Posted on August 29, 2017

By Mary Kay Rizzolo, CQL President and CEO

We make all sorts of decisions of varying significance every single day. Some of these are fairly trivial, such as what we are going to eat for dinner, which movie we will see after, or if that refill of popcorn is actually a good idea. Other decisions are very important, like whether we should accept that recent job offer, purchase a new home, or start saving for retirement. In nearly every decision we make, we’re relying on some form of support in making that decision. We may look at online reviews for a restaurant, ask a friend if that superhero movie is worth seeing, or check with a significant other, before getting that second bucket of popcorn. For big decisions, we may consult with a colleague about a career path, talk with a mortgage broker before buying that house, or work with a financial advisor to invest for our future.

Historically, when people with intellectual and developmental disabilities have been deemed incapable of making decisions independently, the option is full or limited guardianship. With guardianship, someone else is given responsibility for decision making authority, often based on preconceived ideas about disability, myths and prejudice about intellectual capacity, limited networks, and variations in communication methods.

Supported Decision-Making (SDM) is an alternative approach in which people make their own choices and express personal preferences with the assistance of family members or someone they trust. SDM can be used to help people exercise the right to self-determination by empowering people to make their own legally-enforceable decisions rather than simply appointing someone else to make decisions for them.

The Importance of Supported Decision-Making

By Angela Rapp Kennedy, CQL Vice President of Special Projects

Aspirations of autonomy are inherent in all of us. People naturally want to be independent, directing what happens in their life, and being invested in the outcome of the decisions they make. The right to self-determination is a fundamental right, and is the foundation for promoting opportunities for a person with disabilities to participate in the decision-making process in all aspects of their life. Self-determination recognizes that all people are valuable, and deserve to be treated with the respect and consideration that everyone has a right to expect.

SDM helps people develop a sense of control over their own lives, teaches them that they are responsible for themselves, supports them to become more assertive, and therefore, less vulnerable to exploitation, while also establishing an environment of positive and healthy relationships with others. When people are supported to make decisions for themselves, they are also perceived as more capable by others and more valuable in their community.

There is often underlying fear surrounding a shift from full or plenary guardianship, to SDM, particularly from family members. But, there are ways to address these concerns. Opportunities can be provided for families to explore the basis of their fears, where they can hear SDM success stories, identify peer to peer support strategies, and better understand the desire for self-determination. Information can be provided regarding tools and techniques to assist people to make informed decisions, supporting families to respect each person’s right to make decisions.

According to the report ‘Independent but not Alone,’ this is what people with intellectual disabilities are saying:

• We want to have our voice heard and acknowledged
• We want to be accepted for who we are
• We want to make our own decisions
• We want to be asked for our view and opinion on things
• We want to be treated the same as other people
• We want to have the same rights and opportunity to do things, with support only when needed

Supported Decision-Making in the United States

By Carli Friedman, CQL Director of Research

SDM is growing in prominence, and an increasing number of stakeholders in the United States are interested in implementing it. In fact, the American Bar Association recently (August 2017) adopted a resolution to promote the prioritization of SDM over more restrictive forms of guardianship – aiming to ensure guardianship is “a last resort” (p. 1). In doing so, the Bar Association resolution also urges guardianship statutes and courts to consider SDM, both as an alternative to guardianship placement, and a pathway for returning rights to those who already have guardianship. Despite these latest developments, SDM has yet to be used on a consistent basis legally, and there is still little understanding or evidence that supports SDM, or identifies or describes best practice approaches.

literature that applies to the use of SDM within the United States. In July of 2017, CQL released a white paper titled ‘Supported Decision Making in the United States’ which describes policy, procedure, and practice approaches to SDM. The whitepaper, funded by the New York Developmental Disabilities Planning Council, utilizes pertinent empirical SDM evidence to provide insight and inform stakeholder groups of best practices and benefits of SDM over other forms of legal representation.

Our findings revealed SDM uses a social justice lens to provide for a much greater pragmatic approach to legal determinations concerning an individual’s personhood, and legal and human rights. While there are serious concerns that without formalized mechanisms this approach has the potential to be abused, SDM upholds a philosophic view that all people are interdependent when making decisions. SDM also honors self-advocates’ call for equality, autonomy, and self-determination to make decisions – and at times take risks – as a part of full personhood.

Next Steps For Supported Decision-Making

By Cathy Yadamec

Those embracing SDM first need to presume competence, and start with the outlook that all people can make decisions, do make decisions, and have the right to make decisions. While it may seem obvious, it is also important to recognize that people learn more as they have more experiences, and that advancements made in decision-making works to increase capacity for additional decision-making in the future. Agencies and support networks can increase decision-making capacity by providing information about what rights and responsibilities are, how to make decisions, how to exercise rights, and why exercising rights and responsibilities is important.

Questions You Should Ask:

• What is the decision?
• Who are the right people and when is the right time to assist?
• What is the right communication method to explore decisions?
• What is the right information to share, that will help in the decision-making process? (e.g., benefits, consequences, risks)
• How can we assist the person to evaluate options?
• How do we listen to, and understand, the person’s decision? (e.g., a tool like CQL’s Personal Outcome Measures®)
• How can we support the person to take action?

When providing support and assisting the person in learning about options and choices for decision-making, it is important to present information that is clear and easily understood by them. If it is written, the information must be accessible and easy to read, with plain language and no jargon. It is also helpful to share that information through different mediums, such as video or audio formats. Being open to making mistakes is also a crucial component of SDM, as people will learn from their mistakes and gain new insight and experience that they can apply in the future. Sometimes, the challenge of the supporter is to help people learn from the decisions they make without judging or making the person feel like they have failed. Helping people think through the outcomes – both intentional and unintentional consequences – promotes informed decision-making. Prior to the actual decision-making, you can a use ‘tester sessions’ to practice the decision-making process and work thorough those consequences. Talking after someone makes a decision, whether it resulted in the desired outcome or not, helps prepare the person for more decision-making opportunities.

Guidance For Agencies and Systems:

• Establish a culture that promotes SDM by actively learning about and honoring people’s decisions
• Develop personalized plans for SDM as a resource for leadership, staff, people supported, and their networks
• Draft a signed agreement that identifies who will be providing support and details the responsibilities and the limitations of the supporter
• Ensure that there are procedures for staff when they have to support someone in doing things that may not be the “best” decision
• Provide training, education, and success stories for families and other loved ones who have concerns about SDM
• Propose and/or promote legislation that advances SDM efforts in your state

While this article provides an overview of Supported Decision-Making, why it’s important, how it’s being utilized in the United States, and information on embracing it within your organization, it is by no means a comprehensive resource with all applicable information. CQL offers a one-day on-site training covering SDM, that agencies can schedule at their offices. This training offers a dynamic and interactive workshop about SDM, including practical and applicable steps to embracing and implementing SDM approaches within your agency.

Additional Resources:

Center For Future Planning

The Center For Future Planning initiative from The Arc provides information about decision-making and archived webinars about SDM

The National Resource Center for Supported Decision-Making

The National Resource Center for Supported Decision-Making brings together partners in SDM from many groups, including older adults, people with I/DD, family members, and professionals. On this website you will find success stories to learn about people like Jenny Hatch and Ryan King who challenged their guardianship and are using the SDM model in their lives. There are many resources to help you learn about SDM and keep up to date on what is happening in the United States.

Independent But Not Alone

A 2014 global report from Inclusion International about SDM, including information about decision-making rights, self-advocacy, family-related issues, international law, and more.

PRACTICAL Tool for Lawyers

The PRACTICAL Tool aims to help lawyers identify and implement decision-making options for persons with disabilities that are less restrictive than guardianship.

The Right To Make Choices

This guide, The Right To Make Choices, from Autistic Self Advocacy Network (ASAN) provides people with disabilities with information about the different types of SDM laws in various countries, and how they work.