A new study from AARP reports that more than anything Americans, with disabilities age 50 and over want independence and control in their daily lives, but they are too often thwarted by the lack of affordable options to help meet their needs. Further, the absence of an organized system for delivering services means many persons with disabilities and the family members who often assist them are unaware of existing support sources.
The report, “Beyond 50 2003: A Report to the Nation on Independent Living and Disability,” includes results of the first ever national survey of Americans age 50+ with disabilities. The report documents the gap between what they say they need and what is available. It also raises concerns that the U.S. is ill-prepared to meet the demand for independence among people over the age of 50 who will experience disabilities in the coming decades.
“Long-term independence for persons with disabilities is an increasingly achievable social goal,” AARP Policy and Strategy Director John Rother said. “But it will require time and the collective creativity of the public and private sectors,” he explained. “Meanwhile, even minor changes can lead—at least in the short-term—to important life-style improvements for those with disabilities today. Broader long-term improvements will require fundamental policy changes,” Rother said.
“As the influx of Boomers enters their 50’s and 60’s, they will bring their attitudes of competitive consumerism to health care delivery, and will demand greater choice and control of available services,” explained Rother. “The good news is that there is time to prepare for those demands,” he continued. “Along with improvements in medicine and health, we are seeing some declines in disability. New technologies are also extending Americans’ years of independence.
The “Beyond 50” report, the third in a series of annual AARP comprehensive studies on the status of Americans over age 50, found that almost half (46%) of 50-plus Americans with disabilities (including nearly 60 percent of those between the ages of 50 and 64) believe that having more control over decisions about services and the help they need would bring a major improvement in the quality of their lives. In the same vein, Americans 50+ with disabilities say their greatest fear is loss of independence and mobility.
Currently, most of those with disabilities (51%) are managing independently, with less than half (49%) receiving any regular help with daily activities, such as cooking, bathing and shopping. However, more than half of those with disabilities (53%) also say they were unable to do something they needed or wanted to do in the past month—quite often basic tasks such as household chores or exercise.
Most (88%) of the help people reported receiving is volunteer assistance from family or other informal caregivers. Most persons 50 and older with disabilities (61%) strongly prefer this type of assistance with everyday tasks. And only one out of three uses any community-based service.
Some of the unmet needs could be met by making modest independence-enhancing assistive equipment (such as walkers and wheelchairs) and new technologies more widely available, the report concluded. Others, such as for more human assistance with daily activities, will take more resources. As many as 3 million (almost 25%) persons 50+ with disabilities need more help than they receive now with daily activities.
The “Beyond 50” report found that, on average, people with disabilities 50 and older give their community a grade of B-/C+ as a place that makes it possible for them to live independently. While some community features receive good marks, others—most notably, public transportation—are rated poorly. More than half of respondents (59%) currently give their communities a “C” or lower rating for having dependable and accessible public transportation.
Inadequate health insurance coverage is at the top of a list of problems experienced by persons 50 and older with disabilities. This is even true for those with Medicare coverage, which does not pay for prescription drugs. In addition, one out of three reports specific needs, such as for assistive equipment, not covered by health insurance.
Rother said while many relatively inexpensive immediate fixes would make an important qualitative difference, other improvements will require longer-term, more fundamental change. Planning for these changes must start now, he said. He noted that while the vast majority of persons age 50 or older do not require long-term assistance at any given time, most people will require some help at some point in their lives, and most families will deal with these issues as family members age. Rother also pointed to consumer checklists in the report to help individuals and families take steps to prepare for long-term independence, including living a healthy lifestyle.
Based on the “Beyond 50” findings, AARP outlines a number of proposals for critical long-term improvements:
Individuals must be insured against the high costs of long-term supportive services. Ways must be found to share the risk of these unpredictable costs more widely among public and private sources.
Public funding for long-term supportive services needs to be reoriented toward more options for home and community-based care. The nation also must provide more options for “consumer-direction” in publicly funded programs.
Communities need to be made more physically accessible for more people with disabilities.
Information and services need to be more navigable for those who are trying to learn more about available long-term services and whether or not they are eligible.
America’s health care system must adjust its focus to enhance functioning and health-related quality of life, not just provide acute and curative care.
The report, by AARP’s Public Policy Institute, is based on commissioned original research, including a telephone survey of 1,102 persons with disabilities age 50 and older conducted by Harris Interactive last September. It also includes an AARP-conducted review of a wide array of previously published data and literature, as well as newly commissioned analyses of the National Long-Term Care Survey and the Medical Expenditure Panel Survey.
AARP is a nonprofit, nonpartisan membership organization dedicated to making life better for people 50 and over. We provide information and resources; engage in legislative, regulatory and legal advocacy; assist members in serving their communities; and offer a wide range of unique benefits, special products, and services for our members. These include AARP The Magazine, published bimonthly; AARP Bulletin, our monthly newspaper; Segunda Juventud, our quarterly newspaper in Spanish; NRTA Live & Learn, our quarterly newsletter for 50+ educators; and our Web site, www.aarp.org. We have staffed offices in all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.