Papers & Presentations

The failure of public policy to adequately address the issue of the common humanity of individuals with disabilities has resulted in the substitution of human services and human service environments and programs for real life and high purpose. Individuals with disabilities have become human service subjects within a system of long-term supports that has no expectations that common life goals based on universal human aspirations can add great depth to the notion of addressing the health and welfare of individuals with disabilities.

Individuals with psychiatric disabilities represent the largest category of persons with disabilities in the United States. No other category of disability is treat so disparately and remains so inadequately funded that it can truly be said that no coherent national finance policy exists for this population.

All people – including those with disabilities and older Americans -- share common human aspirations for freedom, dignity and equality. People with disabilities and older Americans want and deserve what we all take for granted as American citizens. They want the power and authority to decide where and with whom they live. They want control over the services they receive. They want an opportunity to work and have private income. And they deserve the supports that will break down the barriers that exclude them from participating in community life.

Every year since 2006, United Cerebral Palsy (UCP)–an international advocate, educating and providing support services for children and adults with a spectrum of disabilities through an affiliate network–produces The Case for Inclusion, an annual ranking of how well state Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD). Individuals with ID/DD, including the aging, want and deserve the same freedoms and quality of life as all Americans.

The mutilation of this girl named Ashley should come as no surprise. By now the entire disability community is familiar with what happened to Ashley, the justification on the grounds of convenience for the parents/caretakers and the defense of these procedures on the basis of diminished citizenship by Peter Singer in the NY Times. Part of the outrage that some of us feel is simply that others are not outraged at all. This should give us pause. The uncomfortable question I would like to pose is simply this: to what extent are we complicit in this lack of outrage from the media and the general public?

This paper discusses emerging issues in the area of quality and quality assurances as they relate et both self-directed and self-determination efforts now spreading all disability populations.

All people – including those with disabilities -- share common human aspirations for freedom, dignity and equality. However, various disability populations have unique histories, utilize diverse language to define their collective goals and are often categorized by funding streams and professional definitions of disability that separate and divide. The publicly funding long-term support system of the future must be informed and guided by the lived experiences of people with disabilities themselves.

To date quality assurance systems have ignored almost every critical component of quality that all individuals would chose as necessary for a minimally adequate quality life. In addition the unspoken “bargain” made with many individuals who need support is to require all or most of their everyday freedoms to be surrendered in return for support. This raises a core public policy question: can we ever have quality in a system that does not support freedom?

In the early 1990's the first monograph on self-determination (Nerney, T. & Crowley, R., 1994) began with a recitation of "simple truths".

All communities have as members people with disabilities. They are people of worth and value. They belong to family and neighborhoods. They are citizens, fellow workers, customers, and parishioners. They are one of us. Members of our families, our churches, our neighborhoods, people with disabilities who are our friends, our co-workers, our customers, are unwittingly being harmed.

We seek nothing less than adoption of the principles of self-determination by and with respect to people of disabilities of all ages as a commonly held social value. We hold this truth to be self-evident…

Maybe it is the times, or maybe it is the fact that we have had some time to examine how it is that we interact with and support children and adults with disabilities in communities. Or maybe it is simply that people with disabilities are sick and tired of being controlled by others. Whatever the reason, self-determination has emerged as the agenda of the 90's. As Bob Williams says: "Self-determination is just another word for freedom." Freedom to live with whom you want, freedom to live a productive life, freedom to attend school with your friends and brothers and sisters, freedom to get around your community, freedom to love and reject. . .

Maybe it is the times, or maybe it is the fact that we have had some time to examine how it is that we interact with and support children and adults with disabilities in communities. Or maybe it is simply that people with disabilities are sick and tired of being controlled by others. Whatever the reason, self-determination has emerged as the agenda of the 90's. As Bob Williams says: "Self-determination is just another word for freedom." Freedom to live with whom you want, freedom to live a productive life, freedom to attend school with your friends and brothers and sisters, freedom to get around your community, freedom to love and reject. . .

The disability rights movement has never been monolithic, but it has experienced an increasing consensus about the importance of limiting the legal authority granted to guardians, especially in life and death health care decision-making. Twenty-six national disability rights groups asked the courts not to allow Terri Schiavo’s guardian to bring on her death. But the arguments advanced by the disability rights perspective were long dismissed by a burgeoning and now fully developed movement.

When professionals and other people who are part of support systems are faced with questions about an individual's decision-making capacity, they are often led to the concept of incompetence and the promotion of legal guardianship. This is a process that everyone would prefer to avoid and that unfortunately can result in total lack of control and power of the individual over his or her own life. Fundamental rights of individuals which all citizens of our country expect and enjoy can be limited under guardianship. These rights may include marriage, voting, the right to procreate, and privacy. In addition, the power to make simple day-to-day decisions is often given to a surrogate decision-maker, further negating the meaning of the self-determination process for the individual.

The timing is right to change the current pervasiveness of guardianship. We have moved away from parents and professionals making decisions about placements for people with disabilities in homes, facilities, and day programs. The principles and practices of person-centered planning and self-determination give us the tools to support individuals with disabilities to have the lives they want in the community. This change bodes well for rethinking our reliance and benign attitude towards guardianship. There is clearly a dichotomy between guardianship and self-determination or person-centered planning. As Kathy Harris points out in her article, Making Guardianship Unnecessary, “The imposition of guardianship is the total antithesis of self-determination principles.”

Community Living Services (CLS) is a large nonprofit corporation that promotes “community inclusion, full citizenship, and a self‐determined life” for people of all ages with developmental disabilities. The organization has undertaken significant transformation in the past 15 years. This report focuses on that transformation, particularly with respect to community living services.1 It is based on a site visit to CLS, Inc. in May 2009, which included interviews with administrators of CLS and contracted service providers, direct support staff, individuals with disabilities, and family members, as well as review of documents.