'It's not like caregiving': Intensive mobile mental health teams are expanding in Arizona

Seated at a round table that holds a worn-looking, artificial Christmas tree, Brian Clark explains how he's trying to build up his confidence after some setbacks, including the death of his mother, who gave him the tree.

Listening and taking notes is Jacqueline "Jackie" Day, an independent living skills specialist who is part of a highly intense mental health team known as Assertive Community Treatment that's available 24/7 and works out of Phoenix-based Valleywise Health's Behavioral and Mental Health Center in Mesa.

Day is visiting Clark, 64, in his apartment as a regular check, one of several he gets every week.

Clark, who is a film buff, says in a soft voice that he'd really like to get a job at a movie theater but worries that they only want younger workers.

"I'm trying but I'm not very successful," he tells Day.

"You are going to find one that appreciates the elderly crowd," Day tells him.

Some mental health experts in Arizona say that in a system that continues to fall short of expectations with problems that include a lack of housing, a bed shortage and behavioral health staffing deficiencies, Assertive Community Treatment teams are doing some of the best work for patients over the age of 18 with serious and potentially debilitating mental illness.

The teams, using evidence-based practices, foster social connections, help people such as Clark with job searches and bring medications and other health services directly to where patients are living even when, in at least one case, that person is living on the street. The team also visits patients who are couch surfing and living in halfway houses. The 16-member team includes substance abuse counselors, an employment specialist, a therapist and two registered nurses, among others.

ACT teams are in place across the U.S. and expanding in some areas. New York state earlier this year announced it would become the first state in the U.S. to create youth ACT teams for kids ages 10 to 21. The aim is to let youths who are at risk of entering residential or inpatient psychiatric treatment receive services while remaining with their families and in their communities, New York state officials said in March.

"ACT teams are a way of keeping people successfully living in the community," said Will Humble, a former state health director who is now executive director of the Arizona Public Health Association. "Social isolation is a huge cause of all kinds of problems. It's a bad thing and it's underappreciated as a bad thing."

Though the teams usually include a housing specialist, most ACT team members, including Day, end up providing housing help since housing is a constant problem. She's trying to help Clark move to a lower-level unit in his apartment building because he's having trouble with the stairs. Clark has a Section 8 housing voucher, which makes it more difficult to negotiate, and his apartment's leasing office has not been responding to phone calls or emails.

"A lot of our members move around quite a bit, like the person I'm going to go help after this, she has transitioned living placements probably six times in August," Day said in a recent interview. "It could be their mental illness is inhibiting them in some shape or form. For some folks it's substance use, for others, it's both."

Expanding the number of ACT teams was required as part of a 2014 settlement to a landmark, three-decades-old class action lawsuit over mental health care in Arizona called Arnold v. Sarn. While ACT teams existed prior to Arnold v, Sarn, the settlement forced contractors providing the team services to meet a set of federal standards on factors like caseloads, staffing, the continuity of staffing, program size and the frequency of contact with patients.

The teams vary slightly by organization and are subject to routine program reviews provided through an outside nonprofit organization and scores are posted on the Arizona Health Care Cost Containment System website. During its last review, Valleywise had the highest score of any ACT team reviewed at that time. Scores are measured by adherence to the federal standards set out by the Substance Abuse and Mental Health Services Administration that aim to promote independence and reduce relapses.

The Valleywise team's goal is four in-person visits per week for an average of 120 minutes every week.

"We have some folks we see 14 times a week. We go to their house twice a day and watch them take their medicine. Or go to their house multiple times a day to make sure that they are taking care of their house and cooking safely and cleaning," said psychiatrist Dr. Beth Darling, the medical director of the Valleywise program. "There are other people who are doing really well and don't want us in their business as much anymore and we'll maybe see them once or twice a week. It's very personalized."

ACT teams are about to expand into northern Arizona

State officials say their latest data shows ACT teams cover 2,324 patients out of about 63,500 getting help for having a serious mental illness through the state's behavioral health system. Only 207 of the patients covered by ACT teams are in areas outside of Maricopa County, though that number is expected to increase, since five new ACT teams are scheduled to start operating in northern Arizona later this year.

"The notion of ACT teams came about as a salve, if you will, to soften the issue of releasing people without structure," said Chick Arnold, the retired Phoenix mental health attorney who in 1981 filed the Arnold v. Sarn lawsuit that alleged inadequate care for people with serious mental illness when he was the Maricopa County Public Fiduciary.

Dr. Len Stein, a Wisconsin physician who was one of the creators of the original concept of ACT teams, was a key witness in the Arnold v. Sarn case, Arnold said.

"It doesn't work for those who are most in need of attention. But it really wasn't intended to do that," Arnold said of ACT teams. "Their rules, or their suggested rules are to visit with clients three or four times a week. And that's extraordinary. In the absence of a structured living environment, structured treatment, that's critical."

Sommer Walter, whose 32-year-old brother Darren Beach has a serious mental illness, said her brother's ACT team is like family. Yet Walter said not all ACT teams are equal. Her brother had one that was not helpful and never found him housing so he was living on the street, she said, and he was arrested three or four times while under their care.

Once Walter became his guardian, she switched Beach to the Copa Omega ACT team operated by Copa Health. They found him housing and he had no more arrests while he was living in the community, which is one of the goals of the teams: to keep people out of jail, off the street and prevent psychiatric hospitalizations.

In the end, Beach was too sick, his sister said and he needed a more secure facility. But Walter said his Copa Health ACT team still provides help, even though they aren't obligated to do that. Beach is in the Maricopa County Jail right now following an incident at the Arizona State Hospital.

"I know that once Darren gets out of jail they'll continue to do everything they possibly can for him," Walter said. "They've stayed in touch, even though they technically didn't have to."

Darling said fentanyl is causing problems for many of the ACT patients. A couple have died. One has brain damage because he took fentanyl and then passed out in Phoenix's scorching summer heat. The team incorporates substance use disorder treatment into visits for patients who need it.

Forcing someone to take medications can be controversial

Laurie Goldstein, who is vice president of the Phoenix-based Association for the Chronically Mentally Ill said she sometimes hears complaints from families whose loved ones aren't getting adequate help from their ACT team. In one instance a family said the ACT team wasn't responding after 5 p.m.

"That's not right. They are supposed to be there whenever there's an issue," Goldstein said. "It's supposed to be individual treatment plans. … I tell them to you know, work up the chain of command. The good providers will say they'll look into it and they'll make an opportunity out of it and the lessons learned. Other providers will be really defensive and that's not helpful."

Goldstein has an adult son with a serious mental illness who 10 years ago had an "awful" ACT team but for the past decade he's been with a team provided through the Southwest Network that has been excellent, she said.

"The whole idea around it is when someone suffers from a serious mental illness, you wrap around services and do everything you can to try to keep them in the community," Goldstein said. "Part of that is, you know, if they need life skills because they don't shower or they don't know how to get food for themselves, all of that is supposed to be provided. And when it works, it works really well."

Goldstein said her son, who has schizoaffective disorder, has been hospitalized just once in the last decade, and that was because he was "cheeking" his medications — hiding them in his cheek but not swallowing them.

"They started crushing it and putting it in applesauce and saying, 'now you are going to sit with us for a half an hour and talk about your day,'" Goldstein said. "We work with him and try to make sure he's happy, too. So we have him on a baby dose of the med he doesn't like, and it seems to be working."

The idea of forcing someone to take medications that they don't want can be controversial. Groups such as Mad in America believe that the drug-based paradigm of care has failed society, and that scientific research, as well as the lived experience of those who have been diagnosed with a psychiatric disorder, calls for profound change.

Goldstein said she's heard such criticisms, but her son without question does better when he's on a good balance of medications, and he's not cycling in and out of mental health crises and hospitals. When he doesn't have a good balance, he can get paranoid, and in other instances, aggressive, she said.

Darling emphasized that while some patients with ACT teams have court-ordered mental health treatment, no one can be ordered by a court to be on an ACT team. If patients are reluctant to take medicine, Darling speaks with them about it in the framework of their achievements, as well as long- and short-term goals.

Medication does help with psychosis but it's not the only treatment, Darling emphasized.

"Without all of the other support it wouldn't help nearly as much," she said. "But it absolutely can help people improve their hallucinations, improve their cognitive functioning, improve their ability to recognize reality. … All of those types of things, as they begin to improve, help you to function. You can work, you can communicate with your family and things like that."

'It's not like caregiving'

Clark, who has schizoaffective and bipolar disorder, as well as autism, is one of 97 patients who get home visits from the Valleywise ACT team, typically multiple visits per week. The age of the patients ranges from 19 to 80.

Jody Ann Taylor, who is 66, gets at least one and sometimes gets two visits per day. On a recent visit from Day, she lamented not being able to get accepted into the Arizona Long Term Care System. The program had rejected her, Taylor said. Taylor is visually impaired because of an incident several years ago when she was stabbed while working as an armed guard. The crime upended her life, as she'd been planning on moving to Tucson and working as a Roller Derby referee at the time, she said.

Taylor, who has a small room with a single bed inside a dimly-lit Mesa apartment she shares with roommates, gets help from Day reading her mail. She never got the Supplemental Nutrition Assistance Program card that the state said they'd mailed, and she's been unable to get a replacement. Day is helping her with that.

The Valleywise team was created in 2016, two years after the settlement agreement, and is now one of 24 such teams in Maricopa County. There are also four ACT teams in Southern Arizona, one in Pinal County and the five first-ever teams in the northern part of the state, according to AHCCCS, which oversees the teams. Most funding for the teams comes from AHCCCS, too.

Valleywise is expecting to add another ACT team in 2024 for what they call forensic patients, which will be geared toward individuals with mental illness who have involvement with the justice system.

Clark has had a difficult time since his parents died in quick succession in 2019 and 2020. After their deaths, he began struggling and left the job at a local grocery store that he'd held and loved since 1999. His mental health crisis was so severe he was hospitalized in a psychiatric facility. He believes that having a job will provide his life with meaning, Day explained.

"He loved his job and he looks back on himself, and compares himself to his past self, which is hard," Day said.

Day picked Clark up from the hospital on Nov. 24, 2021, one day before Thanksgiving, he recently recalled. Clark has an impeccable memory for not only dates, but for the Phoenix light rail schedule, pretty much any detail about the Phoenix Mercury and for movies, including anything with his favorite actors — Jack Nicholson, Denzel Washington and Spencer Tracy.

After Day picked him up from the hospital, Clark became part of the Valleywise ACT community. The Behavioral and Mental Health Center in Mesa functions as a drop-in gathering place for some of the patients who on any given day stop by just to say hi to staff members of fellow patients, ask for additional help, or grab some free coffee or a hygiene pack.

"For a lot of folks we're their family, or an extension of that," Darling said.

Since Clark can drive, he goes often. On Wednesdays he attends bingo, followed by art class. The ACT team area of the health facility is decorated with art that patients have created. A group of patients gets together once a month to make pillows for people who are homeless out of plastic bags — the brainchild of one patient, who is an artist.

During a bingo session one recent Wednesday, team specialist Gabriel Baudenza called out bingo numbers. He also asked the 10 people in attendance to go around the circle and share something positive about their lives. One man said he just got a job in a thrift store and a young man wearing a baseball cap shared some artwork he'd done with the group.

One young woman said she'd made a new friend. Baudenza asked whether she met the friend online. The woman said yes, which led to a discussion about who to trust online. Day said ACT team members help the patients protect themselves against being financially abused, which is an ongoing risk.

During an art class with Day when patients decorated plastic foam pumpkins, one older woman handed out banana bread she'd baked and placed into individual zip-close bags.

"It's not like caregiving. We help people to take personal responsibility for themselves and their recovery," Baudenza said. "The strength is in the connections. These people are doing something for themselves to feel better."

Reach health care reporter Stephanie Innes at Stephanie.Innes@gannett.com or at 602-444-8369. Follow her on Twitter @stephanieinnes.

This article originally appeared on Arizona Republic: Arizona mobile health teams bring medication, services to patients