Supported Decision-Making: A Path to Dignity and Self-Determination for People with Intellectual and Developmental Disabilities

An Editorial on the Critical Need for Alternatives to Guardianship

The deeply held values of individual autonomy, self-determination, and independence are in direct conflict with the reality of how we support people with intellectual and developmental disabilities (IDD) in many aspects, but with particular emphasis on decision making and choice. Guardianship is often recommended to parents and family members as the most viable option for “protecting” the rights of their child/loved one who experiences IDD/A. Although it may be appropriate in some circumstances, guardianship as a means of “protecting” the rights of a person with IDD/A is, quite simply, a stripping away of the individual's fundamental civil rights and decision-making authority. This approach to “supporting” a loved one who experiences IDD/A is increasingly being recognized as an antiquated mechanism that perpetuates unnecessary power and control dynamics. Sadly, the current state of uncertainty in our society around resources and benefits, along with conversations about civil commitments and a regression towards institutional thinking, appears to be rising. Supported decision-making (SDM) is a viable alternative to guardianship. It represents a significant departure from the authoritarian, bureaucratic mindset that is endemic to the human services delivery system. SDM also offers a systems-thinking, person-centered approach to supporting individuals with IDD, helping create an environment where individuals feel safe, valued, and engaged.

The Better way

Supported decision-making represents a paradigm shift from the deficit-based, machine-oriented model of guardianship to a systems-thinking, capacity-building approach that recognizes the inherent worth and decision-making potential of every human being, regardless of form or function. Guardianship poses the question to those seeking guardianship over their loved one, "What decisions can’t this person make for themselves?” Supported decision-making asks the person at the center of the process, "What support do you need to make decisions for yourself?” SDM assumes competence.

Supported decision-making creates the opportunity for a person with IDD/A to form a team of supporters who will assist them in making decisions in the areas of their lives where support is needed or wanted. These areas could include, but are not limited to, healthcare, finances, relationships, opportunities for social engagements, vacations, and travel. This model recognizes that human beings are social by nature and interdependent. Decision-making for most human beings is rarely a solitary act. We all rely on family, friends, professionals, and other trusted individuals to help us navigate complex choices throughout our lives.

Guardianship is formal, rigid, and one-size-fits-all. SDM exists in a space where it is in harmony with all other support theories. It is a flexible, person-centered approach that is holistic and embodies a systems-thinking framework, in which a person's support can come from all areas of the environment in which they exist. Supported decision-making is very much in line with ecological systems, in which environments and people overlap in our lives and, as such, offer a holistic, comprehensive view of each situation in which a person seeks support. For example, a supported decision-making team can be tailored to an individual's specific needs, preferences, and areas of greatest need. One person might want help with medical information and healthcare decisions; another might only want support with managing finances. And still another may wish to have support in post-secondary education and employment. The point is that the individual remains in control, choosing their supporters and determining the scope of assistance they receive.

Quality of Life

Greater levels of satisfaction, improved self-esteem, and enhanced overall well-being are the direct results of being able to make your own choices about life and everything in it, regardless of the level of support needed or chosen. The research is clear; self-determination is a key predictor of human flourishing for people with disabilities.

The most practical example of the difference between Guardianship and Supported Decision Making would be the difference between a guardian making all the decisions for a person about where to live, with whom to live, which provider agency to be supported by, whether or not employment is considered and if so where and what kind of job or career path to choose, which medication to take, and what medical procedures to undergo or not versus the same person who, with support from a circle of supportive others, lives in housing they helped choose, with people they would like to be around, pursing employment that aligns with their interests and goals, and being an active participant in their healthcare decisions. Under the second scenario, the person's humanity is honored. The second scenario assumes competence and recognizes the potential for growth. Equally as important as the second scenario under the supported decision-making process, the person is supported in establishing a socially valued role in their community.

Eliminating Unequal Power Dynamics

Traditional guardianship creates unequal power dynamics and is a hierarchical relationship in which the guardian holds all legal authority over decisions that impact all aspects of the ward's life. The unequal power dynamic in this type of relationship often fosters dependency, diminishes self-advocacy skills, and creates opportunities for abuse or exploitation.

When viewed through the lens of historical discrimination against people with disabilities, a reliance on guardianship shows that society continues to see people with IDD as incompetent and that they cannot make decisions for themselves. It is the continuation of a paternalistic approach that has justified forced sterilization and institutional segregation, for the "protection" of and doing "what's best" for the individual.

Supported decision-making disrupts unequal power dynamics by assuming competence and positioning the individual as the decision-maker. The person's chosen circle of supportive others serves as advisors, providing helpful information, helping the person understand options, and offering guidance when requested. In the context of supported decision-making, the final decision on any matter remains with the individual. Moreover, the risk of making a poor choice is overshadowed by the dignity of risk, the fundamental right to make mistakes and learn from the consequences.

Wrong-Way

Across the country, there appears to be a renewed interest in approaches that emphasize control and containment, as well as other forms of social control. This backsliding jeopardizes decades of progress in disability rights and community-based services.

The same premise of assumed incompetence and the idea that “certain” individuals can't be trusted to make their own decisions lies at the center of guardianship and Civil commitment procedures. Both are examples of extreme forms of social control that disproportionately affect people with disabilities, people of color, and other marginalized communities. The resurgence and expansion of civil commitment criteria and procedures is very real and a clear and present threat to the civil liberties of people who experience IDD. In light of this disturbing trend, developing robust alternatives, such as supported decision-making, has never been more critical.

Within the context of expanding conversations around civil commitments and other forms of social control, SDM stands in the gap against the broader erosion of disability rights. When people who experience IDD/A demonstrate the ability to make their own decisions with a supportive network of their choosing in place, SDM challenges the fundamental assumptions that underlie both guardianship and civil commitment procedures.

Leading the Way

The Arc of the United States, The National Disability Rights Network, the Administration on Community Living, Disability Rights Arizona, and The Arc of Arizona have and organizations large and small throughout the nation have emerged as crucial advocates for supported decision-making and guardianship reform. The Arc of Arizona has committed to "increasing the use of supported decision-making as a less restrictive alternative to legal guardianship among people with intellectual and developmental disabilities, as well as the aging population."

As Melanie Soto, state director of The Arc of Arizona, has noted, "The intent of the new Supported Decision-Making law is not to replace guardianship entirely, but rather to provide families with options to 'start with SDM to see [how] an individual does with support."

Starting with the least restrictive option is a pragmatic approach that recognizes that some individuals may indeed require more intensive support. It ensures that guardianship is genuinely a last resort.

The Arc of Arizona's advocacy efforts have contributed to critical legal reforms that recognize supported decision-making as a valid alternative to guardianship. These changes taking place in the State of Arizona and around the country signal a fundamental shift in how society views the capacity and rights of people with IDD.

The Implications

The recognition of supported decision-making as a viable alternative to guardianship is growing. This growth has significant implications for legal and policy reform. Advocates are calling for "… less restrictive alternatives to full and plenary guardianship."

Self-advocates assert that guardianship should be viewed as one option among many, rather than the default solution for adults with IDD who need support with decision-making. The current reform agenda acknowledges that individuals have different support needs and, as a result, the legal system should offer a range of options tailored to those needs.

It should be noted that regardless of their guardianship status, all individuals with IDD should retain their fundamental civil and human rights, which include the right to vote, the right make decisions about relationship status, and/or birth control.

The Path Forward

The movement toward supported decision-making represents more than a change in legal procedures. This shift is a change at the level of paradigm. It is a reorientation in the collective societal mindset towards people who experience intellectual and developmental distinctions. The movement away from Guardianship as a default towards supported decision making demonstrates that society is beginning to see people with IDD as adults capable of growth, learning, and self-direction with appropriate support.

Movement toward supported decision-making has implications beyond the disability community. The basic principles that serve as the foundation of supported decision-making, such as respect for individual autonomy, the recognition of the value of community support, and commitment to person-centered approaches, are a model for how we might better support all members of society regardless of variations in form and function.

The work of organizations across the country on supported decision-making demonstrates the capacity of social change when advocates, families, and communities come together to challenge outdated systems and demand better alternatives. Their efforts to promote supported decision-making represent an investment in a more inclusive, respectful society that values the contributions and perspectives of all its members.

Conclusion

Standing at the proverbial crossroads, we face a choice between outdated systems that strip away dignity or embracing innovative approaches that recognize the inherent worth and competence of every human being to make their own decisions. As a moral imperative that cannot be ignored, choosing supported decision-making over guardianship is a choice of hope over fear, growth over stagnation, and humanity over bureaucracy.

Real Rap...