The Cost of Caring: Childhood Disability and Poor Families

Social Service Review

Volumn 72, Issue 2, 1998, Pages 209-233

  Meyers, Marcia K ^a   Lukemeyer, Anna ^a   Smeeding, Timothy ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

EID: 0011801571     PISSN: 00377961     EISSN: None     Source Type: Journal    
DOI: 10.1086/515751     Document Type: Article

References (46)

1. Paul Newacheck and William R. Taylor, "Childhood Chronic Illness: Prevalence, Severity, and Impact," American Journal of Public Health 82, no. 3 (1992): 364-71.
2. Ibid.; Barbara L. Wenger, H. Stephen Kaye, and Mitchell P. LaPlante, "Disabilities among Children," Disability Statistics Abstracts, no. 15 (1996), pp. 1-4; John McNeil, "Americans with Disabilities, 1991-92," Current Population Reports, no. P70-33 (Washington, D.C.: U.S. Bureau of the Census, 1993). Estimates of the prevalence of childhood illnesses are also sensitive to children's ages. Some disabling conditions that occur early in life are not manifested or cannot be easily detected in young children. Other conditions may manifest themselves early in life but their effect on children's health and functioning cannot be observed until children age. By one estimate, 2.8 percent of children under age 5 compared with 7.5 percent of those aged 5-17 have a disabling condition. See Wenger, Kaye, and LaPlante, pp. 1-4.
3. Ibid.; Barbara L. Wenger, H. Stephen Kaye, and Mitchell P. LaPlante, "Disabilities among Children," Disability Statistics Abstracts, no. 15 (1996), pp. 1-4; John McNeil, "Americans with Disabilities, 1991-92," Current Population Reports, no. P70-33 (Washington, D.C.: U.S. Bureau of the Census, 1993). Estimates of the prevalence of childhood illnesses are also sensitive to children's ages. Some disabling conditions that occur early in life are not manifested or cannot be easily detected in young children. Other conditions may manifest themselves early in life but their effect on children's health and functioning cannot be observed until children age. By one estimate, 2.8 percent of children under age 5 compared with 7.5 percent of those aged 5-17 have a disabling condition. See Wenger, Kaye, and LaPlante, pp. 1-4.
4. Ibid.; Barbara L. Wenger, H. Stephen Kaye, and Mitchell P. LaPlante, "Disabilities among Children," Disability Statistics Abstracts, no. 15 (1996), pp. 1-4; John McNeil, "Americans with Disabilities, 1991-92," Current Population Reports, no. P70-33 (Washington, D.C.: U.S. Bureau of the Census, 1993). Estimates of the prevalence of childhood illnesses are also sensitive to children's ages. Some disabling conditions that occur early in life are not manifested or cannot be easily detected in young children. Other conditions may manifest themselves early in life but their effect on children's health and functioning cannot be observed until children age. By one estimate, 2.8 percent of children under age 5 compared with 7.5 percent of those aged 5-17 have a disabling condition. See Wenger, Kaye, and LaPlante, pp. 1-4.
5. 3. Susan C. Reinhard and Allan V. Horwitz, "Caregiver Burden: Differentiating the Content and Consequence of Family Caregiving," Journal of Marriage and the Family 57, no. 3 (1995): 741-50; J. C. Gerritsen and P. C. Van Der Ende, "The Development of a Caregiving Burden Scale," Age and Aging 23, no. 6 (1994): 483; Rhonda J. Y. Montgomery, Donald E. Stull, and Edgar F. Borgatta, "Measurement and the Analysis of Burden," Research on Aging 7, no. 1 (1985): 137-52.
6. Susan C. Reinhard and Allan V. Horwitz, "Caregiver Burden: Differentiating the Content and Consequence of Family Caregiving," Journal of Marriage and the Family 57, no. 3 (1995): 741-50; J. C. Gerritsen and P. C. Van Der Ende, "The Development of a Caregiving Burden Scale," Age and Aging 23, no. 6 (1994): 483; Rhonda J. Y. Montgomery, Donald E. Stull, and Edgar F. Borgatta, "Measurement and the Analysis of Burden," Research on Aging 7, no. 1 (1985): 137-52.
7. Susan C. Reinhard and Allan V. Horwitz, "Caregiver Burden: Differentiating the Content and Consequence of Family Caregiving," Journal of Marriage and the Family 57, no. 3 (1995): 741-50; J. C. Gerritsen and P. C. Van Der Ende, "The Development of a Caregiving Burden Scale," Age and Aging 23, no. 6 (1994): 483; Rhonda J. Y. Montgomery, Donald E. Stull, and Edgar F. Borgatta, "Measurement and the Analysis of Burden," Research on Aging 7, no. 1 (1985): 137-52.
8. 4. Thomas A. Hodgson and Mark R. Meiners, "Cost-of-Illness Methodology: A Guide to Current Practices and Procedures," Health and Society 60, no. 3 (1982): 492-61; Dorothy A. Whyte, "A Family Nursing Approach to the Care of a Child with a Chronic Illness," Journal of Advanced Nursing 17, no. 3 (1992): 317-27; Mary I. Benedict, Louise M. Wulff, and Roger B. White, "Current Parental Stress in Maltreating and Nonmaltreating Families of Children with Multiple Disabilities," Child Abuse and Neglect 16, no. 2 (1992): 155-63.
9. Thomas A. Hodgson and Mark R. Meiners, "Cost-of-Illness Methodology: A Guide to Current Practices and Procedures," Health and Society 60, no. 3 (1982): 492-61; Dorothy A. Whyte, "A Family Nursing Approach to the Care of a Child with a Chronic Illness," Journal of Advanced Nursing 17, no. 3 (1992): 317-27; Mary I. Benedict, Louise M. Wulff, and Roger B. White, "Current Parental Stress in Maltreating and Nonmaltreating Families of Children with Multiple Disabilities," Child Abuse and Neglect 16, no. 2 (1992): 155-63.
10. Thomas A. Hodgson and Mark R. Meiners, "Cost-of-Illness Methodology: A Guide to Current Practices and Procedures," Health and Society 60, no. 3 (1982): 492-61; Dorothy A. Whyte, "A Family Nursing Approach to the Care of a Child with a Chronic Illness," Journal of Advanced Nursing 17, no. 3 (1992): 317-27; Mary I. Benedict, Louise M. Wulff, and Roger B. White, "Current Parental Stress in Maltreating and Nonmaltreating Families of Children with Multiple Disabilities," Child Abuse and Neglect 16, no. 2 (1992): 155-63.
11. Hodgson and Meiners (n. 4 above), pp. 429-61; Philip Jacobs and Suzanne McDermott, "Family Caregiver Costs of Chronically Ill and Handicapped Children: Method and Literature Review," Public Health Reports 104, no. 2 (1989): 158-63.
12. Hodgson and Meiners (n. 4 above), pp. 429-61; Philip Jacobs and Suzanne McDermott, "Family Caregiver Costs of Chronically Ill and Handicapped Children: Method and Literature Review," Public Health Reports 104, no. 2 (1989): 158-63.
13. Jacobs and McDermott (n. 5 above), pp. 158-63.
14. 7. Paul Newacheck and Margaret McManus, "Financing Health Care for Disabled Children," Pediatrics 81, no. 3 (1988): 385-94; Urban Systems Research and Engineering, Inc., Survey of Blind and Disabled Children Receiving Supplemental Security Income Benefits (Baltimore: Social Security Administration, 1979); Jacobs and McDermott (n. 5 above), pp. 158-63.
15. Paul Newacheck and Margaret McManus, "Financing Health Care for Disabled Children," Pediatrics 81, no. 3 (1988): 385-94; Urban Systems Research and Engineering, Inc., Survey of Blind and Disabled Children Receiving Supplemental Security Income Benefits (Baltimore: Social Security Administration, 1979); Jacobs and McDermott (n. 5 above), pp. 158-63.
16. Paul Newacheck and Margaret McManus, "Financing Health Care for Disabled Children," Pediatrics 81, no. 3 (1988): 385-94; Urban Systems Research and Engineering, Inc., Survey of Blind and Disabled Children Receiving Supplemental Security Income Benefits (Baltimore: Social Security Administration, 1979); Jacobs and McDermott (n. 5 above), pp. 158-63.
17. Jacobs and McDermott (n. 5 above).
18. 9. Barbara Leonard, Janny D. Brust, and James J. Sapienza, "Financial and Time Costs to Parents of Severely Disabled Children," Public Health Reports 107, no. 3 (1992): 302-12; Shirley Lansky, Nancy Cairns, Gary Clark, James Lowman, Linda Miller, and Robert Trueworthy, "Childhood Cancer: Nonmedical Costs of the Illness," Cancer 43, no. 1 (1979): 403-8; Jacobs and McDermott (n. 5 above).
19. Barbara Leonard, Janny D. Brust, and James J. Sapienza, "Financial and Time Costs to Parents of Severely Disabled Children," Public Health Reports 107, no. 3 (1992): 302-12; Shirley Lansky, Nancy Cairns, Gary Clark, James Lowman, Linda Miller, and Robert Trueworthy, "Childhood Cancer: Nonmedical Costs of the Illness," Cancer 43, no. 1 (1979): 403-8; Jacobs and McDermott (n. 5 above).
20. Barbara Leonard, Janny D. Brust, and James J. Sapienza, "Financial and Time Costs to Parents of Severely Disabled Children," Public Health Reports 107, no. 3 (1992): 302-12; Shirley Lansky, Nancy Cairns, Gary Clark, James Lowman, Linda Miller, and Robert Trueworthy, "Childhood Cancer: Nonmedical Costs of the Illness," Cancer 43, no. 1 (1979): 403-8; Jacobs and McDermott (n. 5 above).
21. Jacobs and McDermott (n. 5 above).
22. Barbara Wolfe and Steven Hill, "The Effect of Health on the Work Effort of Single Mothers," Journal of Human Resources 30, no. 1 (1995): 42-62; Jane Mauldon, "Employment of Mothers with Disabled Children" (paper presented at the Association for Public Policy Analysis and Management annual research meeting, Bethesda, Md., 1991); David S. Salkever, "Children's Health Problems and Maternal Work Status," Journal of Human Resources 17, no. 1 (1982): 94-109; Naomi Breslau, David Salkever, and Kathleen S. Staruch, "Women's Labor Force Activity and Responsibilities for Disabled Dependents: A Study of Families with Disabled Children, "Journal of Health and Social Behavior 23, no. 2 (1982): 169-83.
23. Barbara Wolfe and Steven Hill, "The Effect of Health on the Work Effort of Single Mothers," Journal of Human Resources 30, no. 1 (1995): 42-62; Jane Mauldon, "Employment of Mothers with Disabled Children" (paper presented at the Association for Public Policy Analysis and Management annual research meeting, Bethesda, Md., 1991); David S. Salkever, "Children's Health Problems and Maternal Work Status," Journal of Human Resources 17, no. 1 (1982): 94-109; Naomi Breslau, David Salkever, and Kathleen S. Staruch, "Women's Labor Force Activity and Responsibilities for Disabled Dependents: A Study of Families with Disabled Children, "Journal of Health and Social Behavior 23, no. 2 (1982): 169-83.
24. Barbara Wolfe and Steven Hill, "The Effect of Health on the Work Effort of Single Mothers," Journal of Human Resources 30, no. 1 (1995): 42-62; Jane Mauldon, "Employment of Mothers with Disabled Children" (paper presented at the Association for Public Policy Analysis and Management annual research meeting, Bethesda, Md., 1991); David S. Salkever, "Children's Health Problems and Maternal Work Status," Journal of Human Resources 17, no. 1 (1982): 94-109; Naomi Breslau, David Salkever, and Kathleen S. Staruch, "Women's Labor Force Activity and Responsibilities for Disabled Dependents: A Study of Families with Disabled Children, "Journal of Health and Social Behavior 23, no. 2 (1982): 169-83.
25. Barbara Wolfe and Steven Hill, "The Effect of Health on the Work Effort of Single Mothers," Journal of Human Resources 30, no. 1 (1995): 42-62; Jane Mauldon, "Employment of Mothers with Disabled Children" (paper presented at the Association for Public Policy Analysis and Management annual research meeting, Bethesda, Md., 1991); David S. Salkever, "Children's Health Problems and Maternal Work Status," Journal of Human Resources 17, no. 1 (1982): 94-109; Naomi Breslau, David Salkever, and Kathleen S. Staruch, "Women's Labor Force Activity and Responsibilities for Disabled Dependents: A Study of Families with Disabled Children, "Journal of Health and Social Behavior 23, no. 2 (1982): 169-83.
26. Newacheck and McManus (n. 7 above); McNeil (n. 2 above).
27. Newacheck and McManus (n. 7 above).
28. Breslau, Salkever, and Staruch (n. 11 above).
29. Nicholas Hobbs, James Perrin, and Henry Ireys, Chronically Ill Children and Their Families (San Francisco: Jossey-Bass, 1985), quote on p. 184.
30. Laudan Y. Aron, Pamela J. Loprest, and C. Eugene Steuerle, Serving Children with Disabilities (Washington, D.C.: Urban Institute, 1996).
31. In 1990, the Supreme Court in Sullivan v. Zebley required the Social Security Administration (SSA) to provide an individual, functional assessment for children whose disability did not qualify them for benefits under existing criteria. At about the same time, SSA also revised its criteria for evaluating children claiming mental impairments. Both of these changes contributed to substantial growth in the early 1990s in the number of child beneficiaries in the SSI program.
32. Aron, Loprest, and Steuerle (n. 16 above), and authors' calculations from Social Security Administration, "Current Operating Statistics Tables," Office of Research, Evaluation, and Statistics homepage, 1997, available from 〈http://www.ssa.gov/statistics/ores_ home.html〉.
33. Aron, Loprest, and Steuerle (n. 16 above).
34. Pamela J. Loprest and Gregory Acs, "Profile of Disability among Families on AFDC" (Urban Institute, Washington, D.C., 1995).
35. Gregory Acs and Pamela J. Loprest, Do Disabilities Inhibit Exits from AFDC? (Washington, D.C.: Urban Institute, 1994).
36. Henry M. Brady, Marcia K. Meyers, and Samantha Luks, "The Impact of Child and Adult Disabilities on the Duration of Welfare Spells" (paper presented at the thirty-sixth National Association for Welfare Research and Statistics annual conference, San Francisco, July 1996).
37. Social Security Administration, "Supplemental Security Income: Determining Disability for a Child under Age 18; Interim Final Rules with Request for Comments," Federal Register 62, no. 28 (February 11, 1997): 6408-32.
38. Together, these four California counties account for nearly one-half of the AFDC caseload in California. In California, AFDC is a county-administered program.
39. The sample includes a small number of male respondents, but respondents were overwhelmingly women. Two-parent households qualified for benefits through the AFDC Unemployed Parent program.
40. Respondents were asked screening questions with respect to their biological and stepchildren. A few families were headed by a "caretaker relative" who was not the biological or step-parent of the AFDC children. Caretaker relatives were asked the screening questions with respect to their AFDC children.
41. We consider only the frequency with which these expenses were incurred. The magnitude of the expenses and effect on family income and poverty status are described in Anna Lukemeyer, Marcia K. Meyers, and Timothy M. Smeeding, "Expensive Children in Poor Families: Out-of-Pocket Expenditures for the Care of Disabled and Chronically Ill Children and Welfare Reform," Income Policy Series Paper no. 17 (Syracuse, N.Y.: Syracuse University, Center for Policy Research, 1997).
42. Wenger, Kaye, and LaPlante (n. 2 above).
43. Loprest and Acs (n. 20 above).
44. Measures of program participation do not count families in the application process, on waiting lists, or under review for services and are, therefore, conservative estimates.
45. To avoid direct correlation between our measures of severity and SSI receipt, we recoded variables for the severity of children's conditions for this analysis on the basis of functional limitations only; that is, children receiving SSI were not automatically coded as severely impaired. This reduces the number of households with severely disabled children from 148 to 102 for this analysis. This may result in an underestimate of the effect of children's special needs on family hardship.
46. Ladonna Pavetti and Amy-Ellen Duke, Increasing Participation in Work and Work-Related Activities: Lessons from Five State Welfare Reform Demonstration Projects (final report for the Urban Institute, Washington D.C., 1995).