Adults with disabilities of all ages want to live independently and exercise choice and control over decisions that affect their health and essential daily activities. Few current data on potential barriers to independent living and changes in the lives of older persons with disabilities over time – both positive and negative – are available. This brief presents follow-up data from a subgroup of persons 50 and older with disabilities originally interviewed in 2002 by Harris Interactive for the AARP report, Beyond 50.03: A Report to the Nation on Independent Living and Disability. The sample for this report includes 287 U.S. adults ages 52 or older who have a disability (referred to hereafter as “persons with disabilities”) and who participated in both the 2002 and 2005 surveys.
Almost no good news. With only one possible exception, no improvement occurred between 2002 and 2005 in any aspect of quality of life about which respondents were queried. Almost all indicators related to quality of life and health and long-term supportive services remained constant or worsened between 2002 and 2005.
Quality of life is declining. For example, in 2005, persons with disabilities were more likely than in 2002 to say that they have (1) been prevented from reaching their full abilities due to their disability (69 % in 2005 vs. 60% in 2002; and (2) expect the quality of their lives to get worse over the next four years (70% vs. 55%).
Concern about the cost of personal assistance services is increasing. Concerns about being unable to pay for the cost of long-term services and supports doubled between 2002 and 2005 (from 12% to 24%).
The cost of health care and need for better medical insurance also had become even greater concerns for adults with more severe disabilities, compared to those with less severe disabilities, than in 2002. In 2005, 44% of persons with severe disabilities postponed health care because it was not affordable, and well over half (61%) said having better medical insurance would cause a major improvement in the quality of their lives.
Family support remains the bulwark – paid help is uncommon. Among those who received regular help with everyday activities such as bathing, dressing, and cooking, about 75% continued to receive unpaid help from family members, predominantly spouses or children. Only about 20% received paid services. Preferences for assistance from family and friends with such activities were even stronger in 2005 than in 2002 (57% vs. 47%), while preferences for care provided by agency workers at home declined. Only small proportions preferred care in assisted living (11%) and nursing homes (2%).
Unmet need for help with basic daily activities persists; cost is an even bigger barrier than in 2002. Nearly three in ten (29%) respondents reported in both 2005 and 2002 that they needed more help than they were receiving with everyday activities. Even more respondents said the main reason they did not receive enough help was because they could not afford it (74% in 2005 vs. 59%). Half (52%) of those who received regular help in 2005 did not have a choice in who would provide it; which was not asked in 2002. The leading reason was “The help I receive was the only help I could afford.”
Preferences for consumer-directed services continue. When asked about possible ways in which publicly-funded home-based services could be provided, the respondents' preferred option continued to be having the money go directly to them rather than to an agency. They would then pay for the services and manage the workers themselves. However, more individuals wanted to manage the workers themselves but have an agency pay the workers in 2005 than in 2002 (34% versus 26%).
More affordable home and community-based services (HCBS) for persons with disabilities is unquestionably a pressing policy need, as is providing more publicly-funded consumer-directed HCBS, which are funded primarily through Medicaid. Our findings also are consonant with growth in consumer-directed programs that use fiscal agents or other means to pay workers and deal with payroll, taxes, and withholding.
A need for more family-centered policies is another clear implication of this report. Results suggest that some families are overwhelmed and are simply unable to arrange for and provide all of the care needed. In particular, it appears that providing more paid, formal services to backup family caregivers could help to reduce unmet need among people with disabilities and help families sustain their caregiving roles.
The lack of adequate health insurance for persons with disabilities again emerged as warranting immediate attention. A large and growing number of persons with severe disabilities said they simply went without needed health care and that better medical insurance would help their lives enormously. Persons ages 50-64 with disabilities who are not eligible for Medicaid or Medicare are particularly vulnerable.
Finally, in a broader policy perspective, these data illustrate the need for major reform both of our nation's health care system and its long-term care policies. Findings in this report signal the growing crisis in health care and long-term services and supports for older persons with disabilities and their families.
- For full report, see AARP Public Policy Issue Paper #2006-26
- One positive note was that a larger percentage of people with disabilities in 2005 said their disability or health condition has had no effect on their control over when and what they ate than in 2002.
- For up-to-date data on the number of persons receiving HCBS by state, and state spending on HCBS, see Across the States 2006: Profiles of Long-Term Care and Independent Living, by Ari Houser, Wendy Fox-Grage, and Mary Jo Gibson, AARP Public Policy Institute, December 2006.
Written by Mary Jo Gibson, AARP Public Policy Institute
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