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By Erin Beck
Richard Rothermund was healthy and generally happy before he was confined to Mildred Mitchell-Bateman Hospital in Huntington in 2020, according to Sue Rouse, his mother. There, Sue says, a lack of independence, separation from loved ones and the decline of joyful moments in his life led to the drastic deterioration of his health, and ultimately an early death.
“He deserved — just like anybody else does — a normal life,” she said.
Sue and Cliff Rouse took Richard in as a foster child when he was 12 years old, and, as Sue described it, they “fell in love.”
Richard had Down syndrome, which contributed to emotional outbursts often resulting from trouble expressing himself. He was well-loved in the Wheeling community and a natural entertainer who delighted in telling jokes, playing music and making people smile.
Mildred Mitchell-Bateman Hospital and Sharpe Hospital, in Weston, are the only two state-run psychiatric hospitals in West Virginia. Those hospitals are meant for short-term care for people experiencing mental health crises. They are not designed for the long-term care of people with intellectual or developmental disabilities, also known as IDD, like Down syndrome.
But according to Sue – who Richard called “Momma Sue” – no other health facilities designed to assist people with disabilities like Richard’s would accept him. As the Rouses grew older and less able to care for him, they reached out to about 50 group homes and nursing facilities, including some several hours away in state and some in Ohio. The facilities turned him away, blaming his emotional outbursts. And once he developed severe health issues at Mildred Mitchell-Bateman Hospital, facilities said they lacked the staff to care for him.
Richard was sent to Bateman in March of 2020. In the year and a half he was there, he gained 60 pounds. He’d gone from getting up every day to take a shower to sponge baths. He developed congestive heart failure and rheumatic heart disease, caught pneumonia multiple times and contracted COVID-19, according to the Rouses. Most of their savings went to fuel for the nearly seven-hour round trip from Wheeling to Huntington to visit him. Following the severe deterioration of his lungs, Richard died at age 40 on Dec. 17, 2021.
Before Richard was hospitalized, Sue said he’d spend all his time with her. They held hands everywhere they went. He’d write on calendars about what they had planned for the day, then scratch it off when completed.
At the hospital, he mostly just laid in bed. When he called, Sue would tell him they were still looking for a place. “And I think that’s how he got through every day,” she said.
“I don’t really know if it gets easier or not,” Sue said. “It probably doesn’t… but you just have to think about the good times that you had with him and know that he’s happy now not having to be there at Bateman. That’s the only thing that gives you any peace.”
“Warehoused” and patient “dumping”
The Rouses’ experience accessing care for Richard is a result of a complicated healthcare system in West Virginia that advocates say is failing its patients – especially those that need specialized care.
Services for people with IDD and the two state hospitals that serve people in psychiatric crises are run by the West Virginia Department of Health and Human Resources, an agency with a $7.5 billion annual budget that has received intense scrutiny by state lawmakers over the past few years.
Former DHHR Cabinet Secretary Bill Crouch unexpectedly announced his retirement in December, and West Virginia state lawmakers are now aiming to solve problems at the state’s largest agency by splitting it into three.
The announcement followed several controversies, including a West Virginia Public Broadcasting report on a letter from Senate President Craig Blair, R-Berkeley, to Gov. Jim Justice outlining abuse incidents at state facilities over several years, and a DHHR-requested report from the consulting McChrystal Group, which found it didn’t require a split but investment in an executive leadership team and improved internal communication. State lawmakers, who tried to split DHHR, an agency that has struggled to handle the ongoing overdose and child welfare crises in the state, into two agencies last year, weren’t happy with the reports.
But DHHR’s failure to prevent the inappropriate long-term confinement of people with IDD diagnoses like low IQ at state-owned hospitals isn’t new.
During a meeting before West Virginia lawmakers, Crouch had acknowledged that people shouldn’t be living their lives in hospitals. Advocates for people with disabilities, including Disability Rights of West Virginia, have also reported the problem for several years.
In September of 2022, Gov. Justice announced extra funds for community-based services for vulnerable populations, including people with disabilities and children with severe mental illness, about $240 million in one-time funds due to the extra federal assistance, and Mark Drennan of the West Virginia Behavioral Healthcare Providers Association has said he was encouraging less restrictive facilities to care for the patients.
But the problem has worsened over time.
Admissions of people with IDD conditions have increased significantly at Sharpe and Bateman, according to DHHR records.
In 2018, five years ago, there were 57 admissions of patients with intellectual and developmental disabilities. In 2021, there were 167 and in 2022 there were 135.
Disability Rights of West Virginia, or DRWV, is a nonprofit agency that is federally mandated to protect and advocate for people with disabilities in the state.
Mike Folio, legal counsel for DRWV, a position he took in August said that 88 IDD patients are being “institutionalized and almost warehoused at psychiatric facilities” during legislative interim meetings in December. The disability rights group has also accused other companies that run less restrictive facilities, such as group homes, of “dumping” those patients at hospitals.
Following an alert from DRWV, DHHR is also now under federal investigation by the U.S. Department of Health and Human Services Office for Civil Rights for allegedly discriminating against institutionalized IDD patients who “are now needlessly segregated in state-operated hospitals.”
Folio, who previously worked for DHHR, said his organization is prepared to sue if state officials don’t devote significant investment. He also said, “if there aren’t solutions there’s going to be a resolution that’ll be in court.”
“I hate to say it that way but at times we’re sort of like Nero playing the fiddle as Rome burns,” he said. “I see Rome burning each day that an IDD patient is inappropriately institutionalized. At some point, we need to stop playing the fiddle and actually put out the fire.”
The state Senate passed Senate Bill 126 to split DHHR into three agencies, this year’s most prioritized legislative response to persistent problems at the agency, on the first day of session Jan. 11. A similar bill, House Bill 2006, is scheduled for a final vote in the House of Delegates this week. Earlier in the session, Delegate Amy Summers, R-Taylor and chairwoman of that committee, characterized splitting the agency as a first step and said lawmakers are working with Disability Rights of West Virginia on legislative recommendations aimed at the problem.
A long-standing problem
When people with intellectual or developmental disabilities need help with the tasks of daily living, such as grooming or the upkeep of a home, West Virginia may provide assistance in several ways.
For those who qualify for the Intellectual/Developmental Disabilities waiver program, the state pays for direct care workers to provide a variety of home-based services, including help making beds and doing laundry, bathing and toileting, and de-escalating situations. Other people with IDD may receive assistance while living in group homes, which typically hold four to eight roommates. And companies that provide group homes also may receive state funding to provide at-home services. Ideally, workers in either setting get to know patients well over time. But with low pay, there is high turn-over in these positions, according to advocates.
Federal law recognizes the importance of community-based help, instead of institutionalization. In Olmstead v. L.C, a 1999 decision, justices found that the Americans with Disabilities Act required the placement of patients with mental disabilities in “integrated settings,” meaning not segregated from others, when they are medically cleared for such settings, they express a desire for those settings, and the resources for such a transfer are available.
“It’s not supposed to be like your second home where you stay for years and years, which happens,” said Jason Parmer, a lawyer for Disability Rights of West Virginia, referring to the psychiatric hospitals. “If they end up in the hospital, they should be there a short time and then just go right back to their home or where they were, but that’s not happening. They’re staying in the hospital for months and months and months.”
But according to advocates, preventing people from inappropriately ending up in hospitals requires well-resourced community-based services, like in-home help and group homes, and where those services do exist, workers are still sending their patients to hospitals.
Parmer warned of the problem at a meeting of the Olmstead Council in August of 2021, which state officials were present at. The council is part of DHHR and is tasked with implementing and monitoring equal opportunities in the state for people with disabilities. Parmer said, in an email, that he’d “reported that several people on the IDD Waiver program are stuck in psychiatric hospitals and the person’s IDDW provider either will not or cannot provide services in the community.”
At the end of the 2022 legislative session, there were 46 patients with an IDD diagnosis at Sharpe Hospital, according to Legal Aid.
“Out of the 46 patients on the list, probably 10 of them have been institutionalized most of their adult lives,” said Roonie Reed, who works for Legal Aid, a nonprofit law firm that serves low-income clients.
Reed taught creative writing at Sharpe Hospital before becoming an advocate. She said creative expression helped her patients “get to know themselves better, as well as teach others what it’s like to be trapped inside that body.”
“You can’t ‘cure’ somebody who has an intellectual disability,” Reed said.
Instead of confining patients who already feel trapped, she said giving patients with IDD more independence would make for kinder communities. But she said when patients are released, long stays at the hospital make them less prepared for life outside of it.
“If they were in the community, they could add a lot of goodness, kindness, a lot of caring,” she said. “Most people with intellectual disabilities have huge hearts.”
At the December legislative interim meetings, Folio told lawmakers that of the 88 patients at state-owned psychiatric hospitals, including Sharpe and Bateman and private hospitals the state diverts patients to when it has too many, 40 were at Sharpe as of Oct. 7.
And while DHHR records say that fewer IDD patients are confined to state hospitals now, the 200-bed hospital is regularly at capacity, and advocates say many IDD patients in state custody are at diversion hospitals. DHHR hasn’t provided additional requested data from those hospitals.
Pat Ryan, Sharpe Hospital CEO, in a December testimony before West Virginia lawmakers, has countered that the IDD patients at his facility are court-ordered, and they are given mental health diagnoses, like mood disorder not otherwise specified. That diagnosis, according to Mental Health America, “allows doctors to provide patients with the best care in emergency situations where there isn’t time to get all of the information necessary to make a formal diagnosis, but treatment is still needed.”
In an interview with Crouch following that meeting but just prior to his unexpected retirement announcement, the former DHHR cabinet secretary pointed blame toward the closure of rural hospitals, including psychiatric units; COVID-19 creating delays in buying furniture for group homes; and more courts committing patients to hospitals.
Advocates for people with disabilities are following dozens of bills of concern and bills they support; most that could help in direct or indirect ways aren’t moving yet, including a whistleblowers bill relating to protections for workers at state health care facilities who report unsafe patient care. Some related bills are moving, such as a bill to provide aides for teachers who teach students with exceptionalities, including autism and intellectual disabilities, which has passed the House, and another creating a study group on diverting people with IDD from the criminal justice system, which has passed the Senate.
Still, advocates say the issue will require a multi-faceted approach, with focus on housing, caregiver support, employment, transportation, housing, courts, enforcement of abuse and neglect prevention standards, and financial support directed toward helping people live independently.
Thursday was the mid-point of the 60-day session, and bills must be passed by either the House of Delegates or state Senate by March 1, then the other legislative body before session ends March 11, to become law.
“They have lives in their hands”
In response to allegations that patients were being improperly turned away from group homes – a practice DRWV calls “patient dumping” – Drennan of the West Virginia Behavioral Healthcare Providers Association, which represents providers throughout the state including those that provide services for the IDD population, has countered that some IDD patients need hospitalization to keep from harming themselves or others. He also pointed to the healthcare worker shortage exacerbated by COVID-19.
“And so if you’ve got a difficult patient, whereas before, if you had a decent workforce, you would take an additional chance on somebody, that difficult patient,” he said.
But DRWV has said sending away patients without an agreed-upon plan with the patient, any legal representative, and provider for next steps after hospitalization violates the West Virginia Bureau for Medical Services’ own policy (specifically, the 513.27 Transfer section in the Intellectual and Developmental Disabilities Waiver manual).
Megan Pigott, senior advocate for Disability Rights of West Virginia, said she noticed in recent years direct care workers were becoming more likely to call the police than try to defuse a situation.
Stephanie Thorn, a program director for Disability Rights of West Virginia, also said low pay and a lack of training and support from superiors are contributing factors. She said “it’s reframing what this job is.”
“They have lives in their hands, and I don’t think when you look at it from the big picture that the direct care staff are appreciated for that kind of work,” she said.
People with IDD also may be more vulnerable to abuse or mistreatment. According to Bill Albert, behavioral health advocacy director at Legal Aid, employees at Sharpe reported that in 2020, “we had a total of 92 abuse and neglect cases. Allegations were substantiated for 29 of those cases. Of the substantiated allegations, 12 involved patients with an IDD diagnosis.” More recent numbers from Legal Aid were not provided.
Sue Rouse said she was devastated when one patient attempted to sexually assault Richard before a nurse spotted the attack. State Police contacted her, and the man was moved to another floor, she said. But she never heard back from police or any health officials.
“He was just very vulnerable,” she said. “Even though he was 40, his mentality was like a five or six year old. I mean, he still believed in Santa Claus.”
At peace now
Sue is upfront about the fact that Richard did exhibit what those in the behavioral health world often refer to as problematic “behaviors.”
She and her husband realized they weren’t equipped to provide the care Richard needed when, about five years ago, he threw a TV, knocking her down. But Sue said she knew Richard never wanted to hurt her.
“He’s like a five-year-old having temper tantrums,” she said. “He’s in a man’s body.”
Richard’s outbursts got worse once he arrived at the hospital. For Richard, music served as a way to express his emotions in a healthy way. At the Bateman, he couldn’t play his guitar or listen to the country music that soothed him.
For his birthday at home once, they were supposed to have a Billy Ray Cyrus impersonator, but Elvis showed up instead. No matter to Richard. He joined Elvis to put on a show.
“He sings his little heart out, and you can tell he’s about ready to bust out crying,” Sue Rouse said. “He knows the words, but you wouldn’t know he does. But he really does. It’s just how he says them.”
The Rouses also said that for Richard, loud noises, like commotion at the hospital, wound him up. Sue was surprised to hear that at Bateman, he pushed people or flipped wheelchairs.
“I always told them if you’re not understanding what he’s saying just tell him, and he’ll find a way to show you. But they have to take the time to listen to you,” she said.
Sue wondered if families in West Virginia might open their homes to people who need special care, or group homes could be better equipped to help people with both health and behavior issues. “It’s just going to cost them more,” she said.
Not knowing that dozens of other IDD patients were being held at Sharpe and Bateman hospitals, she had felt alone in her grief. So she was encouraged to hear that Disability Rights of West Virginia had presented the problem to the Legislature and was in discussions with lawmakers about solutions. She also said she’d be willing to tell her story to the Legislature.
But in the meantime, she begins each day, thinking about Richard, although she believes he’s at peace now. In December, Sue and Cliff planned a trip to the cemetery on the one-year-anniversary of Richard’s death.
“I just feel like half my heart went with him,” she said. “In my dream, we were walking holding hands, and we were talking just like you and me. I don’t remember what he said but I just felt like he was telling me he’s good now. No disabilities in Heaven.”
Erin Beck, MPH, is a self-employed, independent journalist whose work can be found at erinbeckwv.com and on Patreon and Facebook. Her journalism, which often focuses on health disparities, social inequities, civil rights, and resistance and reform, has appeared in the Charleston Gazette among multiple other publications. The editor of the Shinnston News & Harrison County Journal, she is a strong believer in the power of human connection made possible through the platform of local journalism. A native West Virginian, her poetry has been published in the state’s Goldenseal magazine.
Editor’s Note: This story was updated at 8:40 a.m. on February 14 and again at 10:30 a.m. to include additional information provided by the DHHR updating hospitalization numbers.