Legal Basics: Supported Decision-Making

Courtesy of the  National Center on Law & Elder Rights NCLER


CHAPTER SUMMARY • JULY 2017
David Godfrey, American Bar Association Commission on Law and Aging
American Bar Association Commission on Law and Aging

The American Bar Association Commission on Law and Aging (ABA COLA) is a collaborative and
interdisciplinary leader of the Association’s work to strengthen and secure the legal rights, dignity, autonomy,
quality of life, and quality of care of aging persons.

The Commission accomplishes its work through research, policy development, advocacy, education, training,
and through assistance to lawyers, bar associations, and other groups working on issues of aging.
Key Lessons
1. Supported Decision-Making (SDM) is a person-driven decision-making model that, with advice and
guidance from trusted advisors, empowers a person with limited or declining capacity to make choices.
2. SDM starts with the principles that all individuals, as long as they are able to communicate, have a
fundamental ability and right to make choices, that adults normally engage advisors to assist with life’s
decisions and that choices of the individual should be honored.1 The ultimate outcome of SDM is to
protect the fundamental human and constitutional rights of persons with disabilities including persons
who are experiencing a decline in memory and cognition.
3. An assessment guide and tool kit (the “PRACTICAL Tool”) helps lawyers and other professionals
evaluate SDM as an alternative to guardianship or conservatorship, or as a guide to alternatives that may
lead to restoration of rights by terminating or modifying guardianship.2
4. The advisors in SDM should be legally empowered as agents to assist the person as needed with carrying
out the decisions of the person. Instructions on utilizing SDM principles should be drafted into advance
care planning documents.
5. States are increasingly recognizing formal SDM agreements, which formalize the relationship between
the person, the advisors and agents.
What is Supported Decision-Making?
Supported Decision-Making (SDM) is a person-driven decision-making model based on the assumption
that all persons seek advice and guidance with making decisions; that all persons, as long as they have the ability
to communicate, have the ability and right to make choices; and that the choices of the individual should be
honored.3 By applying these principles to decision-making for individuals across the spectrum of capacity, we
empower persons with disabilities including those experiencing changes in memory and cognition.
SDM gained traction in advocacy for adults with disabilities4 and is expanding as a model for helping older
adults experiencing a decline in memory and cognition. SDM can be a viable alternative to guardianship or
conservatorship.5
We all engage in SDM. When we seek assistance from a doctor, lawyer or accountant, we are asking that
person to serve as an advisor, helping us to understand the issue, asking the advisor to offer us choices and
explain the risks and benefits of the options, to answer our questions, and ultimately to support us, while
Chapter Summary 2
allowing us to make choices.6 The spectrum of issues where SDM will provide benefit will vary based on the
person’s life experience and ability. A person with less experience or ability will need advice and guidance with a
broader range of issues than a person more life experience and greater ability.
The concepts behind SDM are nothing new. What is new is utilizing the principles to help persons with
disabilities, including changes in memory and cognition, maintain control of their lives by working with
supporters to understand issues and options, receive guidance and help to make choices and decisions about
simple and complex issues.
In SDM, persons with a disability select individuals whom they trust to support their decision-making.7 The
supporters may be known as supporters, advisors, partners, or agents. Their role is to help the person understand
the issue and the options, offer advice, allow the person to make a choice, and help carry out that choice.8
SDM is a balancing point9
Everyone needs help with making decisions, but adults with disabilities need more help and are particularly
vulnerable if left unassisted. The paternalistic model of someone making decisions for a person with a disability
takes away the fundamental human and constitutional right of choice. The right to make personal choices was
confirmed in 1965 by the Supreme Court in Griswold v. Connecticut as part of a “penumbra of rights” in the bill
of rights, which the court described as predating the Constitution.10
SDM seeks a balancing point that empowers the person to make choices, with advice and guidance.
A PRACTICAL Guide for SDM
The PRACTICAL Tool, developed by the ABA Commission on Law and Aging with other partners, is
designed to help professionals review decision-making options and overcome obstacles to implement a plan for
SDM for a person with disabilities. The Tool is available at: americanbar.org/content/dam/aba/administrative/
law_aging/PRACTICALGuide.authcheckdam.pdf.
The steps in the PRACTICAL Tool are:
Presume that guardianship is not needed. For too long the default answer for assisting a person with a
disability was to file for guardianship or conservatorship. Guardianship or conservatorship should be the last
resort, only if all reasonable alternatives fail.
Reason. Clearly identify the reasons for concerns. This section of the guide contains a detailed checklist
of issues the person with a disability may or may not need help with. Understanding the true needs of the
individual is essential to tailoring solutions that are least restrictive.
Ask if the concern is caused by a temporary or reversible condition. Illness or injury where recovery is likely
can create a temporary disability. Permanent action should be delayed and time should be allowed for recovery
and healing.
Community. The vast majority of care is provided by family, friends, and community based services. These
resources are essential in building the supports needed for SDM. SDM should include a full exploration of
available community based resources to help each person.
Team. Ask an individual trusted by the person to provide help in making decisions. Many people already
have in place an informal circle of family and friends that can fill the role of advisors/agents for SDM.
Identify the abilities and needs of the person. SDM assistance should be limited to areas the person needs
help with.
Chapter Summary 3
Challenges presented by potential SDM advisors or agents. It is important to carefully review and address
concerns about challenges presented by the advisors or agents selected to support the person in decision-making.
Appoint advisors and empower them as legal agents to carry out the choices of the person. Giving the
advisors legal authority makes it possible for the SDM choices to be implemented when third parties question
the capacity of the person with a disability to make choices, or when the person with disabilities needs help
carrying out those choices.
Limit any guardianship or conservator appointments to only the issues absolutely needed. Limited
appointments preserve the human and constitutional rights of the person with a disability.11
SDM Agreements and Advance Care Planning
An SDM agreement is a contract between the person with a disability and the person or persons agreeing
to serve as advisors.12 An SDM agreement describes the issues the person wishes to receive help with, and other
terms or limitations.13 Currently laws in Texas and Delaware recognize SDM agreements, with adoption of
similar laws expected in other states.14 The Texas statute includes a core statutory form; the Delaware law directs
the state cabinet to develop a standard form agreement.15 These statutes urge courts to consider SDM before
guardianship and to consider the SDM agreement as a valid alternative to guardianship. If health care is within
the scope of SDM, the SDM agreement should include language addressing HIPAA concerns.16 Additional
terms can be drafted into SDM agreements such as limitations on spending by the person, limitations on certain
business transactions without express mutual agreements, agreements to provide spending money to the person
with a disability without need for accounting, and terms and conditions for termination by either party to the
agreement.
SDM should be included in powers of attorney and advance care planning documents. The advance care
planning documents should instruct the agent to engage in SDM on all health care decisions. The agent or
surrogate should be asked to always explain the health care issue, options and recommendations and seek input
from the person, even if the person appears unable to understand. It is important to remember that sometimes
the person who has lost the ability communicate has not lost the ability to understand.
Is SDM Always the Answer?
SDM should always be considered before guardianship or conservatorship.17 SDM will not work if it is truly
impossible for the person with a disability to communicate a choice, decision, or preference. Every effort should
be made to communicate with the person. Communication can be time consuming, often it is necessary to
break complex issues down into small sub-issues and ask for many minor preferences that add up to the ultimate
choice.18 For persons who are experiencing a decline in memory or cognition,19 the advisor will be better
prepared to make decisions based on the person’s know goals and values if SDM is started early in the illness
before significant assistance is necessary.
If the person with a disability is being abused or neglected, SDM may be difficult. For SDM to succeed, the
advisors or agents must be trustworthy.
Conclusion
SDM allows persons with a disability, including those experiencing changes in memory or cognition, to
make decisions or choices, with advice, assistance and guidance from supporters of their choice. The role of the
supporter is to help the person understand the issues, options and choices, to offer advice, but ultimately to
allow the person to make a decision, choice or preference and to help as needed to carry out the choice of the
person. SDM is a viable alternative to guardianship or conservatorship in many cases. SDM is a person centered
planning process and a person driven decision-making model that should be incorporated into advance planning
and health care planning. SDM protects the human and constitutional rights of persons with disabilities.
Chapter Summary 4
Additional Resources
• David Godfrey, david.godfrey@americanbar.org
• Administration for Community Living—Supported Decision-Making:
»» acl.gov/programs/consumer-control/supported-decision-making-program
• American Bar Association—Resources on Supported Decision-Making:
»» americanbar.org/groups/law_aging/resources/guardianship_law_practice.html#sdm
• American Bar Association—PRACTICAL Tool home page:
»» americanbar.org/groups/law_aging/resources/guardianship_law_practice/practical_tool.html
• National Resource Center on Supported Decision-Making:
»» supporteddecisionmaking.org
Case consultation assistance is available for attorneys and professionals seeking more information to
help older adults. Contact NCLER at ConsultNCLER@acl.hhs.gov.
This Chapter Summary was supported by a contract with the National Center on Law and Elder Rights, contract
number HHSP233201650076A, from the U.S. Administration on Community Living, Department of Health and
Human Services, Washington, D.C. 20201.
Endnotes
1 Jonathan G. Martinis, Supported Decision-Making: Protecting Rights, Ensuring Choices, 36 BIFOCAL 107 (May-June 2015).
2 A PRACTICAL Tool for Lawyers: Steps in Supporting Decision-Making (Amer. Bar Assn. 2016), available at americanbar.org/
groups/law_aging/resources/guardianship_law_practice/practical_tool.html.
3 Peter Blanck and Jonathan G. Martinis, The Right to Make Choices The National Resource Center for Supported Decision-Making, 3
Inclusion 24 (2015), available at bbi.syr.edu/publications/2015/SDM_Overview.pdf.
4 See National Resource Center for Supported Decision-Making website at supporteddecisionmaking.org.
5 See Id. for examples.
6 Id.
7 Nina A. Kohn, et al., Supported Decision-Making: A Viable Alternative to Guardianship?, 177 Penn. St. L. Rev. 1111 (2013).
8 Blanck and Martinis, supra note 3.
9 Brainstorming Guide: How Are We Already Using Supported Decision-Making, available at supporteddecisionmaking.org/sites/
default/files/sdm-brainstorming-guide.pdf.
10 Griswold v. Connecticut, 381 U.S. 479 (1965).
11 PRACTICAL Tool, supra note 2.
12 Kohn, et al., supra note 7.
13 The National Resource Center for Supported Decision-Making provides model agreements at supporteddecisionmaking.org/legalresource/
supported-decision-making-model-agreements.
14 The Texas Supported Decision-Making Agreement Act, Tex. Estates Code § 1357.001 et seq.; Delaware Supported Decision-
Making 80 Del. Laws, c. 427, § 1.
15 The Texas Supported Decision-Making Agreement Act, Tex. Estates Code § 1357.001 et seq.; Delaware Supported Decision-
Making, 80 Del. Laws, c. 427, § 1.
16 See model agreements, supra note 14.
17 Kohn, et al., supra note 7.
18 Victoria State Gov’t, Communication for people with disabilities, available at dhs.vic.gov.au/for-business-and-community/
community-involvement/people-with-a-disability-in-the-community/communicate-and-consult-with-people-with-a-disability/
communication-with-people-with-disabilities. See also Dep’t Homeland Sec., A Guide to Interacting with People who have
Disabilities, available at dhs.gov/sites/default/files/publications/guide-interacting-with-people-who-have-disabilties_09-26-13.pdf.
19 Alzheimer’s Assn., Communication and Alzheimer’s, available at alz.org/care/dementia-communication-tips.asp; see also Nat’l
Health Serv., Communicating with someone with dementia, available at nhs.uk/Conditions/dementia-guide/Pages/dementia-andcommunication.
aspx.


​The High Cost of Elder Financial Abuse

Prior to this report, the most frequently cited estimate of the amount of money lost to elder financial abuse was $2.9 billion. In the fraud research community, we have long suspected that this was an underestimate. In fact, it is a dramatic underestimate: our research reveals that seniors lose $36.48 billion each year to elder financial abuse. This is more than twelve times what was previously reported. Approximately 36.9% of seniors are affected by financial abuse in any five-year period.

Breakdown of the problem

Financial exploitation: $16.99 billion is lost annually to financial exploitation, defined as when misleading or confusing language is used—often combined with social pressure and tactics that take advantage of cognitive decline and memory loss—to obtain a senior’s consent to take his or her money.  Criminal fraud: $12.76 billion is lost annually to explicitly illegal activity, such as the grandparent scam, the Nigerian prince scam, or identity theft.
Caregiver abuse: $6.67 billion is lost annually to deceit or theft enabled by a trusting relationship—typically a family member but sometimes a paid helper, friend, lawyer, accountant, or financial manager.

Sources of risk

People often assume that those perceived as most vulnerable— widows, the very old, people with severe memory loss—are at greatest risk. In fact, risk equals vulnerability plus exposure. Seniors who are young, urban, and college-educated lose more money than those who are not.  Some sources of exposure were surprising. Seniors described as extremely friendly lose four times as much to elder financial abuse, perhaps because they are approachable and may give strangers the benefit of the doubt. Financially sophisticated seniors lose more to fraud, likely because they are comfortable moving larger amounts of money around. Thrifty seniors lose five times as much to fraud, perhaps because they are enticed by bargains.

 The exploitation progression

Small losses are evidence of an underlying vulnerability. What seems like an isolated incident is often the first step in a financial exploitation progression. A senior who lost as little as $20 in a year to exploitation could be expected to lose $2,000 a year to other types of fraud.  A person who receives just one telemarketing phone call per day is likely to experience three times as much financial loss as someone who receives no or only occasional telemarketing calls.

Non-financial effects

Financial abuse frequently results in reduced emotional and physical health for seniors. We estimate that 954,000 seniors are currently skipping meals as a result of financial abuse.

Research methodology

The primary source of data analyzed in this report is the 2015 True Link Senior Vulnerability Survey, a survey of family caregivers for older Americans that includes 2,335 cumulative years of data on incidents of financial abuse. The design of this survey was guided by the recommendations of an expert panel of fraud researchers convened by the Financial Fraud Research Center at the Stanford Center on Longevity.

What is Supported Decision Making SDM?