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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.