Methods Change in the Treatment of Mentally Ill: Even More Must Be Done to Meet the Needs of People With Mental Disease and Their Families, Advocates Say.

By Phoebe Sweet and Mary E. Young, Reading Eagle, Pa.

Jun. 13–Tom W. Kubizek had it all: Big house, nice car, great job, beautiful girlfriend.

“You would think I had a great life — happy, content, enough money to live life to the fullest,” he said.

But after a bout of major depression caused by bipolar disorder in July 2003, Kubizek quit his job, sold his Chester County home, filed for bankruptcy and even stooped to shoplifting food.

“It came down to two choices,” Kubizek said. “I could shoplift as a street person with a good chance I would end up in jail. The second choice was to end my life. I was leaning toward the latter.”

But Kubizek, a resident of Newmanstown, Lebanon County, is getting his life back.

He has published two books and is an advocate for people living with mental diseases.

“I’m not afraid to tell anybody,” he said. “In fact, I want to tell people. We have to teach the public about mental illness.”

Great strides have been made in that direction. Yet, more needs to be done. People living with illness, experts and advocates offer these ideas for a better future: State hospitals should be a stepping stone to the community, and other alternatives are needed when hospitalization is not appropriate. Funding and services should be increased. Stigma should be eliminated. More tools are needed to give people with mental diseases the ability to live ordinary lives. Changing treatment The straitjackets and restraints are gone. No one is locked in a room. Lobotomy tools are curiosities on display in medical museums. Insane asylums have been replaced by hospitals that focus on giving people the skills they need to live independently.

At its peak in 1942, Wernersville State Hospital housed more than 1,800 people in 10 buildings.

Now, no more than 232 people occupy three buildings.

The hospital is a beginning for treatment, not an end.

That message is reflected in the name of the area used to teach residents how to live on their own — Independence Mall.

John M. Bingaman, psychology manager at Wernersville State Hospital, said that 25 years ago, patients would have been told what medication to take, what activities to participate in and where they would live when they left.

Today patients are called consumers. They have a say in all those decisions, he said.

Joan L. Erney, deputy secretary, state Office of Mental Health and Substance Abuse Services, said those who have been there longer than two years are being assessed to see what support they would need to live in the community.

“They want to work, have a house and a family,” she said. “They need treatment and specialized services but want to experience life just as we all do.”

But Mary Ann of Shillington said she can’t force her adult son, who has bipolar disorder and is an alcoholic, into a hospital because he is not dangerous.

Family members should be able to get court orders for forced outpatient treatment, she said.

That’s being debated nationally.

The membership of the National Alliance for the Mentally Ill, an advocacy group for people with mental illness, is divided on the issue.

A seldom-used state law here allows it, but outreach and perseverance work better, Erney said.

The fear is that involuntary treatment laws will be abused, as commitment laws were in the old days, said Joseph A. Conway, executive director of the Mental Health Association of Reading & Berks County, Shillington. Changes in funding, services

How much money a person has should not determine the quality of services he receives, said Mary Ann, whose son recently had to leave the Caron Treatment Center near Wernersville because he ran out of money.

“Here in Berks County is a place people come to from all over the United States and the world,” Mary Ann said. “It’s a No. 1 place. But where are we going to get another $24,000?”

A result that is some people forgo treatment and live on the streets, said Mary Lou Guntz, chief executive of the National Alliance for the Mentally Ill, West Reading.

Margie Werner, behavioral health services director, Reading Hospital, said she sometimes can’t get a patient whose diagnoses don’t fit a specific definition admitted to treatment because the disease isn’t classified by treatment programs as serious enough.

That means a patient with agoraphobia — a fear of open areas — whose symptoms are so severe they prevent him from leaving the house can’t get help, she said, because anxiety disorders aren’t considered a top priority.

Admission and payment decisions should be based on the severity of the symptoms, she said.

Dr. Larry A. Rotenberg, a forensic psychiatrist at Reading Hospital, said that if his dream came true, funding would be more generous and more easily available.

Patients say that even when money isn’t a problem, getting an appointment can be difficult because providers are so busy.

Realtor Brad S. Weisman went to Lancaster for treatment for anxiety disorder because he would have had to wait three months in Berks County.

Advocate Conway said the mental health system also needs steady funding for advocacy and more low-income housing for patients.

The alliance wants more medical research, Guntz said.

“We would all like a cure,” she said. Changing attitudes with education and words

People with mental illness often reject treatment because they are embarrassed, said N. Martin Baiada of Hamburg, who has schizophrenia.

“Stigma is like water over a rock,” he said. “It wears you down.”

Other people think people with mental diseases are all the same, Kubizek said: crazy, homeless people.

Education is key to ending stigma, Kubizek said.

Dr. Andres J. Pumariega, psychiatry chairman at Reading Hospital and a specialist in child and adolescent psychiatry, said schools should play a larger role in dispelling such myths because children with illness can be traumatized when their peers reject them and even when teachers have a prejudice against mentally ill students.

“Anti-stigma education should be a must in schools,” he said. “Children recoil and become fearful when they see someone who’s different.”

Kubizek, who has bipolar disease, said employers should pay attention, too, because they are likely to have some workers with illness.

Advocate Guntz said lack of understanding leads to stigma.

“It is an illness,” Guntz said. “We don’t need to call someone crazy or any other name. Do you call someone with cancer crazy?

“If we understand it’s an illness, we can recognize it, and we can decrease our fears.”

Conway said mental health professionals have borrowed the term recovery from substance abuse professionals because it sends the message that people with mental diseases do get better.

Dr. Edward B. Michalik, county mental health director, said calling people with mental diseases consumers or clients instead of mental patients also softens stigma.

“It’s not political correctness,” he said, explaining: “It doesn’t demean those people out there deciding whether they want to go for help. If someone calls them a mental patient, I guarantee you they will have a harder time reaching out for help.”

A public information campaign highlighting great figures in history who had mental illnesses — such as Albert Einstein or Abraham Lincoln — would be helpful, psychiatrist Rotenberg said.

“The vagaries of the mental state has been part of humanity since time immemorial, but somehow we’ve not been able to do as good a job as we should to make mental illness as acceptable as any other illness,” he said. Changing lives

One by one: The time to make decisions about what will happen when a person is unable to handle his own affairs is when his symptoms are under control, Baiada said.

A booklet helps the person make decisions and fill out the appropriate forms, he said.

“It’s like being a 5-year-old and learning to tie your shoelaces,” he said. “Once you know how, you breeze right through it.”

Advocate Conway said the documents, known as a mental health advance directive, include information such as who should handle finances or what medications the patient doesn’t want to take.

“You can lay all these tracks that people have to follow,” he said.

Guntz of the national alliance said people also can create action plans to go with the directive.

They can list changes in their behavior that should alert friends or family when symptoms are starting.

The plan also can include coping strategies that people with illness can use to prevent their symptoms from getting worse — taking a walk, calling a supporter, calling the doctor, taking a few days off work or in the worst case, self-admittance to a hospital.

Group by group: Support groups are invaluable because they build networks of people with common problems, said Conway of the Mental Health Association.

“It’s free,” he said. “You’re co-equal with everybody in the group.”

Support groups can cut costs because some support group members don’t need as much therapy, Conway said.

Guntz, an advocate, said peer support is invaluable.

“They can see the life that this other person has, how they got the things they wanted for themselves in life,” she said of participants.

As a community: The mental health organizations and care providers in Berks County need to unite, psychiatrist Pumariega said.

“I think we need far less fragmentation and far more coordination in the system,” he said. “We have too many providers … going their own way.”

Pumariega said he has worked with children who are involved with five or more agencies, all of them trying to provide care without a common plan because privacy laws prevent them from sharing information.

“They need to be working together at the local, city and state level,” he said. “They need to coordinate with each other. They need to effectively use the expertise in the community.”

Cheryl D. Knepper, clinical director of adolescent services at Reading Hospital, said agencies also need to partner with schools so that students, teachers and parents can be educated all at once.

Michalik, county mental health director, said state government should restructure the entire system.

“Would you want to go to the Department of Public Welfare to get services?” he asked. “Even the name makes me cringe.”

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Copyright (c) 2006, Reading Eagle, Pa.

Distributed by Knight Ridder/Tribune Business News.

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