The Disability Experience Today

Taken from the Publication, The State of Disability in America

While the disability rights movement has grown increasingly sophisticated and influential over the last 30 years, it has shifted its focus increasingly towards self-determination and choice for people with disabilities. This emphasis may yield promising policy results in the future.

The concept of self-determination is based on the recognition that all persons, including people who have disabilities and their families, have the need to determine their futures. Interpersonal relationships, family structures, and community roles all suffer under programs that “provide for” but do not encourage self-direction in one’s own life.

Four Guiding Principles of Self-Determination

Freedom: The ability for individuals with freely chosen family and/or friends to plan a life with necessary support rather than purchase a program.
Authority: The ability for a person with a disability (with a
social support network or circle if needed) to control their own
resources in order to purchase these supports.
Support: How personnel and resources - both formal and
informal – are arranged to assist an individual with a disability
to live a life in the community rich in community association
and contribution.
Responsibility: The acceptance of a valued role in a person’s
community through competitive employment, organizational
affiliations, spiritual development and general caring for others in
the community, as well as accountability for spending public
dollars in ways that are life-enhancing for persons with disabilities.
Source: Beyond Managed Care: Self-Determination for People with
Disabilities (first edition), 1996

If our nation can commit itself to these principles, millions of people with disabilities whose talents are now wasted might become contributing citizens with full and independent lives. If government, for a change, could flex its imagination and build policies around these four principles, then the disability experience might change entirely.

For this minor miracle to happen, the disability community and policymakers must fully understand the scope of the challenges ahead of us. Statistics show several emerging trends.

Importantly, many of the nearly 80 million aging baby boomers may soon experience age-related disabilities. Federal legislation passed in the 1990s recognized that “disability is a natural part of the human experience,” making literally every human being a candidate, and certainly age enhances that candidacy.While preventive healthcare and good management and coordination of health services may mitigate some of these emerging disabilities, it is virtually undeniable that the number and prevalence of disabilities among the US population will increase. It will be critically important for the greater disability community to acknowledge and assimilate the experiences of aging citizens in order to meet their needs and harness their political power.

Revolutionary advances in assistive technology are occurring every day. Soon it may be possible for people with severe disabilities to regain function through biotechnology, robotics and advanced neuroscience. For example, a neural implant may one day allow a person with profound physical disabilities to move a mouse on a computer screen, speak through a computer or drive an electric wheelchair. These advances must be encouraged and made more accessible to people with disabilities, regardless of their income or access to quality healthcare.

Poverty continues to be a significant risk factor for disability, which is made worse by growing income inequality throughout the country. In 2005, more than 37 million Americans lived in poverty and about 40 percent of these people experienced a disability. Additionally, some 47 million Americans do not have health insurance. Data show that children living in poverty are especially vulnerable and may experience developmental disabilities as a result of preventable malnutrition, birth defects or related environmental factors.

Finally, more than 2 million people with disabilities live in some type of rigid institutionalized setting. While this population continues to decline, it is still significant. Increasingly, state and federal policymakers are acknowledging that community-based supports and services may lead to both improved cost benefits and higher living standards. However, near-term budget constraints, the high cost of housing and collective shortsightedness may lead to a resurgence of state supported institutionalization. The disability community and its advocates must remain vigilant and build upon the momentum of the past quarter century towards vastly reducing the number of people living in institutions.

An Evaluation of the Disability Experience by the Life Without Limits Project
James P. Baker
David B. Mixner
Seth D. Harris

www.ucp.org/uploads/StateofDisability.pdf