Supported Decision Making as an Alternative to Guardianship

Supported Decision Making: A Useful Alternative to Guardianship Michael R. Gray October 10, 2024

What IS Supported Decision Making? Plans fail for lack of counsel, but with many advisers they succeed. King Solomon, 950 BCE

Supported Decision Making As A Disability Support or Accommodation We propose a new paradigm for decision-making that recognizes that self- determination and autonomy can be expressed in the context of relationships with others, and that interdependence, not only independence, is a valid and meaningful way of making choices and decisions. Alternatives to Guardianship: Report of the Canadian Association for Community Living (CACL) Taskforce, August 1992.

Decisional Capacity Decision-making capacity reflects the functional abilities that a person needs to possess in order to make a specific decision, and it is evidenced by the decision-maker s ability to provide a reasoned rationale for his or her decision. Adapted from: Aparna Atluru, M.D. Revisiting Decision-Making Capacity, American Journal of Psychiatry, 16 Mar 2017, https://doi.org/10.1176/appi.ajp-rj.2016.111105

Virginia Code 54.1-2983.2 (A) Every adult shall be presumed to be capable of making an informed decision unless he is determined to be incapable of making an informed decision in accordance with this article .

Capacity vs Competence Competency is a global assessment and legal determination made by a judge in court. Capacity is a functional assessment and a clinical determination about a specific decision that can be made by any clinician familiar with a patient s case. https://www.the-hospitalist.org/hospitalist/article/124731/how-do-i-determine-if-my-patient-has-decision-making-capacity

Decisional Capacity: Criteria 1. Recognize/acknowledge the problem, 2. Understand and compare possible solutions and the likely consequences of each, 3. Make a reasoned decision, and, 4. Communicate that decision Adapted From: Aparna Atluru, M.D. Revisiting Decision-Making Capacity, American Journal of Psychiatry, 16 Mar 2017, https://doi.org/10.1176/appi.ajp-rj.2016.111105; See Also: Andy Odden, MD; Department OF; Joyeeta G. Dastidar, MD, The Hospitalist, August 3, 2011.

The Right To Make Poor Decisions Self-determination is the right all people have to make personal decisions, set their own goals, and decide how to work towards their goals. Dignity of risk means being able to make choices that could have negative consequences and getting to experience those consequences. Mental Health and Developmental Disabilities National Training Center Fact Sheet, Self Determination & Dignity of Risk: West Virginia University. (n.d.). Self Determination. Retrieved July 07, 2020, from http://cedwvu.org/resources/selfdetermination/ ; Shouse, J. (n.d.). The Dignity of Risk. Retrieved July 07, 2020, from http://www.tennesseeworks.org/thedignity-of-risk/

Common Misunderstandings About Capacity *A person who lacks decision-making capacity in one area of life lacks capacity in all areas of life. *Everyone who has an Intellectual or Mental Disability is incompetent. *Lack of decision-making capacity is permanent. *Patients who have not been given relevant information about their condition can lack decision-making capacity. *All patients with certain psychiatric disorders lack decision-making capacity. *All institutionalized patients lack decision-making capacity. Source: Ganzini L, Volicer L, Nelson WA, Fox E, Derse AR. Ten myths about decisionmaking capacity. J Am Med Dir Assoc. 2004;5(4):263-267.

Incapacity Does Not Have to Be Permanent The Court makes the following findings, supported by clear and convincing evidence . * [(1) Respondent lacks capacity*], (2) There is no possibility of improvement in [her**] condition .April 2, 2009. * that respondent is not capable of learning self-care skills, adaptive behaviors, or social skills and will require help with activities of daily living. Respondent s condition is chronic and irreversible. Sept. 24, 2021.

How Can Supported Decision-Making Help Persons with Disabilities? Understand relevant information, issues, and available choices Focus attention in decision-making Help weigh options Ensure decisions are based on their own preferences Interpret and/or communicate decisions to other parties Salzman, L., Guardianship for Persons with Mental Illness A Legal and Appropriate Alternative?, 4 St. Louis Univ. J. Health Law & Policy 279 (2011).

Supported Decision Making In Virginia Originated as a social work concept Contracts established structures and relationships Which created less restrictive alternatives to guardianship

SDMAs and Guardianship Guardianship Statutes & Less restrictive alternatives C. In determining the need for a guardian or a conservator and the powers and duties of any guardian or conservator, if needed, consideration shall be given to the following factors: (i) the limitations of the respondent; (ii) the development of the respondent's maximum self-reliance and independence; (iii) the availability of less restrictive alternatives, including advance directives, supported decision-making agreements, and durable powers of attorney; (iv) the extent to which it is necessary to protect the respondent from neglect, exploitation, or abuse; (v) the actions needed to be taken by the guardian or conservator; (vi) the suitability of the proposed guardian or conservator; and (vii) the best interests of the respondent. Va. Code 64.2-2007(C).

Virginia Code 37.2-314.3 The Department shall develop and implement a program to educate individuals with intellectual and developmental disabilities, their families, and others regarding the availability of supported decision- making agreements, the process by which an individual with an intellectual or developmental disability may enter into a supported decision-making agreement with a supporter, and the rights and responsibilities of principals and supporters who are parties to a supported decision-making agreement. Va. Code 37.2-314.3(B). Powers and duties of the Department related to supported decision-making agreements; report.

How is SDM Different from Substituted Decision Making Instruments? Supported Decision Making Arrangements, such as Supported Decision Making Agreements, provide a framework of supports to help a PWD make decisions. Substituted Decision Making Arrangements, such as Advance Directive, Durable Powers of Attorney, Authorized Representative or Representative Payee appointments, and of course Guardianship and Conservatorship designate another person to make the PWD s decisions in her place.

Common Substitute Decision Making Frameworks Legal Guardianship--Va. Code 64.2-2000, et. seq. Durable Power of Attorney Va. Code 64.2-1600, et. seq. (Uniform Power of Attorney Act). Advance Directive Va. Code 54.1-2981, et. seq. (Virginia Health Care Decisions Act). Statutory Decision Makers--Va. Code 54.1-2986) DBHDS Authorized Representatives--12 VAC 35-115-10, et. seq. Judicially Authorized Treatment Order (Va. Code 37.2-1101

Packages: What if There Are Some Things I Just Can t Decide Even With Support? A Supported Decision Making Agreement may be supplemented by one or more Substituted Decision Making arrangements as may be needed to provide a good fit with a particular individual's strengths, weaknesses and support needs.

Preventing Supporter Abuse, Neglect and Exploitation Less Power = Less Chance of Abuse, Neglect or Fraud Keeping the Individual in the Driver s Seat Safety and Oversight Mechanisms In An SDMA

Strategy: Decision Making Packages The image on the right depicts a bar graph with three columns. The title of the graph is John Doe Decision Making. The first column is labeled Unsupported and is shaded approximately 1/5 yellow and 4/5 black. The second column is labelled Guardianship and is shaded entirely red. The third column is labelled Comprehensive Decision Making Package and is labelled approximately 1/5 red and 4/5 yellow.

Keeping the Client in The Drivers Seat: Drafting Defensively To Resist Future Efforts to Impose an Unwanted Substitute #1 Guardianship: A guardian need not be appointed for a person who has appointed an agent under an advance directive executed in accordance with the provisions of Article 8 ( 54.1-2981, et. seq., unless the court determines that the agent is not acting in accordance with the wishes of the principal or there is a need for decision making outside the purview of the advance directive. VA Code 64.2-2009(D):

#2: Conservatorship A conservator need not be appointed for a person (i) who has appointed an agent under a durable power of attorney, unless the court determines pursuant to the Uniform Power of Attorney Act ( 64.2-1600 et. seq.) that the agent is not acting in the best interests of the principal or that there is need for decision making outside the purview of the durable power of attorney, or (ii) whose only or major source of income is form the Social Security Administration or other government program and who has a representative payee. Virginia Code 64.2-2009(D)

3. Judicial Authorization of Treatment (Virginia Code 37.2-1101 G. Prior to authorizing treatment pursuant to this section, the court shall find: 1. That there is no available person with legal authority under Article 8 ( 54.1-2981 et seq.) of Chapter 29 of Title 54.1, under the regulations promulgated pursuant to 37.2-400, or under other applicable law to authorize the proposed treatment . 4 .the court shall not authorize a proposed treatment that is contrary to the provisions of an advance directive executed by the person pursuant to 54.1-2983

3. 12 VAC 35-115-146: Authorized Representatives. *An existing Durable Power of Attorney, Advance Directive, or Legal Guardian preempts appointment (assuming adequate scope to cover the decision) If an attorney-in-fact, health care agent or legal guardian is not available, the director shall designate a substitute decision maker as authorized representative in the following order of priority: .

#4: Representative Payees: GN 00502.085 (C)(i) An individual who is entitled to or is an applicant for a benefit under this title, title VIII, or title XVI, who has attained 18 years of age or is an emancipated minor, may, at any time, designate one or more other individuals to serve as a representative payee for such individual in the event that the Commissioner of Social Security determines under subparagraph (A) that the interest of such individual would be served by certification for payment of such benefits to which the individual is entitled to a representative payee. If the Commissioner of Social Security makes such a determination with respect to such individual at any time after such designation has been made, the Commissioner shall (I) certify payment of such benefits to the designated individual, subject to the requirements of paragraph (2); or (II) if the Commissioner determines that certification for payment of such benefits to the designated individual would not satisfy the requirements of paragraph (2), that the designated individual is unwilling or unable to serve as representative payee, or that other good cause exists, certify payment of such benefits to another individual or organization, in accordance with paragraph (1). (i) An organization may not be designated to serve as a representative payee under this subparagraph. Section 205(j)(1) of the Social Security Act (42 U.S.C. 405(j)(1)

A Quality Agent Makes All The Difference *Qualification and vetting *Selection *Preparation

Build in Checks and Monitoring Devices *Participation Provisions *Ulysses Provisions *Prophylactic Provisions for Large Transactions, Residence Changes, Etc. *3rd Party Supervision (reporting and/or revocation of agent auth)

Back at ya: The Magic of Participation Provisions Participation Provisions are various kinds of provisions which are designed to encourage or require agents to directly involve an incapacitated principal in the decision making process.

Prophylactic Provisions for Large or Important Decisions *What Situations Require Special Treatment? *How Will These Situation Be Determined (Criteria) *What Specific Precautions Will Be Required?

Special Precautions, (contd from previous slide). A client who lives in the community might want to require that special precautions be taken before a decision is made to change his residence (even a rental), dispose of his household goods, or admit him to a nursing home or assisted living facility. Depending on what is important to the individual, there might be other decisions she will want to define, set criteria for and craft special precautions to govern. In the case of health care, a person might require consultation with or approval of his primary physician before major medical interventions such as surgery, ECT or Chemo theraphy.

Third Party Reporting and Oversight *Reporting Requirements *Third Party Access to Records *Third Party Oversight & Revocation

Sample Language (NCLER) My agent shall keep complete records of all transactions on my behalf and provide a quarterly accounting to ___. The quarterly accounting shall include copies of all financial statements, credit card, or loan statements. Any transaction or series of related transactions totaling more than $___ shall require two signatures, the signature of my agent named in this document and the signature of ___. I authorize ___ to revoke this power of attorney on my behalf, if they believe the powers granted in this document are being abused.

More Sample Language (NCLER) My agent is not authorized to make gifts of my money or property. My agent is not authorized to change the beneficiary, payable on death, or transferable on death designations on any bank account, financial account, life insurance policy, pension, trust, annuity or similar contract or instrument, with the exception that my agent may assign a life insurance policy for the limited purpose of pre-paying funeral arrangements for me incident to an application for Medicaid benefits.

Summary: To Help Avoid Abuse, Neglect and Exploitation of Our Clients by Their Substitute Decision Makers We Can: 1. Create comprehensive SDMA-based packages not isolated substitution devices, 2. Use SDM to minimize the necessary scope and content of Substituted Decision Making devices, 3. Ensure that AD s and DPOA s are drafted defensively, to reduce the risk that an outside Substitute DM could be successfully imposed, 4. Counsel clients and caregivers regarding risks, detection of danger signs, and sources of help. 5. Assist clients in properly vetting and selecting their agents, 6. Counsel agents concerning their authority and responsibilities 7. Build appropriate agent checks and monitoring devices into the client s documents.

Protecting The Right to Support in Decision Making Those who seek to control, abuse or exploit a person with a decisional support arrangement, often begin with efforts to isolate and separate her from her decisional support arrangement and supporters. People who have decisional support arrangements need to know their rights to access their arrangements and their supporters.

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