CFS Staff Serve on Coalition That Releases New Study Identifying Service Gaps Among Families of Children with Special Needs in Hillsborough County
*Reprinted With Permission

Did you know that an estimated one in five households with children in Hillsborough County has a child with a disability or other special needs? A new study entitled “An Analysis of Community- Based Services and Supports for Children and Young Adults with Special Needs in Hillsborough County” integrates key prevalence figures with reports from over 650 families, young adults, and service providers to provide a comprehensive assessment of the needs of approximately 45,000 children and young adults with special needs who live in Hillsborough County. The publication of the findings marks the completion of the first phase of an ambitious community initiative to improve the provision and delivery of services for these young people and their families.

The project is the result of a grassroots effort by a group of parents who realized that empirical evidence documenting limitations of the current service system was needed in order to leverage funding and support for change. A coalition of families, service providers, educators, child advocates, and community leaders – which became known as the Hillsborough Coalition for Children and Youth with Special Needs – worked together with a principal investigator from the University of South Florida’s College of Education to guide the analysis in a participatory action research approach. CFS Chair Bob Friedman, and Jean Caldicott, CARD-USF Resource Librarian, served on the coalition.

A unique aspect of the analysis is the examination of services and supports for the broad spectrum of ages and disabilities that defines the special needs population. The study encompassed individuals from birth to 24 years in Hillsborough County who were identified as having or as being at increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also required health and related services beyond that required by the general population of children and young adults.

Researchers explored a wide array of services and supports for these children and their families, including health care services, insurance coverage, education services, childcare, care coordination, recreation, social support, inclusion, transportation, transition, independent living, and employment. Particular attention was given to quantifying the type and level of services utilized, assessing satisfaction with current services and supports, and identifying critical service gaps. In addition, in-depth interviews with 14 parents provide a rich description of the challenges that families face in raising a child with a disability or other special needs. This section of the study is likely to be particularly interesting to individuals who are not familiar with the experiences of the special needs community.

An important result of the study was the identification of the most frequently encountered service gaps among families in Hillsborough County. These ten broad areas include: 1) developmental screening and assessment, 2) access to information, 3) deficiencies in public school education, 4) care coordination, 5) childcare, out of-school care, and respite, 6) recreational and social opportunities, 7) mental and behavioral health, 8) opportunities for employment, 9) health care transition, and 10) transportation.

The second phase of the project will focus on the development of community action plans to address these specific areas of need. All community members are invited to contribute their ideas on ways to improve services and supports. If you would like to participate in planning activities, please contact Janet Hess (813-653-3279 or hess@tampabay.rr.com). If you are unable to attend planning meetings but would like to submit your ideas, please email them to cwsn@tampabay.rr.com.

Copies of the full report, executive summary, data collection instruments, and other project documents can downloaded from the project Web site at http://web.tampabay.rr.com/cwsn. Bound copies of the full report and summary of findings are also available at the Children’s Board, (813) 229-2884, or visit http://www.childrensboard.org/ analysisreports.html. For questions regarding the study, please contact Dr. Linda Raffaele Mendez (813-974-1255 or raffaele@tempest.coedu.usf.edu) or Janet Hess.

* The January - March, 2004 • CARD-USF Quarterly

The Department of Child and Family Studies (CFS) is a department of the Louis de la Parte Florida Mental Health Institute, University of South Florida. The faculty and staff of CFS are committed to enhancing the development, mental health and well-being of children and families through leadership in integrating research, theory & practice.