Protecting Programs that Support Inclusion and Participation

As Congress works to finalize a budget to keep the federal government open, the future of programs that support people with disabilities and their families is once again under discussion. Earlier this year, proposals surfaced to eliminate or reshape funding for several core initiatives. While current bills in both the House and Senate maintain funding, the debate highlights just how essential these programs are—and how decades of progress in inclusion and participation could be placed at risk.

University Centers for Excellence in Developmental Disabilities (UCEDDs)

For more than sixty years, UCEDDs have been steady partners in every state and territory. They provide family training, conduct autism evaluations, develop early intervention programs, and connect academic research with real-world practice in schools and communities. UCEDDs also serve as incubators for innovation, helping to shape services and supports that increase access and participation. Reducing their funding would not only weaken programs that families depend on but also cut off a critical pipeline of new research and best practices.

Protection and Advocacy Agencies (P&As)

While UCEDDs focus on training, services, and innovation, Protection and Advocacy agencies address the legal and civil rights side of disability inclusion. Created in the 1970s after widespread abuse and neglect of people with disabilities in institutions, P&As now exist in every state and territory. They work to ensure equal access to education, employment, housing, health care, and community life. These agencies provide legal advocacy when rights are denied, assist individuals facing barriers, and press for policy changes that expand inclusion. Without P&As, many people would have no recourse when excluded from essential opportunities or subjected to unsafe conditions.

Developmental Disabilities Councils (DD Councils)

Adding another layer of support, Developmental Disabilities Councils are distinctive because they are led by people with developmental disabilities and their family members. Present in every state and territory, DD Councils set priorities for funding, advocacy, and systems change. They help launch innovative programs, create leadership opportunities, and advance policies that increase independence and participation in community life. Without them, people with developmental disabilities would have fewer opportunities to shape the very policies that impact their daily lives.

What Does Systems Change Mean?

These three programs—UCEDDs, P&As, and DD Councils—are not only direct service providers; they are also engines of systems change. Systems change means addressing barriers at their root by changing rules, policies, and practices so inclusion is built into the system rather than something families must continually fight for.

Examples from States Across the Country

• Inclusive Education (New York): The New York State DD Council has supported projects introducing universal design for learning in classrooms. This approach helps teachers design lessons that work for all students, so children with and without disabilities can learn together.
• Work and Careers (New York): Programs linked to UCEDDs and DD Councils in New York have developed internships and apprenticeships that connect young adults with developmental disabilities to integrated employment opportunities.
• Health Care Access (New York): UCEDDs such as the Rose F. Kennedy Center at Albert Einstein College of Medicine have worked with local clinics to train medical providers, ensuring people with developmental disabilities receive respectful and consistent preventive care.
• Emergency Preparedness (New York): Protection and Advocacy agencies have worked with state and local officials to ensure emergency plans account for people with disabilities, leading to more accessible shelters, clearer communication, and safer evacuation planning.
• Community Living (Minnesota): The Minnesota DD Council has helped transition people from large institutions into community-based housing, allowing individuals with disabilities to live in their own homes and neighborhoods.
• Transportation Access (Colorado): The Colorado DD Council has worked to make public transportation more accessible, improving opportunities for people with disabilities to reach jobs, schools, and civic spaces.
• Voting Rights (Georgia): Protection and Advocacy agencies in Georgia have addressed barriers in polling places, helping ensure voters with disabilities can cast ballots privately and independently.
• Cultural Inclusion (California): UCEDDs in California have collaborated with immigrant and bilingual communities to create culturally and linguistically appropriate services, ensuring that families from diverse backgrounds can access disability supports.
• Technology Access (Iowa): The Iowa DD Council has supported programs that expand access to assistive technology, helping people with disabilities communicate, work, and participate more fully in community life.

These examples illustrate how systems change works in practice. Rather than fixing problems one case at a time, it reshapes institutions and policies so barriers are removed for everyone who comes next. Over time, these changes build stronger communities where inclusion and participation are the expectation.

The Individuals with Disabilities Education Act (IDEA)

Alongside UCEDDs, P&As, and DD Councils, IDEA is a cornerstone of inclusion. IDEA guarantees that students with disabilities can learn alongside their peers with the supports they need. It is not only an education law but also a civil rights law, designed to prevent exclusion and ensure equal opportunity in classrooms. Proposals that shift IDEA funding or weaken accountability risk undoing decades of progress, leaving students with fewer opportunities to participate fully in general education settings.

Ramifications of Cuts or Restructuring

If funding for UCEDDs, P&As, DD Councils, or IDEA were reduced or significantly restructured, the consequences would ripple across the country:

• Children and Families: Early intervention and specialized supports could be harder to access, delaying diagnoses and services at the most critical developmental stages. Families could be left without trusted guidance to navigate complex systems.
• Individuals with Disabilities: Without strong protections, students may have fewer opportunities for meaningful inclusion in classrooms, workers could encounter greater challenges in securing fair employment, and individuals might face new barriers in housing and health care. The result would be fewer pathways to full participation in community life.
• Communities: Local schools, service providers, and employers would lose access to resources and expertise that help build inclusive practices. Without that support, communities may struggle to create environments where people with disabilities can participate fully in education, employment, and civic life.
• Nationwide: The long-term costs—educational, social, and economic—would rise as preventive supports give way to more intensive, and often more expensive, interventions later in life.

Inclusive communities do not emerge by chance. They are built through sustained commitment and investment in the programs that protect rights, expand opportunities, and create the conditions for meaningful participation. UCEDDs, P&As, DD Councils, and IDEA together provide the infrastructure for equity. Without them, the risks of isolation and exclusion grow, and decades of progress could be undone.

Take Action

Lawmakers need to hear that these programs matter. You can:

• Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative
• Contact your U.S. Senators: https://www.senate.gov/senators/senators-contact.htm
• Reach all your elected officials in one place: https://www.usa.gov/elected-officials

A short, respectful message can carry weight. Share your experience as a constituent. Explain how disability programs have supported inclusion and participation in your community. Urge your representatives to protect funding for UCEDDs, Protection and Advocacy agencies, Developmental Disabilities Councils, and IDEA—and to pass a full-year budget that sustains these essential commitments.

Sample Letter 

Dear [Representative/Senator],

I am writing as your constituent to encourage you to continue supporting programs that are important to people with disabilities and their families. These include University Centers for Excellence in Developmental Disabilities, Protection and Advocacy agencies, Developmental Disabilities Councils, and the Individuals with Disabilities Education Act.

These programs provide practical, everyday benefits. University Centers connect research to schools and clinics, offering family training and guidance on evaluations such as autism assessments. Protection and Advocacy agencies assist when individuals encounter barriers to education, employment, housing, or health care. 

Developmental Disabilities Councils support initiatives that expand community living, employment opportunities, and leadership development. IDEA ensures that students with disabilities can learn in inclusive classrooms with the right supports in place.

Without consistent funding, families could lose timely access to early intervention, individuals might have fewer tools to resolve challenges in daily life, and schools could struggle to provide the resources needed for students with disabilities. These programs form the infrastructure that makes inclusion and participation possible.

I respectfully ask that you maintain strong funding for these programs in the upcoming budget and avoid changes that would reduce their effectiveness. Ensuring their stability helps protect access to education, employment, and community participation for people with disabilities across our state and the nation.

Thank you for considering this request.

Sincerely,
[Your Name]
[Your Address]

The work of building inclusive communities is ongoing. It is not guaranteed and it is never finished. It requires protecting the progress that has been made while continuing to invest in the structures that allow people with disabilities to learn, work, and contribute alongside their peers. UCEDDs, Protection and Advocacy agencies, Developmental Disabilities Councils, and IDEA are not just programs on a budget line; they are the backbone of a national commitment to equity and participation.

At this moment, Congress has an important opportunity to help ensure that commitment continues. By maintaining stable funding and avoiding changes that weaken these efforts, lawmakers can affirm that inclusion is not optional—it is a central part of community life. The decisions made in the months ahead will influence whether the next generation encounters greater opportunities for participation or renewed barriers to belonging.

Inclusive communities do not come together by chance. They grow when leaders, neighbors, and families work together to make participation possible—and when the programs that support this vision are protected for the future. Each of us has a role to play in carrying this work forward, whether by speaking up, sharing experiences, or simply reminding decision-makers that inclusion benefits everyone.

The question now is whether we will continue to build on this foundation—or risk letting it erode.

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