Population Estimates of Disability and Long-Term Care

Overview

A large minority of Americans (42.7 million or 17.2%) have disabilities (Table 1). Disability is broadly defined functionally as difficulty with certain activities (e.g., climbing stairs, walking, attending school), due to a physical or mental health impairment. Most people with disabilities (60%) are under 65. In 1990, 4.5 million children under 18, 21.1 million adults aged 18-64, and 17.1 million persons aged 65+ reported a disability.

About 12.7 million Americans need long-term care (LTC), which is defined as help from another person to take care of basic needs, such as dressing or bathing. About 29.7% of all people with disabilities and 5.1% of the entire population need LTC. The LTC population includes 262,000 children, 5.1 million nonelderly adults, and 7.3 million elderly persons (Table 2).

Institutional Population

Almost all people with disabilities and LTC needs live in the community: 40.1 million or 93.9% of those with disabilities live in the community as do 10.2 million or 80.3% of those with LTC needs. About 2.6 million persons with disabilities reside in a variety of institutions, i.e., nursing homes, intermediate care facilities for the mentally retarded (ICF/MRs), and facilities for the mentally ill. Facilities for the mentally retarded include Medicaid-certified ICF-MRs and other forms of residential care. Facilities for the mentally ill include residential treatment or in-patient care in State and county mental hospitals, private psychiatric hospitals, VA psychiatric organizations, residential treatment centers for emotionally disturbed children, multi-service mental health organizations, and other residential organizations.

Conditions Resulting in Disability and LTC

Disabilities: According to the 1990 SIPP, among the community population, the leading conditions (in order), resulting in a disability were: for children learning disabilities (#1), speech disorders (#2), mental retardation/other developmental disabilities (#3), mental illness (#4), and respiratory conditions (#5). For adults 18-64, the top causes of disability were bad back (#1), arthritis (#2), coronary heart disease (#3), respiratory conditions (#4), stiffness (#5), mental illness (#6) and mental retardation (#7). For persons age 65+, the top conditions were arthritis (#1), coronary heart disease (#2), bad back (#3), respiratory conditions (#4), visual impairments (#5), stiffness (#6), and stroke (#7).

LTC: In the community, the top causes of LTC needs for adults 18-64 were bad back (#1), mental retardation (#2), mental illness (#3), coronary heart disease (#4), and respiratory conditions (#5). For persons age 65+, the top conditions for LTC were arthritis (#1), coronary heart disease (#2), visual impairments (#3), stroke (#4), and respiratory conditions (#5).

Gender

Disability: In the community slightly more women (54%) than men have disabilities. Altogether, 37.4% of children, 53.8% of working-age adults, and 60% of those aged 65+ with disabilities are female.

LTC: Most adults with LTC needs in the community are women (62.6%), due to their greater longevity. Approximately 55.4% of those aged 18-64 and 68.4% of those aged 65+ with LTC needs are women.

Data and Definitions

Institutional Population

Sources: Data on persons in nursing homes, homes for the physically (homes and schools for the blind, the deaf, or others with physical disabilities) or mentally handicapped, prisons, homeless shelters, and homeless persons on the street came from the 1990 Decennial Census. Data on facilities for the mentally ill are from a 1990 census conducted by the Center for Mental Health Statistics, Substance Abuse and Mental Health Administration (CMHS/SAMHA), DHHS. Data on facilities for the mentally retarded are from the Center for Residential and Community Services, University of Minnesota (Lakin).

Definitions: People residing in places that primarily care for chronically ill or disabled persons (i.e., nursing homes, homes for the physically or mentally handicapped, facilities for mentally ill, facilities for the mentally retarded) were assumed to have a disability and need LTC. Persons in prisons, homeless shelters, and those who were homeless were counted as having a disability, if on the 1990 Decennial Census, they reported difficulty (due to a health condition) in the ability to: work OR take care of their personal needs OR go outside the home alone. These persons were counted as needing LTC if they reported difficulty with taking care of their personal needs OR going outside the home alone.

Community Population

Sources: Data on disability and LTC for people living in the community came from the 1990 Survey of Income and Program Participation (SIPP), a national survey of the civilian noninstitutionalized population.

Definitions: In SIPP, disability is defined as difficulty with or inability to perform age-appropriate functions due to a physical or mental conditions or impairments. Specifically, disability is defined as a report of:

• Under age 6: (1) limitations in the ability to walk, run, or use stairs; OR (2) receipt of therapy or diagnostic services designed to meet developmental needs.

• Age 6-14: (1) limitations in the ability to walk, run, or use stairs; OR (2) limitations in the ability to do regular schoolwork; OR (3) receipt of special education services.

• Age 15+: (1) sensory difficulties with seeing, hearing, or speaking; (2) difficulty or inability in performing at least 1 of 4 functions (i.e., lifting 10 lbs., climbing a flight of stairs, walking 3 city blocks, getting around inside the home); OR, (3) difficulty with at least 1 of 5 activities of daily living or ADLs (i.e., getting into or out of a bed or chair, bathing, dressing, eating, toileting); OR, (4) difficulty with at least 1 of 5 instrumental activities of daily living or IADLs (i.e., using the telephone, going outside the home, keeping track of money and bills, preparing meals, doing light housework).

• LTC for ages 15+: help from another person in order to perform at least 1 ADL or IADL. LTC counts for children came from the 1987 National Medical Expenditure Survey (NMES) and the 1988 National Health Interview Survey (NHIS): small sample sizes precluded use of data on conditions.

Sources

Census Bureau, "1980 Census: Persons in Institutions or Other Group Quarters," Washington, DC, 1984.

Census Bureau, Unpublished computer tabulations from the 1990 Decennial Census.

Center for Mental Health Statistics, Substance Abuse and Mental Health Services Administration, DHHS (unpublished 1990 tabulations).

Lakin, C., University of Minnesota (unpublished tabulations).

Unpublished computer tabulations from the 1990 Survey of Income and Program Participation.

Author: Michele Adler, Office of Disability, Aging, and Long-Term Care Policy

ASPE Research Notes is circulated periodically by the Office of the Assistant Secretary for Planning and Evaluation. This paper reflects only the views of its author and does not necessarily represent the position of the U.S. Department of Health and Human Services. For further information on long-term care or disability issues, call Mary Harahan, Office of Disability, Aging, and Long-Term Care Policy at 202-690-6613.