< Back to BADN Page

By The Numbers

The data below provides a snapshot of the state’s population of people with I/DD and older Americans, Home and Community Based Services (HCBS) Waitlists, and the collective impact of the BADN collaboration.

State Disability Prevalence Date

Est Total State Disability Population (%): 
13.7%

Est Total State Disability Population (#):   
3,064,600

Est State Prevalence of Developmental Disabilities (%): 

7.20%

State Waiting Lists for Medicaid HCBS

Number of People with IDD on Medicaid HCBS Waitlist:
22,621

Number of People with Autism on Medicaid HCBS Waitlist:
N/A

Number of People who are Seniors and/or have Physical Disabilities on Medicaid HCBS Waitlist:
54,502

Total Number of People in State on Medicaid HCBS Waitlist:
77,123

State Aging & Disability Network

Number of Area Agencies on Aging/Aging & Disability Resource Centers: 
11

Number of Centers for Independent Living: 
15

Number of Developmental Disability Regions: 
6

CITATION FOR COLUMN 1 DATA: The percentage of non-institutionalized males or females with any disability (all ages; 65+), cognitive disability (all ages; 65+), all races, regardless of ethnicity, across all levels of education in the United States. American Community Survey, 2023. Click here to view the source.
CITATION FOR COLUMN 1 DATA: Centers for Disease Control and Prevention. “Developmental Disability, Estimated Prevalence of Developmental Delay, All States, 2021-22. National Environmental Public Health Tracking Network. Click here to view the source.

CITATION FOR COLUMN 2 DATA: Kaiser Family Foundation. “Number of People Waiting for Medicaid Home Care (HCBS), by Target Population and Whether States Screen for Eligibility, 2024”. Click here to view the source.

*Not all state data is available or is N/A

Projects

Image of an open book with lines indicating text, accompanied by a magnifying glass placed over it, symbolizing reading or research.

Goal 1

Perform an environmental scan of the literature regarding families of people with I/DD who are thriving.

A teal outline of a checklist on a piece of paper with several checkboxes, along with a pencil positioned next to it, indicating tasks to be completed.

Goal 2

Develop a comprehensive survey tool to use with families of people with I/DD to capture what helps them thrive.

A teal outline of four simplified human figures gathered together with a light bulb symbol above them, representing ideas, collaboration, or brainstorming.

Goal 3

Develop focus group protocols to use with adults with I/DD and family caregivers to understand what helps them thrive now and in the future.

A teal outline of a globe featuring multiple speech bubbles around it, symbolizing global communication or discussions.

Goal 4

Produce a translated version of the data collection instruments for Spanish-speaking families.

Image of a folder with multiple sheets of paper inside, symbolizing document organization or filing.

Goal 5

Collect data from over 200 participants, including aging family caregivers and adults with I/DD, on what helps them thrive currently and in the future.

Image illustrating a magnifying glass over various data elements, including a graph and text, representing data analysis or research.

Goal 6

Analyze survey data to inform recommendations for future initiatives to support families of people with I/DD to thrive.

Image of a hand holding a gear, light bulb, and dollar sign, symbolizing the concepts of innovation, tools, and financial investment.

Goal 7

Use survey findings to inform the development of resources to support aging families of people with IDD as they strive to thrive, which we expect to integrate with the outcome of our research for the DD Council’s next 5-year plan.

Highlights/Milestones Achieved

The University of Illinois – Chicago completed the environmental scan of the literature.  Using that literature, it developed a mixed-methods research study including survey and focus group protocols. The purpose of the research was to understand, from the perspective of families of people with I/DD living at home in Florida, what can help advance the person with I/DD and the whole family to thrive currently and in the future.

Focus group interviews were completed with 17 people with I/DD and 21 aging family caregivers.  In addition, a survey was completed with 198 respondents.

From the research, the State Alliance Team (SAT) discovered seven key findings:

    1. Social support and participation increased thriving.
    2. Family caregivers reported decreased thriving.
    3. Family members with I/DD living outside the home led to higher thriving for families.
    4. Caregivers of adults with I/DD had increased thriving over those caring for children.
    5. Behavioral challenges in the person with I/DD significantly reduced thriving.
    6. Personal strengths can be a key part of thriving.
    7. Caregivers with no unmet service needs had increased thriving compared to those with unmet service needs.

These results led to 7 specific recommendations from the research:

    1. Strengthen social support and social participation opportunities.
    2. Provide gender-sensitive support strategies.
    3. Develop long-term planning and residential transition supports.
    4. Target supports based on the life stage of the person with I/DD.
    5. Support caregivers managing challenging behaviors.
    6. Leverage and cultivate personal strengths and resilience.
    7. Expand and ensure access to formal supports.

Key Resources Developed

Key Quote

In relation to navigating the maze of services, J., a Family Caregiver Participant, said, “…it’s like swimming in the dark…”

State Co-Leads

Christine Reeve, PhD, BCDA-D

Program Director

Florida Developmental Disabilities

State Alliance Teams

Valerie Breen

Executive Director

Florida Developmental Disabilities Council

 

Kira Houge

Chief of Community & Support Services

Florida Department of Elder Affairs

 

Ann Dalton

Bureau Chief of Medicaid Policy

Agency for Health Care Administration

 

Damian P. Gregory

Co-Founder and CEO

Nothing About Us Without Us, LLC

 

Yolanda Herrera

Family Member and DD Council Member

 

Jean Sherman, Ed.D., R.N.

Mailman Center UCEDD University of Miami School of Medicine Representative; Family Member

 

Arizona Jenkins

Self-Advocate; Council Member

 

Lauren Modawell

Self-Advocate; Council Member

 

Michael Sayih

Self-Advocate; Council Member

Christine Reeve, PhD, BCDA-D

Program Director

Florida Developmental Disabilities

 

Susan Nipper

Chief of Program Development, Compliance, and Policy

Agency for Persons with Disabilities

 

Darrell Drummond

CEO Retired

Council on Aging of St. Lucie, Inc.

 

Dèan E. Gregory-Stewart

Family Member

 

Mary Jo McKay

Nutrition and Wellness Manager

Hillsborough County Aging Services

 

Ely Hagan

Parent; Council Member

 

Danielle McGill

Self-Advocate; Council Member

Aging Organization

 

Carla Mercer

Family Member; Council Member

 

Victoria Zepp

Parent; Council Member

< Back to BADN Page