How do you define hope?
For Marcia C., hope is the possibility that her mentally ill 29-year-old son will stop brandishing a very real machete at the scary stranger he sometimes sees riding on the back bumper of her car. That he will accept as unlikely that invisible police officers in invisible suits are infiltrating his apartment. That he will recognize the terrifying space aliens in the nearby woods for the hallucinations they are. That he will stop locking himself in his closet for days at a time. And take his anti-psychotic medications.
“My son doesn’t believe he has schizophrenia,” Marcia said in a recent interview. “He says he made it up.”
For others, the face of hope is perhaps less dramatic but no less compelling.
For Jane Treworgy, hope comes from knowing that she’s taking her medication as ordered every day — a necessity for keeping the 53-year-old’s psychotic symptoms at bay and avoiding hospitalization.
For 27-year-old Michael Stevens, who suffers from clinical depression and severe bipolar disorder, hope is the opportunity to live securely in his own modest apartment, the possibility of finishing his high school education, and the gift of having someone to talk things over with.
And for 48-year-old Kevin Peabody, diagnosed with schizophrenia and addiction, hope comes in the form of keeping his slender finances in order, holding down a volunteer job at the shelter where he lives, and summoning the one-day-at-a-time courage to meet the challenges of living sober.
In the lives of these Bangor-area residents, hope is personified in the members of the Assertive Community Treatment, or ACT, team. For a little more than $1,500 per patient per month, the cadre of mental health professionals wraps comprehensive support services around adults with severe and persistent mental illness and helps them live safely in the community with independence, security, dignity and hope.
This year marks the 15th anniversary of the adoption of ACT teams in Maine. And with support growing in Augusta for closing the 100 inpatient beds at the Dorothea Dix Psychiatric Center in Bangor, the ACT team model could play a more prominent role in ensuring the health and stability of people with mental illness.
The model was established in Wisconsin in 1984 and has won the endorsement of state and federal funding agencies, private foundations, academic researchers and professional groups.
To comply with standards set by the federal Substance Abuse and Mental Health Services Administration — and in order to get paid for the services they provide — ACT teams must include a psychiatrist or other clinician who can prescribe medications; a psychiatric nurse; a licensed substance abuse counselor; an employment expert; a peer specialist who has navigated the shoals of mental illness and now helps others; and a case manager who ensures that each participating client makes the best use of all available services.
“The science proves this model of intervention is efficacious,” said Ron Welch, director of the Office of Adult Mental Health Service in the Maine Department of Health and Human Services. “This is the highest level of community-based service before hospitalization. It is a crucial part of the array of mental health services, just as hospitals and group homes are.”
ACT team services are largely preventive in nature. The overall goal is to keep the most fragile clients stable, mentally and emotionally; to detect and intervene early on if an individual is losing ground; and to keep clients with mental illness out of local emergency rooms, jails and expensive inpatient settings.
There are 10 ACT teams in Maine, working primarily in the state’s population centers where adults with serious mental illness tend to live.
Each team is able to care for between 25 and 40 clients, depending on the clients’ needs. For most, the services are paid for by MaineCare, the state’s Medicaid program for low-income and disabled residents.
In 2010, MaineCare paid upwards of $11 million for ACT team services, about one-quarter of that coming from state taxpayer dollars and the balance in matching federal funds. For a handful of patients who did not qualify in 2010 for MaineCare, the state’s general fund paid about $400,000 for ACT team care.
In the Bangor area, the ACT team operates out of the Community Health and Counseling Services agency, a nonprofit organization that has served area residents for more than 100 years. The CHCS team currently cares for 57 high-needs, high-risk clients, according to program manager Mary Ellen Quinn.
“We work very hard to build relationships with these clients so people come to believe in us as professionals and as people who care about them,” Quinn said.
While a primary goal of ACT teams is to ensure that clients take anti-psychotic medications as they are prescribed, Quinn said, other services are vitally important, such as one-on-one and group counseling, assistance with financial management, resolving problems with programs such as food stamps and legal services, interven-ing in disputes with landlords and roommates, encouraging healthy diet habits and modeling appropriate social skills.
“You really want to help people build a life,” she said.
The program also includes 24-hour crisis access to ACT team members.
The majority of patients chose to participate with ACT-level services, recognizing the value of the added support. But for some patients whose histories include repeated hospitalizations, acts of violence or run-ins with the law due to medication non-compliance or a general lack of supervision and support, participation in ACT team services may be court-ordered for up to one year at a time.
If the patient fails to comply with any aspect of ordered care, including prescribed medications, the ACT team is authorized to call the nearest law enforcement agency and have the patient admitted involuntarily to inpatient care.
Marcia C., who asked that her son’s identity and her own be protected for this story, said her son has been through court-ordered ACT intervention twice. Without the threat of re-hospitalization, he doesn’t take his medication and quickly falls into psychosis, she said.
“I can always tell when he’s going off his meds. He hallucinates and gets paranoid,” she said. “They [members of the ACT team] come to his house once a day and give him a pill. They know they have to stand there and watch him swallow it.”
The ACT team also ensures that her son participates in regular counseling sessions, and it keeps an eye on his general behavior and functionality, Marcia said.
“I would pray for God to take the schizophrenia away from my son, but that would be like a miracle and I don’t know that I’m worthy of a miracle,” Marcia said. “So I pray instead for my son to understand someday that he is ill and needs his medication.”
Until that happens, she said, “ACT is there every day for him.”
Promise of community care
Statewide, thousands of Mainers are living with devastating diagnoses such as schizophrenia and bipolar disorder, characterized by psychotic symptoms including delusional thinking, visual and auditory hallucinations and pronounced mood instability. Co-occurring addictions to drugs and alcohol are common.
In the past, many of these individuals would have spent long months and even years — decades, lifetimes — living at one of Maine’s two public psychiatric hospitals: the Bangor Mental Health Institute, now the Dorothea Dix Psychiatric Center, or the Augusta Mental Health Institute, now the Riverview Psychiatric Center.
With the national wave of deinstitutionalization in the 1970s and 1980s, large-scale residential institutions such as BMHI and AMHI discharged the great majority of their patients with the promise that outpatient agencies would provide the services needed to keep people with mental illness living safely and productively in the larger community. Only the very sickest, and those who pose an immediate danger to themselves or others, now stay in inpatient care for more than a few weeks at a time.
In addition to the scaled-down Dorothea Dix and Riverview facilities, Maine now boasts two private nonprofit psychiatric hospitals — The Acadia Hospital in Bangor and Spring Harbor Hospital in Westbrook. But private hospitals specialize in short stays; patients needing longer hospitalization for mental illness tend to be re-ferred, still, to the state hospitals.
In recent months there has been discussion in Augusta about the possible closing of the remaining inpatient units at Dorothea Dix Psychiatric Center. That would eliminate about 100 psychiatric beds in the state and increase pressure on other hospitals as well as on community service agencies, whose aim is to keep patients sta-ble, functional and out of the hospital in the first place.
While there is no immediate plan to expand ACT services in the Bangor area or farther north in Maine, CHCS director Dale Hamilton said strengthening community-based mental health services in general should be part of any long-term strategy. Recent budget-cutting and regulatory changes have burdened agencies like his, he said, and it is important to allow the system to stabilize before more changes are imposed.
“ACT teams are an evidence-based approach demonstrated to have good outcomes,” he said. “We need to be focused on ensuring the quality and the outcomes of the services we currently provide in order to create a system that’s responsive to the needs of the communities we serve.”