Characteristics of Persons with Developmental Disabilities: Evidence from the Survey of Income and Program Participation

01/01/1990

U.S. Department of Health and Human Services

Characteristics of Persons with Developmental Disabilities: Evidence from the Survey of Income and Program Participation

Craig Thornton

Mathematic Policy Research, Inc.

January 1990

PDF Version: http://aspe.hhs.gov/daltcp/reports/charctes.pdf (32 PDF pages)


This report was prepared under contract #HHS-100-88-0035 between U.S. Department of Health and Human Services (HHS), Office of Social Services Policy (now the Office of Disability, Aging and Long-Term Care Policy (DALTCP)) and Mathematica Policy Research, Inc. 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 office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The Project Officer was Robert Clark.

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.


TABLE OF CONTENTS

OVERVIEW OF THE SURVEY OF INCOME AND PROGRAM PARTICIPATION
DEFINING DEVELOPMENTAL DISABILITIES WITH DATA FROM SIPP
1. Measures of the Severity of Limitations
2. Measures of the Onset of Limitations
3. Identifying Persons with Developmental Disabilities in SIPP
A PROFILE OF PERSONS WITH DEVELOPMENTAL DISABILITIES
1. The Accuracy of the SIPP-Based Definitions of Developmental Disabilities
2. Characteristics of the Persons Identified as Developmentally Disabled
3. Conclusions from the Profile of Persons with Developmental Disabilities
REFERENCES
NOTES
APPENDICES
APPENDIX A: Facsimiles of the 1984 SIPP Third Wave Questions on Disability Status
APPENDIX B: Specifications for Classification of Limitations in Functioning

As Federal and state programs affecting persons with developmental disabilities have been reevaluated in the last 20 years there has been a rapid growth in the demand for information about these persons. Unfortunately, little comprehensive information has been available about the general characteristics of this group. As a result, many of the new interventions had to be developed without basic information about the number, demographics, functioning, economic status, and overall health of persons with developmental disabilities, particularly those persons living in the community rather than in institutions.

Information from the Survey of Income and Program Participation (SIPP) can be used to address this paucity of information about persons with developmental disabilities.1 SIPP is a nationally-representative survey that collected data about the characteristics of noninstitutionalized persons, including information about basic demographics, income, work, use of government programs, and general health and disability. While it is not possible to identify precisely persons with developmental disabilities in SIPP, the available information can be used to develop a profile of persons who are likely to have developmental disabilities. This population profile provides valuable insight into the general nature of this group.

The first section of this profile provides an overview of SIPP. The second section examines the definition of developmental disabilities and the ways in which the information collected in SIPP can be used to approximate this definition. The third section then provides information about the number of characteristics of persons who are identified as being likely to have developmental disabilities.

OVERVIEW OF THE SURVEY OF INCOME AND PROGRAM PARTICIPATION

The Survey of Income and Program Participation is a nationally representative longitudinal survey of the adult civilian noninstitutionalized population in the United States. This survey collects detailed monthly information on income, program participation, and wealth. It is a multi-panel longitudinal survey to which replacement panels are added each year. The first (or 1984) Panel began in October 1983 and interviewed a longitudinal sample of persons at four-month intervals for a period of two and one-half years. The SIPP sample is defined by adults, age 15 or older, residing in approximately 20,000 addresses (dwelling units) forming a cross-section sample of dwelling units in the United States. Although the survey is longitudinal, it is designed to support cross-sectional estimation for persons, families, and households residing in the 50 states and the District of Columbia.

Each round of interviewing (or wave) asks a standard "core" set of questions about income, employment, and participation in several government programs. Most wavers also include topical modules that ask supplemental questions pertaining to a variety of issues that vary from interview to interview. One topical module in the 1984 Panel collected information about health conditions and limitations in functioning and work. It is this module from which this profile of persons with developmental disabilities has been developed.2

Estimates of persons with developmental disabilities presented in this paper reflect the population in April 1984. The population estimates pertain to the U.S. civilian noninstitutional population, which comprises about 98 percent of the total U.S. population. The estimates are based on sample weights that reflect the probability of selection into the sample and adjustments to account for interview nonresponse and to reflect independent estimates of persons by age, race, and sex.

Because these estimates are derived from a sample survey, they are subject to sampling and nonsampling error. Sampling error stems from the natural variation of characteristics in the population and the fact that only a sample of the population is interviewed. Sampling error is explicitly taken into account when presenting estimates and making comparisons. Estimates where the standard error is more than 30 percent of the estimates's value are explicitly marked in the table. Furthermore, all comparisons discussed in the paper have been found to be statistically significant at the 90 percent level using a two-tailed test; other differences may not be significant. Formulas for approximating standard errors and making statistical tests are presented in U.S. Bureau of the Census (1987) and in Bye and Gallicchio (1988). In reporting estimates, all population counts have bee rounded off to the nearest 1,000 persons. Estimates of percentages are computed on the unrounded numbers, but are reported rounded to one decimal place.

Nonsampling error cannot be explicitly measured or completely eliminated. Examples of nonsampling errors which affect the estimates presented here include:

  • Misreporting of key variables used to classify persons as developmentally disabled, particularly the variables pertaining to limitations in work and the age at which such limitations became manifest.

  • Noninterviews which although they are corrected in part by the weighting process may still result in some bias because sample attrition in SIPP is not random.

  • Item nonresponse and inconsistencies across responses which are corrected in part by the edit and imputation procedures employed by the Census Bureau in producing the data. However, these procedures do not always perform well, particularly at the extremes of the income distribution.

For a more complete discussion of sampling and nonsampling error in SIPP see U.S. Bureau of the Census (1987) and the references noted therein.

DEFINING DEVELOPMENTAL DISABILITIES WITH DATA FROM SIPP

The distinguishing feature of developmental disabilities is that they become manifest during childhood and severely interfere with the typical course of a person's development. Initially, the term developmental disabilities was used to refer to persons with mental retardation, cerebral palsy, epilepsy, and autism. Since the late 1970s, the focus of the definition of developmental disabilities has shifted away from lists of specific conditions and now emphasizes limitations in specific life activities and individuals' needs to deal with these limitations. Developmental disabilities are currently defined by the Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987 as: a severe, chronic condition that:

  1. is attributable to a mental or physical impairment or a combination of mental or physical impairments
  2. is manifested before the person attains age twenty-two
  3. is likely to continue indefinitely
  4. results in substantial functional limitations in three or more of the following areas of major life activity:
    • self-care
    • receptive and expressive language
    • learning
    • mobility
    • self-direction
    • capacity for independent living
    • economic self-sufficiency
  5. reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment or other services which are of lifelong or extended duration and are individually planned or coordinated.

SIPP does not contain sufficient information to operationalize this complete definition, even if it were clear what this definition meant by a "substantial" functional limitation or how to determine a need for lifelong interdisciplinary services. Thus, it is necessary to approximate this definition using the information available in SIPP, paying particular attention to approximating two critical aspects of the definition: the severity of the limitation and onset prior to adulthood.

1. Measures of the Severity of Limitations

For persons ages 16 to 72, SIPP contains information about severe limitations in four of the seven major life areas listed in the definition of developmental disabilities: economic self-sufficiency, self-care, independent living, and mobility. Limitations in economic self-sufficiency are measured by questions that ask whether the person's health or condition either (1) prevents them from working or (2) limits the amount or kind of work that he or she can do.3 Limitations in self-care can be inferred from questions that ask about the need for assistance with basic Activities of Daily Living (ADLs): eating, dressing, personal hygiene, getting in and out of bed, and ambulation in the home.4 Limitations in the ability to live independently are measured by questions that ask about the need for assistance with some of the activities typically included in lists of Instrumental Activities of Daily Living (IADLs), specifically light housework, meal preparation, and getting around outside the house.5 Mobility is assessed in questions about difficulty climbing stairs or walking three blocks.

This information about limitations in work and the need for assistance with ADLs or IADLs provides a good basis for identifying persons with severe limitations. However, there are two important weaknesses with this information. First, SIPP addresses only four of the seven life areas contained in the definition of developmental disabilities. This focus means that some individuals with severe limitations in self-direction, communication, or learning may be missed by a classification scheme using only the data in SIPP. Second, SIPP does not explicitly distinguish between limitations that are expected to persist indefinitely and short-term limitations. Thus, persons with temporary limitations related to illnesses, accidents, or childbirth may be classified in the same manner as persons with chronic limitations related to mental retardation or cerebral palsy.

For children, both the practical definition of developmental disabilities and the information collected in SIPP are different than for adults. Many of the life areas are ill-defined or do not pertain to children, particularly the life areas of economic self-sufficiency, self-direction, and independent living. Thus, a simpler definition based on typical activities for children would be appropriate. SIPP essentially uses such a modified approach by collecting information about whether a child (age 17 or younger):

  • Has a long-lasting physical condition that limits his or her ability to walk, run, or play
  • Has a long-lasting mental or emotional problem that limits his or her ability to learn and do regular school work

While there are undoubtedly some measurement problems with respect to these questions, children with limitations in either of these two areas are likely to be developmentally disabled.6

2. Measures of the Onset of Limitations

SIPP collects information about the onset of limitations only in relation to work. For persons who report being limited in the amount or type of work that they can do, SIPP determines whether the limitation began before the person became of "working-age." For persons who report being unable to work, SIPP determines whether they have ever been able to work. While working-age is not explicitly defined in SIPP, it seems to provide an acceptable approximation to the aspect of the definition of developmental disabilities pertaining to onset prior to adulthood.

No age of onset is determined for limitations in ADLs or IADLs. However, for persons who report that their limitation(s) are due to mental retardation, it is reasonable to infer an onset during childhood. Children who are reported in SIPP as being limited in physical activities or learning have an onset prior to age 22 by definition.

3. Identifying Persons with Developmental Disabilities in SIPP

The information available in SIPP about persons ages 16 to 72 has been used to define three groups of persons that approximate to different degrees the population of persons with developmental disabilities:

  • Narrow Definition classifies persons as being developmentally disabled if they report that their health or condition has always prevented them from working at a job or business.

  • Middle Definition includes all persons who meet the narrow definition plus two other groups of persons:

    1. those who report being currently unable to work and having a work limitation that started prior to working age
    2. those who report having mental retardation and either needing assistance with ADLs or IADLs or receiving disability benefits.7
  • Broad Definition includes all the persons who meet the narrow definition or who report a work limitation that began prior to their reaching working-age.

The narrow definition includes persons with relatively severe limitations that arose prior to adulthood. Thus, persons meeting this definition are generally likely to be developmentally disabled. The drawback of this definition is that it may exclude persons who have attempted to work despite their severe limitations or who have worked in supportive settings such as sheltered workshops or supported employment programs. Also, as noted earlier, persons with limitations in life areas other than work will be excluded from this definition.

The middle definition addresses these two deficiencies of the narrow definition by including persons with limitations due to mental retardation and persons whose work disability had its roots in limitations that arose prior to working-age. This middle definition is probably the most accurate of the three alternative SIPP-based definitions.

The broad definition is almost certainly over-inclusive since some persons who are limited in the amount or type of work they can do would not be impaired sufficiently to be considered to have a developmental disability. Nevertheless, this group provides a useful reference since it contains persons who have work limitations that arose prior to their reaching working-age.

In addition to these three groups, it is useful to consider those persons who would not be classified as developmentally disabled under any of the definitions. This group, which encompasses over 97 percent of the noninstitutional population ageas 16 to 72, includes persons with no limitations in functioning as well as persons whose limitations arose in adulthood. This group provides a reference point for interpreting the information about persons with developmental disabilities.

These four groups are defined for persons ages 16 to 72, the persons who are asked the questions about work limitations. It would also be possible to define a fifth group: children who are limited in their ability to walk, run, play, or learn. These children are profiled in Mathematica Policy Research (1989).

A PROFILE OF PERSONS WITH DEVELOPMENTAL DISABILITIES

Table 1 presents the characteristics of the groups identified by the three alternative definitions of developmental disabilities as well as the characteristics of the persons without developmental disabilities. As noted, the estimates in this table pertain to adults included in the SIPP sample who are between the ages of 16 and 72 years old.

The profile begins with an assessment of the accuracy of the SIPP-based definitions of developmental disabilities. It then turns to examine the demographic, economic, and health characteristics of the persons identified as developmentally disabled. The paper concludes with some general observations about using survey data to identify persons with developmental disabilities and about the information available in SIPP about this population.

1. The Accuracy of the SIPP-Based Definitions of Developmental Disabilities

There is no independent information with which to verify the SIPP-based classifications of persons as having or not having developmental disabilities. The classifications must therefore be judged on their consistency with other available information about persons with developmental disabilities. This can be done by comparing the prevalence rates implied by the SIPP data with rates estimated from other information. In addition, the severity of developmental disabilities should be reflected in the SIPP data about impairments and receipt of disability benefits.

The Prevalence of Developmental Disabilities. The prevalence estimates presented in the first two rows of Table 1 clearly indicate the differential inclusiveness of the three alternative definitions. The narrow definition classifies almost 1.3 million noninstitutionalized persons between the ages of 16 to 72 years old as having developmental disabilities. This estimate suggests a prevalence rate for developmental disabilities of approximately 0.8 percent of the adult noninstitutional population. The middle definition indicates that over 1.7 million adults (1.1 percent of the population group ages 16 to 72) would have developmental disabilities while the broad definition classifies 4.6 million such persons (2.8 percent of this age group) as developmentally disabled.

In order to compare these rates with those derived from other data sources, it is necessary to add in the persons with developmental disabilities who are excluded from SIPP. In particular, it is necessary to add in the estimated 250,000 persons who live in state and community-based facilities for persons with mental retardation and the approximately 80,000 persons with mental retardation who live in nursing homes.8

TABLE 1: Profile of Persons With and Without Developmental Disabilities Among the Noninstitutional Populations, Ages 16-72
Population Characteristic Persons Classified as Developmentally Disableda Persons Not Classified as Developmentally Disabled
Narrow Definition Middle Definition Broad Definition
ESTIMATED NUMBER OF PERSONS (Thousands) 1,284 1,744 4,615 159,425
ESTIMATED PREVALENCE (Percent of All Persons 16-72) 0.8% 1.1% 2.8% 97.2%
LIMITATIONS IN FUNCTIONING: PERCENT OF GROUP:b
Needs Assistance with ADL or IADLa 35.8% 35.8% 14.6% 2.4%
Substantial Physical or Sensory Limitationsa 23.2% 26.6% 23.3% 6.7%
Mild Physical or Sensory Limitation 16.8% 15.6% 19.0% 7.1%
No Limitations 24.3% 22.0% 43.1% 83.8%
RECEIPT OF DISABILITY BENEFITS (Persons 18-64 Years Old)c
Receives Disability Benefits 61.8% 59.4% 24.4% 2.4%
Does Not Receive Disability Benefits 38.2% 40.6% 75.6% 97.6%
PERCENT OF GROUP BETWEEN AGES
16-21 years 18.8% 15.8% 23.3% 13.8%
22-49 years 57.2% 57.8% 58.5% 57.7%
50-64 years 14.5% 16.5% 13.2% 20.3%
65-72 years 9.5% 9.9% 5.1% 8.3%
GENDER: PERCENT OF GROUP
Male 38.9% 40.9% 51.6% 48.3%
Female 61.1% 59.1% 48.5% 51.7%
RACE/ETHNICITY: PERCENT OF GROUP
Black, Non-Hispanic 26.2% 23.6% 15.3% 10.8%
Hispanic 9.1% 8.2% 4.9% 5.4%
White, Non-Hispanicd 64.7% 68.2% 79.9% 83.9%
EDUCATION: PERCENT OF GROUP WITH
Less than High School 65.7% 61.9% 44.6% 26.7%
High School only 26.5% 27.8% 34.5% 37.8%
More than High School 7.8% 10.3% 20.9% 35.5%
MARITAL STATUS/LIVING ARRANGEMENTS: PERCENT
Married 17.9% 22.6% 33.5% 59.8%
   Living with Spouse 9.8% 13.0% 13.9% 20.2%
   Living with Spouse and Others 8.1% 9.7% 19.6% 39.6%
Not Married or Separated 82.0% 77.4% 66.6% 30.3%
   Living Alone 11.0% 11.7% 11.1% 9.6%
   Living with Relatives 68.5% 60.5% 50.8% 26.1%
   Living with Non-Relatives 2.5%^^ 5.2% 4.7% 4.6%
HOUSEHOLD ECONOMIC WELL-BEING
Mean Household Monthly Income $1,462 $1,500 $1,951 $2,535
Median Household Monthly Income $1,130 $1,135 $1,626 $2,108
Percent of Household Income from:        
   Earnings 38.8% 38.0% 59.9% 74.5%
   Social Security 23.4% 25.0% 13.3% 8.6%
   Transfers 34.9% 32.5% 20.7% 6.7%
PERCENT WITH MONTHLY INCOMEe
Below poverty level 32.9% 31.4% 21.2% 11.3%
Between 1 and 1.5 times the poverty level 16.3% 17.5% 12.8% 8.8%
Above 1.5 times the poverty level 50.8% 51.4% 66.0% 80.7%
EMPLOYMENT
Percent Working in April 1984 NA 5.6% 42.0% 65.1%
Average Earnings for Persons who Work ($) NA $548 $935 $1,352
Percent Working who have Monthly Earnings Below $300 NA 58.0% 23.8% 13.2%
HEALTH MEASURES
Reported Health Status Excellent Very Good Good Fair Poor        
   Excellent 6.4%^^ 9.1% 12.3% 34.2%
   Very Good 6.8% 7.8% 15.8% 27.8%
   Good 29.1% 26.2% 31.9% 24.6%
   Fair 35.0% 31.9% 28.3% 9.1%
   Poor 22.8% 25.1% 11.7% 4.3%
Mean Number of Days in Hospital in Last 4 Months 1.3 days 1.7 days 0.9 days 0.32 days
Mean Number of Doctor Visits in Last 4 Months 3.1 visits 3.2 visits 2.6 visits 1.3 visits
Mean Number of Days Bedridden in Last 4 Months 9.9 days 11.4 days 6.2 days 2.1 days
HEALTH INSURANCE COVERAGE: PERCENT
Not Covered 11.3% 11.7% 18.8% 13.7%
With Private Coverage Only 21.0% 21.8% 46.1% 72.3%
With Private and Public Coverage 12.9% 14.4% 8.4% 7.4%
With Public Coverage Only 54.8% 52.1% 26.8% 7.5%
PERCENT WITH MENTAL RETARDATION 23.2% 27.4% 12.4% NA
SAMPLE SIZE 272 367 986 34,846
SOURCE: SIPP 1984 Panel, Wave 3 supplemented with data from Waves 1, 2, and 4.
  1. Three alternative definitions were used to identify persons with developmental disabilities. The "narrow" definition classifies persons as developmentally disabled if they report that their health or condition has always prevented them from working at a job or business. The "middle" definition adds to the narrow definition by also including (1) persons who report both being currently unable to work and having a work limitation that started prior to working age and (2) persons who report having mental retardation and a need for assistance with ADL or IADL tasks. The "broad" definition includes persons who are report a work limitation or being prevented from working where the limitation or inability began prior to working age.
  2. Appendix B provides a full definition of these categories.
  3. Receipt of disability benefits can only be determined for persons 18 to 64 years old.
  4. Other race/ethnicity groups are included with the white group.
  5. This poverty measure is based on the ratio of income in April 1984 to the monthly equivalent of the annual poverty threshold.

^^ This symbol indicates that the error of the estimate is greater than 30 percent of the value of the estimate.

When these persons are added to the 1.7 million persons classified as developmentally disabled in the middle definition, the resulting total of just over 2 million adults implies a prevalence rate for adults of 1.3 percent. This rate is slightly below the prevalence rate of approximately 1.5 percent of the adult population (including persons in institutions) estimated by Kiernan and Bruininks (1986) on the basis of their review of the available prevalence literature. The prevalence rate corresponding to the narrow definition would be 1 percent while the rate corresponding to the broad definition would be 3 percent. Thus, the estimates based on SIPP appear to bracket the currently available prevalence estimates for developmental disabilities, with the middle definition coming closest to approximating the prevalence estimates derived from other studies. This consistency provides some reassurance that the SIPP-based classification identifies persons who are developmentally disabled. Of course, given the level of uncertainty inherent in the existing prevalence literature, it is unclear whether much importance should be attributed to the difference between the 1.3 percent prevalence rate estimated using SIPP data and the 1.5 rate suggested by the literature review of Kiernan and Bruininks.

The Extent of Impairments and Disability-Benefit Receipt Among Persons Classified as Having Developmental Disabilities. The sets of estimates following the prevalence estimates in Table 1 provide two alternative measures of disability.9 The first is based on limitations in functioning and the second on receipt of benefits from programs targeted toward persons with disabilities. Because these measures of disability are based on some of the same variables as the classifications of developmental disabilities, some degree of correlation is expected. Nevertheless, these estimates suggest a consistency between the classification of developmental disabilities and other disability classifications. Furthermore, the estimates indicate the severity of impairments among persons classified as developmentally disabled.

For example, almost 36 percent of the persons identified by the narrow and middle definitions of developmental disabilities reported needing assistance with ADLs or IADLs. Another 25 percent reported having serious physical or sensory limitations. Less than 25 percent of the persons classified by these two definitions as having developmental disabilities reported no need for assistance and no physical or sensory limitation. The corresponding figure for the general population without developmental disabilities is approximately 84 percent.10

Table 1 also indicates the extent to which persons receive disability benefits. Because information about receipt of disability benefits can only be obtained from SIPP for persons from 18 to 64 years old, the comparison of definitions of developmental disabilities and receipt of disability benefits is limited to persons in this age range.

SIPP data about the receipt of disability benefits is based, in part, on special procedures developed by the Social Security Administration (Vaughan, 1989). These procedures provide a means for using information in SIPP to determine whether Social Security beneficiaries under 65 years old are receiving benefits because of their own disability.11 In addition, Supplemental Security Income recipients under 65 years old can be assumed to be receiving these benefits because of disability as can those recipients of Veterans' Administration (VA) benefits who report having a 100 percent VA disability rating.

The estimates in Table 1 show relatively high rates of disability-benefit receipt among persons identified in the SIPP as having developmental disabilities. Approximately 60 percent of the persons identified under the narrow and middle definitions are estimated to receive disability benefits. Not only does this indicate that many of these persons are sufficiently impaired to be considered disabled under the Social Security Administration's disability determination process, but it also indicates the relatively high use of public support by the persons classified as developmentally disabled.

Overall, these comparisons suggest that the SIPP-based definitions of developmental disabilities provide an imperfect but reasonable basis for identifying such persons. The high proportion of persons with limitations in functioning among those classified as developmentally disabled (particularly by the narrow and middle definitions) indicates the severity and multi-dimensionality of the limitations faced by persons in this group. The severity of the limitations is also indicated by the high fraction receiving disability benefits.

One disconcerting aspect of this comparison is that over 20 percent of the persons identified by the narrow definition report no need for ADL/IADL assistance or any sensory/physical impairments. It is unclear whether these are persons whose limitations are manifest only the respect to work or whether their limitations are not captured in SIPP. Given that the SIPP questions focus primarily on physical impairments, it seems likely that some persons whose limitations are primarily cognitive may not have reported being limited in SIPP. In the conclusion section we will return to the issue of the accuracy of the three definitions, after reviewing the estimated population characteristics.

2. Characteristics of the Persons Identified as Developmentally Disabled

All three of the alternative SIPP-based definitions of developmental disabilities identify, on average, persons who tend to have less education, earn less, live in poor households, and have poorer health relative to persons who are not developmentally disabled. In general, the characteristics of the groups identified by the narrow and middle definitions are similar, while persons identified as developmentally disabled by the broad definition tend to have characteristics that would place them in between the groups defined by the other developmental disability definitions and the general population.

Demographics. The most striking findings with regard to basic demographics pertain to gender and race for persons classified using the narrow and middle definitions. In both these groups, approximately 60 percent are female while 52 percent of the non-developmentally disabled population is female. With respect to race, the fraction of Blacks among the persons identified by the narrow or middle definition is approximately 2.5 times the fraction for the general population. The broad definition also yields a higher than expected fraction of Blacks classified as developmentally disabled, although that definition did not produce a difference with respect to gender.

The reason for such differences is unclear. In part, it may reflect a combination of factors including the nature of the labor market and the focus of the narrow and middle definitions on being unable to work. If Blacks and women who become impaired at an early age perceive that there are few labor market opportunities, they may be more likely than other persons to drop completely out of the labor market. Given the overall patterns of earnings among groups defined by race and gender, such a perception might not be surprising. One implication of such a perception would be that Blacks and women would be more likely than similar persons in other groups to report in a survey that they were unable to work.12 Correspondingly, Blacks and females would be more likely to be classified as developmentally disabled under the narrow or middle definitions. Under the broad definition, which includes persons who are limited in work as well as being prevented from work, the distribution of men and women is essentially the same as the overall population, although there are still slightly more Blacks classified as developmentally disabled by the broad definition than would be expected on the basis of the overall population racial mix.

Clearly, these patterns warrant additional research into both the classification methods and possible explanatory factors. In addition, these patterns must be kept in mind when interpreting the other statistics in Table 1 since most of the other population characteristics examined are correlated with race and gender.

The information in Table 1 about education reflects the early onset of disability and the corresponding delays in educational attainment for persons with developmental disabilities. Two-thirds of the persons who meet the narrow definition of developmental disabilities did not complete high school compared with only a quarter of the general population. Similarly, fewer than 10 percent of the persons identified in the narrow and middle definitions have post-secondary education compared with about 35 percent of the non-developmentally disabled population.

The delay in development may also explain the observed differences with respect to living arrangement. We find that relatively few adults who are identified as having developmental disabilities are living independently, either by themselves or with a spouse. Most adults with developmental disabilities (almost 70 percent) are unmarried and living with relatives. In contrast, among the general population most adults are married and living with their spouse or are living alone. These findings are consistent with the limitations expressed in the formal definition of developmental disabilities.

Economic Status. The reliance on public support, which was seen in the fraction of persons receiving disability benefits, is also seen in the statistics pertaining to economic well-being. Persons identified as developmentally disabled under the narrow and middle definitions appear to live in households that receive over 55 percent of their cash income from Social Security or government transfer programs.13 These households report receiving less than 40 percent of their income from earnings. In comparison, among the general population, households report receiving 75 percent of their cash income from earnings.

Despite the receipt of various types of income support, persons identified as having developmental disabilities tend to live in households that are substantially poorer than the general population. The average and median household income (in April 1984) for persons identified under the narrow and middle definitions was 40 to 45 percent less than for the general population. Among persons identified under these two definitions, approximately one-third live in poor households, three times the rate of the general population. An additional 16-17 percent of the developmentally disabled persons (identified with the narrow or middle definitions) are in near-poor households with incomes between 1 and 1.5 times the poverty level. When the poor and near poor groups are combined, almost half of the developmentally disabled persons are estimated to live in needy households. This raises concern about the availability of these households to meet the needs to persons with developmental disabilities.

Correlated with the observed low income of persons with developmental disabilities is a very low rate of employment. Less than 6 percent of the persons identified by the middle definition were working at the time of the interview compared with 65 percent of the general population. Even when they work, the persons identified through the middle and broad definitions earn substantially less than workers in the general population.

Health Characteristics. The measures of health indicate that the narrow and middle definitions of developmental disabilities identify groups that have relatively poor health. Over half these persons report being in poor or fair health, with about 25 percent reporting that they are in poor health. In contrast, less than 15 percent of the general population report being in fair or poor health. Persons identified by the narrow and middle definitions also spend more days in the hospital, visit the doctor more often, and spend more time bedridden than the general population.

Due in large part to the coverage of Medicare and Medicaid, persons with developmental disabilities appear to be as able as the general population to obtain health insurance coverage. (The estimated fractions of persons without coverage classified under the narrow and middle definitions are not statistically different from the estimated fraction for the population as a whole.) Persons identified under the narrow and middle definitions, participate in the Medicare and Medicaid programs almost 5 times as much as do persons in the general population (two-thirds of the developmentally disabled groups have Medicare or Medicaid coverage compared with 14 percent of the general population). This differential rate of public coverage offsets the substantially lower rates of private health-insurance coverage among the persons identified as developmentally disabled.

It is interesting to note that among persons identified by the broad definition of developmentally disability, the fraction without health insurance is higher than among the overall population. Persons meeting the broad definition are, on average, less impaired than persons meeting the narrow or middle definitions, although persons meeting the broad definition may still have substantial difficulties, particularly in obtaining and holding well-paying jobs. As a result, persons meeting the broad definition may fall in a gap between the major sources of health insurance: they are not covered by Medicare or Medicaid programs that would provide public coverage and yet they have too little employment, on average, to obtain private health insurance.

Another aspect of health pertains to the specific conditions that limit persons in work or other activities. SIPP collects information about the conditions that limit respondent's ability to work or perform basic activities (specifically, getting around and light housework/meal preparation). This condition information is potentially problematic because of misreporting of stigmatizing conditions. Marquis et al. (1981) found a large negative bias in reporting mental illness and it seems likely that there are similar problems with self-reports of mental retardation. Thus, it is likely that these types of stigmatizing conditions are under-reported or misreported.

With this qualification in mind, it is interesting to note that only 23 to 27 percent of the persons classified as developmentally disabled under the narrow and middle definition indicate that their limitation is due to mental retardation. This rate is far below even the wide range of estimates reported in the literature, which indicate that between 35 and 90 percent of the developmentally disabled population is mentally retarded (U.S. Department of Health and Human Services, 1988). Thus, the finding in SIPP that fewer than 30 percent of the persons identified as developmentally disabled are mentally retarded suggests that there are problems with the classification scheme or the condition data. The number of persons reporting other conditions is generally too small to provide an adequate basis for precisely estimating the fraction of persons with other conditions.14

3. Conclusions from the Profile of Persons with Developmental Disabilities

Two general conclusions stem from the estimates reported in Table 1. One pertains to the use of survey data like that contained in SIPP to identify persons with developmental disabilities. The other is the poor economic and health condition of many of the persons identified as developmentally disabled in SIPP.

Using Survey Data to Identify Persons with Developmental Disabilities. No definitive assessment of the accuracy of survey-based identification of persons with developmental disabilities can be made without some sort of independent collaborative evidence. The SIPP-based classification suggests, however, that it is possible to use survey data to identify persons who are likely to have developmental disabilities. Prevalence rates derived from SIPP are generally consistent with the currently accepted prevalence rate estimates derived from other sources. In addition, persons identified in SIPP as having developmental disabilities generally have limitations in more than one area, a finding that is consistent with the multi-dimensional nature of developmental disabilities.

The challenge in identifying persons with developmental disabilities appears to be that definitions based on a single dimension may miss some persons who have severe limitations in other dimensions. Thus, the narrow definition, which is based only on an inability to work that originated prior to working age, identifies only about two-thirds of the number of persons expected to be developmentally disabled on the basis of independent prevalence estimates. In order to obtain a prevalence estimate that is consistent with those in the literature (e.g., the middle-definition rate), it is necessary to include persons identified as having limitations in other life areas such as self-care or independent living.

The inability to identify persons with developmental disabilities solely by asking about one life area reflects the complex nature of developmental disabilities. It may also reflect the results of formal and informal services which may enable persons with developmental disabilities to work or perform other basic functions despite their impairments. Thus, it seems that survey procedures to identify persons with developmental disabilities will need to ask about all or most of the life areas in the definition and possibly about specific conditions or support-service use.

The SIPP data also suggest that the administrative records of the SSI or SSDI programs would be an inadequate basis for identifying the general population of persons with developmental disabilities. Table 1 indicates that only 60 percent of the persons identified as having developmental disabilities in SIPP received disability benefits from these programs. While this estimated participation rate is not conclusive--due to the imprecision in identifying persons with developmental disabilities--the SIPP evidence does suggest that a sizable number of persons of interest to the developmental disabilities system may not be participating in the SSI or SSDI programs.

Characteristics of Persons with Developmental Disabilities. Beyond the methodological results of this profile lies the picture of a group who, on average, have limited economic resources with which to meet their needs. Compared with the general population, persons with developmental disabilities are less likely to hold a job, tend to earn less when employed, are more likely to live in poor households, and have poorer health. The relatively poor health status of persons with developmental disabilities (as show in Table 1) coupled with expectations about the nature of developmental disabilities suggest that these are persons who need more than average levels of service to meet basic living standards. However, the earnings and income findings indicate that these persons have less than average resources even when counting government income maintenance programs, although they appear to have an average level of access to health insurance as a result of the Medicare and Medicaid programs.

The general conclusion of this profile therefore reinforces the notion that efforts to assist persons with developmental disabilities cannot focus solely on specific health or physical conditions. These individuals and their families are likely to share traits common to other population groups that are poor or otherwise disadvantaged. Their problems are likely to reflect their low income, health concerns, living arrangements, educational attainment, and job prospects, just as much as the specific condition underlying their disability. Efforts to address this multi-dimensional problem must therefore be ready to address a range of issues and to function in the context of a group with high rates of poverty and low rates of employment.

REFERENCES

Bye, Barry V., and Salvatore J. Gallicchio. "A Note on Sampling Variance Estimates for Social Security Program Participants From the Survey of Income and Program Participation." Social Security Bulletin, vol. 51, no. 10, October 1988, pp.4-21.

Chirikos, Thomas N., and Gilbert Nestle. "Impairment and Labor Market Outcomes: A Cross-Sectional and Longitudinal Analysis." In a Herbert S. Parnes, ed. Work and Retirement: A Longitudinal Study of Men. Cambridge, MA: MIT Press, 1981.

Katz, S., A.B. Ford, R.W. Moskowitz, B.A. Jackson, and M.W. Jaffee. "Studies of Illness in the Aged. The Index of ADL: A Standardized Measure of Biological and Psychosocial Function." Journal of the American Medical Association, vol. 1985, 1963, p.94ff.

Kiernan, William E., and Robert H. Bruininks. "Demongraphic Characteristics." In W.E. Kiernan and J.A. Stark (eds.), Pathways to Employment for Adults with Developmental Disabilities, (pp. 21-50). Baltimore, MD: Paul H. Brookes Publishing Co., 1986.

Lakin, K. Charlie, Tecla M. Jaskulski, Bradley K. Hill, Robert H. Bruininks, Jan M. Menke, Carolyn C. White, and Elizabeth A. Wright. Medicaid Services for Persons with Mental Retardation and related Conditions. Minneapolis, MN: Institute on Community Integration. University of Minnesota, (May) 1989.

LaPlante, Mitchell P. Data on Disability from the National Health Interview Survey, 1983-1985. An InfoUse Report. Washington, D.C.: U.S. National Institute on Disability and Rehabilitation Research, 1988.

Lawton, M.P. "Assessment, Integration, and Environments for Older People." The Gerontologist, vol. 10. 1970, pp. 38-46.

Marquis, S., Duan, Marquis, and Ploich. Response Errors in Sensitive Topic Surveys: Estimates, Effects, and Correction Options." Santa Monica, CA: The Rand Corporation, 1981.

Mathematica Policy Research, Inc. "Population Profile of Disability." Washington, D.C.: Mathematica Policy Research, Inc., October 1989. [http://aspe.hhs.gov/daltcp/reports/task1es.htm]

Parsons, Donald O. "The Decline in Male Labor Force Participation." Journal of Political Economy, vol. 88, 1980, pp. 117-134.

Phillips, Barbara R., Raymond J. Baxter, and Susan A. Stephens. "Approach to the Client Assessment Instrument for the National Long Term Care Demonstration Evaluation." Princeton, NJ: Mathematica Policy Research, 1981.

U.S. Bureau of the Census. Survey of Income and Program Participation, User's Guide. Washington, D.C.: U.S. Department of Commerce, July 1987.

U.S. Department of Health and Human Services. Report to the Secretary: The Working Group on Policies Affecting Mentally Retarded and Other Developmentally Disabled Persons. Washington, D.C.: U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, March 1988. [http://aspe.hhs.gov/daltcp/reports/mrddwges.htm]

Vaughan, Denton R. "Development and Evaluation of a Survey-Based Type of Benefit Classification for the Social Security Program." Social Security Bulletin, vol. 52, no. 1, January 1989, pp. 12-26.

White, C.C., K.C. Lakin, B.K. Hill, E.A. Wright, and R.A. Bruininks. Persons with Mental Retardation in State-Operated Residential Facilities: Year Ending June 30, 1986 with Longitudinal Trends from 1950 to 1986. (Report No. 24) Minneapolis, MN: University of Minnesota, Department of Educational Psychology, 1987.

NOTES

  1. The U.S. Bureau of the Census (1986) and Mathematica Policy Research (1989) present SIPP-based profiles of persons with disabilities and impairments in general. Additional information about the implementation of SIPP and the types of data collected is presented in U.S. Bureau of the Census (1987).

  2. Specifically, data are drawn from Wave 3 of the 1984 panel supplemented with information from Waves 1, 2, and 4 and with edited data developed by the Social Security Administration (Vaughan, 1989). The integration of data from the Social Security Administration was necessary to supplement the Wave 3 information about beneficiary status for recipients of Social Security benefits in order to identify those persons who were receiving benefits because they were disabled rather than because they were retired or were survivors or dependents.

  3. Persons who have worked at any time in the last four months are not asked about whether they are prevented from working. Thus, persons who have recently attempted to work and failed or who have worked in supported settings will only be asked about work limitations not whether they are prevented from working.

  4. Katz et al. (1963), Lawton (1970), and Phillips, Baxter, and Stephens (1981) discuss how the need for assistance with ADL indicates a meaningful limitation in a person's ability to care for him/herself.

  5. Other activities commonly included on lists of Instrumental Activities of Daily Living include shopping, using the telephone, traveling beyond walking distance, taking medications, and managing finances (see Phillips, Baxter and Stephens (1981). The specific IADLs included in SIPP appear to be oriented more toward physical activities than are some of the excluded IADLs such as the need for assistance with shopping, using the telephone, and money management. Thus, the data available in SIPP may miss persons whose ability to live independently is limited due to cognitive rather than physical limitations.

  6. Two types of measurement problems are likely to arise. First, parents may not be aware of developmental problems for very young children, particularly those children who have not entered school (at which time problems are more likely to be identified through school-based screening and testing efforts). Second, the SIPP questions do not provide an objective basis for respondents to determine how severe a limitation must be before it should be reported.

  7. SIPP collects information about conditions only in connection with reported limitations in work or the need for assistance with ADLs or IADLs. Disability benefits are those from the Supplemental Security Income (SSI) program, the Social Security Disability Insurance (SSDI) program, or Veterans Programs where the person has a disability rating of 100 percent.

  8. Lakin, et al. (1989) provides estimates of the number of persons with mental retardation in community-based facilities, while White, et al. (1987) provides an estimate of the number of such persons in state-operated facilities.

  9. These disability classifications were developed by Mathematica Policy Research (1989) in the process of developing a SIPP-based profile of all persons with impairments and disability. Appendix B provides a full definition of the categories and the specific SIPP variables used in their construction.

  10. It is interesting to speculate about the nature of the persons who meet the narrow definition (that is those who have always been prevented from working) yet have no need for assistance with ADLs or IADLs and report no physical or sensory limitations. One possibility is that these individuals have cognitive limitations that prevent them from working but are not captured by the impairment-related questions in SIPP that focus primarily on the ability to perform physical activities such as ambulating inside or outside the house, climbing stairs, and lifting.

  11. Beneficiaries who are older than 65 are paid out of the retirement trust fund and are considered as retired rather than disabled for Social Security purposes.

  12. Chirikos and Nestel (1981) and Parsons (1980) reports evidence of such tendencies among survey respondents: specifically, persons with poorer larbor-market opportunities are more likely to report being disabled.

  13. The income estimates reported in Table 1 include only cash income and exclude the value of food stamps, Medicaid, rent subsidies, and other forms of in-kind income.

  14. The estimate of no persons with mental retardation among the general non-developmentally disabled population reflects the way in which SIPP collects data about conditions. Only persons who report needing assistance with ADL or IADL activities or report being limited in work are asked about the conditions that create the limitation. Because persons who report mental retardation as a cause for one of these activities will be classified as developmentally disabled under one of the three alternative definitions, no persons reporting mental retardation will be included in the non-developmentally disabled population.

APPENDIX A. FACSIMILES OF THE 1984 SIPP THIRD WAVE QUESTIONS ON DISABILITY STATUS

(Reproduced from U.S. Bureau of the Census, 1986)

Section 5 - Topical Modules -- Continued
Part B - HEALTH AND DISABILITY
1. These next few questions are about …'s health. Would you say …'s health in general is excellent, very good, good, fair, or poor? 8334 1__ Excellent 2__ Very good 3__ Good 4__ Fair 5__ Poor
2.a. Does … have any difficulty seeing works and letters in ordinary newspaper print even when wearing glasses or contact lenses if … usually wears them? 8336 1__ Yes 2__ No - SKIP to Check Item T17
b. Is … able to do this at all? 8338 1__ Yes2__ No
CHECK ITEM T17 Is … a self-respondent? 8336 1__ Yes - Mark 2c through 2e by observation 2__ No - ASK 2c through 2e
2.c. Does … have any difficulty hearing what is said in a normal conversation with another person? (Using a hearing aid if … usually wears one.) 8342 1__ Yes 2__ No - SKIP to 2e
d. Is … able to do this at all? 8344 1__ Yes 2__ No
e. Does … have any trouble having his/her speech understood? 8346 1__ Yes 2__ No
3. MARK BY OBSERVATION IF APPARENTDoes … generally use an aid to help … get around such as crutches, a cane, or a wheelchair? 8348 1__ Yes 2__ No
4.a. These next questions ask whether …'s health or condition affects …'s ability to do certain activities. (If persons uses special aids, ask about the ability to do the activity while using the special aids.) Does … have any difficulty lifting and carrying something as heavy as 10 lbs., such as a full bag of groceries. 8350 1__ Yes 2__ No - SKIP to 4c
b. Is … able to do this at all? 8352 1__ Yes 2__ No
c. Does … have any difficulty walking for a quarter of a mile - about 3 city blocks? 8354 1__ Yes 2__ No - SKIP to 4e
d. Is … able to do this at all? 8356 1__ Yes 2__ No
e. Does … have any difficulty walking up a flight of stairs without resting? 8358 1__ Yes 2__ No - SKIP to 4g
f. Is … able to walk up a flight of stairs without the help of another person? 8360 1__ Yes 2__ No
g. Does … have any difficulty getting around outside the house by …'s self? 8362 1__ Yes 2__ No - SKIP to 6a
h. Does … need the help of another person in order to get around outside the house? 8364 1__ Yes 2__ No
i. Does … have any difficulty getting around inside the house by …'s self? 8366 1__ Yes 2__ No - SKIP to 4k
j. Does … need the help of another persons in order to get around inside the house? 8368 1__ Yes 2__ No
k. Does … have any difficulty getting into and out of bed by …'s self? 8370 1__ Yes 2__ No - SKIP to Check Item T18
l. Does … need the help of another person in order to get in and out of bed? 8372 1__ Yes 2__ No
CHECK ITEM T18 Refer to items4h, 4j and 4l above. Does … need the help of another person in order to get around or get in and out of bed? 8374 1__ Yes 2__ No - SKIP to 6a
5.a. You mentioned that … needed help (getting around/ getting in and out of bed.) Who usually helps … (get around/get in and out of bed)? Mark (X) all that apply. 837683788380838283848386 83888390 SOMEONE FROM OUTSIDE THE HOUSEHOLD 1__ Relative 2__ Friend/neighbor 3__ Paid employee 4__ Someone from a nonprofit organization or agency HOUSEHOILD MEMBER 5__ Relative 6__ Paid employee 7__ Other nonrelative 8__ Does not receive help - SKIP to 5c
b. ASK OR VERIFY - Does … (or …'s family) pay for any of the help that … receives? 8392 1__ Yes 2__ No
c. (SHOW FLASHCARD W) What health condition is the main reason … has trouble getting around? 8394 Code __ __Name of health condition ____________________________
6.a. Because of …'s health, does … need help to do light housework such as washing dishes, straightening up, or light cleaning? 8396 1__ Yes 2__ No
b. Does … need help to prepare meals for …'s self? 8398 1__ Yes 2__ No
CHECK ITEM T19 Does … need help to do housework or prepare meals (is "Yes" marked in either 6a or 6b)? 8400 1__ Yes 2__ No - SKIP to 8a
7.a. Who generally helps … with (housework/meal preparation)? Mark (X) all that apply. 840284048406840884108412 84148416 SOMEONE FROM OUTSIDE THE HOUSEHOLD 1__ Relative 2__ Friend/neighbor 3__ Paid employee 4__ Someone from a nonprofit organization or agency HOUSEHOILD MEMBER 5__ Relative 6__ Paid employee 7__ Other nonrelative 8__ Does not receive help - SKIP to 7c
b. ASK OR VERIFY - Does … (or …'s family) pay for any of the help that … receives with (housework/meal preparation)? 8418 1__ Yes 2__ No
c. During the past 4 months has … received any meals provided by a community service either delivered to home or served in a group setting? 8420 1__ Yes 2__ No
d. ASK OR VERIFY - (SHOW FLASHCARD W) What health condition is the main reason … is unable to (do housework/prepare meals)? 8422 Code __ __Name of health condition ____________________________
8.a. Does … need help from others in looking after personal needs such as dressing, undressing, eating, or personal hygiene? 8424 1__ Yes 2__ No - SKIP to Check Item T20
b. Who generally helps … with such things? Mark (X) all that apply. 842684288430843284348436 84388440 SOMEONE FROM OUTSIDE THE HOUSEHOLD 1__ Relative 2__ Friend/neighbor 3__ Paid employee 4__ Someone from a nonprofit organization or agency HOUSEHOILD MEMBER 5__ Relative 6__ Paid employee 7__ Other nonrelative 8__ Does not receive help - SKIP to Check Item T20
c. ASK OR VERIFY - Does … (or …'s family) pay for any of the help that … receives in looking after his/her personal needs? 8442 1__ Yes 2__ No
CHECK ITEM T20 Refer to Control Card item 24. What is …'s age? 8444 1__ 15 years - SKIP to 13a 2__ 16 tp 72 years 3__ 73 years or over - SKIP to 13a
CHECK ITEM T21 Is "Disabled" market on the ISS for …? 8446 1__ Yes - SKIP to 9a 2__ No
CHECK ITEM T22 Is "Disabled" marked on the control card for …? 8448 1__ Yes 2__ No - SKIP to 9b
9.a. We have recorded that …'s health or condition limits the kind or amount of work … can do. Is that correct? 8450 1__ Yes - SKIP to 9c 2__ No - SKIP to 13a
b. Does …'s health or condition limit the kind or amount to work … can do? 8452 1__ Yes - MARK "171" on ISS 2__ No - SKIP to 13a
c. In what year did … become limited in the kind or amount of work that … could do at a job? 8454 1 9 __ __ - If 1984 ask 9d, otherwise SKIP to 9e OR 1__ Person was limited before person became of working age - SKIP to 10a
d. In what month did … become limited? Enter numeric code. 8456 __ __ Month
e. Was … employed at the time …'s work limitation began? 8458 1__ Yes - SKIP to 10a 2__ No
f. When was the last time … worked before …'s work limitation began? 8460 1 9 __ __OR 1__ Had never been employed before work limitation began
10.a. ASK OR VERIFY - (SHOW FLASHCARD W) What health condition is the main reason for …'s work limitation? 8462 Code __ __Name of health condition ____________________________
b. ASK OR VERIFY - Was this condition caused by an accident or injury? 8464 1__ Yes 2__ No - SKIP to Check Item T23
c. Where did the accident or injury take place - was it (Read categories) -- Mark (X) only one. 8466 1__ On your job? 2__ During service in the Armed Forces? 3__ In your home? 4__ Somewhere else?
CHECK ITEM T23 Is "Worked" marked on the ISS? 8468 1__ Yes - SKIP to Check Item T24 2__ No
11.a. Does …'s health or condition prevent … from working at a job or business? 8470 1__ Yes 2__ No - SKIP to 12a
b. In what year did … become unable to work at a job? 8472 1 9 __ __ -- If 1984 ask 11c, otherwise SKIP to 13a OR 1__ Has never been able to work at a job SKIP to 13a
c. In what month did … become unable to work? Enter numeric code. 8474 __ __ Month - SKIP to 13a
CHECK ITEM T24 Refer to item 8a, page 4. Did … usually work 35 or more hours per week during the reference period? 8478 1__ Yes - SKIP to 12b 2__ No
12.a. Is … now able to work at a full-time job or is … only able to work part-time? 8478 1__ Full time 2__ Part time
b. Is … now able to work regularly or is … only able to work occasionally or irregularly? 8480 1__ Regularly 2__ Only occasionally or irregularly
12.c. Is … now able to do the same kind of work … did before …'s work limitation began? 8482 1__ Yes, able to do same kind of work 2__ No, not able to do same kind of work 3__ Did not work before limitation began
13.a. During the past 12 months, was … a patient in a hospital overnight or longer? 8484 1__ Yes 2__ No - SKIP to 14
b. How many different times did … stay in a hospital overnight or longer during the past 12 months? 8486 __ __ Times
c. Was … a patient in a VA or military hospital during (this visit/any of these visits)? 8488 1__ Yes 2__ No
d. How many nights in all did … spend in a hospital during the past 12 months? 8490 __ __ __ Nights
e. How many of these nights were in the past 4 months? 8492 8494 x5__ All nights OR __ __ __ Nights OR x3__ None
14. During the past 4 months, about how many days did illness or injury keep … in bed more than half of the day? (Include days while an overnight patient in a hospital.) 8496 x5__ All days OR __ __ __ Days OR x3__ None
15.a. During the past 12 months, how many times did … see or talk to a medical doctor or assistant? (Do not count occurrences while an overnight patient in a hospital.) 8498 __ __ Times OR x3__ None - SKIP to 16a
b. How many of these visits or calls were in the past 4 months? 8500 __ __ Times OR x3__ None
16.a. Is there a particular clinic, health center, doctor's office or some other place where … usually goes if … is sick or needs advice about …'s health? 8502 1__ Yes 2__ No - SKIP to Check Item T25
b. To what kind of place does … usually go? Mark (X) only one. 8504 1__ Doctor's office (private doctor) 2__ VA or military hospital 3__ Hospital outpatient clinic (not VA or military) 4__ Hospital emergency room 5__ Company or industry clinic 6__ Health center (neighborhood health center or free or low-cost clinic) 7__ Other - Specify _________________________________
CHECK ITEM T25 Refer to item 27a, page 10. Is … covered by a private health insurance plan in …'s own name? 8506 1__ Yes 2__ No - SKIP to Check Item T27
17.a. We learned earlier that … had health insurance. What is the name of …'s health insurance plan? 8508 1__ Blue Cross/Blue Shield 2__ Other - Specify _________________________________ x1__ DK
b. Does …'s health insurance pay for the complete cost of a doctor visit? Mark "No" if policy requires a deductible. 8510 1__ Yes 2__ No x1__ DK
CHECK ITEM T26 Is "Medicare" marked on the ISS? 8512 1__ Yes 2__ No - SKIP to Check Item T29
18.a. We learned that … was covered by both Medicare and by a private health insurance plan. Does …'s private health insurance plan help pay for hospital bills that are not fully covered by Medicare? 8514 1__ Yes 2__ No x1__ DK
b. Does …'s private health insurance help pay for doctor bills that are not fully covered by Medicare? 8516 1__ Yes - SKIP to Check Item T29 2__ No - SKIP to Check Item T29 x1__ DK - SKIP to Check Item T29
CHECK ITEM T27 Refer to item 27b, page 10. Is … covered by a private health insurance plan in someone else's name? 8518 1__ Yes - SKIP to Check Item T29 2__ No
CHECK ITEM T28 Is "Medicare" or "Medicaid" marked on the ISS? 8520 1__ Yes - SKIP to Check Item T29 2__ No
19. I have recorded that … is not covered by a health insurance plan. Is that correct? 8522 1__ Correct INCORRECT - COVERED BY 2__ CHAMPUS - SKIP to Check Item T29 3__ CHAMPVA - SKIP to Check Item T29 4__ Some other plan - SKIP to Check Item T29
20. (SHOW FLASHCARD X) Which answer on this card best describes why … is not covered by health insurance? Mark (X) only one. 8524 1__ Job layoff, job loss, or any reasons related to unemployment 2__ Can't obtain insurance because of poor health, illness, or age 3__ Too expensive, can't afford health insurance 4__ Dissatisfied with previous insurance 5__ Don't believe in insurance 6__ Have been healthy, not much sickness in the family, haven't needed health insurance 7__ Able to go to VA or military hospital for medical care 8__ Covered by some other health plan 9__ Other - Specify _________________________________
21. Were there any periods of time in the past 3 years when … was covered by some type of private or government health insurance plan? 8526 1__ Yes 2__ No - SKIP to Check Item T29
22. What type of health insurance was this - was it private health insurance or was it some type of government plan? 8528 1__ Private 2__ Medicaid 3__ CHAMPUS, CHAMPVA 4__ Other - Specify _________________________________ x1__ DK
23.a. When was … last covered by health insurance? 8530 1 9 __ __ - If 1984 ask 23d, otherwise SKIP to 24a
b. Which month? 8532 __ __ Month
24.a. What was the reason … stopped being covered by health insurance? 8534 1__ Lost job or changed employers 2__ Spouse (parent) lost job or changed employers 3__ Death of spouse or parent 4__ Became divorced or separated 5__ Became ineligible because of age (i.e., no longer covered by parents' private plan or by Medicaid) 6__ Other - Specify _________________________________
b. At the time that … stopped being covered by health insurance, did … try to find some other type of health insurance? 8536 1__ Yes 2__ No - SKIP to Check Item T29
c. What was the reason … was unable to find some other type of health insurance? Mark (X) only one. 8538 1__ Could not afford 2__ Was rejected 3__ Other - Specify _________________________________
CHECK ITEM T29 Refer to control card, item 27. Is … the designated parent or guardian of children under 18 who live in the household 8540 1__ Yes 2__ No - SKIP to Check Item C1, page 59
25.a. Do any of …'s children (under 18) have a long lasting physical condition that limits their ability to walk, run, or play? 8542 1__ Yes 2__ No - SKIP to 26a
b. Which children? Enter children by age, oldest first. 8544 __ __ __ Person No. Name _________________ 8546 __ __ __ Person No. Name _________________ 8548 __ __ __ Person No. Name _________________
c. (SHOW FLASHCARD W) What health condition is the main reason (Name of child) has this difficulty? 8550 __ __ Code Name of condition _________________ 8552 __ __ Code Name of condition _________________ 8554 __ __ Code Name of condition _________________
26.a. Do any of …'s children (under 18) have a long lasting mental or emotional problem that limits their ability to learn (or do regular schoolwork)? 8556 1__ Yes 2__ No - SKIP to Check Item T30
b. Which children? Enter children by age, oldest first. 8558 __ __ __ Person No. Name _________________ 8560 __ __ __ Person No. Name _________________ 8562 __ __ __ Person No. Name _________________
CHECK ITEM T30 Are any children 5-17 years old listed in 25b or 26b? 8564 1__ Yes - Ask 27 for each child 5-17 years old listed in 25b or 26b 2__ No - SKIP to Check Item C1, page 59
27. Is (Name of child) able to attend a regular school? Enter children by age, oldest first. 85668572 __ __ __ Person No. Name _________________ 1__ Yes 2__ No 85688574 __ __ __ Person No. Name _________________ 1__ Yes 2__ No 85708576 __ __ __ Person No. Name _________________ 1__ Yes 2__ No
NOTES

APPENDIX B. SPECIFICATIONS FOR CLASSIFICATION OF LIMITATIONS IN FUNCTIONING

A SIX-LEVEL CATEGORIZATION OF DISABILITY BASED ON LIMITATIONS IN FUNCTIONING AND RESPONSES TO SIPP
Level and Degree of Limitation Definition
I. Needs assistance with Activities of Daily Living (ADLs) The sample member needs the help of another person with personal needs (dressing, undressing, eating, or personal hygiene), in getting in and out of bed, or in ambulating inside the house.
II. Needs assistance with Instrumental Activities of Daily Living (IADLs), but not with ADLs The sample member needs the help of another person in doing light housework, in preparing meals, or in ambulating outside the house, but does not need assistance with ADLs.
III. Inability to perform one or more functions, or has difficulty with two ADLs, yet reports no need for assistance The sample member either (1) reports an inability to perform one or more of the functions of seeing, hearing, lifting 10 lbs., walking 3 city blocks, or climbing a flight of stairs; or (2) reports difficulty in ambulating inside the house and in getting in and out of bed. The sample member does not report needing assistance with ADLs or IADLs.
IV. Has difficulty in two or more functions, but does not report any liabilities in functions or the need for assistance The sample member reports difficulty in performing two or more of the following functions: seeing, hearing, speaking, lifting 10 lbs., walking 3 city blocks, climbing a flight of stairs, or ambulating outside the house. The sample member does not report an inability to perform any one of these functions or a need for assistance with ADLs or IADLs.
V. Has difficulty only in one function, no inabilities in functions, and no need for assistance The sample member reports difficulty only in one of the above functions.
VI. Has no limitation in functioning Sample member does not report any type of limitation, inability, or need for assistance.
NOTE: For presentational purposes, Levels I and II are combined to identify persons needing assistance with ADLs or IADLs; Levels III and IV are combined to identify persons with substantial physical or sensory limitations; persons in Level V are considered as having mild physical or sensory limitations.

To obtain a printed copy of this report, send the full report title and your mailing information to:

U.S. Department of Health and Human ServicesOffice of Disability, Aging and Long-Term Care PolicyRoom 424E, H.H. Humphrey Building200 Independence Avenue, S.W.Washington, D.C. 20201FAX:  202-401-7733Email:  webmaster.DALTCP@hhs.gov


RETURN TO:

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