Families urge Justice, lawmakers to restore funding to programs that help people with disabilities

Families and advocates attend a rally Sunday, April 14, 2024, at the West Virginia Capitol calling on the governor and lawmakers to restore funding to a waiver program that serves people with disabilities. (Amelia Ferrell Knisely | West Virginia Watch)

More than 100 people — most wearing red shirts saying, “Don’t cut our lifeline” — showed up to the West Virginia Capitol on Sunday to urge lawmakers to restore funding to a program that provides necessary services to adults and children with disabilities.

A state-offered waiver program for Individuals with Intellectual and Developmental Disabilities (known as the IDD waiver) helps families and individuals pay for staff to provide in-home care.

The workers help people with disabilities shower, eat, grocery shop and more; they also help people avoid being unnecessarily institutionalized .

Kevin Smith, who lives in Parkersburg, speaks at a rally for IDD waiver program funding at the State Capitol on Sunday, April 14, 2024. (Amelia Ferrell Knisely | West Virginia Watch)

Kevin Smith is a self-advocate for 30 years from Parkersburg with cerebral palsy. He detailed to the crowd how funding cuts to the IDD waiver program, which allows him to live independently, could impact his life.

“It means I don’t get to go to Walmart to get groceries … It means my house bills don’t get paid, and it means I have to sit in my own waste for days until someone comes in,” he said. “Lawmakers, we have a message: Don’t balance your budget on our backs.”

The funding slash for the waiver program was a last-minute Senate change to the budget bill as lawmakers were trying to broker a deal to get the budget across the finish line.

With a special session planned in May to work out lingering budget issues, families and service providers who attended the rally asked lawmakers to undo the budget cut plus add additional funds to improve services.

“We have heard since the session that they will probably put this funding back, but funding isn’t good enough,” said Christy Black, a parent of a child who uses the waiver program.

The 10% budget cut, which includes other waiver programs that help elderly individuals, equals out to around $11 million dollars. Because the program is partially funded through federal Medicaid dollars, the state-level cut could end up totaling $44 million from the IDD waiver program alone with the loss of those federal match dollars.

Nearly 6,000 individuals in West Virginia receive services through the IDD waiver program.

Both Republicans and Democrats attended the rally to push for the funding restoration.

“This is a bipartisan issue,” said Del. Michael Hite, R-Berkeley. “This is about doing the right thing.”

“While those who voted for the budget failed the test, we’re going to have a make-up test in May, and we’re going to make it up,” said Del. Mike Pushkin, D-Kanawha.

There is another issue causing staffing shortages for people with disabilities, as well as elderly people, to remain in their homes: lawmakers during the session failed to improve pay for in-home health care workers.

West Virginia uses state and federal money from Medicaid to reimburse private companies that employ in-home staff, and part of the reimbursement dollars pay for worker salaries. The state’s reimbursement rate is well below neighboring states.

Care workers earn around $11 an hour.

A study, paid for by state dollars, said the rate should be closer to $15.50-$18.60 per hour.

The state health department did not include money for the rate reimbursement increase in their budget request to Gov. Jim Justice. Though some lawmakers tried to find money, ultimately, it didn’t happen by the end of session.

“Just like too many studies that happen in this building, it was ignored,” Pushkin told the crowd, adding that a raise is necessary to find qualified people to take care of vulnerable individuals.

The rate reimbursement issue could also be addressed during the upcoming special session.

Lawmakers have since learned that the West Virginia Department of Human Services had millions of dollars in unused funds that were earmarked for IDD services.

They plan to ask state health leaders about IDD spending on Monday during a meeting of the Joint Committee on Health.

“Tomorrow DOHS representatives … will have to explain that,” Hite said.

Cindy Lathwell and her family, who live in Hedgesville, attended the IDD rally at the West Virginia Capitol on Sunday, April 14, 2024. (Amelia Ferrell Knisely | West Virginia Watch)

Cindy Lathwell and her family traveled from Hedgesville to Charleston to attend the rally. Three of her young children with down syndrome rely on the IDD waiver for services.

Caregivers must be paid a fair wage, she said, explaining how staff provide necessary care for her children as her husband is battling cancer.

She hopes that lawmakers will remember children like her own, who don’t have lobbyists or the ability to vote.

“We’re depending on these services,” Lathwell said. “Just remember the little ones.”

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