NATIONAL SURVEY OF SSI CHILDREN AND FAMILIES (NSCF)

1. NATIONAL SURVEY OF SSI CHILDREN AND FAMILIES (NSCF) American Public Health Association Annual Meeting October 23, 2001

2. BACKGROUND AND OBJECTIVES Kalman Rupp and Paul Davies Social Security Administration

3. SSI Program: Cash Benefits for Children with Disabilities • Monthly cash benefits to support the basic needs of children with disabilities under 18 • Federal SSI: up to $531 per month in 2001 • State supplements in most states • Benefits first paid in 1974 • Must have low income and limited assets • Parents’ income “deemed” to child with allowances for other children in the family • SSI provides direct link to Medicaid in many states

4. Growth of SSI for Children Source: Children Receiving SSI, June 2001 (Tables 1-3)

5. Major Legislative Changes Behind Growth Patterns • Disability Benefits Reform Act of 1984 • Listing of childhood mental disorders expanded in 1990 • Sullivan v. Zebley decision, 1990 • SSA regulations require consideration of child’s ability to function in an age-appropriate manner • Multistep evaluation process including individual functional assessment (IFA) • Personal Responsibility and Work Opportunity Reconciliation Act of 1996 • Disability must result in marked and severe functional limitations • IFA eliminated • Maladaptive behavior removed from personal/behavioral domain of childhood mental disorders listings

6. Basic Indicators of Program Size • Current operating statistics for children: • Over 860,000 currently receiving SSI • Over $4.8 billion in annual Federal SSI payments • Average Federal SSI benefit = $467 per month • 65% receive maximum Federal SSI benefit ($531 per month in 2001) • Long-run implications: average total stay on SSI for children is 27 years (Rupp & Scott, 1995) • Coverage of SSI in 1999 relative to TANF • 1.2% of children received SSI; 6.9% received TANF • 6.9% of children in poverty received SSI; 40.1% received TANF (Indicators of Welfare Dependence, 2001; Poverty in the United States: 1999)

7. Need for Survey SSA INFORMATION NEEDS: • Fundamental questions about objectives of the program • Need to obtain information addressing current policy questions of interest • Assess welfare reform effects • Future needs for current information GAP IN DATA AVAILABILITY: • Last survey in 1978 • Administrative record data limited

8. Basic Survey Design • Comprehensive data collection complementing administrative records • Who are these children? • Family context (parental labor supply) • Cash versus in kind benefits • Poverty and noneconomic outcomes • Current cross-section • Design allows for follow-up survey • Welfare reform effects

9. What We Do Know: Diagnostic Mix Source: Annual Statistical Supplement, 2001 - forthcoming (Table 7.F1)

10. What We Do Know:Family Income Sources • Earned income is much lower for families with children on SSI than all families with children • Earned income of parents of SSI children is a larger percent of family income than SSI • Other unearned income is an important source of income for families with SSI children, but contributes little to average income of all other families with children • Despite the disability of the child, families with children on SSI are more likely to have earned income than families with children on welfare (data not shown)

11. What We Do Know:Welfare Reform Effects on Caseload • About 100,000 children lost SSI benefits • Approximately 45% of first cohort of age-18 cases lost benefits • Little short-run evidence of reapplications by those who lost benefits • Tighter rules expected to lead to lower future entry rates • Largest net effect over time expected from age-18 redeterminations because this is a recurring process

12. What We Do Know:Effect of SSI on Poverty • Over 60% of SSI children live in families that would be poor without SSI • SSI cuts rate of poverty to 60% of “Before SSI” rate • A nontrivial portion of families have incomes above 200% of poverty line, especially with SSI income

13. What We Do Know:Kids in Multirecipient Households Proportion of SSI Recipients in Poverty • Over 40 percent of child recipients live in multirecipient households • 6 out of 10 of these kids live with a parent recipient, less than 1 in 10 with a grandparent recipient • Children in multirecipient households are at a relatively high risk of poverty

14. What We DON’T Know:What Will We Learn from NSCF? • Data collection and survey content • Susan Mitchell • Sample design • Frank Potter • Data products • Margaret Cahalan • Data uses • Pamela Loprest

15. DATA COLLECTION AND SURVEY CONTENT Susan Mitchell Mathematica Policy Research

16. Data Collection Plan • N = 11,875 • Sample includes current SSI recipients, former SSI recipients, families who applied for but never received SSI • Response rate target = 80 percent • Dual modes of data collection • Computer-Assisted Telephone Interviewing (CATI) • Computer-Assisted Personal Interviewing (CAPI)

17. Methods for Maximizing Response • Advance letter • 800 number • $10 incentive • Refusal conversions • Spanish translation

18. CATI • October status = 40 percent response rate • CATI goal = 65 percent response • 100 telephone interviewers • 16 hours of training • August 2001 – February 2002

19. CAPI • November 2001 – February 2002 • 90 field interviewers (3-day training) • Cases to CAPI • Those who evade or refuse • Those who can not complete telephone interview • Unlocated cases

20. Questionnaire • 70 minutes in length • Three versions • Child (under 17) • Young adult (17+) • Imprisonment module • Similar in content but allow for age-specific differences • Young adult version asks about job preparedness and youth transition issues

21. Who is the Respondent? • Sample case <18 = parent/guardian • Sample case = 18+ • Parent/guardian if living at home/school • Sample case if living independently • Proxy if living independently and unable to respond • Imprisoned = parent/guardian or proxy

22. Disability status and functional limitations Health care utilization Health insurance Education and training Programs and services Impact on family SSI experience Employment Work and child care Unearned income and assets Housing and transportation Background Questionnaire Content

23. SAMPLE DESIGN Frank Potter Michael Sinclair Bidisha Ghosh

24. Objectives • Provide updated information on experiences, characteristics, and needs of disabled children and their families • Address question of the effects of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA aka welfare reform)

25. Target Populations • Children and families affected by welfare reform • Children and families currently receiving SSI benefits

26. Definition of ‘Child’ • Person 18 or younger at welfare reform (used December 1996) • Person 18 or younger at the time of the survey (December 2000) • Or both

27. Children Affected by Welfare Reform • Children subject to redetermination and SSI benefits were continued • Children subject to redetermination and SSI benefits were ceased • Children not subject to redetermination • Children ages 17-18 at welfare reform • Children not receiving SSI at WR but had previous contact with the program

28. Children Currently Receiving SSI Benefits • Children who were on SSI at welfare reform • Children who were not on SSI at welfare reform • Children recipients age 17-18

29. Sampling Frame Source • SSI extract record file for December 1996 • For SSI recipients at welfare reform and children encountering SSI system • SSI extract record file for December 2000 • For current recipients or encountering SSI system since welfare reform • Children “universe” file • For children subject to redetermination at welfare reform

30. Target Population Size: At Welfare Reform • On SSI at welfare reform 1,520,927 • Subject to redetermination 325,622 • Continued 145,069 • Denied 180,553 • Not subject to redetermination 1,195,305 • Not on SSI at welfare reform 1,991,648 • Ages 17–18 at welfare reform 341,334

31. Target Population Size: Current Recipients • Currently On SSI 886,930 • On SSI at welfare reform 535,063 • Not on SSI at welfare reform 351,867 • Ages 17 – 18 106,365

32. Subpopulations of Interest • Age (current and at welfare reform) • Gender • Presence of a mental or physical disability diagnosis • Duration of recipient status

33. Sample Design Issues • Optimal sample size / allocation • For nearly 140 estimates • 11 domains of interest • 14 subpopulations • Some small domains • Efficient design for telephone with in-person follow-up

34. Sample Size /Allocation Minimize cost subject to multiple precision constraints Minimizing cost (C) =  C h n h Subject to precision constraints (Var*k ) on variance estimates (Vk ) Var k Var* k where Var k =  Var k, h / n h

35. Sample Design • Multi-stage list-based • 75 primary sampling units (PSUs) • Use composite size measure • to ensure adequate sample in small domains • equalize workload in PSUs

36. Sample Sizes • Total 9,480 • On SSI at welfare reform 6,832 • Current recipients 4,451

37. Sample Sizes for Children Affected by Welfare Reform • Subject to redetermination and continued: 1,962 • Subject to redetermination and SSI benefits were ceased: 2,000 • Not subject to redetermination 2,870 • Age 17-18 at welfare reform: 1,583 • Not receiving SSI at welfare reform but had previous contact with the program: 3,024

38. Sample Sizes for Children Currently Receiving SSI Benefits • All children: 4,451 • On SSI at welfare reform: 3,054 • Not on SSI at welfare reform: 1,398 • Children ages 17-18 1,020

39. Sample Sizes for Subpopulations

40. Sample Release • Monitoring sample status in each PSU and sampling strata • 592 cells (PSUs/strata) • Periodic release of additional sample • Target response rate: 80%

41. NSCF DATA PRODUCTS Margaret Cahalan Mathematica Policy Research

42. Data Products • Restricted data files • Public use file • Codebooks • User’s Manual • Report on Comparisons with Existing Data

43. Public Use File • Adhere to SSA guidelines for protecting privacy • Disclosure analysis • Techniques to mask identity • File will include variance estimation parameters

44. User’s Manual • Codebook (question wording, variable name, weighted and unweighted frequencies, notes on questions, population asked the question) • Annotated questionnaire with references to donor surveys • Discussion of sample design, response, weighting, and variance estimation procedures

45. Report on Comparisons to Related Surveys • Research questions enriched through comparisons and baselines • Survey design intentionally used same question wording • Report will include NSCF tables giving estimates for key statistics collected including standard errors

46. Key Related Surveys

47. Groups for Comparison fromOther Surveys • All families with disabled children or children with special health care needs • Families with disabled children who do not receive SSI benefits • Other low income families with children with disabilities or special needs • Other low income families without children with special needs

48. Distribution and severity of conditions Functional limitations Labor force status of parents Child and personal care arrangements Incidence of service utilization Extent of perceived unmet need for health care and services Expenditures and distribution of payments Impact on family and stress levels Satisfaction with care Use of special equipment Education and training Youth transition issues Key Data Items

49. Related Surveys for Major NSCF Survey Topics • Disability and Functional Status, Health Care Utilization, Health Insurance(NHIS, SIPP, 1978 Survey, SSA Administrative records, CSHCN) • Education, Training and Other Services(NHIS-disability supplement; CSHCN; Survey of American Families (SAF) • Impact on Family, Employment, Income and Housing(NHIS-Disability Supplement; SIPP; SAF; Medical Expenditure Panel Survey (MEPS)

50. Using NSCF Data for External Research Pamela Loprest The Urban Institute Washington, DC