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UCEDD Issue Brief: Making the Case for Supported Decision-Making

Issue Statement

Individuals with IDD are considered equal under the law, which includes the right to choose where to live, agree to medical treatment, vote, enter into contracts, marry, manage finances, and exercise legal rights just like any other adult. Some individuals with IDD may need support exercising these rights. SDM is one way of supporting an individual with a disability by using friends, family members, and professionals to help the person with IDD understand the situations and choices they face.1 The belief that individuals with IDD are capable of making their own decisions is relatively new. Historically, most individuals with IDD have been subject to a restriction of their civil rights in the courts known as guardianship. While guardianship may be appropriate for some individuals, assumptions about the capabilities of people with IDD have resulted in guardianship being commonly used as the first and only option.
Nationally the number of adults under guardianship has tripled since 1995 with approximately 90% of guardianships being the most restrictive form.2 Many families report that physicians, school personnel or human service professionals recommend they seek guardianship when their young adults turn 18.
The Americans with Disabilities Act of 1990 was seminal civil rights legislation reflecting the changing perceptions of people with IDD. Together the self-advocacy and self-determination movements, families, providers, communities, and individuals are rethinking assumptions about the ability of individuals with IDD to make decisions.

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What is Supported Decision-Making?

Supported Decision-Making (SDM) is an approach to helping individuals with intellectual and developmental disabilities (IDD) make decisions including where they want to live, what services, supports and medical care they receive, whom they want to live with and where they want to work with the support of friends, family and trusted allies. SDM can be used by someone who has complete decision-making authority over their own life as well as by those who may have legal structures such as power of attorney or guardianship that assign decision-making authority to someone else.

The Waisman Center along with the Wisconsin Board for People with Developmental Disabilities and Disability Rights Wisconsin have been working together to explore and advance the understanding of supported decision-making for people with intellectual and developmental disabilities in Wisconsin. Following an invitational meeting convened by the Wisconsin Supreme Court Justice Shirley Abrahamson, work began on a Wisconsin law to create supported decision-making agreements. The law was passed in 2018. This brief offers an overview on supported-decision-making and ideas to support the practice. For more information contact:
Elizabeth Hecht
Outreach Specialist for Public Policy

Background

As more people with IDD live in the community instead of institutional settings we have the opportunity to think about new ways to support people to make decisions about their day to day lives. Additionally, research on brain development and functioning indicates that the brain continues to mature well into a persons 20’s potentially impacting decision-making. Furthermore, learning and life experience can improve decision making.
Historically, guardianship has been the way to provide decision-making supports. Guardianship is a legal process resulting in a decision by the court finding the individual with IDD incompetent. A person, institution or agency is given authority to make decisions on behalf of the individual. Current Wisconsin law requires that decisions should be made with input from the individual with IDD, but there is no guidance, criteria or enforcement of this requirement.
While the loss of decision-making control is supposed to guarantee the safety of the person with IDD, there is growing concern that the opposite may actually be true. Evidence suggests that using formal systems of substituted decision-making can reduce inclusion, selfdetermination and community integration, in violation of the ADA and other federal laws.3 Studies increasingly link self-determination, the right to make choices and decisions about important parts of ones life, to a better quality of life.4 For example, students who were more self-determined did better across multiple life categories, including employment and access to health and other benefits, financial independence, and independent living.5 Increases in self determination leads to better health, greater independence, better employment, and the ability to avoid and resist abuse.
While guardianship has been the typical way to support individuals with IDD, there are risks with guardianship. These include:
• Being found incompetent can be painful, emphasizing what the person can’t do rather than their strengths. The person may feel labeled as second-class and feel a loss of dignity and respect. They may be viewed by others as not worth listened to. People labeled incompetent and placed in guardianships are often deprived of selfdetermination and the opportunity to direct their own lives. People can experience low self-esteem, and feelings of inadequacy and incompetency, decreasing their ability to function.
• In addition to the social impact of guardianship, individuals who are considered incompetent can be at greater risk for abuse and exploitation by others. This is because they either are not allowed to “say no” or may see themselves as incapable of making decisions.
• Similarly, a person who has decisions made by someone else will have fewer opportunities to learn and practice decision-making skills.
The use of SDM does not eliminate the need for guardianship for some individuals. Even in situations where guardianship is needed, it is still possible and in fact essential that the wishes and preferences of that individual are understood and respected when decisions are made on their behalf. Guardianship should, to the greatest extent possible, support the self-determination of the individual with IDD. Guardianship is an important tool when an individual is:
• unable to make decisions or give consent;
• exercise their rights;
• take action to protect themselves from abuse, neglect, or exploitation or;
• in need of an advocate to speak for their interests.

Emerging Practice

Regardless of disability, many people use SDM throughout their lives. They seek the advice of friends, family, and professionals to help understand situations and choices they face. This helps them make the best decisions possible based on the available information. And like most of us, we have the opportunity to learn from our mistakes. This is no different for most individuals with IDD. SDM offers an approach to supporting individuals with IDD that assumes each person has gifts to contribute and areas where they need help making decisions. With SDM friends, professionals, and family members advise and support the individual through important decisions. In addition to the informal supports offered by friends and family, SDM can also be used with legal tools such as advance directives, powers of attorney for health care, and arrangements for financial decisions.

Families often seek information about SDM just before or when their child reaches age 18. Their primary fears are for their child’s safety and their ability to make health and financial decisions. Many families are unaware of the tools available for SDM including Supported Decision-Making agreements. Increasing the awareness of professionals including social workers, doctors, school staff, or attorneys who counsel families about options is critical to changing current practice. Similarly, disseminating information to courts, judges and guardians ad litem is a priority as they represent individuals with IDD as decisions are made about the need for restrictions to their civil rights.

“The United Nations Convention on the Rights of Persons with Disabilities calls out the need for supported decision-making in Article 12 stating: “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.”

CRPD 2006

In order for those supporting an individual with IDD to make decisions, professionals often require documentation to communicate with the person/s serving in a supportive role. Increasingly families and individuals are looking for a range of tools. A continuum of SDM tools from least to most restrictive include:
• Supported decision-making agreements6 are customized plans for support, identifying trusted individuals to help with decision-making. The Supported Decision-Making agreement can be used as an alternative to guardianship or within a guardianship. It provides guidance and a way to make decisions that involves supporters trusted and chosen by the individual with IDD.
• Releases of information that allow another person to interact with medical providers, school staff and other agencies who work with the individual with IDD.
• Powers of attorney for healthcare and finances identify another individual with the authority to make medical or financial decisions.
• Guardianship is a legal process by which a designated individual assumes the role of decisionmaker for an adult who is deemed unable to make such decisions for himself/herself. Guardianship can be limited and can be of the person, estate or both.

Word art with words about supported decision-making. The largest words are Freedom, Family, Health, Allies, Decision-Making, Medical, Vote, Friends, and Home.

RecommendationsFive young adults with coats on smiling together. One young woman is laughing leaning back, looking at the other young adults. Trees in the background.

  • Many community partners have a role in sharing information about decision-making options for people with disabilities. The following recommendations offer considerations across systems for communicating with families and people with disabilities about SDM.
  • Offer professionals working in school, human services and health care settings information about the range of SDM options and resources. Encourage them to share this information with families of transition age youth to help them make informed decisions about how best to support their young adult.
  • Wisconsin law requires the use of the least restrictive option when considering guardianship. Educate judges, attorneys and guardian ad litem about the range of decision-making tools available.
  • Include skill-building opportunities in school and health education that allow students with IDD to explore and practice decision-making.
  • Develop and disseminate educational resources to families and young adults to help them as they make decisions at age 18.
  • Access to and the use of technology can mitigate some of the decision-making needs of an individual. Disseminate information about the use of technology to support decision-making.
  • Disseminate information about community resources available to everyone that supports various aspects of life skills management.

References

  1. Shogren, K. A., Wehmeyer, M.L., Martinis, J., & Blanck, P. (2019). Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Cambridge University Press.
  2. Jameson, M., Riesen, T., Polycronis, S., Trader, B., Mizner, S., Martins, J., Hoyle, D. (2015). Guardianship and the Potential of Supported Decision Making with Individuals with Disabilities. Research and Practice for Persons with Severe Disabilities Research and Practice for Persons with Severe Disabilities.
    40(1) 36–51
  3. Salzman, L. Rethinking Guardianship (Again): Substituted Decision Making as a Violation of the Integration Mandate of Title II of the Americans with Disabilities Act. (2010) University Of Colorado Law Review, 81, 157-245.
  4. Khemka, I., Hickson, L., & Reynolds, G. (2005). Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse. American Journal on Mental Retardation, 110, 193–204.
  5. Wehmeyer, M. L., & Palmer, S. (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of selfdetermination. Education and Training in Developmental Disabilities, 38(2), 131–144.
  6. 2017 WISCONSIN ACT 345 – Wisconsin Chapter 53