Judy Talbot is trying to get her daughter out of a state facility for Kansans with intellectual and developmental disabilities. Zack Zbeeb is trying to get his son into one.
But both ultimately have the same goal: to do a “medication washout” to determine whether the prescription drugs their autistic kids take are helping to control their recent dangerous psychotic episodes or actually causing them.
Zbeeb, from Wichita, wants his 15-year-old son to be weaned off his medications at a place like Parsons State Hospital and Training Center.
“We felt this was an appropriate place for my son to be in a 100 percent structured setting,” Zbeeb says.
Talbot got her 32-year-old daughter into a state facility, the Kansas Neurological Institute, in August after her daughter spent a week strapped to a bed in a hospital emergency room.
She thought KNI might be able to do a medication washout. Instead her daughter has received mainly nursing care, not the kind of specialized attention needed to adjust her medication regimen.
“She’s been there all this time and hasn’t seen a psychiatrist,” Talbot says.
Talbot and Zbeeb’s children both fall into a care gap for Kansans with a combination of developmental disability and mental health issues.
Providers on both sides say they’re ill-equipped to care for people with that combination of ailments, especially given cuts to Medicaid, which is one of the main sources of health insurance for people with developmental disabilities and mental illness.
Advocates for Kansans with developmental disabilities say they’re often excluded from mental health treatment facilities based on assumptions that they won’t be able to participate in counseling.
Zbeeb and Talbot both say the default treatment has been to medicate their children with various antipsychotic drugs, and both believe the drugs may be doing more harm than good at this point.
Eric Atwood, a psychiatrist at the Family Service and Guidance Center in Topeka, says that’s possible. Medications often are added during times of acute psychosis, he says, so as people begin taking multiple drugs “you end up with a complicated regime and it’s very difficult to know what’s doing what.”
A 2011 study found that people taking more than one antipsychotic medication were less likely to have a bad reaction to a medication washout than they were to the addition of another antipsychotic.
A medication washout might be the right call in some cases, Atwood says. But it’s not a decision that should be taken lightly.
“The question is, is it appropriate to clear the slate and see how one functions without any medication,” Atwood says. “That is always a very individualized decision between the patient and/or their caregivers and the treatment team.”
A new approach
Zbeeb says his family and his son’s caregivers have agreed that he should try a medication washout and that Parsons is the right place to wean his son off the medications and try a new approach. But Parsons, KNI and the state’s two mental health hospitals in Osawatomie and Larned are considered providers of last resort.
Amerigroup, the company that administers his son’s Medicaid coverage under KanCare, has told him his son must first try a psychiatric residential treatment facility, or PRTF, before the state facilities. There are about a dozen PRTFs across the state that provide inpatient rehabilitation for children and adolescents with mental health problems.
Zbeeb says he called one such facility, Prairie View in Newton, and was told his son could not be admitted because his IQ was too low. Employees there also said they would not do a medication washout.
He thinks he can get his son admitted at a different facility, Lakemary Center in Paola, but it has a waiting list and he fears Lakemary will not keep his son long enough to wean him off his medications.
“When you want to take off these medications, you cannot do it in a short period of time,” Zbeeb says, adding that it could take five to seven months.
Atwood says Lakemary is unique as a PRTF that specializes in treatment for children with developmental disabilities coupled with psychiatric illness.
He was not surprised to hear Zbeeb’s son might have to wait months to get in.
“We’ve had waiting lists for virtually all of the PRTFs,” Atwood says.
Looking for answers
Because of age restrictions, Lakemary and the other PRTFs are not a fit for Talbot’s daughter.
At KNI she has around-the-clock support and the care of a team that includes nurses, psychologists and behavioral technicians — but no psychiatrist, which is the medical specialty with the most expertise in antipsychotic medications.
KNI and Parsons serve Kansans with intellectual and developmental disabilities. Osawatomie State Hospital and Larned State Hospital serve Kansans with severe and persistent mental health problems.
Talbot says KNI employees have been unwilling to try to “reset” her daughter’s medications. She says her daughter would see a psychiatrist from outside the facility soon and Talbot would explore making a medication washout part of her plan to transition back to her home.
“I just don’t want to be thrown out there and have the same thing (happen),” Talbot says, referring to her daughter’s extended emergency room stay in August.
Eric Harkness, president of the Kansas chapter of the National Alliance on Mental Illness, is a former psychiatric pharmacist who has taken antipsychotic medications himself.
Harkness says any change in antipsychotic medication should be done in close consultation with a physician or an advanced practice registered nurse.
“It is my understanding that if an antipsychotic medication is improperly discontinued or stopped, a psychotic rebound is highly likely,” he says.
A medication washout should be done by slowly eliminating only one medication at a time, he says, while taking note of dosage, what time of day it was taken and any changes in mood or behavior.
While a medication washout can be done at home, an inpatient facility is a better setting, Harkness says.
Access to such facilities in Kansas is limited, especially for adults with intellectual or developmental disabilities. A new 72-bed hospital in Olathe, Cottonwood Springs, opened last year.
But that’s the exception. Kyle Kessler, executive director of the Association of Community Mental Health Centers of Kansas, says there has been an “incredible reduction of inpatient community beds” in recent years as hospitals close psychiatric units in favor of more profitable services like oncology.
Talbot says she plans to work with her daughter’s KanCare company, Sunflower Health Plan, to find a medication solution for her daughter. Sunflower Health Plan partners with a subcontractor, Lifeshare, which specializes in caring for people with developmental disabilities.
Lifeshare uses a program called Pathways designed to help people with disabilities live independently, in part by managing their emotional and behavioral health.