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

People with disabilities say better medical insurance is the number one change that would be a major improvement in their lives. In addition, one out of three persons with disabilities reports specific needs, such as for particular therapies or equipment, not covered by health insurance. Problems include delivery as well as coverage issues: The overlap between chronic conditions and disabilities increases with advancing age, but little coordination exists between medical care and long-term supportive services. Finally, the trends concerning access to and satisfaction with health care among people 50 and older with disabilities over the last four years are in a negative direction. Concerns about recent trends extend to programs that have historically played a positive role in the health care of people with disabilities. Persons 50-64 with disabilities rely much more heavily on Medicaid than do those without disabilities, but Medicaid budgets are being cut in many states due to budget crises.

 

Policy Implication: Focus on functioning and health-related quality of life, not just acute and curative care, in our health care system. In addition to filling gaps in Medicare's benefit structure, such as prescription drugs, we need to provide services to help persons with disabilities maintain or restore function and quality of life. Medicare policies should support delivery of health care that meets the needs of persons with chronic illness and disabling conditions for ongoing, rather than episodic, health care. In addition, coverage for the equipment and therapies often needed by persons with disabilities should be expanded in both private and public insurance programs. Finally, essential Medicaid services, such as prescription drug assistance, need to be protected during tough fiscal times.

(7) Despite some improvements, the quality of long-term supportive services is a persistent problem in all settings. A focus on consumers' quality of life is rare. In addition, there is an unprecedented shortage of the frontline workers needed to provide long-term supportive services to persons with disabilities, such as personal care attendants and nursing assistants.

While the quality of care in nursing homes has generally improved with the passage of the Nursing Home Reform Act in 1987, problems with quality of care and quality of life persist. Two-thirds of persons 50 and older with firsthand experience with nursing homes believe the government is not doing enough to enforce quality standards. Low staffing levels lead to poor care in nursing homes. According to a recent report sponsored by the Centers for Medicare and Medicaid Services, 91 percent of nursing homes do not provide the minimum number of hours of care by certified nurse assistants needed per resident per day to avoid serious quality-of-care problems.

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