Tina Crook’s son suffered a brain injury from an infection 12 years ago. At the time, she knew little about how to connect with special needs services that provide resources for families like hers.
So Crook went it alone, quitting her job to become a full-time caregiver as her son relearned how to walk, talk and read.
“There were resources, but you had to search,” she said. “Sometimes you ended up down deep rabbit holes that didn't do you any good, but you just continued that search.”
It wasn’t until several years later that she discovered the West Virginia University Center for Excellence in Disabilities, or CED. Crook recalled buying her son a reader pen from eBay, a device that scans text on a page and speaks it out loud. She paid a little over $100 for the pen, but her son wouldn’t use it.
“Had I known about the [West Virginia Assistive Technology System] program through the CED, I could have went online to their Pay It Forward program and borrowed this device free of charge,” Crook said. “Then I would have realized, ‘Okay, this isn't something that's going to work for my child.’ And you know, that could have saved me a little over $100.”
She’s since started working for the CED as the lead parent network specialist for the Paths for Parents and Family to Family Health Information Center.
“I wanted to help parents,” Crook said. “I wanted to make it easier for them so they didn't have to go down these deep rabbit holes of searching for resources and what would help them and their child.”
The looming threat of funding cuts
West Virginia’s CED reports it provided services to over 435,000 people through its 20 programs and clinics last year. But that work is threatened by proposed federal budget cuts that would completely eliminate the national network of University Centers for Excellence in Developmental Disabilities.
Congress must pass funding legislation by the end of the month or face a government shutdown. The Trump administration has proposed cutting millions of dollars from health care and disability support.
According to a proposed budget from the U.S. Department of Health and Human Services, the cut is part of “eliminating radical diversity, equity, and inclusion and critical race theory programs.”
It could affect West Virginia’s CED, along with programs at the University of Kentucky, the University of Tennessee, and Vanderbilt University.
Lesley Cottrell, director of the WVU CED, said the funding supports the entire state.
“Without it, it'll be separated and disjointed,” she said. “That coordination, I would argue, really helps streamline all of the process and helps the family at the front lines.”
That help focuses on four pillars: information sharing, research, training and direct services like clinical care and home visits. These services are crucial for a state like West Virginia, where one in three adults are living with a disability — higher than the national average of one in four — and 80% of counties have full or partial designation as health professional shortage areas.
Cottrell said this is not the first time such cuts have been proposed, and the Senate Appropriations Committee has reintroduced some funding as they move through their budgetary markup process.
Cottrell and others argue that, accounting for preventative medicine and job creation, the CED provides a modest return on the government’s investment.
“The question becomes, is that money worth what we get across the board?” she said. “For us, we can say, for every dollar that we get, we give back $1.64. So we're leveraging that to do more.”
How families benefit from CEDs
The proposed cuts have caused concern for families who utilize the CED like Shannon Blosser, a reverend at the United Methodist Church in the Wheeling area.
“We're just fighting for crumbs,” he said. “We're fighting for crumbs of access and crumbs of space. As much as I want people at the table, we'd be happy with the crumbs that fall off of it.”
Blosser said his oldest son is nonverbal autistic. A lack of accommodations and resources have led to his son being homeschooled most of his life, but the CED has been a lifeline.
“The blessing of the CED is not just the research, it's not just the teachings, it's not just the advocacy. It's also just connecting people and getting people the resources that they need so that they're not alone and they can thrive,” he said.
CED board member Steven Slack emphasizes that the organization is a net good for everyone.
“CEDs give the support for people with disabilities and their caregivers to have more fulfilling, independent lives. And when they do that, they interact more with society,” he said. “When they interact more with society, then they're spending their dollars. They're providing services. They're able to work in jobs. So CEDs don't just benefit people with disabilities.”
Whether directly or indirectly, Slack pointed out that disability affects everyone, and more people will develop disabilities as they age. He said maintaining the status quo or going backwards on issues around disabilities is not an option.
“When we make these cuts, when we do these things, we further dehumanize people with disabilities” Slack said. “I just want to emphasize that we're all human. We all are capable of doing much more than other people give us credit for.”
The Association of University Centers for Disabilities developed a tool for those who would like to share a positive experience they’ve had with the WVU CED. The CED is also calling on those concerned by the cuts to contact their representatives in support of restoring funding.
West Virginia’s congressional delegation — Republican Sens. Shelley Moore Capito and Jim Justice, as well as Reps. Carol Miller and Riley Moore — did not return requests for comments for this story.
This story was produced by the Appalachia + Mid-South Newsroom, a collaboration between West Virginia Public Broadcasting, WPLN and WUOT in Tennessee, LPM, WEKU, WKMS and WKU Public Radio in Kentucky and NPR.
