Content warning: This story discusses suicide, as well as instances of physical and sexual abuse.
Before Whit Downing found her calling advocating for people with developmental disabilities, she faced her own hardship getting access to the services she needs.
Downing, who is autistic, said she wasn’t able to receive crucial services as an adult until she was 27 due to long federal waitlists. While waiting for the support, Downing survived a suicide attempt.
“I felt like I had no purpose. I felt like I had no hope for my future,” she said. “I felt like I was waiting for things that would never come.”
Those supports, like in-home personal care and job coaching, did come — eventually. And Downing said they have been instrumental in her success.
At 29, she now works full-time as the vice president of policy and programming for the Kansas Council on Developmental Disabilities, a group that advocates for people with disabilities at the Kansas Statehouse and the U.S. Capitol.
“It still feels surreal in all of the best ways,” Downing said. “Not only have I been able to grow, personally and professionally, but I’ve been able to advocate and help see systems change for individuals who maybe aren’t able to make it to the Capitol building to testify.”
But state-level groups like the council are now potentially at risk as President Donald Trump’s administration considers steep cuts to their funding.
A leaked draft budget for the U.S. Department of Health and Human Services would eliminate all funding for the Developmental Disabilities Network, which supports disability advocacy groups in all 50 states. The Washington Post published the draft, which reportedly came from Trump’s Office of Management and Budget.
The funding supports the council on developmental disabilities, the Disability Rights Center of Kansas and the Kansas University Center on Disabilities. Those groups provide a variety of services to about 46,000 people in the state.
Disability rights advocates say cuts to these programs would be devastating for Kansans with developmental disabilities if Congress were to approve them.
Years of progress hang in the balance
Rocky Nichols, the executive director of the Disability Rights Center of Kansas, said it’s troubling that such deep cuts are even being considered after decades of hard-fought advances for people with disabilities.
“Whoever’s been in power, Republicans or Democrats, there’s been an expansion of programs to protect the rights of people with disabilities,” he said. “And this would undo a lot of that, unfortunately.”
The center provides mental health services, free legal services and advocacy to people with disabilities, including help with voting.
The center also investigates abuse and neglect against people with disabilities in Kansas.
In the early 2000s, the center used that authority to help expose abuse by Arlan and Linda Kaufman — a Newton couple who allegedly sexually and physically abused people with mental illness for about two decades, under the guise of providing therapy.
They were found guilty of subjecting patients to involuntary servitude and defrauding Medicare, among other charges.
“They got away with it for 20 years, and it was only because of our mental health funding that we were able to bring them down,” Nichols said.
The HHS draft budget would cut nearly two-thirds of those mental health funds and also eliminate funds used to help people with disabilities vote.
Supporters of Trump's proposed sweeping cuts across the federal government have argued the cuts target wasteful spending.
Nichols pushed back on that notion. He said total funding for the Developmental Disabilities Network across all 50 states is only $169 million, which he argued is “not even a rounding error in the HHS budget.”
U.S. Senator Jerry Moran, a Kansas Republican, recently asked HHS Secretary Robert F. Kennedy, Jr., about his commitment to the disabilities network and “how the federal government can continue to support Americans with intellectual and developmental disabilities.”
The program took root more than 60 years ago under the secretary’s late uncle, former President John F. Kennedy, and has a history of bipartisan support.
In response, the younger Kennedy indicated he wanted HHS to continue supporting the network.
“I mean, this is a lifetime passion for me, but also a family passion,” Kennedy said. “And we will continue to provide that support and provide the best science that we can.”
‘Be here tomorrow’
Kennedy’s testimony and the draft budget seem to contradict one another. But some advocates are hopeful his comments indicate the cuts might not make it through Congress.
Sara Hart Weir, the executive director of the Kansas Council on Developmental Disabilities, said the group stands to lose more than 90% of its annual budget if Congress were to implement the cuts.
She said looming potential cuts have put disability rights advocates on the backfoot – forced to defend the status quo, when they’d prefer to spend their time and resources calling for improvements to existing systems.
“Every person with a disability you talk to, every parent, every caregiver, is frustrated with the system,” she said.
Hart Weir, who ran for Congress in 2022 as a Republican, said disability rights and services are traditionally supported by members of both major political parties.
She said the council and similar groups across the country play an important role in offering solutions that fit the specific laws and systems of their respective states.
The council has also been instrumental in passing certain bills in the Kansas Legislature. That includes a measure in 2025 to help provide accurate, up-to-date information for expecting parents who undergo prenatal or postnatal screening for certain conditions like Down’s Syndrome. The group helps connect those parents to available services if their child may be born with disabilities. The bill passed with unanimous support in both the Kansas House and Senate.
“That was the ultimate vision for the (Developmental Disabilities) Act (more than) 50 years ago,” Hart Weir said. “To make sure that we have these state solutions designed to better enhance the lives of people with disabilities.
“I think that is a very Republican perspective, and something that we’re hoping the current administration … really looks at when they decide what the future of HHS’s investment will be in the DD network.”
Downing, now thriving in her career with the council on developmental disabilities, continues to share the story of her struggles and successes in both Topeka and Washington, D.C. She hopes it will illustrate the importance of personalized support for people with developmental disabilities.
And Downing now lives by a motto, tattooed on her forearm so she’ll never forget: “Be here tomorrow.” It’s a promise to herself to never die by suicide and to always lead a determined, meaningful life.
“The work that we’re doing to advocate for people has a lot of value because, in my case (and cases like mine), lives are at stake,” she said.
Daniel Caudill reports on the Kansas Statehouse and government for Kansas Public Radio and the Kansas News Service. You can email him at dcaudill@ku.edu.
The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy.
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