STATE COUNCILS ON 

DEVELOPMENTAL 

DISABILITIES (DD COUNCILS)

A guiding force for positive, life-altering change for people 

with intellectual and developmental disabilities (I/DD)

To achieve the vision of the DD Act, state DD Councils use federal funding to:

CREATE 

partnerships, collaborations, 

innovative programs, and 

equal opportunities to 

improve the daily lives of 

people with I/DD.

SPARK 

community change by 

bringing together people 

and partners to create 

equity in education, health, 

employment, and life.

EMPOWER 

self-advocates and 

family leaders, influence law 

and policy, and educate 

and protect people 

with I/DD. 

EDUCATE 

decision-makers using 

research and lived 

experiences to improve 

the lives of people 

with I/DD.

60% or more of the members of each DD Council must be people 

with I/DD or close family members. Councils are founded on 

the principle that those with lived experience should always be included in 

conversations to find and foster solutions.

PROUD TO BE A CATALYST FOR POSITIVE CHANGE

DD Councils’ work removes barriers and increases opportunities for people with I/DD so they can:

● Live — and fully participate — in the community

● Become leaders and self-advocates, creating 

their own paths and helping others 

● Complete secondary (grades 6-12) and 

postsecondary (after grade 12) education 

● Access health care to live longer, healthier lives 

● Find and succeed in jobs that fit their individual 

interests and goals

● Stay connected and safe during emergencies

● Enjoy recreational and social activities

Their work also involves educating the public on how including people with I/DD has a positive social and 

economic impact on communities.

56

STRONG 

56 DD Councils across the United States and its territories are 

part of the DD Network — a collaborative group of organizations and 

advocates working to serve and empower people with I/DD. 
In 1977, 84% of people with I/DD lived in institutional 

settings. Now, it’s less than 8% — thanks in part to the work 

of the DD Councils and their partners.1

1 The National Residential Information System (RISP)

➤ DD Councils helped integrated employment grow 17% from 2011 to 2018, and it’s still a top priority.2

2 The National Data Collection on Day and Employment Services 

for People with Developmental Disabilities

➤ 2.8 million people with lived experience with I/DD participate in DD Council activities today. 53,570 

of those are participating in advocacy to create change.3

3 DD Councils FY2020 Performance Measures, Individual and 

Family Advocacy (IFA) Measures

➤ 1,232 policies, procedures, statutes, and regulations were created or changed by DD Council efforts 

in one year alone.3

MEET DESI

Desi is a Wisconsin DD Council member from suburban Milwaukee. As a teen and 

young adult, she was told she needed the structure of working in a job specifically for 

people with I/DD — jobs that pay far less than minimum wage — and living in a group 

home, but she felt overly controlled and disrespected in those environments. Thanks 

to the Council’s advocacy efforts to change expectations and expand options for 

employment and community living, the Department of Health Services provided the support Desi needed 

to find her own apartment and a job in the community. She also successfully advocated to get therapy 

to help her self-regulate more effectively. Desi now lives on her own, with some help managing her 

finances, and shops for and cooks her own healthy meals. She is taking steps to build a career in helping 

people find housing. She credits living independently with improving her mental and physical health.

lving process to identify 

 the necessary change.

For Us (SUFU) program 

 

kee. 

was 

f a 

srespected, thanks to work 

ment of Health Services to 

yment and community living 

partment and her own job. 

lunteering with the local 

f building a career helping 

g independently with some 

 for and cooks her own 

cessfully advocated to get 

e more effectively. She 

with improving her mental 

8%

.1 

”

tate and 

ramped up to: 

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ns

llowed visits by 

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ed, and informed. 

ork with people with 

STAYING SAFE THROUGH COVID-19

DD Councils quickly pivoted and continue to work 

with public and private partners to:

➤ Create and share accurate information

in plain language and multiple languages, so 

people with I/DD can make informed decisions

➤ Advocate to prioritize vaccines and 

protective equipment for people with I/DD and 

those who support them

➤ Uphold civil rights guaranteed under law, 

such as visits by people who provide necessary 

support during hospitalizations and equal 

access to health care and education 

➤ Ensure access to home and community-based 

services and technology to stay connected and 

informed

➤ Train first responders to work with people 

with I/DD successfully and respectfully

“

We have begun to think of advocacy as more than just ‘speaking up for yourself’ but 

more of a problem-solving process to identify what you want to change in your life, the resources 

needed for this change, and creating the plan to make the necessary change.

A self-advocate graduate of Maine’s Speaking Up For Us (SUFU) program

”

August 2022

ACL is an operating division of the U.S. Department of 

Health and Human Services. Learn more at ACL.gov.