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Beyond 50.03: A Report to the Nation on Independent Living and Disability: Executive Summary

Independent Living: The Framework for the Report

Expectations about living with disability have changed dramatically in the past few decades, in large part due to the influence of the independent living and disability rights movements, which seek to integrate persons with disabilities into the everyday life of their communities rather than isolating them in medically oriented facilities. The independent living philosophy sees disability not as an individual characteristic or "problem" but as a relationship between the individual and the entire environment in which he or she lives. The environment includes everything from physical surroundings to family networks to quality of health and long-term supportive services and the federal and state policies that address these issues. This report emphasizes these environmental factors in increasing independence and reducing levels of disability.

The independent living movement also seeks to change social attitudes to recognize that persons with disabilities want to remain in control of their lives and should receive the services they need to remain independent. As Judith E. Heumann has put it, "Independent living is not doing things by yourself, it is being in control of how things are done." (Co-Founder, World Institute on Disability)

Highlights of Findings

People's lives are changed in unpredictable ways when they or family members need long-term assistance with everyday activities. Individuals with disabilities are often surprised to learn that they are largely on their own in finding, arranging, and paying for such services, which are rarely considered to be "medically necessary" by health insurers.

While long-term care has had a stereotypically negative image in the past, the reality is changing. New technologies, new living environments, and new ways of "staying in charge" are helping people with disabilities to maintain their independence. And we as a society are recognizing that environmental factors play critical roles in either facilitating or undermining the ability to remain independent.

Our examination of historical patterns and new data presents an apparent paradox—recent trends and innovations, along with the growth of the disability rights movements, are helping many more persons with disabilities to live independently. But persons 50 and older with disabilities do not view their quality of life as improving—no aspect of life for which we have data have shown a positive trend over the last four years. In addition, it appears that the already large gap in life satisfaction between older persons without disabilities and those with disabilities may be growing.

Persons with Disabilities 50 and Older Speak for Themselves

To learn directly from those affected by policy decisions at the federal, state, and local levels, AARP commissioned Harris Interactive to seek the views of a nationally representative sample of persons 50 and older with disabilities on issues related to their disability, quality of life, and experiences in their communities.

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