U.S. Department of Health and Human Services

The Size of the Long-Term Care Population in Residential Care: A Review of Estimates and Methodology

Executive Summary

Brenda C. Spillman and Kirsten J. Black

The Urban Institute , Health Policy Center

February 28, 2005

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This report was prepared under contract #HHS-100-97-0010 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the Urban Institute. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, John Drabek, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. His e-mail address is: John.Drabek@hhs.gov.

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

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In recent years, a number of trends in care for those with a disability, particularly the elderly, point to a shift from nursing homes to other care settings. States, which determine Medicaid eligibility and benefits, have devoted resources to community-based care to contain nursing home spending and to address the preference of beneficiaries for noninstitutional alternatives. Since the 1990s, there also has been independent growth of residential care alternatives serving primarily an older private pay clientele, as a supportive environment for those no longer able or willing to perform activities needed for independent living at home.

A result of this movement toward alternatives to care at home and to traditional institutional settings has been a blurring of the demarcation between private households and residential care places and between noninstitutional and institutional settings. This blurring has made it less likely that survey data with samples based on historical concepts of housing units and group quarters deriving from definitions used in the Decennial Census fully represent the populations of interest for studies of persons with disability. The result is increased uncertainty about where the disabled are receiving care, the size of the population in various accommodative settings, and the characteristics of those receiving care in these settings. This type of information is critical to the ability to quantify this vulnerable population and to monitor care arrangements and quality both for public policy purposes and for consumer information.

This report is part of a project that will attempt to better understand the source of differences in estimates of the older population in residential care by analyzing key national surveys. It presents results of a review of existing estimates of the number of alternative residential care settings and nursing homes and the number of persons residing in them. It has three aims:

1. To describe the data that have been used in recent years to generate estimates and summarize the range of existing estimates.

2. To identify methodological issues that contribute to differences among estimates, focusing on those that can be investigated using available national surveys.

3. To identify surveys that appear to offer the best opportunity for analysis to provide a better understanding of the size and characteristics of the residential care population and insights into how collection of data on residential care settings can be improved.

 

Background

Alternative residential care settings encompass a variety of places and care arrangements that provide both housing and services outside of a nursing facility for those who are unable or unwilling to live independently. Beyond that very broad description, there appears to be no consensus on criteria for identifying or distinguishing between these settings. They include such places as small foster care homes, board and care or personal care homes, congregate housing, and assisted living facilities. In the past decade, state licensing practices have changed to keep pace with an evolving residential care industry, but these changes have done little to bring consistency to terminology or criteria for alternative residential care settings. Changes in state licensing may also have affected nursing home estimates, although certification under Medicare provides a more clear cut foundation for identifying nursing homes.

Lack of consistent definitions and differences in methodology used by the Decennial Census and other national surveys to classify and identify settings affect whether alternative residential settings are captured well or at all in surveys that target either the noninstitutional or institutional population, but not both, and reduce the comparability of estimates across surveys that represent both populations. For example, methodology used in the 2000 Census classifies assisted living and congregate care in the broad category of housing units, so that no Census estimate of such settings can be made.

Sources of estimates we examined fall into three general categories:

• private provider-based data from industry, association, or other sources;
• provider-based estimates from public sources; and
• individual- or household-level survey data, including data from the Decennial Census.

 

Range of Existing Estimates

For nursing homes, despite differences in methodology, there was greater consistency in estimates of both the number of facilities (15,000 to 18,000 in all years) and the number of older residents (1.2 million to 1.56 million) than in estimates for residential care alternatives. The estimates appear to show a mild upward trend in the number of nursing homes prior to 1997 and a mild downward trend thereafter. The trend for residents appears to have been slightly downward in the late 1990s but lack of consistent published estimates makes the trend since then unclear.

For residential care alternatives, estimates suggest a stronger upward trend throughout our period of observation, but the range of estimates for both the number of places and the number of residents is greater than for nursing homes and residents. Differences between estimates of the number of alternative residential care settings ranged from 14,000 to nearly 40,000, depending on the year. Estimates of the number of residents also differed to a greater degree than for nursing homes, but the most recent estimates, which allow identification of both community and institutional or facility settings, suggest a population in these alternative settings on the order of 800,000.

 

Key Methodological Issues

In our review we identified five key methodological issues contributing to differences across estimates that are most amenable to empirical investigation using existing surveys:

• age of the population examined (i.e., all persons versus persons age 65 or older);
• method used to assigning individuals to the “facility” or “institutional” population (and conversely, the “community” or “noninstitutional” population);
• method used to identifying nursing homes (e.g., self-identification, certification);
• method used to identifying type of alternative residential care (e.g. named type or services offered); and
• sample representation and weighting (e.g. cross-section or annual users).

 

Data Sources for Analysis

The key features of data best suited for analysis of these five issues are the following:

• population representation, so that all elements of the population of interest--older persons with disabilities--are represented;
• the ability to determine how settings in which individuals reside are identified;
• the ability to apply different criteria more similar to those used in comparison surveys; and
• extensive documentation of survey methods.

Four national surveys are recent and meet all or most of these criteria: The 1999 National Long Term Care Survey (NLTCS), the 2002 Medicare Current Beneficiary Survey (MCBS) Access to Care file, the 2002 MCBS Cost and Use file, and the 2002 Health and Retirement Survey (HRS)/Assets and Health of the Oldest Old (AHEAD).

The first three surveys, the NLTCS and the two MCBS files, meet all criteria. They are population-based surveys that either are or can be limited to the Medicare population age 65 or older, and data elements are available that allow some potential for investigating more consistent alternate definitions of residential care. All identify residential care by named type of setting and identify services provided for some or all of those identified as living in residential care. In addition, comparisons across the three surveys offer information about the importance of sample representation because they represent, respectively, a cross-section of the Medicare elderly, those always enrolled during the survey year, and those ever enrolled during the survey year.

The HRS/AHEAD, which is a community survey, meets all criteria except full population coverage. A strength of the HRS/AHEAD is that, unlike the other three surveys, it does not rely on named types of settings, but rather screens all persons not in traditional freestanding households for services available and received. Comparison of estimates from the HRS/AHEAD with those from the surveys representing the full population also has may shed light on the implications of Census-based rules for identifying the excluded institutional population for residential care estimates.

All four surveys contain detailed information about the characteristics and particularly the disability of respondents. This detailed information provides the opportunity to understand what subpopulations are being served by different types of residential care, as well as confirming whether different methods of identifying residential settings are capturing similar populations.

The Full Report is also available from the DALTCP website (http://aspe.hhs.gov/_/office_specific/daltcp.cfm) or directly at http://aspe.hhs.gov/daltcp/reports/2005/ltcpopsz.htm.