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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 (%): 
13.3%

Est Total State Disability Population (#):   
422,400

Est State Prevalence of Developmental Disabilities (%): 

5.10%

State Waiting Lists for Medicaid HCBS

Number of People with IDD on Medicaid HCBS Waitlist:
7,147

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:
12,406

Total Number of People in State on Medicaid HCBS Waitlist:
24,286

State Aging & Disability Network

Number of Area Agencies on Aging/Aging & Disability Resource Centers: 
6

Number of Centers for Independent Living: 
6

Number of Developmental Disability Regions: 
4

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

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Goal 1

Provide outreach and resources on other options to guardianship in a way that everyone can understand.

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Goal 2

Improve communication with Iowans who are aging and people with disabilities by developing resources in clear and accessible language that everyone understands.

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Goal 3

Prioritize aging in the future DD Council state five-year plan.

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Goal 4

Provide education and outreach with multiple agencies that focus on aging and disability services, and work towards continued collaboration.

Highlights/Milestones Achieved

  • Engaged thought leaders and various stakeholders in the BADN State Alliance Team (SAT).
  • Developed accessible digital module training in clear language.
  • Developed an alternative to the guardianship handbook for self-advocates in clear language.
  • Conducted a pilot disability awareness training with Aging & Disability Resource Centers and have continued to work on cross-systems organizational cultural change.
  • Provided input to the Iowa Medicaid Application to make language accessible to adults with intellectual and developmental disabilities.
  • Provided input into a Managed Care Advocacy Handbook.

Key Resources Developed

State Co-Leads

Julie Bergeson

Executive Officer 2

Division of Aging and Disability Services, Health and Human Services

Brooke Lovelace

Executive Director

Iowa Developmental Disabilities Council

State Alliance Teams

Kristen Aller

Self-advocate

 

Roxanne Cogil

Executive Director

Epilepsy Foundation

 

Greg Fier

Olmstead Task Force Representative

 

Linda Hildreth

Executive Director

Iowa Association of Area Agencies on Aging

 

Tonya Heiman

Iowa Total Care

 

Catherine Johnson

Executive Director

Disabilities Rights Iowa

 

June Klien-Bacon

Brain Injury Alliance

 

Helen Mejia

National Federation of the Blind of Iowa

 

Krys Purscell

Executive Director

SILC

 

Stacie Speirs

Program Coordinator

Northeast Iowa Area Agency on Aging

 

Casey Wilkinson

Self-advocate

 

Gregory Zars

Deputy Director

Northeast Iowa Area Agency on Aging

Kimberly Baxter

Executive Officer 2

Family Well-Being and Protection

 

Anne Crotty

ADA Coordinator

Iowa Health and Human Services

 

Kay Fisk

Older Iowans Legislation

 

Kyra Hawley

Executive Officer 2

Division of Aging and Disability Services

 

Mike Hoenig

Program Coordinator

Iowa University Center for Excellence in Developmental Disabilities

 

Tracy Keninger

Program Director

Easter Seals

 

Latisha McGuire

Management Analyst 3

Iowa Medicaid

 

Caitlin Owens

Director

Iowa’s University Center for Excellence in Developmental Disabilities

 

Lisa Schneider

Executive Officer 1

Iowa Client Assistance Program

 

Jonathan Whitfield

Iowa Missionary & Educational Baptist State Convention and Affiliated Churches of Illinois and Nebraska

 

Lisa Yunek

Family Advocate

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