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This project was a mixed-method, multi-level study of low income families of children with special needs and the system which served them, focusing primarily on child care, employment, and balancing work and family. This approach included an analysis of existing national and state-level data sets, statewide surveys of parents and child care providers, and a field study to look at these issues at the local level in three selected communities in the state of Maine: Portland, Lewiston/Auburn, and Presque Isle. While the primary focus was on access to child care, this project also looked at the related issues of welfare reform, the impact of work force participation on having a child with special needs, and the issue of coordination of early intervention services with the child care system. The goal was to understand better the issues facing low income families with special needs children across the programs and policies affecting their employment, access to child care, and meeting the special needs of their children. In the first year of the study, qualitative research was conducted to learn directly from parents about their experiences. In the second and third years, a field study of three communities was conducted as well as statewide surveys and analysis of national data bases to supplement the data collected in the first year. This data collection is comprised of the two quantitative data files produced during the second and third years of the study which are described in more detail below.

Child Care Provider Survey: The Child Care Provider Survey was a statewide survey of child care providers selected at random from the list of licensed providers in Maine given by the state licensing agency. Questions focused on the perspective of child care providers on the issues of access and inclusion that parents raised.

Parent Survey: The Parent Survey was a statewide survey of parents and children aged 0-18 years with diagnosed special needs (enrolled in Maine Care - Katie Beckett and Title V eligibility groups - and Child Development Services early intervention caseloads). Questions focused on child care utilization and work experiences in relation to children with special needs.

Researchers interested in information about the qualitative data should contact the Child Care and Children with Special Needs Project Web site.

Part C of the Individuals with Disabilities Education Act authorizes states, with the incentive of federal financial support, to create Early Intervention (EI) systems, which is a primary source of rehabilitation (e.g., physical, occupational, and speech therapy) services for infants and toddlers with, or at risk for, developmental delays. Having worked with two EI Colorado (EI-CO) programs that employed electronic documentation, the researchers sought to leverage their electronic administrative data in order to examine social disparities in EI service use, including specific rehabilitation services.

The dataset for this data archiving project was generated in collaboration with a large, urban EI program in Colorado, a community partner for an NIH/NCMRR R03 study. This academic-community research partnership provided researchers with access to an urban EI program's electronic administrative database; The researchers' goal was to make these data available for further EI research. Therefore, a database was created and a number of variables were derived that could be of importance to EI stakeholders when conducting clinical queries for quality improvement. Examples of derived variables include EI service use intensity (i.e., hours per month) for all EI services, as well as discipline-specific (e.g., physical or occupational therapy) service use. The researchers obtained permission from the partnering EI agency to archive their EI program data through this project.

The dataset included as part of this collection includes 2045 cases for 44 variables; demographic variables include: race, ethnicity, language, sex, age, and developmental condition type.

The Individuals with Disabilities Education Act authorizes states to create early intervention (EI) programming to provide developmental and therapeutic services to infants and toddlers with a developmental condition; EI programs are mandated to report on child and family outcomes for purposes of accountability and quality improvement. For both purposes, there is critical need for research evidence on the adequacy of EI services. The researchers for this study partnered with a large urban EI program in Colorado that had recently transitioned to electronic data capture and was implementing a statewide initiative to facilitate function-focused care with individual families and paired collected electronic patient-reported outcomes (e-PRO) data with EI administrative data on child and family characteristics and service use to more fully examine EI service adequacy relative to patient-important outcomes.

This study collected information from Young Children's Participation and Environment Measure (YC-PEM e-PRO) on home, environment, and community participation, involvement, and desired change. Measurements were also collected from the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT e-PRO) on mobility, social cognitive, and daily activities domains. The Child Outcomes Summary (COS) was used to capture functional performance related to having positive social relationships, acquiring and using knowledge and skills, and taking appropriate action to meet needs. Early Intervention Service Use measured EI intensity, whether child received specific services including physical therapy (PT), occupational therapy (OT), speech therapy (ST), psychology, or developmental intervention (DI), and the total number of service hours received within each discipline. Demographic variables include reasons child received EI services, number of developmental delay conditions, age, race, and ethnicity; as well as caregiver's education, employment, number of children at home, income, and insurance type.

The Language Development of Non-verbal Children Age 3 Years through 7 Years in the Kansas Metro Area is one of the three projects in the Communication of People with MR, 2006 to 2012 Series, which focuses on identifying participant variables that predict success in increasing communication skills of individual with intellectual disabilities. Data for Dataset 1 of this study were collected to illustrate how acquisition of symbolic communication using Voice Output Communication Aid (VOCA) affects the development of successful communication exchanges. For the data collection of Dataset 1, children were recruited by contacting school districts in and near the Kansas City metropolitan area, specifically, in Topeka, Kansas, and Wichita, Kansas. Teachers and speech-language pathologists were asked to nominate any children meeting specific criteria. The 93 children who were enrolled were administered the Mullen Scales of Early Learning and the Preschool Language Scale. A structured play assessment was also administered.

Subsequently, data for Dataset 2 was collected to analyze and compare 19 Spanish-speaking children to the original sample. Both data files contain the results of Complexity of Communication Scale, a measure developed by the Communication of People with MR project.

Overview

The North Carolina Integrated Data for Researchers (NCIDR, pronounced "Insider") was funded to develop a robust research data warehouse for storing merged data from four different publicly-funded sources in North Carolina. Community Care of North Carolina maintains this unique database on behalf of the North Carolina Department of Health and Human Services, and facilitates requests for access to integrated behavioral health services data for research purposes. This expanded data set has great value to researchers in North Carolina and elsewhere. The NCIDR warehouse is a unique resource for obtaining the most complete picture of the health services delivered to people with severe mental illness in North Carolina. Few examples of such an integrated warehouse exist anywhere else, and NCIDR makes it possible for researchers and epidemiologists to conduct comparative effectiveness research related to people with these conditions.

The merged data sources include:

• Medicaid claims and enrollment data for nearly 1 million individuals with MH, DD and SA diagnoses.
• IPRS (Integrated Payment and Reporting System) -- covers primarily outpatient mental health services for people that do not qualify for Medicaid (approximately 250,000 individuals).
• HEARTS (Healthcare Enterprise Accounts Receivable Tracking System) -- documents services delivered by inpatient State Mental Health facilities (approximately 25,000 individuals).
• Piedmont Behavioral Health (Medicaid waiver) -- behavioral health encounter data from Medicaid's capitated arrangement in five counties (approximately 25,000 individuals).

Data are available for four state fiscal years, 2008 through 2011 (7/1/2007--6/30/2011). Each year has three data sets (claims, client, provider) in addition to multiple lookup tables with definitions. Population includes any Medicaid client with a claim that contains any MH, DD or SA (290xx through 319xx) diagnosis at least once in the four year time period, plus all clients appearing in the other 3 data sources. Requests will need to specify required time periods and clearly define the population being studied. Note that individuals dually enrolled with Medicare during months in which they are dually enrolled are excluded.

The data available for future use will include a claims file, a client file, a provider file and multiple lookup files. The claims file contains approximately 83 columns including 30 columns for diagnosis codes. The client file is approximately 78 columns which displays 12 columns each (one for each month in the SFY) for eligibility, enrollment, assigned network, primary care physician and dual status indicator. There are 5 columns in the Provider file. The lookup file will contain tables for every code that requires a description. The data will be parsed into individual state fiscal years.

Data Access

These data are not available from ICPSR. The process for requesting access to the integrated data is detailed on the NCIDR Web site, specifically the Request Process Overview page. Researchers interested in requesting access are strongly encouraged to contact the Director of Evaluation at [email protected] to discuss his/her intent to submit a Request Form. Some may also need to complete the Data Use Agreement if requesting data that are not completely de-identified.

Although IRB approval must be documented prior to release of data, NCIDR will accept applications with conditional IRB approval and researchers may discuss projects with the Director of Evaluation at any stage of development. A Research Oversight Committee (ROC) that includes stake holders from the NC Department of Health and Human Services (DHHS), the NC Division of Medical Assistance (DMA), the NC Division of State Operated Healthcare Facilities (DSOHF), the NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services (DMHDDSAS), the NC Office of Rural Health and Community Care (ORHCC), the Community Care of North Carolina (CCNC) and other community partners will review research requests and grant approval when applicable. Once approved, please note that CCNC must charge a nominal fee of $3,000 to cover costs related to the preparation and transmission of files to the researcher (additional charges may apply depending on the specific programming needs).

This collection includes qualitative data files from two parts of the same study that examined the barriers to autism care for Latino children in Oregon.

• Part 1: The research team sought to describe community, family, and health care system barriers to diagnosing autism spectrum disorders (ASD) in Latino children. Five focus groups and four individual interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process.
• Part 2: The research team sought to assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis. Five focus groups and four individual interviews were conducted with 30 parents of typically developing Latino children. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son's behaviors to the time he receives an ASD diagnosis.

This study examined how U.S. political leaders publicly framed disability during calendar year 2025, using a systematic discourse analysis of public statements and federal legislation. It also examined how this discourse was reflected in federal education policy, including statements by the Secretary of Education and education-related bills.

The study analyzed 121 public statements about people with disabilities made by White House and Cabinet officials, and 32 federal bills introduced in 2025 that could affect the rights, services, or educational opportunities of individuals with disabilities. Statements were identified through a two-stage process that combined a custom Python-based web-scraping tool, which extracted verbatim, attributed quotations from news articles, press releases, interview transcripts, official speeches, and social media posts using the OpenAI GPT-4 API, with manual verification searches conducted in ChatGPT Plus and Perplexity AI Pro. Federal bills were identified through Congress.gov. All statements were reviewed by the authors to confirm accuracy, attribution, and date. Each statement and bill was independently scored by two human coders and by GPT-4 using an author-developed four-point rubric grounded in the social and human rights models of disability, ranging from 1 (dehumanizing) to 4 (affirming).

The data contain one record per statement, including the speaker's name and title, date, verbatim quotation, source, context, an analysis of the framing, a score from 1 (dehumanizing) to 4 (affirming), and the rationale for the score. The bills data are available on the project website and are not included in this deposit.

The study was approved by the university Institutional Review Board (March 2025) and was preregistered on the Open Science Framework (https://osf.io/hbfe5/).