Dearth of treatment services, ‘outmoded’ approach plague dually diagnosed patients

Laurie and Chuck Goldstein hold a newspaper clipping of their son, who is diagnosed schizoaffective and has battled with substance abuse. The Goldsteins fought for 15 years to get their son the treatment he needed to live a better life. (Photo by Katie Campbell/Arizona Capitol Times)

Treatment services are severely lacking for people who are simultaneously diagnosed with mental illness and substance use disorders, and what some criticize as an outdated approach throws up obstacles in times of need.

Dual diagnosis patients may turn to powerful opioids and other substances to quell symptoms ranging from depression to severe hallucinations and paranoia.

And for the people closest to them, the result could be alarming.

Like when Laurie Goldstein’s husband delivered $200 worth of groceries to their son’s condo, and eight hours later, he called saying he had nothing to eat. What happened to all of that food?

“It was poison,” he told her. “I had to throw it all away.”

Or, the combination of psychosis and substances could be dangerous.

Like when Chuck Goldstein returned from the hospital one day to find his son spreading gasoline around the base of their Paradise Valley home. He was going to kill the ants, his son said.

Dr. Michael Franczak, director of population health at Partners in Recovery Medical Services, said providers in Arizona are risk-averse, and the array of dual diagnosis services is lacking.

The number of available beds statewide is far fewer than the number of people clamoring for treatment, and emergency rooms and residential treatment are overused without long-lasting results.

He said the American Society of Addiction Medicine has assessed the types of services this population needs, but “while they have described what is needed, it’s not readily available.”

And even what is available may be less than ideal, like residential treatment centers located in communities struggling with their own drug problems.

“What’s available isn’t a place that anyone of us would send our loved ones to,” said Dr. Bobbie Erke, director of integrated substance recovery services at Partners in Recovery.

That despite advocates’ frequent complaints that access to care can be hard to come by, many of which were heard during a public meeting in November to determine the best use of available space at the Arizona State Hospital.

Providers turn patients away when they can’t or won’t get clean. Treatment is expensive even with insurance. And parents are left to defend themselves against their own children as they navigate a system with limited space and an increasingly needy population.

15 years and thousands of dollars later

The Goldsteins’ son, Alex, is a different person now. At 29, he’s finally been able to enjoy a year or two of relative normalcy. His large stature, all 6-foot-3 of him, doesn’t scare his mom anymore.

But it took 15 years and hundreds of thousands of dollars to get him to this point.

Laurie and Chuck Goldstein (Photo by Katie Campbell/Arizona Capitol Times)

Laurie Goldstein reads off one failed treatment program after another – she keeps detailed timelines, listing all the times she was told her son was “more than they could deal with.”

Her son is diagnosed schizoaffective, a condition combining schizophrenia and a mood disorder. Out of desperation to escape the taunting voices in his head and feel normal, he started to self-medicate with marijuana at 14. Eventually, that escalated to heroin.

When he was turned away from treatment, his family was left with few options.

Chuck Goldstein said they couldn’t simply accept their son back into the fold.

Living in the same house wasn’t a viable option. They had to put locks on all of the doors or else find him standing over their beds in the middle of the night. They installed a security system with cameras all around the house. On at least one occasion, he brought someone home off the street and used heroin with the stranger.

Franczak estimated that about half of people with mental illness also have a co-occurring substance use disorder. They could turn to alcohol or cocaine, but the most serious cases involve opioids, which induce a painful withdrawal. So, when doctors cut them off from prescription drugs, they turn to the streets.

And that’s where Franczak said dual diagnosis patients become the “worst prescribers in the world” because they choose substances that ultimately exacerbate their psychosis.

Dr. Darwyn Chern, medical director at Partners in Recovery and vice president of the Arizona Society of Addiction Medicine, said people with mental illness are often prescribed medications that interact with opioids. That interaction can prove lethal.

Patients may not even be made fully aware of the possible repercussions of using certain drugs, like pain medications, and can become addicted unknowingly. They stop using the prescribed medication and, find themselves with severe back pain and vomiting from withdrawal and work desperately to get their hands on anything that will stop it.

The chemical stress becomes “an uncontrollable monster,” Chern said.

He said he gets calls from people like this all the time, seeking medication-assisted treatment, but he has struggled to find them help.

Plenty of care providers are licensed to treat substance use disorders, he said, but not everyone is willing to do it.

He thinks they’re afraid.

Relapse and ‘recovery’

Dick Dunseath, whose mentally ill son is a dual diagnosis patient with schizoaffective disorder and a substance abuse disorder, testifies November 17 during a public meeting to determine the best use of available space at the Arizona State Hospital. Dunseath advocated for expanded services for dual diagnosis patients who struggle to find treatment. (Photo by Paulina Pineda/Arizona Capitol Times)

Dick Dunseath is the father to a dual diagnosis patient, and he’s tired of hearing the word “recovery.”

He said society props up the rare success stories of people recovering from their illness, going on to live wonderful lives with families of their own.

“There’s this notion that anybody with schizophrenia can do that, and if they aren’t succeeding, they’re choosing not to comply with the rules,” he said. “And if only they did comply with the rules, they would recover. I’ve heard that said of my son many, many times. This mythology is the first obstacle to facing reality.”

His 39-year-old son’s reality is one of constant uncertainty. He, too, is schizoaffective, and he tells his father meth makes him feel like he’s on top of the world.

He lives at a house run by Marc Community Resources, one of the few programs that has come through for Dunseath’s son.

Dunseath said most providers he’s encountered want the easy cases because they work out better for them financially – more challenging cases, like his son, cost money.

He recalled residential treatment facilities that wouldn’t let his son come back if he left to get high. If he wasn’t there at midnight, Dunseath said, the provider might not get paid for that day.

“In the residential treatment programs, we’re churning people,” he said. “And when they get kicked out of those programs, there’s no place to go.”

Holly Gieszl, an attorney who represents dual diagnosis patients trying to get treatment, said that trend represents the continued stigmatization of addicts. Demanding detox before mental health treatment, she said, is “outmoded and ineffective.”

“It’s very easy to write off people as druggies,” she said, “to say, ‘They just need to detox, then they’ll be worthy of us treating their mental illness.’”

Gieszl said that’s indicative of the disconnect between “the narrative at the ivory tower level and the reality in the field.”

She said the concept of dual diagnosis poses a problem to begin with. The term suggests the two issues are in separate silos, and their treatment is kept separate as well.

Meanwhile, patients and families navigating a complicated system of care may be operating under the misconception that getting clean is always the first step to treating psychosis.

Heidi Capriotti, spokeswoman for the Arizona Health Care Cost Containment System, said there are no sobriety requirements for Medicaid patients seeking behavioral health treatment.

“That should not be a barrier to treatment,” she said.

If dual diagnosis patients on AHCCCS or their families have concerns that providers may be imposing such a requirements, Capriotti said they should first take the matter to their managed care plans, or insurance providers. And if the issue needs to go further, she said reports can be submitted to AHCCCS online.

“Detox does not always come before people can receive treatment,” she said. “Sometimes, there are co-occurring issues, like depression and alcohol-use co-occur often. Psychosis and meth-use might co-occur, and detox is only the first step in severe, life-threatening situations.”

Jeff Schulman testifies November 17 during a public meeting to determine the best use of available space at the Arizona State Hospital. His daughter has been deemed seriously mentally ill and continues to struggle with drug addiction. (Photo by Paulina Pineda/Arizona Capitol Times)

But Jeff Schulman’s 28-year-old daughter is on AHCCCS, and he said detox has been required of her. He said providers have blamed her psychosis on drugs and refuse mental health treatment up front. The court declared her seriously mentally ill less than a year ago, but she has battled substance abuse since she was 15.

But she won’t acknowledge her illness, and can act the part of a normal young woman when she needs to convince someone she doesn’t belong in treatment.

Even if Schulman could get to the point where he could get treatment for his daughter, he said there are limited options with AHCCCS, leaving out the pricey facilities that could offer long-term care like his daughter needs now.

Capriotti said patients deemed seriously mentally ill have special rights and access to special assistance, a program designed to help them navigate the system and get care.

But for those like Schulman’s daughter who do not believe themselves to be ill or who do not seek treatment, there’s no forcing them to get help.

“Adults have rights, and they have the right to make their own decisions,” Capriotti said.

Dunseath has been frustrated by that explanation.

“We don’t say to somebody with Alzheimer’s, ‘Well, you have your rights, and if you want to walk out the door and disappear on the streets, that’s fine,’” he said. “And if they pee on the floor or do something erratic, we don’t kick them out.”

But we do with the mentally ill, he added, and we let them disappear on the streets – or worse.

“When you don’t hear from your child and you know that they’re doing drugs, you really dread any calls that come in after 11 or 12 at night,” Schulman said. “You’re just continually afraid it’s going to be the police telling you to come identify your daughter’s body.”

A previous version of this story incorrectly reported that AHCCCS required dually diagnosed patients to detox before receiving mental health treatment.