In a meeting room at the Elk Valley Branch Library, Jason Dees is running the show. Frosting cookies and playing games with his friends and their caregivers, he looks from one person to the next, offering advice and making sure everyone feels included.
“Jason, you are teaching the next class,” Chris Peters, his legal guardian, said.
Dees has PTSD from a car accident, and an intellectual disability makes learning life skills difficult. In the past, this led to violent outbursts, like throwing things and breaking windows. But with help from a team of caregivers, he lives in a home, with roommates with similar disabilities. He gets to take weekend trips and attends the social club with others who have similar disabilities.
Dees said he likes “having fun and doing arts and crafts.”
Not all West Virginians with similar disabilities are as fortunate. Increasingly, people with these disabilities are being institutionalized at the state’s two government-run psychiatric hospitals.
Between 2015 and 2021, the number of people with these disabilities admitted to William R. Sharpe, Jr. Hospital in Weston and Mildred Mitchell-Bateman Hospital in Huntington nearly tripled, to 167. It remained over 100 in both 2022 and 2023.
These hospitals were designed for emergencies, with a goal of helping people return safely to their communities, according to the state’s involuntary commitment code. But records obtained under the Freedom of Information Act showed that the average length of stay for patients at Sharpe Hospital admitted since 2015 was 139 days; at Bateman, it was 156 days. As of November 1, sixteen people with intellectual and developmental disabilities had been confined for more than a year.
For at least the past two years, disability rights advocates have warned of IDD patient “warehousing;” and even before that, West Virginia officials acknowledged that the state was indefinitely confining people to state-owned psychiatric hospitals. Now, as lawmakers are on the cusp of the 2024 legislative session, they’ll have another opportunity to address some of the problems.
But while the Legislature did take some action during the last legislative session to address institutionalization, they focused on studying the problem versus direct action to end and prevent it.
“Yes, these people are at the hospital,” said Gina Desmond, senior advocate at Disability Rights of West Virginia (DRWV). “And yes, they need out. But we need to prevent them coming to begin with, and that begins with quality home and community-based services.”
Former Department of Health and Human Resources Secretary Bill Crouch said in an interview last year that the increase in admissions was partially due to the loss of other psychiatric beds at closing rural hospitals. Hospital officials have pointed to the role of courts, who have deemed the patients harms to themselves or others. Disability rights advocates have said providers who receive state money are “patient dumping” their clients at hospitals, and courts are too quick to agree to commit them. But all agree that in some cases, a shortage of well-trained, well-paid care workers gives some patients few other options.
“The West Virginia Department of Health and Human Resources (DHHR) continues to work with stakeholders to provide quality care for people with Intellectual and Developmental Disabilities (IDD),” said Whitney Wetzel, DHHR spokesperson. “At this time, DHHR is still finalizing legislative recommendations.”
Few workers lead to few options
To Susan Given, DRWV’s executive director, it feels like the state has gone back in time. Weston State Hospital, now a tourist destination known as the Trans-Allegheny Lunatic Asylum, institutionalized patients decades ago.
“When I was a senior in high school, we went there,” she said. “And it was the saddest thing you would ever want to see.”
The sprawling complex is a foreboding reminder of an era when people with mental illnesses, disabilities and other conditions were crowded into asylums. Lewis County Commissioner Agnes Queen worked at Weston State Hospital while in college.
When it closed in 1994, Queen said the hope was that people would be treated with dignity and live in their communities. But she remembers another story.
“They just basically put everybody on the bus and up to the other hospital,” she said.
The current Sharpe Hospital is just three miles up the road.
Intellectual and developmental disabilities, often grouped together and referred to as IDD, can range from Down syndrome to cerebral palsy to autism. While people with these disabilities may not learn or develop at the same pace as others, many are able to live independently or in small group settings with help from care workers.
These care workers help with life skills like bill paying, laundry and hygiene, and in many cases, their help is crucial when helping West Virginians with intellectual disabilities manage outbursts stemming from frustration. But this type of care requires workers who stay with clients long-term. It’s hard — and sometimes dangerous — work and there is high turnover.
Workers who took the time to know him and a guardian who cared were key to Jason Dees ending his outbursts.
“He has his needs met in the sense of a village diligently raising a child,” said Chris Peters, Dees’ legal guardian.
But West Virginia Behavioral Healthcare Providers Association CEO Mark Drennan estimated the state needs about 2,500 more of these workers.
“When people can go to Sheetz and make $15 an hour, they’re not going to come work for us,” he said.
He said most care workers earn about $10 an hour.
“A lot of the workers, they make so little that they actually qualify for social services,” said Desmond.
DHHR spokesperson Jessica Holstein said officials are working on several facets of the problem. They held trainings for direct care workers to better assist patients with histories of trauma in April and May, are considering whether it would be effective to tie pay increases to improved training and are researching how other states are alleviating workforce constraints.
Savannah Gurski has been a care worker for more than five years and works with clients with intellectual disabilities in Boone County. She said she learns what makes each person upset, then helps the client learn to navigate it. That can include everything from keeping a client with autism away from irritating textures to learning about reminders of previous traumatic experiences.
Gurski said she had a client who became violent when showering. “And the reason being behind that is they grew up in a bad environment and had a situation occur where somebody was molesting them,” she said.
Years of increased admissions and stagnant wages
When people with intellectual and developmental disabilities don’t get that kind of care, increasingly, they’re ending up in Sharpe or Bateman hospitals.
Earlier this year, lawmakers did take some action, including a bill directing two studies on whether to increase pay for direct care workers and how to increase staffing.
Sen. Jason Barrett, R-Berkeley, was the bill’s sponsor. He was emphatic that the pay rates, which are set by state officials, should be improved, after 12 years without an increase. But he also said this year of study was necessary so the Legislature can be deliberative. He suggested that in the future, pay raises should vary depending on the region of the state and automatically rise with inflation.
“I don’t want to be in a situation 12 years from now that we wait until we lose good people and facilities are on the verge of closing before we address the problem again,” he said.
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Senate President Craig Blair, R-Berkeley, deferred questions to Jeremiah Samples, a former state health official who’s now advising lawmakers. Samples noted that lawmakers may have to make tough decisions because of a “pretty significant” projected Medicaid shortfall.
House Health Committee Chair Amy Summers, R-Taylor, who led efforts to address the issue, declined to comment on the shortfall through spokesperson Ann Ali. Ali noted that lawmakers anticipate hearing the study results in December interim meetings this week. DHHR would not provide an interview with Bob Hansen, who is leading one of the studies.
There’s also a possibility lawmakers could revisit a proposal that passed the House of Delegates during the last session: a 20-bed transitional living facility for patients who need more staff to provide supervision. The idea is to provide a place to live temporarily for patients who are released from hospitals, if their care workers who help them live independently or in group settings won’t take them back, although Samples said it could also be used to hold people who would otherwise be sent to the hospital.
There’s “not just a single lever that we pull and OK, now this is fixed,” Samples said.
The West Virginia Behavioral Healthcare Providers Association remains in support of the transitional living facility for people with IDD who are deemed harmful to themselves or others, according to Drennan. But DRWV advocates worry the facility won’t address the root causes that are causing people with these disabilities to be sent to hospitals in the first place — and that it will become just another place to hold people indefinitely.
“They can call it transitional all they want, but we all know that isn’t going to happen,” Given said.
Right now, the available options worry Renea Slack, 53, who lives in South Charleston with her son, Tyler Clark.
Like Jason Dees, Clark is fortunate enough to live at home in a familiar environment. He has cognitive delays and mild cerebral palsy, but has the structure he needs, which includes church on Sunday, watching his favorite TV shows on Mondays, Tuesdays and Fridays, and monthly visits with Dees at the library.
But Slack is worried about the future. Accidents can happen at any time, she noted.
“I’m not afraid to die,” she said, referencing her Christian beliefs. “It’s him I’m worried about.”
A lawyer helped her with a notarized document stating she wants to leave her home to a local service provider, with the stipulation they would provide in-home help for her son and a roommate for the rest of Clark’s life.
But there are still factors outside her control, like whether there will even be a care worker available to support her son and keep him living at home. She worries that if he were sent to a larger facility, he would become depressed and angry and act out.
“I’ve worked so hard to make him happy all his life,” she said. “I just want him to continue to be happy once I’m gone.”