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Mental Health Patient’s Struggles to Get Treatment Show Gaps in the System

  • Mandy Dube, of Unity, N.H., left, waits in Newport's District Court with her mother Louise Dube to enter a not guilty plea in answer to a charge of domestic violence in Newport, N.H., on Tuesday, June 5, 2018. Dube was accused of hitting her boyfriend, Chris Bailey, while on their way to a couples counseling appointment in New London on May 29. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube, of Unity, N.H., waits to make a plead not guilty to a charge of domestic violence in Newport Distric Court in Newport, N.H., Tuesday, June 5, 2018. As a result of the charge, a protection order required her to have no contact with her boyfriend, Chris Bailey, with whom she had just purchased a home. "I don't want to get out of a punishment by using my mental health as an excuse. I want to be able to get help, so I can prevent that happening in the future. It was a mental health crisis. I understand that and I want to move forward," she said. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube and her boyfriend Chris Bailey, right, were able to move into their new home together in Unity, N.H., in July after the protective order was dropped. Both have mental illnesses that prevent them from working. Mandy gives a cigarette to Chris to finish smoking in the woods outside their house where they like to relax Thursday, July 26, 2018. Mandy has not been able to receive care from the Assertive Community Treatment program, which would allow her to receive individualized mental health treatment services in her home, a key goal set by resolution of the 2012 class action lawsuit against the State of New Hampshire. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube keeps a photograph in her home of herself with then-Gov. Maggie Hassan at the 2014 resolution of a class-action lawsuit to improve mental health treatment in the state of New Hampshire. In the spring, having lost a friend to suicide and feeling that the suit failed to bring its promised changes, Mandy wrote herself a note saying that the suit, "was all for nothing. You didn't make a difference. You failed them." (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube and Chris wave down their ride from Alliance Transportation, a medical taxi service, in front of their Unity, N.H., home on their way to a couples counseling appointment, Thursday, August 2, 2018. The couple were able to purchase the house and land with a loan from the New Hampshire Community Loan Fund. "They're doing well in the grand scheme of things," said Louise Dube of her daughter Mandy and her boyfriend Chris Bailey. "They just love the outside and they love to have their own piece of the world." (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Steve Dube, Mandy's step-father, left, helps her and Chris Bailey, middle, prepare their mobile home for winter by boxing in utility lines and insulating in Unity, N.H., Saturday, Sept. 29, 2018. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube wore an EEG unit at her Unity, N.H., home over the weekend of Saturday, Sept. 29, 2018, to monitor the electrical activity in her brain. She said doctors wanted to determine whether some of her episodes of dissociation were seizures, but no evidence of seizures was found. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube finds an old prescription bottle while organizing her kitchen with help from her mother Louise Dube, left, in Unity, N.H., Saturday, Sept. 29, 2018. Mandy said she has gotten her prescriptions filled through her primary care provider since West Central Behavioral Health in Claremont terminated her care earlier in the year. Louise has been a constant source of support for Mandy through her mental health crises. "She said one time, 'it's time for me to be your mother and not your therapist.'" Mandy Dube said of her mother. "I've gotten to the point now where I don't want to call her, I don't want to put stress on her." (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube and her boyfriend Chris Bailey find a sense of peace outside in the woods around their house and decorate around the paths they've made to create tributes to family members and pets. On one tree, Mandy painted the word "anxiety" under the words "hope, dream, believe, achieve, strong." Unity, N.H, Tuesday, Oct. 23, 2018. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube, of Unity, right, sits behind her public defender Jennifer Cohen with her boyfriend, Chris Bailey, in Newport's District Court in Newport, N.H, on Tuesday, Oct. 23, 2018. Judge Bruce Cardelllo filed her case with no finding and, as long as she shows that she is receiving mental health treatment and does not reoffend, Mandy said she expects the domestic violence charge to be dropped. She curently is seeking treatment at West Central Behavioral Health in Lebanon. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Mandy Dube and Chris Bailey go grocery shopping before a couples counseling appointment at the Newport Health Center in Newport, Vt., Thursday, Nov. 8, 2018. Mandy said their counselor witnessed her dissociating during a recent visit. "I'm kind of glad she did because I'm always worried they think I'm making stuff up," she said. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.



Valley News Staff Writer
Saturday, November 17, 2018

Newport — It’s been nearly five years since the state of New Hampshire settled a class-action lawsuit filed on behalf of people with serious mental illness, including Upper Valley resident Mandy Dube.

Dube, who has been diagnosed with bipolar disorder, borderline personality disorder and post-traumatic stress disorder, grew up in Newport and spent her adolescence in and out of hospitals and other institutions. As one of the named plaintiffs in the case, she was held up as an example of the harm suffered by individuals because of the state’s failure to provide adequate treatment and support.

Because Dube was unable to secure the community-based services she needed to live independently, she was unnecessarily forced to depend on a combination of her mother’s help and institutional care.

Just as New Hampshire has made some progress in improving mental health services since the settlement of the suit, Dube has made strides in maintaining her independence. But just as people in the mental health system say that the state has a way to go, Dube says she is not where she needs to be — largely because the state still is not providing the support that she believes it should.

She and other New Hampshire residents who struggle with serious mental illness “wouldn’t keep having crises if we could get the services we need,” Dube said in an interview following a couple’s counseling appointment in Newport earlier this month.

Dube’s life continues to have ups and downs. Earlier this year, Dube, now 29, moved into a new home in Unity with her boyfriend, 44-year-old Chris Bailey, who also has mental illness. Her new home, she said, was a “dream come true.”

The move was made possible with a loan from the New Hampshire Community Loan Fund, as well as assistance from family. But while positive, the change came with some challenges.

“Even with the strongest of married couples, a new home is going to cause some stress,” she said.

The mobile home delivery to the land Dube and Bailey purchased was delayed several times due to winter weather last year, which pushed back their move and left them living with family for longer than planned.

That stress triggered dissociative episodes for Dube, she said. During such episodes, Dube said she is physically present, but mentally elsewhere. During one, she broke a picture frame and the police came to her mother’s home where she was living at the time. It resulted in a restraining order barring Dube from contact with Bailey and with her mother, Louise, for a time. As a result of that incident and another in which she slapped tea out of Bailey’s hand during an argument outside their therapist’s office, she found herself in court twice within the past year.

These cases — which are not actively being prosecuted, although Dube is required to participate in mental health treatment — combined with the loss of a close friend to suicide last year, have spurred her to reflect on the impact of the lawsuit, which was filed in 2012 by the New Hampshire Disability Rights Center on behalf of Dube and others being held or at risk of being held unnecessarily at the state-run New Hampshire Hospital or Glencliff Home​.

“It wasn’t a waste of time; it was just not enough,” she said.

Some Progress

Dube’s story, which included her struggles to receive treatment and support after the Claremont group home where she’d been living closed about eight years ago, contributed to the success of the lawsuit.

The suit was settled in 2014, when the state agreed to expand a variety of services, including 24-hour mobile support for people experiencing mental health crises in the community; assertive community treatment, or ACT, teams to provide case management, medication management, and psychosocial rehabilitation in patients’ homes and other community places; supportive housing; and supportive employment.

Semiannual reports from an expert reviewer tasked with overseeing the state’s implementation of the agreement show that the state is hitting some targets for housing and employment supports. It has established 24-hour mobile crisis support teams and crisis stabilization apartments in Concord, Manchester and Nashua, and the state’s community mental health centers also have ACT teams serving some patients in the community, though not as many as the agreement stipulates.

Despite this progress, logjams for inpatient treatment still leave dozens of people with mental illness lingering in hospital emergency departments, where providers are not equipped to treat mental health issues, across the state. The average monthly waitlist for New Hampshire Hospital, which provides intensive treatment for patients with acute mental illnesses, had 49 adults from September 2017 to May 2018, according to the July report on the implementation of the agreement. Another report is due in January.

Those waits spurred the ACLU to file a separate lawsuit last weekend. The suit, against the Department of Health and Human Services and Southern New Hampshire Medical Center, alleges that mental health patients are being held in hospital emergency departments involuntarily without due process.

Increasing access to ACT teams, supportive housing, mobile crisis teams and crisis apartments — as the community mental health agreement stipulates — “could reduce the need for emergency room boarding,” Andrew Milne, staff attorney for the Disability Rights Center, said in a phone interview.

“The models, the tools are out there,” Milne said. “They’re in use. They’re working, but we need to expand them in order to reach more people who are otherwise ending up in emergency rooms or stuck in New Hampshire Hospital.”

Such services could defuse crises before they result in emergency room admissions and help get people out of New Hampshire Hospital who really don’t need to be there, he said. Sometimes people who have completed treatment at New Hampshire Hospital or at Glencliff end up stuck there because housing and necessary community supports are not available. That means their beds are unavailable for new patients in acute need who may be waiting in emergency rooms.

Health and Human Services Commissioner Jeffrey Meyers said 15 of the 164 beds at New Hampshire Hospital currently are occupied by individuals who have been deemed not fit to stand trial or not guilty by reason of insanity, but who do not need the acute treatment services of the state hospital.

Meyers said he hopes to work with the governor and legislators to determine: “How could we potentially have another facility in the state to care for those people?”

Doing so, he said, would free up beds for other seriously ill patients.

Expanded Services Still Needed

Since 2014, when the agreement was finalized, Dube has visited emergency rooms several times, resulting in three hospital admissions. Dube, who does not drive due to panic attacks associated with her illness, said such visits could be avoided if she had a case manager come to her through an ACT team and by having a mobile crisis team available for emergencies.

West Central Behavioral Health, the Lebanon-based community mental health center serving the Upper Valley, has an ACT team — which includes a physician or advanced practice nurse, case managers, and a therapist, as well as vocational services, substance use services and nursing services — that has about 45 clients, Suellen Griffin, the agency’s CEO, said in a phone interview.

These are the people who need the services, Griffin said. She said West Central has no waitlist for ACT team services. To qualify, patients cannot be engaged in treatment and must be unable to attend in-office visits, she said. The ACT team is not intended for people who simply struggle with arranging transportation to the services they need, Griffin said.

But Dube maintains that she should qualify and that there have been times when her inability to get to appointments has meant that she’s been unable to get necessary medications.

“What good are the ACT team services if people — myself included — who need them don’t qualify?” she said.

The July expert reviewer’s report found that the state has sufficient capacity to serve about 1,200 people through ACT team services, but that is below the 1,500 the agreement requires.

Griffin, however, questions whether 1,500 is the appropriate capacity level.

“Nobody knows where that number comes from,” she said.

Milne declined to go into specifics of the state’s implementation of the agreement.

Workforce issues also have made it difficult for the community mental health centers to adequately staff the ACT teams, Meyers said in a phone interview.

To address the workforce challenge, the state is “trying to incentivize folks into these jobs,” he said.

The state has included $3 million in the 2018-19 state budget to support workforce development, according to the expert reviewer’s report.

Workforce issues remain a challenge for West Central and all the community mental health centers, Griffin said. West Central’s turnover rate for employees is more than 20 percent, she said, adding that when employees leave, clients drop out of treatment.

“It has a significant impact on the care of patients,” she said.

Overall, Griffin is unimpressed by the changes ushered in by the settlement.

“It didn’t bring new money,” she said. It “didn’t bring new services.”

What it did bring, at least for West Central, are new requirements that force her staff to participate in additional regulatory reviews. She described the additional administrative oversight as “expensive and burdensome.”

Meyers, however, said the state has increased its level of support for mental health in response to the community mental health agreement. In addition to the workforce funding, the state has put up money for transitional housing and community residence beds; a behavioral health crisis treatment center to provide assessments and treatment, and supported housing, for a total of $16.86 million in the 2018-19 budget, according to the expert reviewer’s report.

The state also has added about $6.3 million to Medicaid reimbursements for mental health treatment and nearly $500,000 to the community mental health centers’ state contracts, the report said.

“There’s more money going into mental health services in New Hampshire today than has gone in for many years,” Meyers said.

Between Therapists

Dube has had several different therapists through West Central and now is arranging to see a new provider in Lebanon after she was unsatisfied with the care provided by her therapist in Sullivan County. As a result of this transition, her primary care provider currently is prescribing her mental health medications, which is not a permanent solution, Dube said.

“If I could get the services I need, I’d be all right,” she said.

When Dube struggles, she often calls her mother, Louise Dube.

It would be helpful if her daughter had someone else to turn to in a crisis, said Louise Dube, a Newport resident who works at Dartmouth-Hitchcock Medical Center and is six months away from earning her doctorate in project management.

“Any kind of change is very difficult for Mandy,” Louise Dube said, noting that her daughter began cutting herself again in the midst of the stress related to the new home.

“If she had had good therapy during that time, it might have been a little easier,” she said.

Looking back at the incident with the broken picture frame last December that led to her daughter’s first arrest, Louise Dube said, “I had been doing as much as I could to talk her down. ... She didn’t have any relief for that stress.”

The police wouldn’t have needed to be involved if someone had come to sit with her daughter and talked with her, Louise Dube said.

In a crisis situation, Louise Dube said, she tries to put her own emotions aside and remain calm for her daughter, but that takes an emotional toll on her.

“I’m a mother, not a therapist,” she said.

Louise Dube has her own struggles to deal with. In addition to her work and schooling, both her father and her stepfather died last year, her mother has Alzheimer’s and her stepmother has lung cancer.

“I have a lot on my plate,” she said.

She does find some solace in her daughter’s progress. There were times in the past when it wasn’t clear that Mandy Dube would be able to live on her own. Bailey and Dube provide peer support to each other.

“Her and Chris are really good for each other because they both have issues and they kind of balance each other out,” Louise said.

In addition, the couple’s Unity home also has land surrounding it, which gives the couple a chance to be outdoors, create trails and find ways to work through some of their emotions.

They can do all of this free from the scrutiny of close neighbors who might be bothered by the sounds of stomping, talking or television, Louise said.

Though her daughter seems to be on fairly even footing, Louise Dube said, she would benefit from the services of an ACT team and from a mobile crisis unit. Though it seems that such services have been made available in the southern and central parts of the state, Louise said services in Sullivan County still are lacking.

“It shouldn’t be this difficult to get the help you need when you’re begging for the help,” Louise Dube said.

A Question of Funding

Advocates and mental health providers say it’s clear where the state needs to go, if only legislators would fund these programs.

While Griffin said she is confident the state’s next 10-year mental health plan — a draft is due out later this month — will outline changes the state needs to make including improvements to children’s services, which are not addressed in the community mental health agreement, she is skeptical about whether the recommendations actually will be implemented.

The previous 10-year plan was a good one, Griffin said, but it sat on a shelf.

“It was never funded,” she said.

The lack of financial support was, in part, what led to the lawsuit resulting in the community mental health agreement, Griffin said.

Ken Norton, executive director of the New Hampshire branch of the National Alliance on Mental Illness, voiced similar concern.

“The key question here is around funding and the political will to provide for this population that is clearly being discriminated against,” he said.

Norton also said that while the state needs a 10-year plan to address mental health, it also needs a shorter-term plan. He said he would like to see more supported housing and mobile crisis teams.

“We are in a crisis,” he said. “We really need some serious steps to lead us out of that crisis (in the) next few years.”

Meyers said times have changed since 2008, when the last 10-year plan went into place.

“There’s not a national recession right now,” he said.

But the reasons for optimism also go beyond dollars and cents.

“There’s a much greater awareness of the needs,” he said.

A draft of the state’s 10-year plan is set to be released on Monday. The final public input session on the plan is scheduled for 5 to 7 p.m. on Dec. 3 in Concord. More information is available online at dhhs.nh.gov/dcbcs/bbh/10-year-mh-plan.htm.

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.