SSI Children with Speech and Language Disorders/media/Files/Activity Files/Children... · EVIDENCE...
Transcript of SSI Children with Speech and Language Disorders/media/Files/Activity Files/Children... · EVIDENCE...
E V I D E N C E F R O M T H E N A T I O N A L S U R V E Y O F S S I C H I L D R E N A N D F A M I L I E S
SSI Children with Speechand Language Disorders
Presentation to the IOM Committee to Evaluate the SSI Disability Program for Children with Speech and Language Disorders
Kalman Rupp, Paul S. Davies, and Jeffrey Hemmeter
Social Security Administration
May 18, 2015
Two Data Sources
SSA program data Background data on award cohorts of SSI children from 1985 to
2000
Large sample and can observe program entry patterns over time (flow), but…
…limited information on recipient characteristics and virtually no information on family situation
National Survey of SSI Children and Families (NSCF) Primary focus of this presentation
Rich survey data on child and family characteristics at a single point in time (stock), but…
…sample size limits subgroup analysis and data are nearly 15 years old
SSA Data on Speech and Language Delay
SSA diagnosis codes 3153 (Speech and Language Delays) 7840 (Communication Impairment)
Award cohorts of SSI children (age 0-17 at award) 1985, 1990, 1995, and 2000
At the time of award, SSI children with speech and language delay (SLD) are: More frequently male than other SSI children Younger than other SSI children
Number and percentage of new awards with SLD growing over time (see more recent data presented by Melissa Spencer on 1/26/15)
Gender (% male) Age Group
SLD Gender and Age Distribution by Award Cohort
0
10
20
30
40
50
60
70
80
90
100
1985 1990 1995 2000
% o
f A
war
ds
Award Year
0
10
20
30
40
50
60
70
80
90
100
1985 1990 1995 2000
% o
f A
war
ds
Award Year
0-5
6-12
13-17
Number of new awardsPercentage distribution of new awards
Diagnosis Codes by Award Cohort
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
1985 1990 1995 2000
Year of Award
Other Identified
Physical
ID/MR
Other & Unknown -nonSLD
Other Mental - nonSLD
Other & Unknown -SLD
Other Mental - SLD
Award Year
Diagnosis 1985 1990 1995 2000
Other Mental - SLD 90 142 4,423 9,109
Other & Unknown - SLD 31 775 1,728 2,628
Other Mental - nonSLD 3,081 10,551 53,433 49,394
Other & Unknown - nonSLD 3,292 5,409 23,914 22,667
ID/MR 18,156 31,339 53,584 27,529
Physical 16,428 21,298 28,131 25,212
Other Identified 4,039 6,939 8,345 7,530
N 45,116 76,453 173,559 144,068
National Survey of SSI Children and Families
Conducted by SSA in 2001/2002 through contract with Mathematica Policy Research
Goal was to answer a broad range of research and policy questions about SSI children and their families
Sample frame included SSI children (0-17) and young adults (18-23) in three groups: Receiving payments in December 2000
Receiving payments in December 1996
Former recipients and denied applicants since 1992
NSCF and SLD
We focus on the NSCF sample of children aged 0-17 receiving SSI payments in December 2000 (n=3,651)
About 5% of the sample was identified as having SLD based on SSA diagnosis code 3153 (3.7%, n=135) or SSA diagnosis code 7840 (1.2%, n=44) Applying sample weights, 8.7% of the respondents have SLD
We draw comparisons between SLD and non-SLD children in the NSCF for several key characteristics that cannot be measured in SSA program data, highlighting notable and statistically significant differences between the two groups
Context and Interpretation
NSCF sample is representative of SSI recipients, but quite different from general population SSI means test → low income Disabilities of child meeting SSA screen Parent knowledge and motivation to apply
The average child in our sample has been on SSI for several years
Both SLD and non-SLD recipients are affected by dual challenges of poverty and disabilities One subgroup may have lower poverty rate than the other, but both may have high poverty
rates compared to general population SLD recipients may have higher or lower service needs compared to non-SLD recipients, but
both may have higher service needs compared to children of comparable ages who do not receive SSI
Results are descriptive, do not include regression-adjusted comparisons
Topics
Demographic characteristics of children
Disability and health status of children
Functional limitations
Health insurance and medical utilization
Out of pocket expenses
Services received and unmet needs
School-based services
Characteristics of parents and families
Financial well-being
Care and parental work
Demographics Characteristics of Children
Major difference is that SLD children tend to be relatively younger
SLD children more likely to be boys compared to non-SLD (majority is boys in both groups)
Race and ethnicity distributions are quite similar, but:
• Significantly lower proportion of whites in SLD
• Marginally significant overrepresentation of Hispanic ethnicity in SLD
0% 20% 40% 60% 80% 100%
Male***
Age group
0-5
6-12***
13-17***
Race
White**
Black
Hispanic*
SLD
non-SLD
Award Cohort vs. Cross Section
Characteristics differ depending on perspective: awardee cohort versus prevalence in cross-section of “current” SSI recipients
Awardee cohort perspective presented previously gave age, gender, and diagnosis distribution at first-ever SSI award
NSCF analysis reflects characteristics of December 2000 cross-section of SSI recipients as of the 2001/2002 NSCF interview
Possible sources of differences include differential exit patterns due to mortality and transition to nonrecipient status
Results are consistent – median age for SLD recipients is lower and higher proportion of SLD recipients are boys in both the award data and the cross-section data
Disability and Health Status of Children
Overall distributions for general health status, severity, and ability to do things are remarkably similar based on respondent perceptions (mainly parents)
Differences are not statistically significant and difficult to interpret
0% 20% 40% 60% 80% 100%
General Health Status
Poor
Fair
Good
Very good
Excellent
Missing
Severity of Health Condition
High
Moderate
Mild
No health condition reported
Missing
Disability affects ability to do things
A great deal
Some
Very little
No disability reported
SLD
non-SLD
Functional Limitations
SLD children report significantly less need for help with physical functioning, as might be expected
NSCF is lacking in measurement of social, cognitive, and psychological functioning
0% 20% 40% 60% 80% 100%
Needs help--
Getting in or out of bed****
Getting around inside home***
Using or getting to toilet***
Eating***
Bathing or showering*
Dressing
SLD
non-SLD
Health Insurance and Medical Utilization
Due to Medicaid and SCHIP both SLD and non-SLD children are essentially fully insured
Insurance coverage concerns among those losing SSI in adulthood are expected to be reduced under ACA due to Medicaid expansion and availability of subsidized insurance
A relatively lower proportion of SLD children have 4+ annual doctors’ visits and have been hospitalized during previous year
0% 20% 40% 60% 80% 100%
Any health insurance
Medicaid
SCHIP
Private health insurance
Doctor Visits
0
1
2
3
4**
5 or more**
Missing
Hospital Visits
0***
1***
2
3 or more
Missing
SLD
non-SLD
Out of Pocket (OOP) Expenses
Despite similarities in health insurance coverage, a smaller fraction of SLD children have any out of pocket (OOP) expenses for medical care, services, or therapies
The distributions of the dollar values of OOP expenses (over the 12 months prior to the interview) are similar for SLD and non-SLD children
The mean amount of OOP expenses (among those with positive values) was $423 for SLD children and $862 for non-SLD children
0% 20% 40% 60% 80% 100%
Any OOP expenses**
Medical OOP expenses ($)
None
1-99
100-199
200-499
500-999
1,000 or more
Servcies/Therapies OOP expenses ($)
0
1-99
100-199
200-499
500-999
1,000 or more
SLD
non-SLD
Services Received and Unmet Needs
Significantly higher utilization of physical, occupational, speech services and audiology services among SLD children
Also significantly higher unmet need for physical, occupational, and speech services for SLD children
Unmet need for mental health counseling significantly lower among SLD children
0% 20% 40% 60% 80% 100%
Services received
Physical, occupational, speech***
Respiratory**
Recreational***
Audiology**
Transportation
Respite care***
Mental health counseling
Unmet needs (among not receiving)
Physical, occupational, speech*
Respiratory
Recreational
Audiology
Transportation
Respite care
Mental health counseling**
SLD
non-SLD
School-Based Services
Vast majority ages 3-17 are in school in both groups
Percent of 3-5 years old in school is 94% for SLD children but only 88% for non-SLD children
Statistically significantly higher proportion of SLD children in school in 13-17 age group – relative odds of dropping out lower
For ages 3-17 combined, the majority of both groups has had experience with Special Ed and IEPs
0% 20% 40% 60% 80% 100%
In School
All age 3-17***
Age 3-5
Age 13-17*
Special Ed Ever (age 3-17)
IEP Ever (age 3-17)
SLD
non-SLD
Characteristics of parents and families
Both SLD and non-SLD recipients are clearly disadvantaged: single parent, several children, parents with low education, about half live in household with at least one other person with disabilities
A notable difference is that significantly smaller proportion of SLD children live with both parents – only about 21 percent – and a larger fraction live with mom only
0% 20% 40% 60% 80% 100%
Living Arrangements
Two Parents**
Mom***
Dad*
Other Older Relative
Other
Number of Children in HH
1
2
3
4
5+
Missing
Other HH Member with Disability
Mom Education (if present)
Less than HS
HS or GED
More than HS
Missing
Dad Education (if present)
Less than HS
HS or GED
More than HS
Missing
SLD
non-SLD
Financial Well-Being
Overall SSI children live in families with relatively high poverty rate – significantly higher for families of SLD children
SSI provides roughly half of average family income
Even though parents have relatively weak labor force attachment and low earnings capacity, many are not disabled and earnings is a substantial source of family income for many
Food Stamps and housing assistance are significantly more prevalent among families of SLD children
0% 20% 40% 60% 80% 100%
Poverty Rate**
Total Family Income< 500
500-9991,000-1,4991,500-1,9992,000-2,999
3,000 or more
Mom Earnings (if present)0
1-9991,000-1,999
2,000 or moreMissing
Dad Earnings (if present)0
1-9991,000-1,999
2,000 or moreMissing
Percent of family income fromSSI
Earnings
Percent receivingSocial Security
Other Public AssistanceFood Stamps**
Housing Assistance**Energy Assistance
SLD
non-SLD
Care and Parental Work
Survey asked about caregiving hours specifically related to child’s disabilities
Significantly lower proportion of SLD children received care from family members
66% of SLD children reportedly did not receive any caregiving hours – family or nonfamily
Significantly more caregiving was provided for non-SLD children
Most of the care was provided by family members for both groups
About half of mothers reported no market work for both groups, but 20% worked full time
0% 20% 40% 60% 80% 100%
Family Provides Care***
Total Hours of Care
0***
1-19
20-34**
35 or more***
Missing
Mom Weekly Work Hours (if present)
0
1-20
21-35
36 or more
Missing
SLD
non-SLD
Conclusions – Child Characteristics
Percent of SSI awardees with SLD dramatically increased between 1985 and 2000 Consistent with increase post-2000, but rate of increase declined post-2000 Percent classified as ID/MR substantially decreased Change in diagnostic and/or classification practices ?
Overall SSI children with SLD tend to have characteristics that do not dramatically differ from non-SLD children on SSI on variables that were available for the analysis Most importantly, overall distributions on responses to general health and severity questions are remarkably
similar for SLD and non-SLD children and do not show statistically significant differences SLD children appear significantly less limited on functional limitations measures from the NSCF, but NSCF
functional limitations measures exclusively focus on physical disabilities To get balanced and unbiased picture, more information on severe limitations in social functioning, cognitive and psychological variables would be extremely helpful
Although NSCF contains no comparable data for all (non-SSI) children, both SLD and non-SLD children show high proportion of minorities, high utilization of school-based services, virtually complete health insurance coverage. Both SLD and non-SLD children had modest reported OOP expenses, but small minority in both groups reported OOP expenses that are relatively high compared to SSI income guarantee (Federal Benefit Rate)
Some notable differences. SLD children tend to be younger, have less doctors visits and hospitalizations, received more
physical/occupational/speech services and audiology services
Conclusions – Family Situation
Generally, the family situation of both SLD and non-SLD children on SSI indicates high degree of financial vulnerability Prevalence of poverty is high despite SSI cash benefits providing a large portion of family
income Family characteristics typically associated with poverty are common for both groups. These
include: large proportion of single parent families, high prevalence of low educational attainment of parents, low employment levels, part time work and low wages
About half of SLD children and non-SLD children on SSI live in households with at least one other person with a disability Added source of stress and financial vulnerability Increases caregiving needs
Many report family and nonfamily caregiving hours specifically related to health care needs of both SLD and non-SLD children on SSI However, substantially more report no family or nonfamily caregiving hours for children
with SLD
Classification of Childhood Population bySSI Eligibility and SLD Diagnosis
Usefulness of NSCF and other data sets to address SSI and SLD issues depends on questions of interest
Questions of interest determine the comparison groups that are necessary and relevant
Sample coverage is key
Financially eligible
for SSI under means
test?
Serverely disabled according to SSA criteria?
Yes, SLD Yes, non-SLD Not severe, but
some disablement
Neither severe nor
less severe
disablement
YES
SSI (in NSCF)
severe disablement
+
financially
vulnerable
SSI (in NSCF)
severe disablement
+
financially
vulnerable
less severe
disablement
SLD and/or non-SLD
+
financially
vulnerable
no disablement
+
financially
vulnerable
NO
SLD
severe disablement
+
financially
better off
non-SLD
severe disablement
+
financially
better off
less severe
disablement
SLD and/or non-SLD
+
financially
better off
no disablement
+
financially
better off
NSCF in Context
NSCF is useful to answer questions where within-SSI comparisons are relevant, but broader questions require external standards and comparison with non-SSI populations
Looking to future: Need for more current data
Need for future data collection strategies that integrate SSI and SLD issues in an overall sample framework of all children in the United States Need for sufficient SSI and SLD sample sizes
Accurate identification of SSI receipt is crucial (administrative data matches)
Use variables that are relevant for assessing nature and severity of disabling conditions for both SLD and non-SLD subgroups of children
Assessment of longer-term outcomes over the childhood, adolescent and adult portions of the life-cycle
Contact Information
Kalman RuppSenior Economist, Office of Policy Evaluation and ModelingOffice of Research, Evaluation, and [email protected]
Paul S. DaviesSenior AdvisorOffice of Data Exchange and Policy [email protected]
Jeffrey HemmeterDeputy Director, Office of Program DevelopmentOffice of Research, Demonstration, and Employment [email protected]
References
Davies, Paul S. and Kalman Rupp (2005/2006), “An Overview of the National Survey of SSI Children and Families and Related Products,” Social Security Bulletin 66(2): 7-20.
Kalman Rupp, Paul S. Davies, Chad Newcomb, Howard Iams, Carrie Becker, Shanti Mulpuru, Stephen Ressler, Kathleen Romig, and Baylor Miller (2005/2006), “A Profile of Children with Disabilities Receiving SSI: Highlights from the National Survey of SSI Children and Families,” Social Security Bulletin 66(2): 21-48.
Rupp, Kalman, Jeffrey Hemmeter, and Paul S. Davies (2015), “Longitudinal Patterns of Disability Program Participation and Mortality Across Childhood SSI Award Cohorts,” Social Security Bulletin 75(1): 35-64.
Davies, Paul S., Kalman Rupp, and David Wittenburg (2009), “A Life-Cycle Perspective on the Transition to Adulthood among Children Receiving Supplemental Security Income Payments,” Journal of Vocational Rehabilitation – Special Issue on SSI Youth in Transition 30(3): 133-151.
Rupp, Kalman and Steve Ressler (2009), “Family Caregiving and Employment among Parents of Children with Disabilities on SSI,” Journal of Vocational Rehabilitation – Special Issue on SSI Youth in Transition 30(3): 153-175.
DeCesaro, Anne and Jeffrey Hemmeter (2009), “Unmet Health Care Needs and Medical Out-of-Pocket Expenses of SSI Children,” Journal of Vocational Rehabilitation – Special Issue on SSI Youth in Transition 30(3): 177-199.
Aron, Laudan Y. and Pamela J. Loprest. Meeting the Needs of Children with Disabilities. Washington, DC: The Urban Institute Press, 2007.