Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

For the past 30 years the principle of self-determination has had a growing emphasis in the services, policies, and societal expectations that impact the lives of individuals with intellectual and developmental disabilities (IDD). We asked four individuals who’ve been deeply engaged with advocacy for this principle during that time to share their personal perspectives on where we’ve been and where we’re going in this country when it comes to the exercise of self-determination by people with IDD. Here are their reflections.

My Optimistic Vision: John Smith

In the next 10 years, my optimistic vision of self-determination and persons with intellectual and developmental disabilities (IDD) is that it will continue to expand and will become commonplace.  This will occur as the result of raised expectations among people with IDD and those in their support networks, and a greater number of options available to them in the major life domains, such as community living, education, and career development and employment. Such a vision builds on the trajectory of past decades that saw the development of home and community-based supports, and opportunities for competitive community-based employment with supports. Such innovations have transformed what once were choices among limited options that took people away from their communities, into open-ended decisions allowing people with IDD, with their support networks as desired, to create their own options based on personal interests and strengths.

Achieving this vision is dependent on many factors. Families, friends, educators, everyone must encourage people with IDD to dream big dreams, and have high expectations for their futures (and presents). We must continue to find ways to understand and honor the dreams and desires of people with the most significant disabilities who may not communicate clearly with words. It is also dependent on young people with IDD receiving instruction and encouragement to develop critical skills related to self-determination, such as choice and decision making; setting realistic, yet challenging goals; and problem-solving and personal advocacy skills to overcome barriers that sometimes get in their way. A significant threat to this vision is a shortage of the paid Direct Support Professionals people with IDD rely on. Promising practices to address these issues include building relationships into sources of natural support, and using technology to fill in the gaps.

What I’ve Learned About Families and Self-Determination: Sue Swenson

One of the things I learned as the mom of a person with complex developmental disabilities – my son Charlie – is that it was better for me, psychologically and morally, if I did everything I could to put him in charge of his own life. One of the key lessons I had to learn early was that he did not care one iota about pretending to be something he was not. Self-determination for Charlie meant honoring him as a disabled person and recognizing his inherent dignity, not trying to get him to behave as if he didn’t have disabilities.  

That is harder than it seems. Many times I felt shamed because I wouldn’t try to force him to behave as somebody else wanted him to behave, or do something that was not in his nature to do.  The way I saw it, he had precious little power in his life and I would be damned if I would take away his ability to say no. Which is not to say he didn’t bring everything he had to his work with therapists who were clearly on his side, working to make him stronger, working to put him in charge of his life.  

Self-determination, like everything else, begins in families. Self-determined people come from well-supported families. I was lucky. Through Partners in Policymaking, I had information and access to experts who had lived experience, and I had a good education to begin with.  

Families are inventing how to live with, love, and support people whose disabilities would have made them unlikely to survive in past decades. In the future, even next week, I hope we will recognize that given half a chance, families create self-determination. As psychologist Alison Gopnik* says, people can learn to be gardener parents, not carpenter parents. Improve the environment. Stop hammering on the kid.

*Gopnik is author of the book, The Gardener and the Carpenter (2016).

Disruptive Change is Still Needed: John Tschida

Significant barriers still exist that prevent people with IDD and other disabilities from exercising their right to self-determination. While some of these are attitudinal and architectural, the most problematic are policy related. Our current system of available supports has clear winners and losers, rooted not just in budgetary decisions but an imbalance of control that is tipped in favor of protecting individuals with disabilities at the expense of individual agency. Taking action to get the things you want and need in life too often requires exceptions to the rules. It’s not the way the system – and the program policies and rules therein – is designed to work.

As is often the case, person-centered concepts like self-determination often conflict with large systems and programs. How we define success and pay for these services doesn’t include self-determination in the funding formula. Disruptive change is needed. My hope is that a significant shift in how we redefine quality in long-term services and supports – and just as importantly, hold providers accountable for achieving it – will provide a powerful incentive for the advancement of self-determination. 

Multiple efforts are underway at the national level to do just this, supported and convened by agencies like the National Quality Forum and the Council on Quality and Leadership. While quality measures focused on a base level of protection and safety guarding against adverse events are necessary, they are insufficient. These current dialogues are interested in a future that asks how can the human services field ensure that people are having a meaningful life, and how do we shift a payment system to reward the success of individuals based on the wants and needs of those individuals?

While change is slow and budgets remain tight at both the state and federal levels, we have made significant progress over the last generation. Driven by Olmstead, increased flexibility in the Medicaid program, and even rulings under the Americans with Disabilities Act, self-determination has evolved and accelerated. By transforming how we measure quality in the long-term services and supports (LTSS) system, and paying providers accordingly for achieving it, we can take another leap forward in the best interest of those living with disabilities.

Keeping Our Eyes on the Road to Self-Determination: Jeanine Zlockie

Self-determination and its importance is present in every culture. Self-determination means I am in the driver’s seat and in control of all things about me. Having the autonomy to make decisions is a founding principle in our society and critical for the independence and happiness of all people. One tool to help individuals achieve self-determination is Supported Decision-Making (SDM). SDM is when people with disabilities use friends, family members, and professionals to help them understand the everyday situations they face and choices they must make. 

So why do self-determination and SDM continue to be an uphill battle for people with intellectual and/or developmental disabilities (IDD)? Research demonstrates that self-determination and the right to make choices are key elements for a meaningful and independent life. SDM, as a strategy to support and enhance informed choice, has been shown to increase self-determination in individuals with disabilities. SDM leads to higher employment at increased wages and greater community integration, as well as increased health, welfare, and safety.

As strategies to support people to have a voice in their own decision-making grow, so too will meaningful self-determination. States have legislation recognizing the importance of SDM as a strategy along the continuum of substitute decision-making. States that have such legislation include the District of Columbia and Nevada. These efforts, coupled with national activity around autonomy and choice, and including the HCBS regulations and Administration on Community Living (ACL) funding, offer promise. My hope for the next 10 years is to see tangible growth in the ability of people with IDD to be in the driver’s seat on their personal roads to their good life destinations! The road ahead will assure that: 

• People with IDD will have enough information or experiences to make an informed choice when they are faced with a fork in road.
• Individuals feel empowered to take a detour and to decline preset options and considerations that are put before them. 
• Long-term services and supports systems do not regulate people’s movements, but instead acknowledge that getting to a good life destination might require asking for directions and, sometimes, taking wrong turns.