Authors’ Note: In an effort to make this blog post accessible to as broad a range of readers as possible, we have developed an easy read version of it. That version is available here.
Editors’ Note: This piece is a part of our series celebrating the thirty-year anniversary of the Americans with Disabilities Act (ADA).
More than one billion people worldwide live with a disability, according to a 2011 study by the World Health Organization and World Bank that likely understates the prevalence of disabilities. The Centers for Disease Control and Prevention (CDC) estimates that one in every four adults in the United States has a disability. As Dr. Coleen Boyle of the CDC wrote in 2018, “at some point in their lives, most people will either have a disability or know someone who has one.”
The Americans with Disabilities Act (ADA) was a pioneering law enacted in 1990 to protect the rights of all persons with disabilities. It has done much to curb direct discriminatory behavior and provide greater access as a matter of right. And it has invigorated a generation of self-advocates working to promote the rights of individuals with intellectual or developmental disabilities* (IDD). Yet, three decades later, problems persist in eliminating the “unfair and unnecessary discrimination and prejudice” observed by the ADA’s drafters that deny people with disabilities “the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.” Today, ADA enforcement is uneven, litigation is burdensome, and persons with disabilities experience greater rates of poverty, wider health care disparities, and more pervasive and systemic exclusion than virtually any other group in American society.
The ADA was very much a product of its time. Then, many assumed that court-appointed guardians could best protect the interests of adults with IDD by making decisions for them about financial, medical, residential, and even romantic and other personal matters. While the ADA advanced the idea of reasonable accommodation to facilitate access to workplaces and the community, it did not offer a similar tool to facilitate decision-making by individuals with IDD. Thus, although the ADA may in theory be used to combat formal decision-making restrictions that constitute disability-based discrimination, in practice, many individuals with IDD have relied on self-advocacy strategies to educate and empower themselves and others to claim equal opportunities to make their own decisions.
Courts give guardians, who are often family members, decision-making authority when they believe individuals with IDD are incapable of making good decisions on their own. While we do not doubt the good intentions of most (but not all) guardians, that transfer of legal authority deprives individuals with IDD of the opportunity to make their own decisions about their lives. And while we certainly recognize the real costs of bad decisions, guardianship also deprives individuals with IDD of opportunities to learn from their own mistakes and to acquire the skills and confidence to make better decisions.
Supported decision-making is an important alternative that aims to correct the power imbalances resulting from guardianship. It is meant to enable individuals with IDD to secure the assistance they may want in making their decisions. All of us, with or without a disability, have sought and received support in making decisions, especially hard ones, at one time or another. But all too often individuals with IDD are viewed as less capable of making decisions when they seek support, while persons without IDD are credited as savvy when they seek others’ expertise. Supported decision-making helps to legitimize and dignify the ways that many individuals with IDD seek assistance with decisions and can help to train family members and others to embrace the roles of supporters and enablers of decision-making, rather than to act as gatekeepers.
Supported decision-making is nothing new, but its recognition as a human right is. The United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was inspired in part by the ADA, goes further than that law in protecting the right of individuals with IDD to make their own decisions. Indeed, its first general principle is “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.” Article 12(3) of the CRPD crystallizes this principle by providing that all persons with disabilities have a right to the support they may need in order to make their own decisions. Numerous other specific Articles elaborate this idea. Among them, Article 19 affirms the right of persons with disabilities “to live in the community, with choices equal to others.” The CRPD has been adopted by 181 nations and the European Union, but unfortunately not by the United States. Its rapid uptake is helping to spread the idea of supported decision-making throughout the world.
Each of the four authors has direct experience with decision-making by individuals with IDD that we believe demonstrates why there is a need for supported decision-making. One author, as a young adult, had a conservator, which in Massachusetts is a guardian of property. The conservator was appointed when the author was placed in a group home, as required by its policy. Years later, the author was able to leave the group home and take full responsibility for their financial matters. That proved fortunate, as the author and the former conservator later had a falling out which would have made reliance on a surrogate decision-maker difficult and demeaning.
Even guardians with the worthiest of intentions may not always fully appreciate what an individual with IDD may be capable of doing. This, in turn, may reinforce others’ views of the individual’s limitations. One author has a relative with autism who wished to vote in a recent election. That relative’s mother, who was her guardian, and other family members were doubtful she could understand how to do so, even though she was well read in current affairs. And they further believed that persons subject to guardianship did not have a right to vote. At the time, the author was part of a nationwide get-out-the-vote project run by individuals with IDD and let the family know that the relevant state law did not bar individuals with a guardian from voting. But that did not change the guardian’s bottom line. Diminished expectations too often have the effect of limiting what may be possible.
One of the authors has supported a man with IDD for several years. That man’s father and sister are his co-guardians. His sister introduced him to the author so that he could explore supported decision-making. Recently, the person with IDD expressed an interest in moving several hours away from where his sister and father live. But they oppose his decision as they fear that he will not be capable of paying his bills or finding a job or a new home. At a planning meeting, he explained his decision and the impressive amount of research he had done to make his desired move successful. That included contacting and gathering detailed information about a prospective group home, employer, and a community college program. Unfortunately, rather than support his decision, his sister and father said he would have to go to court to remove them both as guardians. Now, he is faced with the far more complicated decision of whether to risk alienating trusted family members to pursue his wishes.
Underestimating the capacity of individuals with IDD can be harmful not only to them but to society more broadly. For more than two decades, one author has volunteered with a leading organization promoting the empowerment and inclusion of individuals with IDD. Time and again, the author has seen individuals with IDD bring as much, if not more, practical wisdom and empathy to decision-making, on matters both large and small, as anyone without or with a disability, to the benefit of all. This, in turn, has enriched that author’s understanding of what makes for sound, compassionate, holistic decision-making, with positive spillovers far beyond the organization in question.
Finally, the experience of one author with mountain-climbing serves as a metaphor for what supported decision-making is and can mean. As a child, that author’s parents insisted on including all their children in family outings, including long hikes in the mountains. The author being blind, the author’s father served as a companion and they had stirring conversations as they hiked together. Years later, in adulthood, the author expressed an interest in hiking the Mount Washington Road in New Hampshire. Several people sought to discourage this, thinking it too dangerous to undertake. But the author persisted, enlisted friends to join in, and ended up having a wonderful experience, including reliving precious childhood memories. The support, in both instances, was vital in enabling the author to live life fully while instilling confidence.
Supported decision-making is gaining momentum in the United States. As of this writing, thirteen states and the District of Columbia have changed their laws to recognize new supported decision-making instruments, thereby expanding the decision-making options available to adults with IDD. Crucially, these changes in the law are spurring changes in attitudes, as more and more individuals with IDD, their family members, and allies learn about supported decision-making. Society has a long way to go to ensure access to support mechanisms that create meaningful opportunities to be decision-makers. So, although for some guardianship may remain a preferred means to reach their goals, we are excited to see what new mountains supported decision-making will enable individuals with IDD to surmount.
Supported decision-making sends a message that individuals with IDD need and deserve opportunities to dream. From a young age, most people without IDD are encouraged to dream. But for individuals with IDD, that does not always happen. Other people assume what they can and cannot do instead of giving them opportunities to try new things. Society tells us: “You never know until you try.” But too many individuals with IDD do not get those chances to find out for themselves. Society also tells us: “If at first you don’t succeed, try, try again.” But too many individuals with IDD do not get chances to learn from their mistakes after failing something once. And society tells us: “Practice makes perfect.” But too many individuals with IDD do not get those chances to grow. Thus, in order for individuals with IDD to unlock the potential of supported decision-making, they must first be empowered.
Massachusetts Advocates Standing Strong (MASS) is a civic organization run by individuals with IDD that works to empower self-advocates through education. In 2017 MASS formed a Supported Decision-Making Task Force to learn more about supported decision-making and ensure that self-advocates’ voices are heard as decisions are made about supported decision-making laws and policies in Massachusetts. Working together, Task Force members have studied various legal models and spoken with other self-advocates about how they think supported decision-making could have an impact on their lives. The Task Force has shared what it has learned, including developing its own supported decision-making agreement in an easy-read format. The feedback so far suggests that such agreements can help individuals with IDD feel empowered to make their own decisions. Such agreements may also serve to address the concerns of other groups, including family members and judges. We believe that these collaborative efforts at thoughtful supported decision-making can help realize the ADA drafters’ vision that everyone with a disability should “pursue those opportunities for which our free society is justifiably famous.” That would, indeed, be a fitting gift as the Act enters its fourth decade.
* Terminology is tricky. We would prefer not to refer to individuals chiefly in terms of their disability as that tends to obscure other dimensions of who they are. However, we use conventional terminology here, as we think that this is likely to be more familiar to more readers of this blog post. The American Association for Intellectual and Developmental Disabilities describes intellectual disability as involving significant limitations in both intellectual functioning and adaptive behavior, while the CDC describes developmental disability as a physical, learning, language, or behavior impairment arising before age 22. Neither term captures the full person.