U.S. Department of Health and Human Services

Assessment of the Policy Implications of Alternative Functional Definitions of Disability for Children: Final Report

Executive Summary

Ruth E.K. Stein, M.D.

Albert Einstein College of Medicine

March 1997

This report was prepared under a grant by the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) to the Albert Einstein College of Medicine. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the Office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The DALTCP Project Officer was Michele Adler.

EXECUTIVE SUMMARY

This project examined the implications of using different definitional elements to identify children with disabilities for research or programmatic purposes. Good data on children with disabilities are needed, but inconsistencies in the way disabilities are defined have made it difficult to interpret available data. For example, prevalence estimates have ranged from a low of 4% to a high of over 30% depending on the definition of disability used to identify children. Functionally-based definitions are beginning to have a more widespread application in public policy arenas, but no single definition has gained universal acceptance. If the consequences of using different identifying criteria can be clarified, the implications for policy and funding decisions for children with disabilities can be elucidated.

Previously, members of this investigative team developed the Questionnaire for Identifying Children with Chronic Conditions (QuICCC), a screening instrument that uses criteria based on consequences of health conditions to identify children with disabilities (Stein, Westbrook and Bauman, in press). The QuICCC assesses three domains of consequences that are intended to be used together: 1) functional limitations, 2) dependency on compensatory devices or assistance, and 3) service use or need over and above routine care. In this project, we used these three components plus the whole definition to represent alternative ways to define disability in children. Limitation of function and extended service use are commonly used in measures of disability. However, the concept of compensatory mechanism to maximize or maintain function has not yet been applied to children.

This study addressed questions in four critical issue areas:

1. definitions and measurement: What proportions of children are identified using the QuICCC definition of disability and its components? How do the groups vary by diagnosis and SSI status?

2. demographic and socioeconomic characteristics: How do age/developmental stage, socioeconomic and racial/ethnic characteristics, and psychological impact on child and caretaker vary by the different definitional elements of disability?

3. service use, expenditures, and effectiveness: How do family needs vary by disability definition? and

4. private cost of care: How do out-of-pocket costs for medical care and other non-medical expenses vary by the alternative definitional elements of disability?

We conducted secondary analyses of three existing data sets that contained the QuICCC:

1. a cross-sectional sample of over 1200 children from a random-digit-dial telephone survey in a Northeastern inner city,

2. a cross-sectional sample of over 1350 children from a random-digit-dial telephone survey conducted across the United States, and

3. a statewide cross-sectional sample of over 4000 children from Arizona.

Each data set was used to answer one or more questions, and was used to replicate and compare findings across the different populations. The State of Arizona also provided data from family needs assessment surveys conducted on two smaller groups: a "probability" sample selected from various Arizona communities and a “quota” sample recruited from families generated through family forum, health providers and other community contacts. These data were used to answer selected questions.

This project builds on the foundation of earlier related work that culminated in the inclusion of the QuICCC as part of the framework used to define children with disabilities in the Disability Supplement of the 1994-1995 National Health Interview Survey (NHIS). The analyses conducted here were intended to lay the groundwork for later analyses of the Disability Supplement data as it becomes available.