BRUNSWICK — On Feb. 29, the Maine Department of Health and Human Services sent a letter to residents covered under MaineCare’s Section 17, which provides community support services to mental health patients.

The letter informed patients of an immediate change in eligibility for coverage, and said unless they met a primary diagnosis of schizophrenia or schizoaffective disorder, they would lose services on April 8.

One of those people was Donna Deigan of east Brunswick.

“My first reaction was, oh my God. What am I going to do?” she recalled in a recent interview.

Deigan, 49, was diagnosed in 1992 with bipolar and post-traumatic stress disorder, as well as severe anxiety and depression.

“I felt like I was being thrown away in the trash,” she said, reacting to how it felt to learn that within a month, she would lose her Section 17 coverage, which provided daily support and case management services that helped her with everyday tasks – from organizing her house to going to the grocery store.

In 2002, Deigan came to Maine to pursue better health-care services after experiences in her home state of Ohio sometimes left her waiting for hours at the psychiatrist’s office, only to be turned away.

But even in Ohio, life without treatment was a worse option.

“When I was in school, people just thought I was lazy,” Deigan said, reflecting on an adolescence marked by undiagnosed depression and trauma.

Misunderstood by her classmates, teachers, and family, she coped without a name for what ailed her, and, in her silence, came to believe what others did – that maybe she was a loser.

Deigan no longer thinks that.

Because of MaineCare services – especially community supports covered under Section 17, which are separate from less-intensive outpatient services – Deigan said she has not only regained control over her life, but has overcome a sense of worthlessness, a feeling that occasionally drove her to self-harm – even an attempt at suicide.

“I’m always going to have my illness,” she said. “Sometimes, I’m going to have my symptoms.”

Faced with the possibility of losing essential services, Deigan knew she needed to act so that she wouldn’t lose the progress she’s made. She also thought of the people she knew who were traumatized by the implications of the DHHS letter. A news bulletin posed by the Consumer Council System of Maine, a mental health policy group, expected the rule change would affect around 8,000 people.

“Gov. LePage is going to save some money,” Deigan said. “I don’t know how many lives it will cost.”

The thought inspired her to take action. And her action has gotten her through the past six months, during which she has become an outspoken mental health peer advocate, and used her personal experience – the very thing of which she used to be ashamed – to fight stigma, demand better policy, and organize for change.

But charting the rise of Deigan’s political and community engagement paints an incomplete picture of her well-being, which has suffered over the same period as she has begun to lose services.

“What’s holding me up right now is continuing to fight for what’s right,” she said. “Something has to change fast. Not just for me, but for everybody.”

Getting political

Deigan had never voted, let alone called her state representative.

But last March, she got in touch with House District 51 Rep. Jay McCreight, D-Harpswell, who represents Harpswell, West Bath and east Brunswick.

Over a two-hour meeting, Deigan told McCreight about the impending Section 17 changes.

“She made me feel human, worthy, and respected,” Deigan said of McCreight. “When’s somebody is validating, not minimizing (your experience), it helps to keep you on that stairway to health.”

The two realized that sharing Deigan’s experience was the best way forward, and McCreight encouraged Deigan to testify at a public hearing before the Health and Human Services Committee on April 1 – just a week before the cuts would take effect.

Meanwhile, Deigan wasn’t the only consumer reeling from the letter. Simonne Maline, executive director of the Consumer Council System, reported “mass hysteria” in the wake of the Feb. 29 letter.

“If they had done public education before (announcing the change), there wouldn’t have been the mass hysteria that happened,” Maline said. She received calls from consumers and providers asking about the changes, saying they didn’t understand what they meant.

“I don’t think some of these changes are a bad thing,” said Maline, who believes the existing system of services ought to be modified to foster greater independence. “The way the system is created, it’s created for dependence.”

She said that until the LePage administration, the state was moving in that direction. But now, “there isn’t a back and forth” like there used to be with prior administrations, she said, and criticized “leadership that’s happening at 221 State St.” where the DHHS cmmissioner’s office fails to consult the Consumer Council prior to enacting policy changes – as “not serving the Maine community very well. It’s certainly not serving the consumer community at all.”

The day of the hearing, Deigan arrived early. Told that she would have two minutes to make a statement at the hearing, she practiced her remarks with a stopwatch.

She was the eighth person of the hundreds who showed up to testify to the opposition and confusion that Maline described.

Deigan’s caseworker and McCreight stood at her side as approached the podium and read her statement as fast as she could, shaking the entire time.

“This is not a political issue. This is a people issue,” she said. She used metaphors and analogies, a common technique of hers, to build empathy with those who do not understand what is it like to live with mental illness.

She compared her services to a light at the end of a dark tunnel. She asked the committee how it would expect a business to succeed in a bad economy without investing in it?

Similar to a physical illness, she said, mental illnesses also require proactive care.

“You wouldn’t take away chemotherapy from a cancer patient,” she repeated in an October interview. “You wouldn’t take away insulin from a diabetic.”

By humanizing mental mental-health patients and legitimizing the severity of their experiences, Deigan hoped to prove to the committee that diagnoses outside of schizophrenia and schizoaffective disorder also deserved daily support.

“When I do the analogies, that’s kind of my way to get you into my head,” Deigan reflected in an interview Oct. 18. “It’s kind of (a) virtual reality helmet for you to see what it’s like to have this illness.”

Transition period

Some, but not all, of the state officials were persuaded.

Stefanie Nadeau, director of MaineCare Services, also testified at the hearing in defense of the changes, and explained that the changes in eligibility were intended to match services to those who needed them most, and noted there was a waiting list for services.

In an interview Oct. 12, she explained that only 18 percent of the $88 million her department spends on Section 17 services went to “people with severe and persistent” illness.

Nadeau said her department reviews research from the National Institute for Mental Health, which did not list daily living supports as an appropriate treatment of PTSD and depression.

Maline was also hesitant to characterize the rule change as entirely negative, having already advocated for modifications in the system to foster greater independence among consumers.

“It’s not black and white,” she said.

She was more upset with the rollout than anything else. “I can’t tell you how many people went into crisis over this stuff,” she recalled in an interview Oct. 25.

Though not as opposed as Deigan, Maline agreed that creating eligibility based on diagnosis – instead of an ability to function – is misguided.

“We’re missing the forest for the trees,” she said. “Sticking a label on somebody and saying they need something … I’m just not a fan.”

In her experience, Maline said, consumer eligibility should be predicated on functionality, not diagnosis, which is also not indicative of a person’s ability to live a healthy and independent life.

Nadeau also pointed out that patients losing services can apply for continued coverage as long as they qualify or are at risk of qualifying under a set of special circumstances: homelessness, hospitalization, treatment at a state psychiatric hospital in the last 24 months, or incarceration.

But Maline said the “mass confusion” caused by the rollout made it unclear who was still eligible – both consumers and providers – and that even with the exceptions, the system was not built to be flexible for consumers who may need to move in and out of services as they move toward living independently.

Deigan said the amount of paperwork, all written in “governmental language,” was intimidating.

As a result of the public hearing – which lasted almost seven hours  the Legislature passed an emergency bill on April 28 that placed a moratorium on the ability to limit Section 17 services to individuals who no longer qualified under the changes. The move was intended to given patients time to seek out “more appropriate community resources,” according to Nadeau.

She said it was a transition period, but Deigan called it a compromise.

“Quite frankly, I really felt discriminated against because I don’t have a diagnosis of schizophrenia or schizoaffective disorder,” Deigan said.

She has a difficult time recalling when she began to notice a reduction in her services.

She thinks it was in June, around the time she got a part-time job as a peer advocate for other mental health service consumers, and when she formed a mental health coalition with McCreight and other stakeholders to discuss better mental health policy.

But it was also in June that her mother died, which sent her into a deep depression.

She said it was then more than ever that she needed her daily supports.

“I’ve lived in a spiral of hell this whole summer,” Deigan said.

‘Staying afloat’

A bad day starts the night before. Nightmares, anxiety, difficulty falling asleep.

Come morning, it’s impossible to get out of bed.

“Have you ever been faced with a basic, daily living skill, and found it was impossible to accomplish?” Deigan asked. She was sitting in her living room on Oct. 3, one of her bad days.

“On a bad day, I can’t organize thoughts,” and in order to get out of bed, she talks herself through her simple routines – feeding the cat, taking a shower, making coffee – and relies on the coping tools she learned in therapy.

With Section 17 services, Deigan said a caseworker would show up at her house in the morning or meet her at the grocery store to help her get through the day. “When things are organized, I function better,” she said.

She gestured to the boxes of papers and personal belongings stacked on tables and on the floor around her sofa. “My house is in chaos, my organizational skills are all over the place,” she said. “I buy bad food, I’m not making healthy choices.”

Deigan said she has contemplated suicide three times since her mother died. Last week, she said, she almost lost her job because she couldn’t get out of bed.

“Our state is saying we don’t have major metal illnesses. They haven’t lived like this. They haven’t talked themselves out of thinking, ‘I want to die,'” Deigan said.

But there are good days, too – days like Tuesday of last week, when Deigan drove to Augusta to meet with members of the mental health coalition.

The coalition, which is still in its formative stages, has met four times at the Consumer Council offices.

In addition to Deigan, the core coalition consists of Sagadahoc County Sheriff Joel Merry; Rep. Drew Gattine, D-Westbrook; Aashley Malbury, of the National Alliance for Mental Illness of Maine, Maline and McCreight.

Deigan said that each member of the coalition is focusing on one area related to mental health; Deigan is researching ways to reduce stigma, and how schools train teachers for early detection of mental health symptoms.

Eventually, the group will put together a prioritized list of needs that will influence future legislative policy.

“We certainly (can) communicate better so we can be more effective,” Maline said. “We don’t want to just be reactive.”

Deigan hopes that in sharing her experience, stakeholders and the public will influence lawmakers’ understanding of mental health, and force them to write better policy.

In the meantime, she has a new health-care provider and has regained access to her caseworker.

“I’m doing everything I can do stay afloat,” Deigan said.

Callie Ferguson can be reached at 781-3661 ext. 100 or [email protected]. Follow Callie on Twitter: @calliecferguson.

Donna Deigan of Brunswick said the loss of her mental health services has made it hard to keep her house organized and clean. Some mornings, it’s also been hard to get out of bed. But it hasn’t stopped her from promoting better mental health policies for Maine.

Donna Deigan holds a three-ring binder containing a statement she read at an April 1 Health and Human Services public hearing. The binder is full of newspaper articles reacting to changes DHHS made to Section 17 eligibility, which resulted in Deigan’s loss of specific mental health services.