'Not just a number'; Nevada's disability community fears backslide amid funding cuts

Shelby Benzing is a 21-year-old UNR student who lives with cerebral palsy — a neurological condition that disrupts control of muscle movement and coordination.

Benzing uses a power wheelchair and is able to live independently with support from a host of safety net programs. She hopes to leverage the degree she's earning in human development and family science to be an advocate for the estimated 269,000 children and adults in the Silver State who have some form of disability.

But Benzing is now worried about the pending federal health care cuts to Medicaid passed as part of the "One Big Beautiful Bill" and separate budget changes to disability services that federal lawmakers are considering.

"[Medicaid] helps cover my wheelchair, covers doctor's appointments, medications, medical supplies … this is not only affecting me, but thousands of other people," Benzing said. "I know how vital these accommodations are, and they don't know what they're messing with."

Though the reconciliation bill has gotten its fair share of headlines and is projected not to create a major immediate budget shortfall in Nevada, disability advocates and community members are increasingly afraid of a backslide stemming from additional cuts and changes being weighed at the federal level that are expected to affect supportive services that help disabled people live independently.

"We are not just a number on a card," Benzing said. "We are actual human beings trying to be a functioning citizen and a productive member of society, and we use those benefits every day of our life."

In addition to Medicaid work requirements implemented as part of the bill for adults without a documented disability, the Trump administration has dismantled the federal Department of Education (which supports students with and without disabilities) while removing disability-related information resources from federal websites and lawmakers are considering federal cuts to programs that help Nevada's disabilities network.

Already, at the state level, health officials implemented waitlists for new applicants seeking various contracted services, including supportive living arrangements for individuals who need help living independently, job training, service coordination and family support services. Officials said that as of June 30, between 10 and 1,300 people are on any one of several waitlists. For example, the waitlist for personal assistance services, which provide community-based in-home services to enable adult individuals with severe physical disabilities to remain in their own homes and avoid placement in a long-term care facility, is 67 people long; the developmental services respite care waitlist has more than 1,300 people on it and 483 people are on the waitlist for optional Medicaid home and community-based services waiver for persons with physical disabilities.

Jaeron Mickle, spokesperson for the Nevada Aging and Disability Services Division (ADSD), wrote in an email that the Legislature approved additional funding in 2025 to maintain services for existing clients across all programs, but overall funding didn't increase. Therefore, he said, waitlists have been implemented for new applicants for services through the division.

Catherine Nielsen, executive director of the Nevada Governor's Council on Developmental Disabilities, said broadly, cuts of any sort usually disproportionally affect supportive services, which enable people with disabilities to remain in their own homes and communities of choice. These types of services are often optional or supplemental by law, she said, which means that when state budgets get tight, they're the first to go.

If non-Medicaid federal funding for supportive services goes away, Nielsen said she fears that people with disabilities could have to move into group homes, larger living situations with limited choices and even face the potential for increased placement in institutions, which have a historical aspect of abuse and neglect. Institutions have been slowly phased out in Nevada. Still, there are documented instances of people being sent out of state to institutions for care because services were not available within the state.

"We're talking about personal care aides, supported employment, assistive technology, respite, things that make daily life possible," Nielsen said, clarifying that these aren't guaranteed Medicaid services. "[These types of cuts] reduce opportunity, dignity and independence for really everybody in the community."

There's also a budget proposal that could jeopardize federal dollars supporting Nevada's developmental disability network, or a group of organizations working to improve the lives of people with disabilities established under the Developmental Disabilities Assistance and Bill of Rights Act. The act aims to ensure that people with developmental disabilities achieve independence, productivity and inclusion in the community.

In Nevada, that network includes the council, the Nevada Disability Advocacy and Law Center and the Nevada Center for Excellence in Disabilities. Though potential cuts could affect all members of the network, Nielsen identified the Nevada Center for Excellence in Disabilities on the campus of UNR as being most at risk.

The center is one of only 68 University Centers of Excellence in Developmental Disabilities nationwide. The Association of University Centers on Disabilities warns that the federal fiscal year 2026 budget proposal would eliminate the centers of excellence by combining their funding and work with other programs, and make it harder for states to run them.

With nearly 80 staff members, the Nevada Center for Excellence in Disabilities' 2024 annual report shows it supported more than 30 projects in 2024, providing professional training, direct services, community education and conducting research into public policies affecting people with disabilities — directly affecting thousands of Nevadans.

Center Director Randall Owen said losing supportive services leaves people with disabilities without choices about friends, food or other personal freedoms.

"We want to live in the community. And I say we, because I am a person with a disability, and I don't want to see other people that are part of that community being sent anywhere," he said. "When we lock away a certain part of the population, we're just missing out on all the good things that those people do have to offer us."

'Everything falls on the state'

The Nevada Center for Excellence in Disabilities' central office is in the southeastern part of UNR's campus, inside a brown-brick building hosting the university's education college.

The center is affiliated with the university but is an autonomous entity. The small, relatively cramped administrative center on the fourth floor of the building isn't much to look at, but that's because the programs and services it offers are community-based and scattered throughout the state.

Though it's physically located in Northern Nevada, the center serves the entire state.

Last year, it partnered with the Nevada Governor's Council on Developmental Disabilities to host bike riding camps, one in Reno and one in Las Vegas. In 2024, 45 children and adults with developmental disabilities participated in the program.

Research shows that more than 80 percent of people with autism and 90 percent of people with Down syndrome never learn to ride a bicycle. Learning to ride empowers participants with confidence, independence and transportation skills, the center noted.

Owen emphasized the importance of enabling people with disabilities to interact with and be part of the community of their choice. It's one reason the center founded the Path to Independence program, a two-year certificate program at the university that allows students with intellectual disabilities to participate in campus activities and interact with other students at UNR.

"The rest of our students get a whole lot out of just interacting with them on a daily basis," Owen said. "Maybe having classes with them, seeing them at [the student union] having lunch, and just getting to meet students who maybe don't look and act like them, but they still belong here."

Path to Independence is one of the college's programs that bills Medicaid. Owen said he worries that Medicaid cuts may affect vocational services for people with disabilities, losing access to behavioral health offerings such as therapy in schools, especially in rural communities.

Nevada already has a spotty history of providing people with disabilities adequate state-funded treatment and services. This is despite the U.S. Supreme Court's 1999 Olmstead Decision, which established that people with disabilities have a qualified right to receive state-funded services, allowing them to live in the least restrictive environment possible — interpreted to mean that they should receive services in the community rather than in institutions.

In 2022, a Department of Justice report found that Nevada violated federal law by failing to provide treatment and services to youth with behavioral health disabilities and over-relying on institutional settings.

Though the state agreed to a settlement with the federal government in January, Owen warned that cuts to disability services and implementation of things such as work requirements for Medicaid could be detrimental.

As the potential for federal cuts to the center looms and shifts to disability offerings are being made to federal agencies, families and individuals who may not know what to ask for or how to navigate the system will struggle, Owen said, especially without support or guidance from the federal government.

"It's going to mean that everything falls on the state. They're going to need to know what the best processes are," he said. "Without a federal component to it, I just don't know where that oversight is going to come from and I'm worried about the people in our state."

The state's response

As a Nevada state employee who helps connect individuals with severe disabilities or complex medical needs to resources and care, Maria Jacobi said she's worried Medicaid cuts within the "One Big Beautiful Bill" are likely to lead to fewer providers offering in-home services.

Speaking as a member of the American Federation of State, County and Municipal Local 404 union, Jacobi said personal care assistants and in-home doctor visits are vital for people with disabilities. If those services lose funding, families will be left on their own, without a way to help their children, many of whom are legally adults.

"If we don't have Medicaid helping us do that, there's no way that the state can pull through for it on its own," she said. "It's going to affect the families."

Though fears for the future of Medicaid-funded community-based services will be delayed under the legislation, and no major budget shortfalls are projected at this time, cuts to some service programs in Nevada have already begun.

Peter Reed, director of the Sanford Center for Aging at the UNR School of Medicine, highlighted the Trump administration's decision to eliminate the Administration for Community Living as particularly damaging. It funds services and supports for aging adults and people with disabilities to live independently and participate in their communities.

"These decisions at the federal level have an impact on the state's ability to continue funding local service delivery," Reed said.

Nevada's Aging and Disability Services Division has already cut approximately $280,000 in funding for services for older adults and people living with dementia offered through UNR, citing "ongoing federal funding uncertainty and reductions in the state budget."

Though it appears minor in the grand scheme of cuts to state and federal budgets, Reed said that the state reductions have resulted in lost funding for a medication therapy management program, funding for a partnership with UNR's nursing program that allowed them to do community-based health screenings in low-income or affordable housing complexes and funding for a statewide dementia initiative led by the UNR School of Public Health Dementia Engagement, Education and Research Program.

"I know that the state and the agencies such as ADSD, they're in a position of having to make really difficult decisions," he said. "And those decisions, which are being driven by the uncertainty at the federal level, are having a direct impact on the ability of community-based service providers to fulfill the missions that we have in serving people."

Changes from the One Big Beautiful Bill

There's still a lot that officials don't know about the outcome of the Big Beautiful Bill, which is set to roll out over the next decade.

But one point that experts noted that could have a significant effect on the aging and disabilities community are work requirements.

Makayla Lavender, a health economist and assistant professor at UNLV, said that people's health tends to decline as they near the age of 65, and even if it's not a disability, it can still be challenging to work.

She fears that whenever work requirements under the Big Beautiful Bill kick in, people younger than 65 who previously qualified for Medicaid based on income are going to have a hard time fulfilling those requirements of 80 hours per month of working, attending school or job training.

There are questions, Lavender said, about the cost to implement these work requirements and if they'll function as red tape that will hinder people with disabilities from documenting their disability and people nearing 65 who may be ready for retirement but wouldn't have insurance through Medicaid under the new rules.

She added that there's likely to be a shift to older adults using marketplace insurance, but costs could also rise with the likely expiration of premium subsidies for certain income brackets purchasing that insurance.

"It's really important to note that if you are deemed ineligible for Medicaid due to the work requirement, you then are not eligible to go on to the marketplace and get premium subsidies," Lavender said. "If you think, 'OK, I might have some issues with the work requirements,' then maybe just trying to go the marketplace route and not risk that is an important first step."

Reed noted that cuts to Medicare and Medicaid home and community-based services that enable people to hire in-home care providers may mean that people might not get the support they need, resulting in providers losing clients and putting a greater strain on assisted living facilities, which has broader implications.

Looking ahead

One unified message members of the aging and disability populations, providers and experts shared is that disability and ageing don't discriminate by race, income status, gender or other identity.

"Anybody's one second away from it, one fall away from it, one bad car accident away from needing these services," said Nielsen, with the governor's disability council. "While you may not need them now, maybe your loved ones don't need them now, you could need them very quickly in the future, and you don't know when that could hit."

Dora Martinez, a 51-year-old who is blind and lives in Northern Nevada, said existing services are already failing many Nevadans. She said she's had an open case for six years and has not received vocational training as a blind person.

More cuts and less federal oversight are not going to help an already struggling system, Martinez said. She said she's lucky to have family members who can help her out, but a blind friend of hers who is 61 and has a husband, 67, with brain cancer, is without support and struggling to keep up with assisted living costs.

It's hard to know where to start with improving the system, Martinez said, explaining that there's a lot of fear about speaking out right now and potentially drawing negative attention to services that might lead to cuts, but she's not going to stop.

"I've gotta keep advocating, because that's part of who I am," she said. "I have my support system. I'm very comfortable and confident that I do, but I'm worried about my peers."