‘A system on the verge of collapse’ — Money for people with disabilities slashed in state budget

Del. Michael Hite, R-Berkeley, was upset to see funding for the state’s care of people with disabilities had been decreased in the budget on Saturday, March 9, 2024. “I don’t care if those came from the House, the Senate, or the governor. This is unacceptable," he said. (Perry Bennett | West Virginia Legislative Photography)

Some members of the House of Delegates were surprised — and outraged — late on the final night of the legislative session when the Senate’s latest version of the budget appeared before them. There was a notable change: funding for the state’s care of people with disabilities had been decreased.

“I don’t know any category more vulnerable … there’s a reason they’re a line item. They’re in crisis right now and have been in crisis,” said Del. Michael Hite, R-Berkeley, on the House floor. “You can’t get people to take care of these individuals anymore.”

He continued, “I don’t care if those came from the House, the Senate, or the governor. This is unacceptable.”

Lawmakers estimated around $97 million to fund state services for individuals with intellectual and developmental disabilities (IDD) — a decrease from the previous year.

Failure to address the issues facing the state’s IDD population  — including a shortage in workers who take care of them — could cost the state more than $300 million for unnecessarily institutionalizing people, according to the state Department of Human Services. The document was shared by Disability Rights West Virginia.

The state is facing a federal investigation for its treatment of people with disabilities. Patient advocates have accused the state of “warehousing patients” at troubled psychiatric hospitals, and state inspections showed it has been a problem.

The funding decrease was included in a final day budget bill amendment by Sen. Eric Tarr, R-Putnam. Despite some House members’ concerns about the changes, lawmakers reached a budget deal late Saturday night.

Tarr told West Virginia Watch that the funding decrease was a continued effort for lawmakers to get a handle on how much the state health department is spending and where the money is going.

In prior years, Tarr explained, the behemoth state health department would move money around to deal with funding shortfalls. Since the state health department split into three new departments Jan. 1, he wanted transparency about where money was being spent — the budget bill barred funding transfers between departments.

“What I’m not doing is appropriating money into darkness anymore,” said Tarr, who noted that the proposed budget improved state health department spending by $10 million.

He continued, “The way this budget works now is that we may have underfunded things, but they can come back in during the fiscal year and say, ‘We’re under-appropriated here,’ and we can go back in and look at their [spending]. We can start going in with some transparency and start rightsizing.”

Mike Folio, legal director for Disability Rights West Virginia, said the decrease in funding  will ultimately increase spending for the state, as more people with disabilities will end up in costly state-run facilities.

“The [state’s] overall population is decreasing, but the population of vulnerable protected individuals is increasing,” he said. “What I’d like to see … is a legislative body that takes action for people in need. They continue to ignore the problem and kick the can down the road year after year.”

House members unsuccessfully sought raise for direct care workers

The decrease in funding was opposite of what several House Republicans and Democrats had wanted. They’d sought money to increase pay for direct care workers who take care of individuals who have round-the-clock needs like eating, showering and taking medications. Care workers earn around $11 an hour.

The state uses state and federal money from Medicaid to reimburse private companies that employ direct care workers, including those who help individuals remain in their homes.

A 2023 survey by the health department — paid for by state dollars — said the state needed to increase its rate of reimbursement. A spokesperson for the West Virginia Department of Human Services couldn’t share the cost of the survey, saying in an email that they haven’t yet received an invoice.

Folio said, “Tax payers were swindled out of their dollars for an expert report that was ignored.”

Margaret Nimmo is chief engagement officer for enCircle, a company that employs dozens of direct care workers to help take care of 27 residents. The individuals with disabilities live in six group homes in the Martinsburg area.

The state’s low reimbursement rate has left her Virginia-based company “losing money every minute we’re operating.”

We want to provide a safe environment for the people we support. In many cases, we’re their only family. They don't have any other options.

– Margaret Nimmo, chief engagement officer for enCircle

“We want to provide a safe environment for the people we support. In many cases, we’re their only family. They don’t have any other options … Fourteen of our folks have no family to go home to,” she said.

Nimmo said that she and other community service providers, including those who went to Charleston to meet with lawmakers, were “extremely disappointed” to learn the state  decreased funding for the IDD population. There would be no raise for workers, either.

“We are all struggling, that’s why the system feels like it’s on the verge of collapse,” she said. “If any one of us goes out of the business, that’s a hole we cannot fill.”

The worker shortage has resulted in more people with disabilities ending up in psychiatric care facilities, which were never meant to house people long term. Facilities can cost the state hundreds of dollars more per patient than in-home care or a community placement.

Lawmakers did approve in their budget bill an increase for contact nurses at state-run psychiatric hospitals. In November, the state director of health facilities announced the department would increase its vetting of contract nurses after multiple employees at William R. Sharpe Hospital were charged with crimes last year.

House Bill 4408 , which could have helped people with disabilities avoid or get out of institutions, passed out of the House but stalled in the Senate Health Committee.

AARP also advocated for a raise for direct care workers as they help people who are older remain in their homes.

“The staffing issues that confront West Virginia aging services providers are a challenge for our long-term care system and for the family caregivers who depend on the assistance of direct care workers,” said Thomas Hunter, spokesperson for AARP West Virginia. “As we look at the projected growth of our older population over the next decade, we know that staffing levels are not where they need to be now, and are not expected to grow fast enough to meet future needs … The research is pretty clear on what needs to be done.”

The state could alter its funding plan for individuals with disabilities when lawmakers gather in May for an expected special session to deal with outstanding budget issues.

“We had some really good conversations with legislators in both the House and Senate during the session. People really seem to understand that there is a crisis in the IDD system. We’re hopeful that people will take action, and this will stay on their radar,” Nimmo said.

This story was updated to include a response from the Department of Human Services regarding a rate study.

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