The Center for An Accessible Society Disability Issues Information









Independent living for a million adults jeopardized by a shortfall of a few hours of help

March 16, 2004 -- More than 3 million people in the U.S. need help from another person to live independently and many of them face going hungry, falling or other problems that increase the risk of institutionalization and death, according to a new study published by the Journal of Gerontology.

The study by researchers at the Disability Statistics Center at the University of California at San Francisco describes how well adults with long term care needs who are living in houses or apartments in the community rather than in nursing homes are doing. Such individuals need assistance from another person in activities of daily living (ADL) that are essential for their survival, including bathing, dressing, getting into or out of bed or a chair, toileting, and eating and other activities that are necessary to maintain their homes, such as shopping and preparing meals. The study, funded by the National Institute on Disability and Rehabilitation Research, is the first to estimate how many additional hours of help people need.

Most of these adults receive some help, but not enough to fill their unmet needs. Individuals with unmet need for personal assistance with two or more of the five basic ADLs have a shortfall of 16.6 hours of help per week compared with those whose needs are met, said lead author Mitchell P. LaPlante.

Having unmet needs with ADLs is linked with numerous adverse consequences, especially for people who live alone. Those with unmet need are 10 times as likely to go hungry because no one is available to help them eat as those whose needs are met (24.5 versus 2.1 percent), 20 times more likely to miss a meal because of lack of help with shopping (15.3 versus 0.7 percent), 5 times as likely to lose weight unintentionally (52.2 versus 10.0 percent), and almost three times as likely to fall because no one was around to prevent their falling (64.5 versus 24.5 percent). As a result, these people are at risk of being forced to leave their homes and move into institutions, such as nursing homes.

Among adults whose assistance needs are not fully met, people living alone fare worse than those who live with others. Those living by themselves receive only 56 percent of the help they need, while those living with family members or friends receive 80 percent of the hours of help they need.

The shortfall is twice as great for persons who live along as for those who live with others, the researchers found. People who live alone and have unmet needs fare worse than people with unmet needs who live with others, and both groups are more likely than those whose needs are met to experience adverse consequences.

The causes of unmet need are many. Informal helpers, such as family and friends, may have to balance other responsibilities that limit the amount of help they can provide. People without informal help depend largely on formal assistance, if affordable and available. Such public help remains biased toward institutional living.

Working-age adults account for half the prevalence of met and unmet need among those needing help in two or more ADLs. The researchers analyzed the working-age population separately and found that the relative shortfall in needed hours was somewhat smaller than for all ages combined (18 versus 23 percent). However, unmet need among people living alone is more an issue for the elderly, because two-thirds of those living alone and needing more help are age 65 or older.

Access to paid help is critical for people who live alone because they are much more likely to receive paid help than are people who live with others (62 versus 24 percent). Of people who live alone, those whose needs are met are more likely than those whose needs are unmet to get paid help (70.2 versus 50.3 percent). More than half of that help is reported to be paid by Medicare or Medicaid.

Thus, the study found, expanding access to paid PAS appears crucial in reducing unmet need among those who live alone. If the estimated shortfall in hours were to be provided through public funds, the cost of eliminating unmet need among people who live alone with low income ranges from $1.2 to $2.7 billion, a relatively small amount. However, the cost for people who live with others is almost twice as large, from $2.2 to $7.1 billion.

On the positive side, the study finds that 93 percent of the need for assistance is being met, largely by family members and friends. Dr. LaPlante and co-authors Drs. H. Stephen Kaye, Taewoon Kang, and Charlene Harrington report that previous research, by looking only at the prevalence of unmet need for PAS, creates a false impression that unmet need is a large and costly problem to resolve. In fact, only 6.6 percent of all needed hours of help are unmet among adults needing help in two or more ADLs.

Dr. LaPlante believes that even a modest amount of unmet need can jeopardize a person s ability to live independently. Unmet need likely increases the chances of an individual being prematurely institutionalized or being hospitalized, and reduces an individual s participation in society. These are large costs that, if avoided, would offset the cost of providing the additional help that is indicated. The reduction, if not the elimination, of unmet need for help is a financially achievable goal for the nation and one that long-term policy should focus on.

For more information, contact
Mitchell P. LaPlante, Disability Statistics Center, Institute for Health and Aging,
Center for Accessible Society Director Cyndi Jones at (619) 232-2727 x111



The Center for Personal Assistance Services provides research, training, dissemination and technical assistance on issues of personal assistance services (PAS) in the United States.

Powerpoint presentation (from the Center for Personal Assistance Services): Unmet Need for Personal Assistance Services. LaPlante, M.P., Kaye, S., Kang, T., & Harrington, C. (2003, November 18). Presented at the 131st Annual Meeting and Exposition hosted by American Public Health Association.
Download Powerpoint

The Independent Living Research Utilization Olmstead project provides disabiliity advocacy training on the Olmstead decision; their website offers resources.

Consumer Choice and Control:
Personal Attendant Services and Supports in
Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999

The Jan. 24 New York Times noted the "growing number of severely disabled people who are turning to personal assistants to help them keep up with the daily grind or even carve out successful careers."

Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

"Understanding Medicaid Home and Community-Based Services: A Primer" -- from the U.S. Dept. of Health and Human Services, available at

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services


How States' "Nurse Practice" Acts work against consumer direction -- from the January, 1999 Ragged Edge magazine






Expert sources

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