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Appendix B Descriptions of Data Sources ADMINISTRATIVE OR SERVICE DATA Individuals with Disabilities Education Act Data Since 1975, the U.S. Department of Education has collected data on early intervention and special education services provided to children with disabilities as required by the Individuals with Disabilities Education Act (IDEA). The U.S. Department of Education maintains and provides public access to state-supplied administrative records about children and young adults with disabilities until the age of 21 (U.S. Department of Education, 1995). The act requires each state that receives assistance to report annually the number and percentage of children with disabilities who are receiving educational services, by race, ethnicity, limited English proficiency status, gender, and disability category (Wexler and Miceli, 2015). IDEA data in- clude annual counts of services provided to children ages birth-2 (Part C) and ages 3-21 (Part B). Part B data are collected from 60 reporting entities and provide infor- mation on the number of children with disabilities, ages 3-21, who received special education and related services under IDEA between October 1 and December 1 each year (based on the state-designated child count date). The data are collected by disability category, race/ethnicity, gender, and discrete age (Wexler and Miceli, 2015). The Part B data are reported by primary disability category. As a result, these data may be artificially deflated when speech and language impairments are reported as âdevelopmental delayâ or âmultiple disabilities.â On the other hand, there is potential for inflation 239
240 SPEECH AND LANGUAGE DISORDERS IN CHILDREN in the speech or language impairment category when autism, for example, is reported in this category (Wexler and Miceli, 2015). The Part C data reflect the number of infants and toddlers, ages birth-2, who received early intervention services under IDEA as of the annual state-designated child count date (October 1-December 1). The data are collected from 56 Part C reporting entities by race/ethnicity, gender, and discrete age. The data pro- vide information on service utilization and the number and distribution of students served under the law. They also provide information on such topics as the site of service (e.g., regular classroom, special education classroom, community-based setting); service providers (e.g., speech and language pathologist, special education teacher, special education paraprofessional); graduation rates for students, broken out by disability category; and the prevalence of the disability categories (e.g., autism, emotional disturbance, specific learning disabilities, speech or language impairments, visual impair- ments, intellectual disabilities) (U.S. Department of Education, 2014). The Part C data are not reported by disability category. Medicaid Analytic eXtract (MAX) Data An analysis of MAX data, commissioned for this study, was con- ducted by a team at Rutgers University. The study population included all Medicaid-eligible youth ages 3 to 17 years in a subset of 20 states for the years 2001-2010 (the most recent year for which MAX data are publicly available). For purposes of inclusion in this analysis, enrollee age was computed as of July 1 each year, and 11 consecutive or nonconsecutive months of Medicaid eligibility in a single year was required. The 20 states selected were those found to provide relatively complete diagnosis and treatment detail (Byrd and Dodd, 2012; Nysenbaum et al., 2012).1 The analysis was based primarily on Medicaid enrollment, claims, and prescrip- tion drug-fill data from the MAX. These data provided a set of research files constructed from mandated periodic data submissions by the state Medicaid programs; these submissions had been compiled and processed by the Centers for Medicare & Medicaid Services (CMS). Enrollment data include information on such beneficiary characteristics as age, sex, and race/ ethnicity; Medicaid eligibility class; diagnoses recorded; services received; and prescriptions filled. Claims data are provided separately for inpatient, long-term care, and other (primarily outpatient) services and include details 1â The preliminary MAX data analysis included 44 states and the District of Columbia. A subset of 20 states was identified that in 2009 either (1) had predominantly fee-for-service youth Medicaid populations or (2) had been identified as having relatively complete and us- able managed care encounter data for that population (Byrd and Dodd, 2012; Nysenbaum et al., 2012).
APPENDIX B 241 on diagnoses received and services delivered. The few youth with dual Medicaid/Medicare eligibility were excluded from the analysis because records from Medicare, which is the first payer for many services, were not observable for this population. Enrollees were assigned to one of three basis-of-eligibility (BoE) groups following examination of their eligibility records: Supplemental Security Income (SSI)/Medicaid, foster care, and other (including a large group eli- gible solely because of household income). In general, households eligible for Medicaid on the basis of income are poor or near-poor (living below 200 percent of the federal poverty level [FPL]). Analyses were stratified by this grouping variable. Each enrolleeâs last observed BoE category in each year was used to assign her or him an overall status for the year, in order to establish mutually exclusive categories. Preliminary analysis revealed 96 percent consistency throughout the year for the focal SSI/Medicaid group, suggesting that this method of assigning BoE categories on the basis of the last observation of the year did not distort these enrolleesâ eligibility his- tories. A threshold of either one or more inpatient claims or two or more outpatient claims on different dates was used to establish the presence of speech and language disorders and nine other conditions for each enrollee for each year of analysis (using codes from the International Classification of Diseases, Ninth Revision, Clinical Modification [ICD-9-CM]). Once enrolleesâ eligibility, sociodemographic characteristics, diagnoses, prescrip- tions, and services had been identified, analyses were performed to track diagnosis and treatment trends between 2001 and 2010. Supplemental Security Income Data Allowance and recipient data are collected and maintained by two different divisions within the Social Security Administration (SSA): (1) the Office of Disability Program Management Information (ODPMI) for al- lowances, and (2) the Office of Research, Evaluation, and Statistics (ORES) for recipients. Office of Disability Program Management Information The ODPMI tracks information on the outcomes of the SSI adjudi- cation process. Specifically, the ODPMI records information on whether an applicant is eligible according to the SSI work, income, and resource criteria (Step 1) and the disability criteria (Steps 2 and 3). Administrative information regarding the outcome of a determination of disability is re- corded on a standard form called the SSA-831 âDisability Determination and Transmittalâ form. Data collected from the SSA-831 form are main- tained in a database known as the Disability Research File (DRF). Data
242 SPEECH AND LANGUAGE DISORDERS IN CHILDREN on determinations collected by the SSA also include information on three aspects of every determination: (1) a medical diagnosis associated with the determination, (2) the level of adjudication at which the allowance was made, and (3) the regulation basis for the allowance. These three key data elements are discussed in the following subsections. Diagnostic categories for determinations of SSI benefitsâ The SSAâs Program Operations Manual requires that the diagnosis or medical basis for an ap- plicantâs disability most pertinent to the determination of eligibility be recorded. The SSA collects information on a primary diagnosis and an optional secondary diagnosis for each determination. According to the Program Operations Manual, âThe primary diagnosis for an allowance refers to the basic condition that rendered the individual disabled, or in (the case of) a denial, the one which the evidence shows to have the most significant effect on the individualâs ability to work.â A secondary diagnosis is defined as the âmost significant diagnosis following the primary diagnosis in severityâ (SSA, 2014). The SSA disability examiners are required to record an âimpairment codeâ for every disability determination. The SSAâs impairment codes are a list of numeric codes loosely informed by ICD-9, used to classify medical diagnoses that are the basis for disability claims. Each impairment code is linked to a diagnostic category within the SSAâs âListing of Impairmentsâ based in part on the Diagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised (DSM-III-R) (SSA, 2010). For each allowance that meets or equals a listing, the examiner is required to record the correlated impairment code. For every allowance that functionally equals a Listing, the examiner must record the impairment code that most closely matches the diagnosis in the applicantâs case file and is the basis of his or her disability. For denials, examiners are instructed to record an impairment code for the diagnosis that has the most effect on the claimantâs function, or a code for ânone establishedâ if there is no diagnosis. Level of adjudicationâ The ODPMI also collects information on the level of adjudication at which a determination is made. Regulation basis of determinationsâ Finally, the ODPMI keeps records on whether allowances are for disabilities that meet, medically equal, or functionally equal the listings. Office of Research, Evaluation, and Statistics The ORES collects and maintains data on the number of individuals who receive SSI benefit payments. These data are known as the Supplemental
APPENDIX B 243 Security Record (SSR). The SSR is a record of the number of individuals who apply for SSI disability benefits; the number of applicants who be- come eligible for benefits under both the nondisability (work, income, and resource) and disability criteria (awards2); and the number of individuals who are currently recipients of SSI disability benefit payments. The recipient data in the SSR refer to the number of recipients within a time periodâ specifically, within December of the year. POPULATION DATA National Health Interview Survey The National Health Interview Survey (NHIS), conducted by the Centers for Disease Control and Preventionâs National Center for Health Statistics (NCHS), is a cross-sectional household interview survey that collects data annually to monitor the health of the U.S. population. The sample consists of the civilian noninstitutionalized population residing in the United States, and the sample size is approximately 35,000 households with 87,500 persons (CDC, 2012). The surveyâs core questions include four major components: Household, Family, Sample Adult, and Sample Child. Major health topics addressed include physical and mental health status; chronic conditions, including asthma and diabetes; access to and use of health care services; health insurance coverage and type of coverage; health-related behaviors; measures of functioning and activity limitations; immunizations; and injuries and poisonings (CDC, 2014a). National Health Interview Surveyâ Voice, Speech, and Language Supplement In 2012, the NHIS included a Voice, Speech, and Language Supplement with Child Communication Disorders (CCD) being added to the Sample Child section of the survey. The CCD Supplement sampled children ages 3 to 17 with difficulties in voice, swallowing, speech, and language lasting for 1 week or longer in the past 12 months (CDC and HHS, 2013). The supplement also included questions related to diagnosis, age of onset, sever- ity, and receipt of speech-language therapy or other intervention services (Hoffman, 2015). 2â An award is an administrative status indicating that an applicant has met both disability and nondisability (work, income, and resource) eligibility criteria.
244 SPEECH AND LANGUAGE DISORDERS IN CHILDREN National Survey of Childrenâs Health The NSCH is a national survey sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration. Data are collected using a State and Local Area Integrated Telephone Survey (SLAITS) (Data Resource Center for Child and Adolescent Health, 2012). Conducted in years 2003-2004, 2007-2008, and 2011-2012, the NSCH provides parent-reported information on childrenâs health and well-being at the national and state levels for a representative sample of noninstitutional- ized children in the United States aged 0-17 years (Data Resource Center for Child and Adolescent Health, 2012). The number of interviews for the 2003-2004 survey was 102,353, for the 2007-2008 survey 91,642 (CDC, 2013), and for the 2011-2012 survey 95,677 (CDC, 2013). Topics covered in the NSCH include child and family demographics, childrenâs physical and mental health status, early childhood-specific information (ages 0-5 years), middle-childhood- and adolescent-specific information (ages 6-17 years), family health and activities, parental health status, and parentsâ per- ceptions of neighborhood characteristics (Data Resource Center for Child and Adolescent Health, 2012), as well as access to and use of health care services, access to medical homes, and health insurance status and type of coverage (Data Resource Center for Child and Adolescent Health, 2012). National Survey of Children with Special Health Care Needs Sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration, the National Survey of Children with Special Health Care Needs (NS-CSHCN) is a national survey that was conducted using SLAITS in years 2001, 2005-2006, and 2009-2010 (Data Resource Center for Child and Adolescent Health, 2012). The NS- CSHCN provides parent-reported information on the health and functional status of children with special health care needs at the national and state levels; the survey sample consists of the noninstitutionalized population of children in the United States with special health care needs aged 0-17 years (Data Resource Center for Child and Adolescent Health, 2012). The survey included 38,866 interviews in 2001 and 40,840 interviews in 2005- 2006 (CDC, 2014b). The 2009-2010 survey consisted of 40,242 detailed interviews (CDC, 2014b). Topics covered in the NS-CSHCN include childâs health and functional status (expanded to include current conditions and functional limitations beginning in 2005-2006), childâs health insurance status, adequacy of coverage, and the impact of the childâs health on the family. The survey also covers access to health care, including types of health care services required by a child, any unmet health care needs, care
APPENDIX B 245 coordination, and the family-centeredness of the childâs health care (Data Resource Center for Child and Adolescent Health, 2012). Survey of Income and Program Participation The Survey of Income and Program Participation (SIPP) is a national household-based survey administered by the U.S. Census Bureau that col- lects information on income, labor force participation, social program participation and eligibility, and general demographic characteristics (U.S. Census Bureau, 2013). The survey design consists of a continuous series of national panels ranging in duration from 2.5 to 4 years, with inter- views conducted every 4Â months (U.S. Census Bureau, 2013). Each panel consists of a nationally representative sample of noninstitutionalized indi- viduals and households, with sample sizes ranging from 14,000 to 52,000 interviewed households (U.S. Census Bureau, 2013). Interviews to collect parent-reported information for children are performed in person and by telephone. The focus is on documenting the economic well-being of re- spondents by focusing on labor force participation, program participation (e.g., Temporary Assistance for Needy Families [TANF], SSI, Supplemental Nutrition Assistance Program [SNAP], and income) (U.S. Census Bureau, 2013). Additional SIPP topics include personal history, child care, wealth, program eligibility, child support, utilization and cost of health care, dis- ability, school enrollment, taxes, and annual income (U.S. Census Bureau, 2013). REFERENCES Byrd, V. L. H., and A. H. Dodd. 2012. Accessing the usability of encounter data for enrollees in comprehensive managed care across MAX 2007-2009. Mathematica Policy Research Medicaid Policy Brief No. 15. www.cms.gov/Research-Statistics-Data-and-Systems/ Computer-Data-and-Systems/MedicaidDataSourcesGenInfo/Downloads/MAX_IB_15_ AssessingUsability.pdf (accessed July 18, 2015). CDC (Centers for Disease Control and Prevention). 2012. National Health Interview Survey. http://www.cdc.gov/nchs/nhis/about_nhis.htm (accessed June 12, 2015). CDC. 2013. State and Local Area Integrated Telephone Survey. http://www.cdc.gov/nchs/ slaits/nsch.htm (accessed April 15, 2015). CDC. 2014a. NCHS fact sheet. http://www.cdc.gov/nchs/data/factsheets/factsheet_nhis.htm (accessed June 12, 2015). CDC. 2014b. State and local area integrated telephone survey. http://www.cdc.gov/nchs/slaits/ cshcn.htm (accessed April 15, 2015). CDC and HHS (U.S. Department of Health and Human Services). 2013. 2012 National Health Interview Survey (NHIS) public use data release. http://ftp.cdc.gov/pub/health_statistics/ nchs/Dataset_Documentation/NHIS/2012/srvydesc.pdf (accessed June 12, 2015). Data Resource Center for Child and Adolescent Health. 2012. Frequently asked questions. http://www.childhealthdata.org/learn/faq#whatisNSCH (accessed April 1, 2015).
246 SPEECH AND LANGUAGE DISORDERS IN CHILDREN Hoffman, H. J. 2015. Speech and language impairments in the US pediatric population: Findings from the National Health Interview Survey (NHIS) voice, speech, and language supplement. PowerPoint presentation. Nysenbaum, J., E. Bouchery, and R. Malsberger. 2012. The availability and usability of be- havioral health organization encounter data in MAX 2009. Mathematica Policy Research Medicaid Policy Brief No. 14. www.mathematica-mpr.com/~/media/publications/PDFs/ health/MAX_IB14.pdf (accessed July 18, 2015). SSA (Social Security Administration). 2010. 20 CFR parts 404 and 416 revised medical criteria for evaluating mental disorders; proposed rule. http://www.gpo.gov/fdsys/pkg/FR-2010- 08-19/pdf/2010-20247.pdf (accessed August 10, 2015). SSA. 2014. DI 26510.015 completing item 16a and 16b on the SSA-831 disability determi- nation and transmittal. https://secure.ssa.gov/poms.nsf/lnx/0426510015 (accessed April 23, 2015). U.S. Census Bureau. 2013. Survey of income and program participation. http://www.census. gov/programs-surveys/sipp/about/sipp-introduction-history.html (accessed April 1, 2015). U.S. Department of Education. 1995. Individuals with Disabilities Education Act amendments of 1995: Reauthorization of the Individuals with Disabilities Education Act (IDEA). Washington, DC: U.S. Department of Education. U.S. Department of Education. 2014. 36th annual report to Congress on the implementation of the Individuals with Disabilities Education Act, 2014. http://www2.ed.gov/about/ reports/annual/osep/2014/parts-b-c/36th-idea-arc.pdf (accessed June 12, 2015). Wexler, L., and M. Miceli. 2015. Using IDEA section 618 data to explore prevalence of stu- dents with speech and language impairments. PowerPoint presentation.