A Long Haul: Future Remains Uncertain for Mental Health Care in New Hampshire
Kurt Bellows, a Granite Pathways member, plays the piano in one of the rooms of the Brookside Church in Manchester after the club house hosted a dinner with another local organization.
(ANDREA MORALES / Monitor staff)
Wendie Holt gathers up papers at the end of one of the daily meetings at Granite Pathways in Manchester last month. Granite Pathways is a clubhouse is a peer-run community organization that focuses on helping their members with housing, employment or education. About 60 people use the clubhouse regularly.
(ANDREA MORALES / Monitor staff)
Concord — Twelve years ago, Pam Brown was working as a banker and looking to open her own consulting business when her son, then 18, suddenly dropped out of high school, withdrew and stopped eating. His family eventually was able to commit him to a psychiatric hospital, where he was diagnosed with psychosis.
Brown and her family did whatever they could to learn about mental illness, help him get treatment and advocate for improvements to the state mental health system. They supported his re-entry to high school, helping him finish his last semester. But after that, they saw he had no other support for creating a full life.
“After you figure out how to get your family member help, you find out it’s a long haul,” Brown said. “It’s a chronic illness, and it isn’t enough just to deal with the immediate acute symptoms, but how do you get someone their life back that was so interrupted?”
Her son could secure a job — four times, in fact — but if things got stressful, he would stop going. “And if you’re not working, or you’re not going to school, you have no life,” his mother said. “It is totally isolating and it just exacerbates the illness because you have a feeling of despair and hopelessness, and it is self-perpetuating. It’s a cycle of failure that doesn’t have to be that way.”
Four years ago, she stopped waiting for the system to help her address his needs of social engagement, education and employment. So she and the families of five other people with mental illness formed New Hampshire’s first certified clubhouse, a peer support organization.
Brown and others in the mental health community say they are happy that the new governor, Maggie Hassan, has included more money for community-based care in her budget proposal and that she wants to move forward on a 10-year plan to rebuild the mental health system in New Hampshire, a plan that has lain dormant for more than four years. They are glad the state hospital is adding more beds for people in mental health crises.
But the most meaningful reforms in care, if they materialize at all, may be years away from improving the lives of people with mental illness.
For one thing, no one knows yet whether the Legislature will go along with Hassan’s proposal to add $28 million in mental health care funding. Hassan’s own plan to fund her priorities counts on $80 million from legalizing and licensing a casino, far from a sure thing.
Uncertainty surrounding the state budget isn’t the only factor that makes it difficult to predict how changes at the state level will reach the mentally ill and their families. Some of those decisions will be made in the courts and in hospital board rooms.
One lawsuit filed against the state by patients and their families alleges that inadequate community resources have led to unnecessary hospitalizations. The case isn’t scheduled to move to trial until June 2014. It could result in court-ordered reforms, if the state doesn’t implement changes before then.
And no one knows what will happen when the state Medicaid program is taken over by managed care organizations, or when that transition could start. Because of another lawsuit filed by hospitals over Medicaid reimbursements, that process is already well behind schedule.
“I’d like to be more optimistic,” said Louis Josephson, CEO of Riverbend Community Mental Health. “If what the governor proposed happens, there will definitely be some relief. … On paper it seems like there’s some good plans, but I’ve been in this business in this state for too long to be too hopeful.”
What Hassan Would Do
On paper, what the governor has proposed is this: $28 million in additional funds over the next two years for community mental health care, broken into several pots. Hassan’s office and the state Department of Health and Human Services couldn’t say exactly how much is to be allocated to each project, but the funds are aimed at:
∎ A new 10-bed inpatient facility in an existing hospital for patients in a mental health crisis. Only Elliot Hospital in Manchester has this type of facility, with eight beds available.
∎ 16 beds for patients in need of short-term inpatient care for acute psychiatric treatment, doubling that resource.
∎ 74 new community treatment beds. As of January 2012, there were 159 of these placements available.
∎ Funding to give housing subsidies and residential support services to 100 more people with mental illness.
∎ 10 new Assertive Community Treatment teams, a support for people in crisis that can lead to less need for hospitalization. Nine of these types of teams are already in place, serving people in four regions of the state. However, none of the existing teams serves children; six of the new ones would.
∎ Funding to bring assistance and treatment to 350 more older adults who are at high risk for hospitalization.
∎ An additional 36 percent in funding for peer support programs.
Separate from Hassan’s proposal for the next biennium, New Hampshire Hospital is adding 12 beds for patients who require emergency admissions but do not need extended inpatient services.
By the end of the year, the hospital will also reorganize programming for children and young adults, including substance abuse education. It will also begin video conferences to consult with local emergency rooms, where patients awaiting involuntary admissions to the state hospital often languish because of a shortage of beds. That could potentially decrease admissions to the state hospital and improve coordination with community mental health centers when patients are released.
In an interview with the Monitor last month, Hassan wouldn’t rank these proposals or project how she would adjust them should the Legislature cut her funding request, except to say “our top priority should always be the physical safety and health of both patients and the public. … We’re really trying to do this so the various pieces complement each other.”
Almost all of her proposals are priorities outlined in the 10-year plan state officials and mental health care providers drafted — but never funded — in 2008.
Most are also the services identified in the federal lawsuit against the state as ways to avoid or end hospitalizations for people with mental illness. The Disabilities Rights Center filed the suit a year ago on behalf of several families, and the U.S. Department of Justice has since signed on. The center says Hassan’s plan doesn’t address all the flaws in the spectrum of care the state provides.
“We’re very pleased that the governor has recognized the problem and wants to address it. We are concerned that much of what has been proposed includes a lot of additional inpatient beds and still not enough of the kinds of evidenced-based community practices that we know can keep people out the hospitals and promote recovery and meaningful lives for people,” said Amy Messer, the Disabilities Rights Center’s legal director.
While more inpatient beds might lessen the time a patient waits in an emergency room, the gains a patient makes during hospitalization can erode quickly without adequate support in his or her community, Messer said.
“I think and I hope we’re moving forward, but my concern about the proposals is we don’t want to see some short-term measures that are costly but don’t really fix the problem.”
The state’s 10 community mental health centers say it would take a two-year investment of $37.6 million to bring the state in line with the 10-year plan. The funding gap between what the centers say they need and what the governor has proposed could mean that establishing more community resources like supported group homes isn’t feasible, Josephson said.
Supported housing is one of the least expensive treatment options for people with mental illness, at a cost of about $200 per day compared with $1,000 per day at the state hospital. The community centers are currently reimbursed at about two-thirds the cost of operating the 159 beds in group homes, he said.
“There is no way Riverbend or any other center is going to invest in more treatment beds if we can’t get paid,” Josephson said.
Hassan didn’t specify what rate the state would offer to pay the community health centers for operating those services, but she said that health care providers will likely see fewer uninsured patients if the state expands Medicaid under the federal Affordable Care Act. Medicaid expansion, however, depends on the will of the Legislature.
If Medicaid in the state is expanded, the Affordable Care Act requires states to provide mental health and substance abuse coverage at a rate equivalent to traditional health care coverage. Hassan said her budget would extend that parity of coverage to all Medicaid recipients in the state.
Medicaid recipients and mental health care providers are also awaiting as-yet unknown changes when the state moves forward with a plan to use private managed care organizations to administer the program.
Mental health care providers say they don’t understand how their services are supposed to fit under the managed care model. For example, under managed care, once a diagnosis such as a broken bone is made, the company authorizes services — X-rays, a cast and check-ups — for a limited time, after which a provider will need to seek reauthorization to continue treatment.
“The people we are serving and treating have chronic conditions,” said Dennis MacKay, executive director of Northern Human Services, a mental health center in Conway. “It can be managed, but there is not a cure.
“The last thing I want to do is add administrative staff to keep filing and applying for prior authorization and renewals, or take clinical staff time away from patients.”
MacKay and other leaders of the community health centers are working with the managed care companies to create models for the new system.
But a big roadblock is the lawsuit 10 community hospitals have filed against the state, claiming they’ve not been adequately reimbursed for Medicaid patients. They have refused to join the managed care companies’ network of providers.
Peer Group on Its Own
One item in Hassan’s budget proposal is key to helping people succeed in their home communities, advocates for the mentally ill say.
Peer support services bring people together who have varying levels of experience with the mental health care system to support each other, encourage each other and fill in the gaps left by clinical services.
That’s why when Pam Brown couldn’t find anyone to help her son restart his life after his diagnosis, she worked with other families to create Granite Pathways in Manchester, New Hampshire’s first clubhouse for people with mental illness. Clubhouses are a type of peer support agency, a place they can go as often and for as long as they need, to support each other, form social safety nets and work toward recovery and independence.
Most other clubhouses in the country receive some public funding. Granite Pathways, now in its third year of operation, isn’t included in the state’s peer support budget, but 17 other groups are.
What the other peer support agencies do may work for some people, but Brown said she believes the clubhouse model is uniquely beneficial because it focuses on work, either on behalf of the clubhouse or at local businesses or nonprofits.
Charlie Perkins of Manchester has struggled with mental illness his entire adult life. After moving from Maine last year, he spent almost every day for several months inside his apartment. He’d leave for his appointments at Manchester Mental Health, but those were only hourlong interludes in a life lived alone.
Then he found Granite Pathways. He’s there every day now, practically from open to close.
Like similar clubhouses around the world, Granite Pathways is organized around work units that tackle tasks such as membership, housing, employment or education. Perkins most enjoys the employment unit, where every morning he checks job listings and posts them on a bulletin board, looking to see if any opportunities match the skills of his fellow members.
“We take care of each other,” he said. “The friendships are the best part. We know each other.”
Other members write grants, give tours and help Brown raise more money to keep the lights on and support her hopes for a larger space. About 60 people use the clubhouse regularly, and there is a waiting list of people interested in joining.
Brown’s son was her inspiration in creating a clubhouse, but he told her over and over that he wasn’t interested.
After it opened, when he would lament his loneliness or wish he had help going back to school, Brown would gently remind him that Granite Pathways offered a solution.
“Now he comes all the time,” she said.
Though the clubhouse is in a cozy corner of Brookside Congregational Church, with big windows lighting one office and a few tables tucked into a kitchen area for the daily lunch service, Brown said she dreams of a bigger space. With public funding, the group could move somewhere with a real kitchen, real offices, room to grow. They could begin partnerships with employers and fulfill the clubhouse’s mission.
But Brown couldn’t wait around for the state to help her son, and she’s not waiting for it to help with the clubhouse, either.
Sarah Palermo can be reached at 603-369-3322 or firstname.lastname@example.org.
This is the last in a four-part series, "In Crisis," documenting the decay of mental health care in New Hampshire. Read the first three stories under the "related stories" section at the bottom of this page.