Lost Lives

Self-Determination, Self Directed Services and a New Foundation for Determining Quality

The advent and the implementation of both self-determination and self-directed services may require a fundamentally new foundation for establishing quality and quality assurance systems in the field of behavioral health. The goal of the self-determination movement has always been to assist individuals with disabilities to craft a meaningful life in their communities, rich in relationships and deeply connected to their communities and the world of business and commerce. Concurrent with the self-determination movement we are witnessing the rise of a parallel movement called self-directed services.

Some contemporary quality assurance systems, depending on what public policy choices are made, may be adequate for this. This is so because control of and satisfaction with the services or supports are seen as the goals of this movement. Therefore it still makes sense for many in the quality assurance world to continue to rely on levels of satisfaction with services or supports as the primary foundation for quality assurance. But self-direction and self-determination are not necessarily incompatible. There are major points of agreement on the need to shift control of a targeted amount of resources directly to the person with a disability/family. There is a new awareness of the role responsibility plays with this freedom to choose providers and services as well.

Both approaches raise the issue of the very purpose of public funding. Self-Determination takes the position that this purpose must be related to a person with a disability having a purposeful life, having the ability to seek the same goals that all others have related to personal relationships, membership in the community, and establishing an economic future. The problem with contemporary public policy in this view is that there are no high expectations for individuals with disabilities. In truth, there are no expectations beyond satisfaction and ≥choice≤ goals in many systems. Human services have remained the goal and control of those services has become the foundation of self-directed services and supports. As a result self-direction measures the adequacy of the services, the personπs control of these services and the personπs satisfaction with them. Admirable steps in a new direction.

However, once we move from evaluating the adequacy of and control over services and supports to the goal of crafting a meaningful life, we will have to move even more from simply evaluating services to evaluating lives. We will move from simply addressing the adequacy and satisfaction as well as control of the services to the quality of personal lives. And this means that we have to fundamentally change our quality assurance systems from ones that posit and evaluate only increased satisfaction with services and supports to ones that reach a much higher standard: the realization, through the use of public dollars and supports, of meaningful lives predicated on universal human aspirations and supported by public policy that sets high expectations for the receipt of public dollars.

This new view of quality starts with re-examining health and safety issues and moves inexorably to universal human needs for friendships and relationships, freedoms common to all citizens, secure economic futures and contribution and community belonging.

A person with a physical disability may need assistance in getting up, dressed and having breakfast each morning. A person receiving behavioral supports may need assistance provided through counseling or peer support. Being satisfied with who provides this assistance and how they provide it are worthy questions and satisfaction-type evaluations adequately get to the answers. But they miss the point and the goal of the self-determination movement, which holds that this is simply not sufficient. Self-Determination is moving to a deeper personal and public policy issue: why get up in the morning at all? In other words why are individuals with disabilities not accorded nor expected to have purposes in life similar to those without disabilities. Virtually everyone else arises to carry out daily responsibilities, work, earn income, plan for life goals, take care of family members, contribute to the common good, exercise citizenship. Until people with disabilities are accorded the same expectations our view of quality will remain severely constrained. It will focus solely on the services. Until the foundation of our benefit and program structures are changed people with disabilities will remain forever impoverished, frequently consigned to unsafe housing, unable to work because of Social Security disincentives and live lives of minimal quality.

From a rational public policy perspective satisfaction is not only a low common denominator it is dangerous in the extreme. With the wide diversity in funding levels within and across state Medicaid programs, satisfaction can lead to a defense of the indefensible. Expensive institutional settings that achieve high ≥satisfaction≤ ratings are one good example. Segregated lives may be satisfactory to some. Just as likely, those services and supports that might cost more than what a person needs may get sanctioned in the name of satisfaction. Satisfaction is the lowest common denominator and entirely subjective. Only by positing high expectations and positive outcomes related to certain universal human needs can we ever set a higher standard that also meets the public policy test of quality and cost effectiveness.

Lost Lives

The failure of our federal statutes and regulations 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 (including recovery) 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. Present public policy inadvertently supports lives lost to programs and rules that deny or ignore our common humanity, our common aspirations and dreams, and our common sense of responsibility to become contributing members of this society.

The True Meaning of the Dignity of Risk

Health, Safety and Liability

Free men and women take risks. The very notion of freedom implies the possibility of risk. Human service discussions of risk seem to center on issues of health and safety. As if with newfound freedom individuals with disabilities are somehow predisposed to create situations that will jeopardize their well being. Self-determination is not about doing whatever one pleases with public dollars. It is not about creating additional risks to health and safety. In fact it can be argued persuasively that self-determination properly implemented better addresses issues of health and safety. Self-Determination at its core promotes long term committed relationships. Without these relationships individuals with disabilities remain forever in jeopardy.

But self-determination properly implemented does increase risk for individuals with disabilities. It seems important to recognize these risks and even to encourage them. What are they? By addressing universal human needs and desires and aspirations, self-determination poses several risks not usually contemplated by traditional or typical human service systems. By addressing forced impoverishment people with disabilities face the possibility of failureãfailure at work or at self-employment. By addressing our connections to our communities people with disabilities face possible rejection. By focusing on the universal human need for friendships and even intimate relationships, self-determination poses the risk of heartbreak.

These are the risks that define us as human beings, make us strong and reflective and carry the promise of true community and family membership. With every risk there is a hope of success. With assistance individuals with disabilities including those with intellectual and cognitive disabilities need to face the risks associated with membership in the human race. They need to accept responsibility for the exercise of freedom. They need to understand that the dignity of risk is what makes us human. The possibility of success outweighs the fear of failure in a system of supports that truly values every person and finally aims to re-capture lives lost.

The dignity of risk then is central to our new understanding of what the support system of the future needs to be-- characterized by high expectations and the risks that all people must take to create lives of high purpose and great meaning.