Office on Disability
Disability and Aging
Prevalence of Disability
The Census Bureau defines a person with a disability as someone who has difficulty in performing functional tasks or daily living activities or meets other criteria, such as a learning or developmental disability. People are considered to have a severe disability if they are completely unable to perform one or more of these tasks or activities, need personal assistance or have one of the severe conditions described in the report. The following statistics are from the panel of the Survey of Income and Program Participation (SIPP) that started in 1996 and are intended by the Census Bureau to broadly represent persons who fit the definition of the Americans with Disabilities Act. 1
- According the US Census Bureau’s 1997 Survey of Income and Program Participation (SIPP), which provides the latest data available using a broad measure of disability, there were 52.6 million persons with a disability living in the community (ages 5 and older). Additionally, about 2 million people live in nursing homes and other long-term care facilities. Thus, bringing the total prevalence to the oft-cited 54 million Americans with disabilities.
- In 1997, nearly 1 in 5 Americans said they had some level of disability, while 1 in 8 -- 33 million -- reported they had a severe disability, according to the U.S. Census Bureau.
- The likelihood of having a disability increased with age.
- For those 45 to 54 years old, 22.6 percent had some form of disability, 13.9 percent had a severe disability, and 3.6 percent needed personal assistance.
- For those 65 to 69 years old, the comparable estimates were 44.9 percent, 30.7 percent, and 8.1 percent.
- For the oldest age group, 80 years old and over, the estimates were 73.6 percent, 57.6 percent, and 34.9 percent.
- The poverty rate among the population 25-to-64 years old with no disability was 8 percent, compared with 10 percent for people with a nonsevere disability and 28 percent for people with a severe disability.
- In 1997, 9.7 million people age 16 to 64 had a disability that prevented them from working and another 7.2 million were limited as to the kind or amount of work they could do.
Number of Americans Aging with Long-Term Disabilities
- For the first time in history, many individuals with significant disabilities, like their non-disabled counterparts before them, are surviving long enough to experience the rewards and challenges of "aging." 2, 3
- However, determining the size of this emerging segment of the disabled population has been difficult due to lack of appropriate survey questions that ask about age of onset and duration of primary disability. 4
- The only analyses available to date are from the 1990 U.S. Census and suggest that there may be as many as 25,000,000 Americans who are aging with various types of early-onset and long-term disabilities. 5
Prevalence of Secondary Conditions among People with Disabilities
- People living with long-term with disabilities are at increased risk for “secondary conditions,” defined as preventable physical, mental, and social disorders resulting directly or indirectly from an initial disabling condition.6 The Centers for Disease Control and Prevention in their Healthy People 2010 Report targeted prevention of secondary conditions as a major component of health promotion for people with disabilities. 6
- In a recent article Kinne, Patrick and Lochner report on the first effort to collect (self-report) population data on population prevalence and impact of 16 common secondary conditions.8 Prior to this article, what has been known about the prevalence of secondary conditions stems primarily from clinical studies of patients and convenience samples. 7
- According to data from 2075 respondents to the disability supplement of the 2001 Washington State Risk Factor Surveillance Survey, 87 percent of respondents with disabilities reported at least one secondary condition compared to only 49 percent of respondents without disabilities. People with disabilities also reported more conditions than did those without limitations, with an average of 4.02 vs. 1.28 conditions per respondent (p<.0001). 8
- For the 8 most prevalent conditions (pain, weight problems, fatigue, difficulty getting into the community, falls and injuries, sleep problems, muscle spasms, bowel and bladder problems) having a disability was the strongest predictor of the presence of the condition compared to age, gender, education, income and health status. Age and health status contributed more to having anxiety, depression, social isolation, and asthma than did disability, but disability remained a significant factor. 8
Needs and Costs of Personal Assistance and Community-Based Services
- Over 13 million adults (6.2 million aged 65 and older) living in the home and community receive an average of 31 hours of week of personal assistance services with activities of daily living. 9
- Only 16 percent of total care is paid care. The economic value of informal personal care is estimated to be over $200 billion per year (for all adults).9
- About 1 million adults have unmet needs for help with two or more activities of daily living for about 17 hours per week. Those individuals with unmet needs for help are significantly more like to have adverse consequences including discomfort, weight loss, dehydration, falls, burns, and dissatisfaction with help received.10
- The US spent an estimated $151 billion on long term care in 2003. Of this total, 73 percent was spent on institutional care.11
- Medicaid is the major payer of long term care in the US, paying for 40 of total long term care expenditures.12
- In 2004, Medicaid spent $89 billion on long-term care and of this, 64 percent is spent on institutional services and 36 percent on home and community based services. Of the total Medicaid spending, 32 percent was for long term care in 2004.12
- Medicaid home and community based waivers, personal care, and home health care are the major sources for providing personal care to the aged and disabled. These programs provided care to over 2 million participants and spent over $25 billion in expenditures in 2002. There is waiver interstate variation in the amount and types of services provided. The total number of people on waiting lists of HCBS is 206,427 in 2004. The aged and disabled represent 53% of those on waiting lists.13
- Using the latest expenditures data, it would cost an estimated $4 billion in new funds to provide Medicaid community based attendant services and support (MiCASSA) to individuals with unmet need in the US.14
- McNeil, J. (2002). American with Disabilities: 1997. Current Population Reports P70-73. Washington: US Census Bureau, www.census.gov/hhes/www/disability/sipp/disable97.html.
- Ansello, E.F., and Eustis, N.N. (1992). A common stake? Investigating the emerging 'intersection' of aging and disability. Generations, 16(1), 5-8.
- Campbell, M.L. (1998). The two worlds of disability: Bridging the gaps between the aging network and the disability community. The Southwest Journal of Aging, 13(2), 3-11.
- Kemp, B.J. and Mosqueda, L. (Eds.) (2004). Aging with a Disability. Baltimore: The Johns Hopkins University Press.
- McNeil, J. (1994). Americans with Disabilities, Bureau of the Census, Statistical Brief, SB/94-1. In LaPlante, M. Disability in the United States: Prevalence and Causes, 1992.
- Lollar D. Public health and disability: emerging trends. Public Health Rep. 2002;117:131–136.
- Seekins T, Clay J, Ravesloot CH. A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by three independent living centers in a rural state. J Rehabil. 1994;60(2):47–51.
- Kinne, S., Patrick, D.L., and Lochner, D.D. (2004). Prevalence of Secondary Conditions Among People With Disabilities. American Journal of Public Health. Vol 94, No. 3, 443-445.
- LaPlante, M.P., Harrington, C., and Kang, K. (2002). Estimating Paid and Unpaid Hours of Personal Assistance Services in Activities of Daily Living Provided to Adults Living at Home. Health Services Research. 37 (2): 397-415.
- LaPlante, M.P., Kaye, S., Kang, T., and Harrington, C. (2004). Unmet Need for Personal Assistance Services: Estimate the Shortfall in Hours of Help and Adverse Consequences. J. of Gerontology: Social Sciences. 59B (2): S98-S108.
- Smith, C., Cowan, C., Sensening, A., and Catlin, A., and the Health Accounts Team (2005). Health Spending Growth Slows in 2003. Health Affairs. 24 (1): 185-194. 3
- Burwell, B., Sredl, K, and Eiken, S. (2005). Medicaid Long Term Care Expenditures in FY 2004. Cambridge, MA: Medstat.
- Kitchener, M., Ng, T., Willmott, M, and Harrington, C. (2005). Medicaid Home and Community Based Services: National Trends in Expenditures, Participants, and Policies. Presentation on the National Home & Community Based Services Waiver Conferences, Orlando, Fl: May 2005.
- LaPlante, M., Kaye, H.S., and Harrington, C. (2005). Estimating Expenditures for the Medicaid Community-Based Attendant Services and Supports Act (MiCASSA). San Francisco, CA: University of California, National Center for Personal Assistance Services.