Self Determination
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Self determination refers to the right of individuals to have full power over their own lives. Its concepts are central to existence in a democratic society, including freedom of choice, civil rights, independence and self-direction.  Self advocacy and self determination were originally only applied to the field of services for those with physical disabilities who with accommodations could live in the community instead of in institutions. This was called the Independent Living Movement.

Those with developmental disabilities and intellectual disabilities had for many years also been warehoused. Couldn’t they too have a life in the community and choose activities and caregivers they wanted?  Self determination for people with developmental and intellectual disabilities has come to include:

  • Individual budgeting
  • Fiscal intermediaries
  • Individually directed supports
  • Self advocates, family members, and supporting staff being all at the table when plans are made.

Several pieces of legislation have paved the way for increased self-determination:

  • 1990 Individuals with Disabilities Education Act (IDEA)
  • 1990 Americans with Disabilities Act (ADA)
  • 1999 Ticket to Work Incentives Improvement Act (TWWIIA).

These laws mandate a free, appropriate public education to youth with disabilities, reasonable accommodations in employment and public transportation and removal of work disincentives for people with disabilities seeking to work.

Application of Self Determination: the Olmstead Decision.

“The Olmstead Decision requires the transition of residents of nursing homes and other institutions to the community, and the conversion to a system embracing principles of Self Determination..”  --Jean Tuller.

The Olmstead case was brought by two women with disabilities living in the state of Georgia. Both plaintiffs lived in state-run institutions, despite the fact that their treatment professionals had determined that they could be appropriately served in the community. The plaintiffs asserted that continued institutionalization was a violation of their right under the Americans with Disabilities Act to live in the most integrated setting appropriate. The Supreme Court answered the fundamental question of whether it is discrimination to deny people with disabilities services in the most integrated setting appropriate. The Court stated that “Unjustified isolation is properly regarded as discrimination based on disability.” The Court further said that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.” The two women were successfully moved into a community setting, one immediately taking on volunteer work, and neither having to ever go back to an institution

Barriers to Self-Determination for People with Psychiatric Disabilities

As the hearings conducted by the National Council on Disability (2000) painfully demonstrated, people with psychiatric disabilities are routinely deprived of their rights in a way no other disability group has been.  They are the only Americans who can have their freedom taken away and be institutionalized or incarcerated without being convicted of a crime. This is due to a pervasive misconception about the dangerousness of people with psychiatric disorders, Moreover people with psychiatric disabilities often are perceived as malingerers or complainers. Their expressions of their discontent and insistence that their civil rights be protected are viewed by some of evidence of their insanity. Society is still ambivalent about whether people with psychiatric disabilities are capable of knowing what is best for themselves and making informed choices. Even though the disability and independent living movements strove to change perceptions and societal expectations of people with disabilities from the 1970s to the 1980s, by and large, people with psychiatric disabilities were left out of these movements.

Since their deinstitutionalization from public hospitals beginning in the 1950s and 1960s, people with psychiatric labels have been living in the community for long periods. Sizable numbers of individuals with psychiatric disabilities are homeless or live in unstable housing and some must reside with parents well into adulthood, a barrier to self-reliance. Because of the lack of adequate, recovery oriented-services, mental health advocates have come to define self-determination as clients’ rights to be free from all involuntary treatment;

  • to direct their own services;
  • to be involved in all decisions concerning their health and well being;
  • and to have meaningful leadership roles in the design, delivery, and evaluation of services and supports.

It is also critical that they be permitted the liberty to determine their own actions according to personally-developed goals. Unfortunately, these concepts have not yet proliferated in the mental health system, and consumers/survivors’ perspectives on the issue have not been widely acknowledged. For example, many rehabilitation-oriented models of service delivery such as Clubhouses, Fairweather Lodges, and Assertive Community Treatment programs, cite assisting clients in exercising self-determination as their central mission. However, some advocates have called into question the extent to which self-determination occurs in these community treatment models (Fisher & Ahern, 1999; Unzicker 1999) particularly for people of color. Too often self-determination is viewed as a privilege to be earned rather than as a right. Service recipients often are “rewarded” for treatment compliance by being given “opportunities” for self-determination.

A New Paradigm of Disability.
This paradigm views disability as an interaction between characteristics of an individual and features of his or her cultural, social, natural, and built environments. (National Institute on Disability and Rehabilitation Research, 1998). Whereas the old paradigm views a person with a disability as someone who needs “fixing,” someone who cannot function because of an impairment, the new paradigm views this person as someone who needs an accommodation in order to function. It highlights how the environments of people with psychiatric disabilities often are socially inaccessible, economically unaccommodating, legally exclusionary and emotionally unsupportive.

The new paradigm directs the search for solutions to removing barriers and creating access through promotion of wellness and well-being. The source of the intervention is no longer mental health professionals and clinical service providers, but peers, mainstream providers, and consumer advocacy and information services. Contemporary theories put forth connectedness, thriving, and an accommodating environment as key determinants of self-determination for all people, including those with disabilities.