SSI Children with Speech and Language Disorders

SSI Children with Speech and Language Disorders 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 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)

% of Awards % of Awards SLD Gender and Age Distribution by Award Cohort Gender (% male) Age Group 100 90 80 70 100 90 80 70 60 60 50 40 30 20 10 50 40 30 20 10 0-5 6-12 13-17 0 1985 1990 1995 2000 Award Year 0 1985 1990 1995 2000 Award Year

Diagnosis Codes by Award Cohort Number of new awards Percentage distribution of new awards 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 7,530 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% Other Identified Physical ID/MR Other & Unknown - nonsld Other Mental - nonsld Other & Unknown - SLD Other Mental - SLD N 45,116 76,453 173,559 144,068 0% 1985 1990 1995 2000 Year of Award

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

0% 20% 40% 60% 80% 100% 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 Needs help-- Getting in or out of bed**** Getting around inside home*** Using or getting to toilet*** Eating*** SLD non-sld Bathing or showering* Dressing

0% 20% 40% 60% 80% 100% 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 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

0% 20% 40% 60% 80% 100% 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 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 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 0% 20% 40% 60% 80% 100% SLD non-sld

0% 20% 40% 60% 80% 100% 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 Poverty Rate** Total Family Income < 500 500-999 1,000-1,499 1,500-1,999 2,000-2,999 3,000 or more Mom Earnings (if present) 0 1-999 1,000-1,999 2,000 or more Missing Dad Earnings (if present) 0 1-999 1,000-1,999 2,000 or more Missing Percent of family income from SSI Earnings Percent receiving Social Security Other Public Assistance Food Stamps** Housing Assistance** Energy Assistance SLD non-sld

0% 20% 40% 60% 80% 100% 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 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 by SSI Eligibility and SLD Diagnosis Financially eligible for SSI under means test? YES NO Serverely disabled according to SSA criteria? Yes, SLD Yes, non-sld Not severe, but some disablement SSI (in NSCF) severe disablement + financially vulnerable SLD severe disablement + financially better off SSI (in NSCF) severe disablement + financially vulnerable non-sld severe disablement + financially better off less severe disablement SLD and/or non-sld + financially vulnerable less severe disablement SLD and/or non-sld + financially better off Neither severe nor less severe disablement no disablement + financially vulnerable no disablement + financially better off 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

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 Rupp Senior Economist, Office of Policy Evaluation and Modeling Office of Research, Evaluation, and Statistics Kalman.Rupp@ssa.gov Paul S. Davies Senior Advisor Office of Data Exchange and Policy Publications Paul.Davies@ssa.gov Jeffrey Hemmeter Deputy Director, Office of Program Development Office of Research, Demonstration, and Employment Support Jeffrey.Hemmeter@ssa.gov

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.