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Breaking down barriers

Improving mental health was the No. 1 thing residents felt needed to be done to make Douglas County healthier, according to the 2016 Douglas County Community Health Survey. But where can the community start?

An internet search will bring up information on mental illness, such as symptoms and medications. Other knowledge is harder to find.

"How do you talk to somebody who's having delusions? That information is not available," said Nancy Minahan, co-president of the Douglas County affiliate of National Alliance on Mental Illness. "How do you handle the issues of feeling you want to be supportive but your loved one is rejecting you?"

The newly-formed NAMI Douglas County offers a peer support group for those living with mental illness. It's a life support program, Minahan said, like oxygen. Members can tell it like it is to someone who understands and share the tips and techniques they have used in the past.

A support group for families and friends whose loved ones are living with mental illness will also be offered.

"Individuals who have a mental illness do better when they have a supportive family," Minahan said. "We provide information, we provide coping skills, we provide perspective. And they can learn that the emotions they have are emotions everybody in that situation has."

The family group fills an unmet need.

"Hospitals don't provide support for families," Minahan said. "There's no insurance reimbursement for living with a person who's very challenging to be able to help. There's no place built into the system, the mental health support system, for family and friends to learn what they need to learn and to have the support that they need to have and to have the coping skills that will allow them to really be a support. So that's what we can do."

"Jason," who declined to use his real name, spoke to Minahan about his own struggles with mental illness. He noticed symptoms in high school, but didn't recognize them at the time. He decided he might need some type of medication at age 23. Since then, Jason has been hospitalized 23 times for mental illness-related concerns and received six different diagnoses. The most accurate, bipolar disorder, came at the age of 30.

In 2015, the Superior Days lobbying team made access to mental health services one of its key legislative issues. They stressed the need to increase state Medicaid reimbursement rates for mental health services and expand the types of mental health benefits that are billable. According to the issue paper, it took one local agency more than a year to hire a child therapist and over six months to hire an adult therapist because the pay rate wasn't competitive. The agency had a waiting list of 40 adults and children at one time.

Four Duluth agencies used to provide mental health treatment to Wisconsin Medicaid patients, but that has dropped to one. Reimbursement rates for mental health care in Wisconsin are as much as 56 percent lower than the Minnesota Medicaid rate.

During the worst year of his illness, in his late 20s, Jason was in and out of a hospital every month of the year. He had to travel 150 miles to Eau Claire, Wis., for short-term care because as a Douglas County resident, he couldn't access services in Duluth. Longer stays were even further from home, at one of three state hospitals for mental illness — Trempealeau County, Mendota or Winnebago. The "worst year" left Jason heavily in medical debt, as neither public funds nor his private insurance covered the duration of his hospitalization.

Funding is a huge barrier for those seeking mental health care, Minahan said, citing the 2015 Bridge to Health survey that encompasses eight Minnesota counties and Douglas County.

When asked their reason for not seeking or delaying mental health care, 39.6 percent of respondents said they didn't think it was serious enough; 36.7 percent said they were too nervous or afraid. A number of them cited financial reasons, ranging from no insurance to expensive deductibles and high cost of care. Added together, finances were the top reason preventing people from seeking mental health care at 41.7 percent.

Studies consistently show the sooner a person with mental illness gets quality services and support, the better the outcomes. According to NAMI, 50 percent of all mental illness begins by age 14, 75 percent by age 24. Yet in the United States, there is an average delay of 74 weeks from the time a person first experiences symptoms of psychosis to when he or she receives care. The delay is much longer — eight to 10 years — for illnesses such as bipolar, anxiety and depression.

Search for solutions

Now in its third year, Douglas County's Behavioral Health Coordinated Community Response Team intends to make services easier to access. The group of mental health care professionals plans to launch a website listing available resources in the area. It's expected to go live by early 2017.

"We want to provide the website so that people can make heads or tails of the information," said Betsy Byler, psychotherapist with Human Development Center. "What we found is that those of us who work in the field know how to navigate the system, but average people do not know how to navigate the system and often get frustrated and disheartened when trying to access services."

NAMI Douglas County is also addressing the need for information. In addition to offering support groups, the nonprofit is crafting flow charts to help those dealing with mental illness access local resources. The first step, Minahan said, is to establish a primary health care provider.

A recent study by the National Institute of Mental Health found that coordinated specialty care improved the quality of life for people with early psychosis more than traditional community-based treatment. Participants hospitalizations were down 50 percent and participants either in school or working was up nearly 40 percent. Such services could help save money over time by reducing hospitalizations and the need to go on disability.

Coordinated specialty care involves a team of specialists working with the client to make treatment decisions, involving family members as much as possible. Minahan likened it to the breast cancer support services local hospitals offer.

Jason found that when he moved from Duluth to Superior, he went from having five support services — psychiatrist, therapist, county case worker, behavioral health coordinator and supportive adult rehabilitative mental health services worker — to only two, a doctor and therapist. His employer does not provide insurance coverage for short-term disability leave related to mental health needs. Fearing workplace impacts, he has informed his employer only very generally about his medical health history.

Another barrier that needs to be broken is the stigmatism attached to mental illness, Minahan said. It can cause people to delay getting treatment, and it's unwarranted.

"Mental illness is a physical illness," she said. "It's not caused by a person's choices."

Similar to a cancer or diabetes diagnosis, she said, people have to learn to live with it.

"Physical illness should not keep you from having a happy, satisfying life," Minahan said.

Now in his late 30s, Jason's illness is under better control. Dialectical Behavior Therapy and medications have been "lifesavers," he said.

Jason just bought his own home and is involved in the community.

"Things have changed a lot," Jason said.

NAMI Douglas County is hosting a kickoff event 5:30-7 p.m. Wednesday in the community room at Essentia Health-St. Mary's Hospital, 3500 Tower Ave. It will include a listening session on mental health needs, information on support groups, refreshments and door prizes. Everyone in the community who has a connection to mental illness is invited to attend.

NAMI's family support group meets 5:30-7 p.m. the first Monday of every month at the Superior Public Library Meeting Room, beginning Nov. 7. The peer support group meets 5:30-7 p.m. the second and fourth Wednesday of each month in the community room at Essentia Health-St. Mary's Hospital.

For more information, contact NAMI Douglas County WI, PO Box 1224, Superior, WI 54880 or namidouglascountywi@gmail.com or visit www.nami.org or www.namiwisconsin.org.

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