11. Supported Decision Making v. Other Methods Supported Decision Making is process which maintains your individual right to make the decision utilizing assistance. The individual is presumed to have capacity and makes their own decisions. Other Methods: Surrogate Decision Making (even if you choose the surrogate), Durable Powers of Attorney (even if you still have capacity), Advanced Health Care Agreements, and Guardianship give the decision making power to another individual. The other individual makes the decisions for you on your behalf.

12. Decision making assistance options in Delaware A person with capacity may use: • Supported Decision Making • Representative /Substitute Payee • Case/Care Management systems • Release Forms • Durable Power of Attorney/immediate effect A person deemed without capacity may use: • Surrogate Decision Making (16 del C. Sec. 2507) • Advanced Health Care Directive • Durable Power of Attorney • Guardianship

13. All persons are presumed to have capacity and are able to use Supported Decision Making to assist them unless they have been determined to lack capacity.

14. Delaware Supported Decision Making Serves individuals who can make decisions, but who need or could benefit from assistance in gathering, reviewing, or interpreting information The role of the Supporter is to assist the adult in gathering and assessing information, and in evaluating the options, responsibilities and consequences of the adult’s life decisions, including those about health care, financial decisions, and support services. The Supporter is chosen by the Principal. The Supporter does not have individual authority to make decisions. Supported Decision Making Agreement must be signed by the adult, two witnesses, and the appointed Supporter. Agreement is executed and witnessed, and indicates what type of assistance is needed and what the supporter has permission to do. May be revoked by individual.

15. Elements to a Supported Decision Making Agreement Adult may enter in to a supported decision-making agreement when: • It is voluntary, in writing , and dated. • The adult understands the nature and effect of the agreement. • It designates at least 1 supporter. • Identify the types of decisions for which the supporter is authorized to assist, and which they may not. • The agreement must be signed by each party in the presence of 2 adult witnesses able to serve under Section 9405(A). • The agreement must be accompanied by a declaration page, signed by each supporter and in the presence of witnesses. • Declaration page must contain the supporters relationship to the adult; the supporter’s willingness to act as a supporter and supporter’s acknowledgement of the duties of a supporter. • Individuals who can serve as a supporter is limited by section 9406A(b)

16. Surrogate Decision Making • A surrogate may make health care decisions to treat, withdraw or withhold treatment for an adult patient if the patient has been determined by the attending physician to lack capacity and there are no alternatives. • This determination shall be confirmed in writing in the patient's medical record by the attending physician. • Without this determination and confirmation, the patient is presumed to have capacity and may give or revoke an advance health care directive or disqualify a surrogate. 16 Del.C. Sec. 2507

17. Who can be a Surrogate Decision-Maker? • The spouse, unless a petition for divorce has been filed; • An adult child; • A parent; • An adult sibling; • An adult grandchild; • An adult niece or nephew; • An adult aunt or uncle. OR Another adult, other than a paid caregiver, who exhibits concern for the patient, is familiar with the patient's personal values, and who is reasonably available may act if the adult patient is in an acute care setting or is a client of the Department of Health and Social Services and none of the listed individuals are eligible or available to act.

18. Terminating Guardianship • Rule 180-C(b)(1): If the Court finds that a guardian nolonger is necessary due to recovery of capacity of the person with a disability, the Court will make an order terminating the guardianship, restoring to the person with a former disability the care of his or her person or restoring to him or her the property and estate in the custody, possession and control of the guardian, or both...

19. Terminating Guardianship • Rule 180-C (b)(2) If the Court finds that guardianship is no longer necessary due to the availability of other measures and such measures are in the best interest of the person with a disability, the matter may be administratively closed without prejudice. An affidavit shall be filed with the Court specifying the means of substitute decision making to be used, and the consent of the individual responsible for utilizing it.

20. Terminating Guardianship • Court of Chancery website (guardianship): https://courts.delaware.gov/chancery/guardianship/index.aspx • On the “forms” website there is a form for termination due to recovery. https://courts.delaware.gov/Forms/Download.aspx?id=107108 • Forms for termination due to other available options: Are not on the Court of Chancery website.

21. Resources • Ten Myths About Decision-Making Capacity, A Report by the National Ethics Committee of the Veterans Health Administration”, September 2002; National Center for Ethics in Health Care, veterans Health Administration, Dept. of Veterans Affairs • Competency and the Capacity to Make Treatment Decisions: A Primer for Primary Care Physicians" Raphael J. Leo, M.D. Primary Care Companion J ClinPsychaitry 1:5, October 1999 • Advanced Health Care Directives and Durable Power of Attorney information: • AHCD 16 Del.C. 2503, http://www.dhss.delaware.gov/dsaapd/advance1.html • DPOA, 12 Del.C. Sec. 49A • http://www.dhss.delaware.gov/dltcrp/poa.html