Like most moms, Judy Talbot has photos and videos of her daughter on her smartphone.
But some of the images Talbot keeps on her phone show her daughter smacking herself in the face repeatedly or strapped to a bed, writhing against restraints with bruises up and down both legs.
“From her kicking,” Talbot explained.
Talbot’s daughter, Jill, is 32 and has autism and post-traumatic stress disorder.
Because of that combination, Jill recently spent six days isolated in the emergency department of a Kansas City area hospital while Talbot and Jill’s case manager scrambled to find her a better option.
Jill was taken to the hospital because she was having a psychotic episode. She had become violent, even with her mother. But the hospital, Shawnee Mission Medical Center in Shawnee Mission, Kansas, wouldn’t admit her to its psychiatric floor. Talbot said she was told Jill’s developmental disability would prevent her from participating in group therapy the hospital requires as part of psychiatric treatment.
Hospital staff and Talbot called one psychiatric facility after another, looking for one that would take Jill. All declined.
So Jill stayed for almost a week in a holding unit in the emergency department that Talbot said usually is reserved for criminals. She was strapped to the bed for part of each day.
“It was absolutely the cruelest thing I’ve ever experienced,” Talbot said.
Case managers and other advocates for Kansans with developmental disabilities say it’s not an isolated incident.
Chad VonAhnen, executive director of Johnson County Developmental Supports, said Kansas has for years
failed to provide quality care options for people with intellectual and developmental disabilities (I/DD) in psychiatric crisis.
“This isn’t a new issue,” VonAhnen said. “It’s been something our system’s struggled with for a long time.”
Rick Cagan, executive director of the Kansas branch of the National Alliance on Mental Illness, agreed.
“There’s been a longstanding, shall we say, ‘standoff,’ as I have viewed it over the 11 years I have been here, between the intellectual and developmental disability community and the mental health community about who’s responsible for these individuals,” Cagan said. “Psychiatric disorders, they affect everyone. You may be a person who is labeled I/DD for one reason or another, but that does not make you immune to being affected by depression or anxiety or any of the other disorders.”
Efforts at reform
Through the years, several efforts have aimed to bridge the gap between the two communities.
Cagan spoke of an initiative between community mental health centers and Interhab, an umbrella agency for developmental disability service providers.
VonAhnen said his community developmental disability organization, or CDDO, and others like it used to meet regularly to discuss the issue as part of a Kansas Department for Aging and Disability Services work group. But that group hasn’t met for years.
Meanwhile, he said, the state’s mental health system has been “hemorrhaging” and developmental disability support has been stagnant for years.
That has left both systems less equipped to handle Kansans with disabilities in crisis.
“This is a significant issue for all of us,” VonAhnen said. “With the erosion of resources, it’s becoming more and more of a concern.”
Amy Campbell, a lobbyist for the Kansas Mental Health Coalition, noted that a reduction in beds at the state’s two psychiatric hospitals has forced Kansans in crisis to often wait days for admittance to one of those facilities, even if they don’t have a developmental disability.
But she also said a special committee set up to review the state’s mental health system “identified psychiatric services for people with I/DD as a significant gap in our continuum.”
Rennie Shuler-McKinney, director of behavioral health clinical services at Shawnee Mission Medical Center, said the hospital’s psychiatric program provides treatment only to adults who voluntary request it and are able to participate in group therapy.
People unable to consent — including Kansans with intellectual and developmental disabilities — should be assessed for placement at state hospitals or sent to private-sector facilities that take involuntary patients, she said.
“Due to the moratorium placed on admissions to Osawatomie State Hospital in June 2015, Shawnee Mission Medical Center is experiencing a significant increase in the overall time patients spend in our emergency department as individuals await the availability of an involuntary bed at another facility,” Shuler-McKinney said. “We have implemented numerous initiatives to meet the needs of these individuals.”
But several case managers said it’s hard to get a spot in state facilities that are at or near capacity and nearly impossible to get a private mental health facility to take a patient with developmental disabilities.
Hopes for KanCare
The gap in psychiatric care for people with developmental disabilities predates KanCare, Gov. Sam Brownback’s switch to managed care Medicaid. But KanCare was touted as the sort of system that could help solve such problems by eliminating barriers between health care providers and coordinating patient care on an individual basis.
People in the developmental disability community generally resisted including their support services in KanCare. But VonAhnen said there was hope that the three private insurance companies tapped to administer the program would have some answers for developmentally disabled Kansans looking for acute psychiatric care.
“If there was really any area where we felt there was some potential in long-term support services (under KanCare), this would have been the one,” VonAhnen said. “We’ve had good interactions with the managed care companies, I’d say. But in terms of any new solutions or creating anything new for people, from what I have seen they’re running into the same issues we are, where these types of experts just don’t exist.”
Todd Brennan, a case manager with Jenian Inc. in Johnson County, said he has an I/DD client named Suzette who recently became uncharacteristically violent and destructive. After struggling to find her psychiatric care, he turned to her KanCare company, Sunflower State Health Plan, for help.
The initial response, he said, seemed encouraging.
But they eventually just said Suzette would need a formal mental illness diagnosis and made her an appointment for three months later.
“Meanwhile, every day (her behavior) was getting more extreme and more dangerous for her and the people around her,” Brennan said.
Brennan was able to get Suzette admitted to a Johnson County hospital for treatment of chronic health conditions, and she was sedated.
Most Kansans with I/DD have health coverage through KanCare, but Brennan said the situation for those with private insurance is not much better. He said a client named Mallory, whose parents had “tremendous insurance,” also was shut out of one psychiatric unit after another because of her autism during a time when she was “just really manic.”
“Basically whenever you take an I/DD person to these places, they’ve already got a preconceived notion they can’t help an I/DD person and they’ve definitely got a preconceived notion they can’t help a person with autism,” Brennan said.
After nearly a week of sleepless nights for Mallory’s parents, their insurance finally paid off in the form of an emergency outpatient visit with a local psychiatrist that Brennan said never would have happened under Medicaid reimbursements.
Like the hospital that treated Suzette, the psychiatrist sent them home with prescriptions for enough drugs to sedate Mallory.
“They did get the psychosis to stop, but she’s never really been the same,” Brennan said.
State facilities a last resort
Talbot said the same thing about her daughter, Jill, after her lengthy stay in the emergency department.
Jill’s case manager, Marilyn Kubler, took the pictures and videos of Jill straining against the restraints and sent them to KDADS Secretary Tim Keck.
Keck arranged to first get Jill taken to Parsons State Hospital and Training Center, one of two state residential facilities for Kansans with developmental disabilities, until she could get formally admitted a day later to the other facility, the Kansas Neurological Institute in Topeka.
“I have to say that Secretary Keck was very, very helpful,” Kubler said. “He helped to smooth this, but it wasn’t very fast.”
Kubler said she contacted Keck on a Wednesday and Jill was admitted to Parsons on Sunday.
Angela de Rocha said KDADS worked as quickly as it could, within agency policies designating that state hospitals are only used as a last resort.
“Our goal is to ensure every attempt is made at community placement before consumers are admitted to state hospitals,” de Rocha said via email. “As part of our process KDADS verifies community placements are not available before admission. Once that is determined, and the providers cannot find a solution, the agency becomes involved in resolving the situation.
“In this case it became apparent a community placement was not an option, so Secretary Keck took swift and decisive action to ensure this consumer’s needs were met.”
Talbot said Jill is doing better at KNI, where her condition has stabilized while she receives 24-hour care and does not require restraints. Talbot has been told her daughter may be able to come home in a month, maybe two.
But she said Jill regressed developmentally during her six days in the hospital emergency department.
During a visit this week at KNI, Talbot tried to show Jill pictures from a small photo book — snapshots of happier times when Jill posed at the beach or dressed up for Halloween.
Jill looked up briefly from the bed in the corner of the room where she was curled up. Then she laid her head back on the pillow.
“She’s just not herself,” Talbot said.
Andy Marso is a reporter for KHI News Service in Topeka, a partner in the Heartland Health Monitor team. You can reach him on Twitter @andymarso