Protect Disability Network Digital Toolkit

The President's new proposed budget would eliminate funding for programs that support people with disabilities, including the WVU CED.

Wednesday, June 4, 2025

Access the full version of this toolkit.

What's at Stake: Facts on Proposed Funding Cuts and How to Talk About Them

The U.S. President’s proposed budget would eliminate funding for programs listed below that support individuals with disabilities. These funds are essential for providing critical services to West Virginians with disabilities. Without this funding, many of these services will no longer be available.

Eliminated from National Budget / Associated WV Programs:

• University Centers for Excellence in Developmental Disabilities (UCEDDs) / WVU CED
• National Institute of Disability, Independent Living and Rehabilitation Research (NIDLRR)
• Developmental Disabilities Protection and Advocacy / Disability Rights of West Virginia
• Leadership and Education in Neurodevelopmental Disabilities / WV LEND
• Primary Care Training and Enhancement / WV Primary Care Training grant through the WVU CED that is training medical providers and students to better serve patients with disabilities and patients who have English as a second language (ESL).

It is wonderful to see the inclusion of select disability programming in the President's federal budget, such as funding for the Developmental Disabilities (DD) Council, which underscores a commitment to supporting individuals with disabilities and promoting their independence and community integration. However, while this progress is commendable, it is equally important to recognize that the elimination of other vital programs hampers the availability of comprehensive, complementary services essential for addressing the needs of individuals with disabilities. These programs are not merely Diversity, Equity, and Inclusion (DEI) measures; they are separate and essential services that directly support the well-being and full participation of people with disabilities. Restoring and maintaining a broader range of services ensures a more holistic approach, providing individuals with disabilities access to the resources they need for full participation in society, and fostering opportunities for them in West Virginia.

---

UCEDD Key Facts:

• What is a UCEDD? (plain language) There is at least one University Center in every state that supports people with disabilities through education, research and service.
• There are 62 University Centers for Excellence in Developmental Disabilities (UCEDDs) in the U.S. West Virginia has one – the WVU CED.
• As a network, the UCEDDs provide specialized, much needed services to millions of people helping them live well with their disability – last year alone these sites served well over 1.3 million individuals – that is nearly 20,000 people per Center.

WVU CED Key Facts:

• 37% (1 in 3) adults in West Virginia are living with a disability (according to the CDC).
• 21% of the state’s population are aged 65 and older, many of whom are at risk of developing new or increasing care needs.
• 80% of our counties (44 out of 55) have full or partial designation as health professional shortage areas. LEND programs prepare the healthcare workforce to improve the health of infants, children and adolescents with disabilities. 
• WVU CED impact last year:
  • 435,818 peple received services
  • 6,395 peple received clinical services
  • 15,331 peple trained
  • 61 research activities
  • 113,347 disability related resurces were disseminated

What would happen if the WVU CED and other UCEDDs were defunded?

• Not having the WVU CED funding would completely remove all services provided by the Center as they are free to families and providers (through training and technical assistance) because of the grant funding.
• More than $10 million in additional money leveraged by the Center because of its funding would be lost as well.

---

What can you do?

Calls and letters to congress

Congressional staff keep track of the number of calls and emails they receive asking the representative to oppose or support issues. You can call or email your members of Congress and senators using the sample letter and script in this digital toolkit.

Share stories and other content in press and social media

Your story is powerful, and storytelling is the most effective way to move legislators who are considering cuts and harms to UCEDDs and other disability programs. You can make it personal - be specific and focus on what the potential cuts mean to your life and the lives of your loved ones. Do they mean you get the support you need to stay in your home? Do they mean you get coverage for your health care needs and receive access to treatment? Don’t be afraid to be emotional about how hard it is to give and receive care because of our patchwork system, and how much worse it would be without the WVU CED, Disability Rights of West Virginia and other agencies facing elimination.

You can share these stories on social media, with your Congressional representatives, with your state representatives and governor, in local press through op-eds, letters to the editor and interviews with reporters interested in health care. Share as broadly and often as you feel comfortable.

Learn more and submit your story to the WVU CED.

---

Digital Tools and Samples

Talking Points and Script

WVU Center for Excellence in Disabilities

Phone or Email Script – for staff use

Staff members whose positions are not funded by state contracts or other sources that restrict advocacy efforts may use this information to customize their own emails or phone calls, sharing perspectives from their professional experience in the field.

Subject: Urgent: Protect Funding for Disability Services in WV

Dear (legislator name),

My name is [XXX], and I am [your title] at the West Virginia University Center for Excellence in Disabilities (WVU CED). Several documents have been shared that outline the potential elimination of UCEDDs (like the WVU CED) as well as most disability network partners. As a constituent and a professional who works on (quick descriptor of your work at the WVU CED) I am deeply concerned about the immeasurable harm to people with disabilities and their families this would have on within our state and throughout the country.

These initial budget eliminations include the following services and support programs:

University Centers for Excellence in Developmental Disabilities (UCEDDs), Autism and other disorders (LENDs and Behavior Pediatric training programs), Primary Care and Training: Patient Care and Individuals with Disabilities, and Developmental Disabilities Protection and Advocacy.

Specific impacts for West Virginia:

• 96 jobs lost across the state due to UCEDD funding elimination
• $11.2 million in additional leveraged funds lost, directly affecting services for approximately 360,000 disabled West Virginians
• Diminished access to care, placing more strain on families and communities

West Virginia faces significant disability challenges, with:

• 37% (1 in 3) adults in the state living with a disability (according to the CDC)
• 21% of the population aged 65 and older, many of whom are at risk of developing new or increasing care needs
• 19.5% disability rate for the total population of the state, which leads the country (according to U.S. Census Bureau)
• The WVU CED serves individuals of all ages, including aging adults with disabilities, by providing critical programs that support their needs.

The national Developmental Disability Network is made up of three partners: University Centers for Excellence in Developmental Disabilities (UCEDDs), State Developmental Disabilities Councils (DD Councils), and State Protection and Advocacy (P&As). These three agencies have led efforts to improve the lives of West Virginians with disabilities for nearly 50 years.

Last year alone UCEDDs served well over 1.3 million people nationwide. Eliminating these programs would sever a vital link to the services, research, and training that families, local governments, and community providers rely on to serve individuals with disabilities.

I urge you to consider the profound impact these cuts would have on our state. Thank you for your attention to this critical issue.

Sincerely,

[Your Name]
[Your Title]
West Virginia University Center for Excellence in Disabilities (WVU CED)

---

Talking Points and Script

WVU Center for Excellence in Disabilities

Phone or Email Script – for personal use

Individuals may use this information to personalize their emails or phone calls—using personal, non-work email accounts—to share perspectives based on their own experiences as citizens of West Virginia.

Subject: Urgent: Protect Funding for Disability Services in WV

Dear [legislator name],

My name is [XXX], and I am a concerned citizen of West Virginia. Several documents have been shared that outline the elimination of UCEDDs (like the WVU CED) and other vital services, training and research that benefits individuals with disabilities in West Virginia. I am deeply concerned about the immeasurable harm to people with disabilities and their families this would have on our state and throughout our country.

These initial budget eliminations include the following services and support programs:

University Centers for Excellence in Developmental Disabilities (UCEDDs), Autism and other disorders (LENDs and Behavior Pediatric training programs), Primary Care and Training: Patient Care and Individuals with Disabilities, and Developmental Disabilities Protection and Advocacy.

In West Virginia, the impact of these cuts would be severe:

• 96 jobs lost across the state due to the elimination of UCEDD funding
• $11.2 million in leveraged funds lost, reducing services for approximately 360,000 disabled West Virginians
• Diminished access to care, creating more strain on families and communities

This is especially concerning given the high rates of disability in our state:

• 37% (1 in 3) adults in West Virginia have a disability (according to the CDC)
• 21% of our state’s population is 65 years or older, many of whom face increasing care needs
• 19.5% disability rate for the total population of the state, which leads the country (according to U.S. Census Bureau)

The WVU CED provides vital programs that support individuals across their lifespan, including aging adults with disabilities. The national Developmental Disability Network, made up of UCEDDs, and Protection and Advocacy Systems (P&As), has been improving the lives of individuals with disabilities for nearly 50 years.

If these programs are eliminated, individuals with disabilities, their families, and community providers will lose access to essential research, services, and training.

I urge you to consider the tremendous impact these cuts would have on West Virginians. Thank you for your attention to this critical issue.

Sincerely,
[Your Name]
[Your Address]
[Your Contact Information]