Missourians with developmental disabilities languish in hospitals, jails and shelters
On a Friday afternoon in late December, Geri Curtis received a disturbing phone call informing her she had only five days to find a new home for a developmentally disabled person.
As part of her job as public administrator for Livingston County, she had become legal guardian of a person with severe developmental disabilities two months earlier. The person, autistic and unable to speak, was living in a residential support facility in Jackson County.
Soon after she became the legal guardian, Curtis received notice from the facility that the person had to move within 30 days because of aggression.
Despite the efforts of the case manager at a regional office of the Missouri Department of Mental Health, nothing was available. Just before Christmas, Curtis got the call informing her that she had just five days left to find a new residential placement.
When the five days passed, the provider took the person to a hospital emergency room.
And that is where they have lived since.
“Our hospitals are not dumping grounds for these individuals but the hospitals are full of our clients,” Curtis said.
At the beginning of March, there were 650 adults with developmental disabilities in what the Department of Mental Health calls “inappropriate placements.” There are 39 residing in hospitals, plus a handful in jails and homeless shelters, representing the most critical cases impacted by widespread staffing shortages among local non-for-profit organizations.
“This is a major problem,” Curtis said, “and it is not going to be fixed if we all put our head in the sand.”
Two initiatives are underway to fill those vacancies. Associations representing those local agencies have launched a statewide recruitment campaign for direct service employees. And they are asking lawmakers to increase the base wage for those jobs from $15 to $21 an hour, as recommended by a study completed last year.
When lawmakers return to work this week, a top agenda item for the Missouri House will be completing work on its revisions to Gov. Mike Parson’s $51.6 billion state budget proposal. The higher rates would add $400 million – including $185 million in general revenue – annually for the program already expected to cost $1.75 billion in the coming fiscal year.
At Community Opportunities in Troy, administrator Mary Sullivan-Thomas has a waiting list for services that fluctuates between six and 10 people with developmental disabilities. She would hire 10 more staff if she could find applicants.
There are hundreds of other Missourians in limbo because the mental health department itself is dealing with massive staffing shortages. As of early March, there were 229 people in county jails deemed incompetent to stand trial with court orders for treatment.
Because it sees no chance of getting large numbers moved to its hospitals, the department is asking for legislative authority to deliver treatment in the local jails or on an outpatient basis if the person can be safely released.
At a cost of $2 million, the department will contract with providers for programs in St. Louis, St. Louis County, Greene County and Jackson County and create two mobile teams, Director Valerie Huhn said.
Clay County Sheriff Will Akin, who on March 9 had five people detained in his jail awaiting transfer to the department, is lobbying to be added to the list. Keeping those people detained is extra work for his jail officers, he said, and is not in the best interest of those who desperately need help.
“That’s a challenge for us,” Akin said, adding that these individuals are in need of treatment “and we’re not able to get it to them, because we don’t have those capabilities.”
‘Live their best life’
Kristin Nobus worked for Sam’s Club for 17 years before she took a job as a community skills teacher at Community Opportunities about a year ago.
She works in the day center on the campus that also includes two group homes and administrative offices. A typical day, she said, begins with exercise videos and then they pack and deliver Meals on Wheels in the community.
Sometimes she is assigned to help a client in the evening.
“We usually fix dinner and help them get their showers and just get them ready for bed so that they can have a nice relaxing evening,” Nobus said.
She was recruited, Nobus said, by a former co-worker. The pitch – novel experiences, clients with sweet personalities and less stress – was attractive, she said. The pay is comparable to her wage at Sam’s, she said, and the work atmosphere is supportive.
“It is not like people are trying to stab you in the back here; everybody just works together as a team,” Nobus said.
Community Opportunities provides rooms for 10 adults in two group homes and supports 13 more individuals living in apartments and homes in the community among its 300 total clients.
A direct support employee doesn’t need any special credential, she said, but must be patient, have a good sense of humor and be prepared for anything that can happen to a person in life.
“As a direct support provider, you’re a counselor, a teacher, a nurse, a chauffeur, you have all these different roles,” Sullivan-Thomas said.
The best candidates for employment with an agency like Community Opportunities, Sullivan-Thomas said, are people comfortable providing one-on-one help to others. The issue, even for the best candidates, is the starting pay.
“Right now, you can make 15 bucks an hour working at Starbucks,” Sullivan-Thomas said. “So, do you want to work at Starbucks and get 15 bucks an hour? Or do you want to work in a day program with people with developmental disabilities and help them in the restroom?”
The state contracts with almost 1,200 local agencies to serve adults with developmental disabilities. Some, like Community Opportunities, are supported by local property taxes still identified by the 1960s authorizing legislation as “Senate Bill 40” levies.
The Division of Developmental Disabilities provides services to almost 41,000 Missourians, including more than 7,600 receiving residential services in shared or supported living or group homes. The division’s funding is a mix of general revenue and local tax money used to leverage federal matching funds.
The mental health department’s budget request didn’t include funding to implement the new rate study because it was completed too late in the year, Director Valerie Huhn said in an interview with The Independent. But the budget does include initiatives to help reduce staffing needs and incentives to increase training and retention.
One aspect of what the department calls value-based programs would use remote monitoring instead of staff for overnight shifts. The clients have greater independence and the agency can redirect staff to more productive work, Huhn said.
“You are taking that person out of the home and taking eight hours, seven days a week, where they can work another shift for someone else and give them access to care,” Huhn said.
Child care providers and nursing homes are among the other employers competing for the workforce with experience and training suitable for developmental disabilities programs, Huhn said. There are very few spare employees in Missouri’s tight labor market – unemployment in January was 2.7%, with only two counties above 5%.
“Our labor force that we utilize is in a very high demand right now,” Huhn said. “And there’s a lot of fields that can be less demanding than what we are asking of people.”
In Troy, Sullivan-Thomas must compete with the St. Louis-area labor market. If someone is a good fit for the job, she said, they usually stay with the agency a long time.
“When we’ve looked back at our statistics, it seems as though if people are here two years, then they tend to stay,” she said.
When agencies don’t have staff, or people who need help can’t navigate the service network, local agencies face enormous challenges. Community Resource Center in Chillicothe operates a shelter with 12 beds, and two are currently being used by men with developmental disabilities, Director Katie Hobbs said.
One of the men is estranged from his family and is not enrolled in disability or medical programs. Hobbs said she has been working with him to obtain services,but he needs a permanent placement.
“I can’t just keep him here, but it is going to be very hard,” Hobbs said. “A lot of facilities will not take him without a guardian. He does not have $1,500 to get a lawyer.”
When the division has a client in a homeless shelter, Huhn said, it will keep in daily contact to check on the safety and welfare of the person as it seeks a placement.
“We call them critical for a reason,” Huhn said.
The fate of the rate increase could depend on how willing the House Budget Committee is to dip into the massive surplus of general revenue and other funds that is approaching $7 billion.
In a recent hearing, state Budget Director Dan Haug warned against committing the surplus to recurring costs.
“‘Those are one-time funds we would be very concerned with using for ongoing provider rates,” Haug said.
Several lawmakers appeared ready to fund higher rates. Rep. Steve Owens, R-Springfield, asked whether the state should pay more if current rates weren’t enough to fill the jobs.
“If the funds are there, obviously we are not offering a price, a payment schedule enough to attract those people,” Owens said.
And Rep. Deb Lavender, D-Manchester, said it’s time to tap the surplus to retain staff that could be attracted away.
“If we don’t pay these people now, we are not going to have them next year,” Lavender said.
Sullivan-Thomas said she sees higher rates as the only way she’ll fill her vacancies.
“It’s frustrating that we don’t get the appropriations that we need from the legislature to have adequate funds to hire more staff and to pay them commensurate with the responsibilities of their positions,” she said.
'Not a safe environment'
On an average day, the Clay County Jail has eight detainees with behavioral health issues waiting for a bed to come open in a Department of Mental Health hospital. Some, like one transported to the department on Feb. 28, have a dual diagnosis of a developmental disability and behavioral issues.
“Just being ruled incompetent to stand trial can take an unacceptably long time,” Clay County Sheriff’s Department spokeswoman Sarah Boyd wrote in an email. “One man who has autism and is nonverbal was booked into the jail on Nov. 13, 2021, and wasn’t declared incompetent until Nov. 10, 2022. With much pleading by our detention staff, he went to DMH on Feb. 28, 2023.”
The inmates must be isolated from the regular jail population, which often means confinement to a cell 23 hours each day.
“Many of them have severe hygiene issues, from refusal to bathe to spreading feces,” Boyd wrote. “One inmate awaiting DMH treatment must be regularly removed from his cell – which is often a physical struggle – so staff can clean the feces from it.”
Those issues are why Akin is so eager to join the program for jail-based competency restoration.
“It’s not a safe environment for the inmate,” Akin said. “It’s not a safe environment for the employees. And it’s not a safe environment for those who are in the general vicinity, which are, you know, other inmates.”
The Missouri Association of Counties is pushing for lawmakers to expand the services and resources available to treat mental illness. Through its Policing, Justice & Mental Health Steering Committee, it says the increasing number of people with behavioral issues is overwhelming the courts, public administrators who are guardians of last resort and jails.
The backlog of detainees waiting for treatment is a symptom of the larger community problems of mental health, the committee states in a 14-page discussion of the issue delivered to lawmakers earlier this year.
“Individuals with mental health challenges and substance use issues can be found in every system that touches the justice system, from law enforcement to community-based placement options,” the report states.
The jail-based program’s plan is to treat 80 detainees each year in jails or while released on bond with a goal of reducing the backlog to 25 or fewer waiting for treatment. To make space in hospitals and speed that process, it will combine residential facilities in Sikeston and Poplar Bluff, currently serving people with severe developmental disabilities and use one as a pre-release center for mental health patients on long-term commitments, Huhn said.
That will free beds in existing facilities, she said. The people transferred in will be ready for release but without an appropriate placement ready to receive them, she said.
In a budget hearing, Huhn said she was pleased at how eager lawmakers were to get the jail-based program in their communities during a public hearing on the statutory bill needed to allow the program. Current law requires the department to provide court-ordered treatments in its facilities.
Akin said he’s ready to designate a section of his jail as a treatment center, and accept detainees from smaller counties in northwest Missouri as a regional hub.
“I’m willing to try something different,” Akin said. “Because what we’re doing, what we’re working with right now, is not the best way.”
This story was originally published by the Missouri Independent, part of States Newsroom.