NATIONAL SURVEY OF SSI
CHILDREN AND FAMILIES (NSCF)
American Public Health
Association Annual Meeting
October 23, 2001
National Survey of
SSI Children and Families
BACKGROUND AND OBJECTIVES
Kalman Rupp and Paul Davies
Social Security Administration
National Survey of
SSI Children and Families
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
NSCF
Growth of SSI for Children
SSI Child Applications, Awards, and Recipients, 1974-2000
1,200,000
1,000,000
Number
800,000
600,000
400,000
200,000
0
1974 1976 1978 1980 1982 1984 1986 1988 1990 1992 1994 1996 1998 2000
Year
Applications
Awards
Source: Children Receiving SSI, June 2001 (Tables 1-3)
Recipients
NSCF
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
NSCF
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)
NSCF
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
NSCF
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
NSCF
What We Do Know: Diagnostic Mix
Primary Diagnosis of SSI Children
December 2000
100%
90%
Percent with diagnosis
80%
70%
60%
50%
40%
33%
32%
Mental retardation
Other mental
35%
30%
20%
10%
0%
Source: Annual Statistical Supplement, 2001 - forthcoming (Table 7.F1)
Physical
NSCF
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)
$ per
month
$6,000
$5,000
SSI
$4,000
non-SSI
unearned
earnings
$3,000
$2,000
$1,000
$0
with child on SSI without child on
SSI
NSCF
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
NSCF
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
Family
income as
percent of
poverty line
Under 50%
50-74%
75-99%
100-199%
200% +
Total
Before After
SSI
SSI
percent
distribution
41.7
9.3
11.9
15.5
9.9
14.4
24.0
39.5
12.4
21.4
100.0 100.0
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What We Do Know:
Kids in Multirecipient Households
50
40
30
0-17 yrs
18-64 yrs
65+ yrs
20
10
0
other multi

60
couple

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
single

Proportion of SSI
Recipients in Poverty
NSCF
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
NSCF
DATA COLLECTION AND
SURVEY CONTENT
Susan Mitchell
Mathematica Policy Research
National Survey of
SSI Children and Families
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)
NSCF
Methods for Maximizing Response

Advance letter

800 number

$10 incentive

Refusal conversions

Spanish translation
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CATI

October status = 40 percent response rate

CATI goal = 65 percent response

100 telephone interviewers

16 hours of training

August 2001 – February 2002
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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
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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
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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
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Questionnaire Content


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
NSCF
SAMPLE DESIGN
Frank Potter
Michael Sinclair
Bidisha Ghosh
National Survey of
SSI Children and Families
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)
NSCF
Target Populations
 Children
and families affected by
welfare reform
 Children
and families currently
receiving SSI benefits
NSCF
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
NSCF
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
NSCF
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
NSCF
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
NSCF
Target Population Size:
At Welfare Reform

On SSI at welfare reform
1,520,927

Subject to redetermination
– Continued
– Denied

Not subject to redetermination
1,195,305

Not on SSI at welfare reform
1,991,648

Ages 17–18 at welfare reform
325,622
145,069
180,553
341,334
NSCF
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
NSCF
Subpopulations of Interest

Age (current and at welfare reform)

Gender

Presence of a mental or physical
disability diagnosis

Duration of recipient status
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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 inperson follow-up
NSCF
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
NSCF
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
NSCF
Sample Sizes

Total
9,480

On SSI at welfare reform
6,832

Current recipients
4,451
NSCF
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


NSCF
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

NSCF
Sample Sizes for Subpopulations
Male
Female
0-5
6-12
13-16
17-18
On SSI at
Welfare
Reform
4,515
2,317
956
2,861
1,908
1,107
Current
Recipients
2,865
1,587
611
1,661
1,159
1,020
NSCF
Sample Release

Monitoring sample status in each PSU
and sampling strata
– 592 cells (PSUs/strata)

Periodic release of additional sample

Target response rate: 80%
NSCF
NSCF DATA PRODUCTS
Margaret Cahalan
Mathematica Policy Research
National Survey of
SSI Children and Families
Data Products

Restricted data files

Public use file

Codebooks

User’s Manual

Report on Comparisons with Existing Data
NSCF
Public Use File

Adhere to SSA guidelines for protecting
privacy
– Disclosure analysis
– Techniques to mask identity

File will include variance estimation
parameters
NSCF
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
NSCF
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
NSCF
Key Related Surveys
Related survey
Sample and estimates
National Health Interview Survey
(NHIS) and NHIS-Disability
Annual 43,000 households and
38,000 children
.7% (252) severe , 4.7% (1,758)
moderate, all disabled-6.5% (2,475)
36,700 households and 27,000
children –age 0-14 (1.1% severe;
9.1% any disability)-age 15-21 (1.1%
severe; 12.1 any disability)
2,750 households; 5,000 children
per state
750 CSHCN per state
Survey of Income and Program
Participation
National Survey of Children with
Special Health Care Needs-July
2002
NSCF
Groups for Comparison from
Other 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
NSCF
Key Data Items






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
NSCF
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)
NSCF
Using NSCF Data for External
Research
Pamela Loprest
The Urban Institute
Washington, DC
National Survey of
SSI Children and Families
Research on Children with
Disabilities

Debate up to welfare reform around rationale
of SSI payments for children, but lack of
research

Non-disability focused large survey data
sources lack sample size and disability
information

Administrative/program data lack crossprogram and family information
NSCF
Research Questions on Rationale for
SSI Payments to Children

Extent to which families face disabilityrelated costs

Need for income replacement for caregivers

Can SSI payments help meet developmental
needs and therefore reduce future use of
income support as adults
NSCF
Additional Areas for Research




Transition to adulthood
Unmet service needs
Multiple program participation
Effects on family
NSCF
Presentation Outline

How NSCF information can be used to
address research questions

Some general issues and caveats in using
the data
NSCF
Disability-Related Expenditures




Level of out-of-pocket payments for a large
number of disability specific needs, including
medicines, special diet, medical supplies,
clothing, additional health premiums and
utility payments
Payments for health-related care giving
Durable medical equipment expenditures
Direct question on how SSI check spent
NSCF
SSI as Caregiver Income
Replacement



To what extent are children on SSI receiving
care/health care by family members?
Receiving paid non-family care?
How do parental work patterns vary by
child’s care needs?
NSCF
Children with Disabilities’ Transition
to Adulthood




Allows for study of 18 to 25 year olds
Document status: living arrangements,
benefit status, work/education
Analyze connection between receipt of
special education/training/vocational
services and current status
Additional questions on education activities
for 14 to 17 year olds
NSCF
Unmet Service Needs




Delays/lack of receipt of medical services
and why
Extent of use and need for services
Why not receiving needed services
Whether on waiting list for specific services
NSCF
Multiple Program Participation



Questions on service receipt across
programs
Information on receipt of special education
services, early intervention services,
vocational rehabilitation services,
transportation services
Family receipt of other public assistance
NSCF
Effects on Families

Questions on how a child with disability
impacts family status/functioning

Severity/type of disability relates to family
circumstances
– income, parental stress, material hardship
NSCF
General Issues/Limitations of
Research with NSCF

SSI children are not representative of all
children with disabilities

No families without children with disabilities
for direct comparisons

No longitudinal information to make
inferences over time
NSCF
SSI Children Compared to all
Children with Disabilities

Using a functional definition (NHIS-D data),
6 million children have disabilities, 4 million
under 200% poverty

SSI kids likely more severe disability and
poorer

Not all SSI eligibles receive benefits
NSCF
Using NSCF with other Survey Data

Comparisons of NSCF results to results for
all children with disabilities
– extent to which SSI payments reduce
need, hardship, etc.

Comparison of NSCF results to low-income
families without a child with a disability
– for example, relative probability of parental
stress
NSCF
Difficulties in Using NSCF with other
Survey Data

Interpretation of differences difficult
– Differences in survey sample, questions,
and time frame limit comparability
– Not just outcome comparisons, but need
similar controls

Similar results for sample of SSI kids in other
surveys may bolster credibility of
comparison to non-SSI samples
NSCF
Longitudinal Information

Some questions require information over
time, e.g. how past service use affects
current health or economic status

Some longitudinal/history data available
– Use of administrative data for benefit
history, potentially earnings history
– Follow-up surveys provide additional
information
NSCF