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Council Research Reports

The Council funds, conducts and/or participates in research studies where information and data collected can be used to impact systems change and best practices.

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The Florida Developmental Disabilities Council is the granting agent for research-based, innovative, sustainable solutions that address the critical needs and priorities of individuals with intellectual and developmental disabilities and their families. For nearly 50 years, the Council has leveraged nearly 4 million federally appropriated dollars annually through the Developmental Disabilities Act.

Access to Services Through Knowledge (ASK) Research Project Findings Report

The National Association for the Dually Diagnosed conducted a research study designed to identify key information, community resources, and services that individuals with intellectual and developmental disabilities need to access throughout their lifespan. Specifically, this project investigated families’ perspectives on identifying I/DD resources. 

View the Access to Services Through Knowledge (ASK) Research Project Final Research Study Findings Report

Addressing the Behavior Therapist Shortage Final Report

The University of Florida and University of Miami conducted a year-long study on the status of behavior therapists across Florida.  Factors that are impacting the shortage of providers and recommendations to increase the number of personnel and improve the quality of people providing services to individuals with challenging behavior are provided.  

View the Addressing the Behavior Therapist Shortage Final Report

Aging Generations' Expectations in Developmental Disabilities

The purpose of the aging caregivers’ initiative, Aging Generations’ Expectations in Developmental Disability (AGEDD), is to address the lack of appropriate supports and services for older family caregivers and their aging adults with intellectual and/or developmental disabilities (I/DD).  This report will provide a background of the aging and developmental disabilities systems in Florida.  Since both systems have different funding streams and infrastructures, the task will be to find components that intersect in a positive way to support a new generation of older persons with I/DD and their aging caregivers.  These Florida residents require the same sorts of home-and community-based, long-term supports and services that have been the hallmark of the aging network for several years.

View the Aging Generations’ Expectations in Developmental Disabilities

Black*-African American ASD Identification Research Expansion Project

The Florida Atlantic Center for Autism and Related Disabilities expanded their work exploring the process by which Black* children are diagnosed with autism spectrum disorder to include Palm Beach, Broward, Citrus, Flagler, Gadsden, Gulf, Hillsborough, Lake, Lee, Marion, Monroe, Orange, and St. Johns counties and the Treasure Coast.  The insights gained from this study were used to provide better support to parents, ensure accurate and timely identification, and develop training programs for parents, educators, and healthcare providers to enhance the identification process.

View the Black*-African ASD Reports
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Competencies for Case Management Professionals Supporting People with Intellectual and Developmental Disabilities: An Environmental Scan

Mathematica, Inc., under contract with the Florida Developmental Disabilities Council, Inc., conducted an environmental scan of articles from peer reviewed journals, government reports, and websites on the topic of case management and other support coordination models within the I/DD field as well as those for other relevant populations. This report served as the basis for the development of a suite of tools to assess case management that can be used by individuals with I/DD, family members and caregivers, case managers, and those supervising case managers. 

View the Competencies for Case Management Environmental Report

 

Dually Diagnosed Research Study

The National Association for the Dually Diagnosed conducted a research study to identify the needs of individuals with intellectual and developmental disabilities with co-occurring mental health conditions (i.e., dual diagnosis). The research study included an environmental scan, a literature review of research on mental illness in persons with I/DD, and mixed-methods procedures to gather information about people with I/DD, their families, and service systems that interact with them. The research study resulted in a state strategic plan to provide direction for services and supports to meet the needs of this complex population.

View the Dual Diagnosis Research Study
View the Dual Diagnosis Strategic Plan

Measuring Service Quality: An Environmental Scan

Mathematica, Inc., under contract with the Florida Developmental Disabilities Council, Inc., conducted a review of measures currently being used to assess services and programs being provided to individuals with I/DD.  These included national, Florida-specific, and local measures that were relevant to a variety of service types.  Specific measures for supported employment, residential, and day training programs were investigated.  The measures found are described in this environmental scan. 

View the Measuring Service Quality Environmental Report

Researching Provider Solutions for People with Intellectual and Developmental Disabilities: An Environmental Scan

Mathematica, Inc., under contract with the Florida Developmental Disabilities Council, Inc., conducted a review of articles in peer reviewed journals, government reports, and relevant websites to locate information about the shortage of people providing support to individuals with I/DD and how those shortages are being addressed.  This summary includes information about the identified challenges and solutions currently being implemented.

View the Researching Provider Solutions Environmental Report

Researching Provider Solutions for People with Intellectual and Developmental Disabilities: Final Study Report

Mathematica, Inc. completed a mixed-methods research study to gather information about the way people in Florida who are not receiving Home- and Community-Based Services access personal supports from direct care workers (DCWs).  Individuals with I/DD and family members who were either receiving services through the Consumer-Directed-Care Plus program, those pre-registered with the Agency for Persons with Disabilities (APD) who were not yet receiving services, and those unknown to APD were surveyed to understand how they recruited and retained DCWs. A smaller group participated in interviews to gain a fuller understanding of the methods used and the challenges faced in finding and retaining these workers. Findings were described and implications for policy and practice were provided in the report.  

View the Researching Provider Solutions Final Study Report

State of the State

The State of the States in Intellectual and Developmental Disabilities Project is a national longitudinal comparative study of financial and programmatic trends in spending on supports and services for people with IDD in the United States. It is a Longitudinal Data Project of National Significance and receives funding from the Administration on Community Living.

View the State of the State Report

State of Florida Comprehensive Review and Analysis 2021

WellFlorida Council, Inc. was engaged in an 18-month study on behalf of the Council to conduct a comprehensive review and analysis of funding, services and resources for persons with intellectual and developmental disabilities and their families.  The purpose was to assist the Council in building its 5-year state plan (2022-2026) required under the Developmental and Disabilities Bill of Rights Act of 2000 through the Administration for Community Living.  The full analysis of primary and secondary data can be reviewed here.

View the State of Florida Comprehensive Review and Analysis 2021 Report

State of Florida Technical Appendix Data 2021

Secondary data collected in the development of the 2021 Comprehensive Review and Analysis is reflected in this report.

View the Technical Appendix Data Report

Strive to Thrive: Researching Aging Caregiving Families Project- Environmental Scan Report

The Florida Developmental Disabilities Council contracted with the University of Illinois Chicago for a research project, Strive to Thrive. This project aims to understand, from the perspective of families of people with intellectual and developmental disabilities (IDD) living at home in Florida, what can help advance the person with IDD and the whole family to thrive. The purpose of this environmental scan is to inform the development of a survey and focus group protocols that will be used to gather information and experiences of aging families of adults with IDD in Florida to understand what helps them thrive. The project proposes to learn about what helps families move on the continuum beyond surviving to truly having a fulfilling life and thriving in their communities.

View the Strive to Thrive: Researching Aging Caregiving Families Project- Environmental Scan Report

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