The Future of People with Severe Mental Illnesses is in the Wrong Hands

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Planning for the future presents serious problems for parents of people with significant disabilities; when those families are dealing with psychotic illnesses, the future is especially frightening.

Organizations have become skillful at lobbying for humane supports for people with most disabilities. However, for people impacted by the most severe mental illnesses, the future is in the wrong hands.

To understand the problem, look at the taxpayer-funded Alternatives conference being held this week in Austin, Texas. Anyone assuming that this large, annual mental health event is designed to help people with the most severe mental illnesses just needs to study the program carefully.

While its theme promotes “Valuing Every Voice,” try to locate what the conference offers for people with psychotic disorders. Actually, you won’t find the words “psychosis,” “bipolar disorder,” “schizophrenia,” or even “mental illnesses” in the program, since this kind of labeling is considered to be the problem.

….The term “alternatives” refers to alternatives to science-based approaches to mental illnesses. Neuroscience understands schizophrenia and bipolar disorder to be brain disorders. Instead of letting the conference participants understand what is known about these disorders, this conference assumes that neuroscience has nothing useful to offer in understanding mental illnesses.

by Susan Inman, The Huffington Post

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Scholarships and Financial Aid for Students With Disabilities

Dollar signThis comprehensive, easy-to-use guide includes over 70 scholarships specifically for students with disabilities, thoroughly explaining eligibility, award amounts, and most importantly, how to apply. Please forward this info to anyone you know who is disabled and college-bound/in college!

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True Suicide Prevention Comes in the Form of Treatment, Bob

Former interim leader of the Liberal Party of Canada, Bob Rae (who is also a former NDP Premier of Ontario), wrote an op-ed in the Globe and Mail calling for a national strategy on suicide to remember Chris Peloso who recently ended his own life. While Rae is undoubtedly moved by sadness at this tragic loss of life, he has failed to do his homework.

His suggestion assumes that suicide prevention does not already exist and that no one is working on it. The fact is that Canada passed the Federal Framework for Suicide Prevention Act on December 14, 2012. Rae was still a Member of Parliament when this legislation was passed but, as one cynic said, maybe he was on a Rae Day when it was passed. For those too young to remember his tenure as the NDP Premier of Ontario, Rae Days refers to his 1993 Social Contract which imposed a wage freeze and mandatory unpaid days of leave for civil servants.

And of course Rae also does not seem to be familiar with the Mental Health Commission of Canada who are also working on suicide prevention and have developed a mental health strategy for Canada.

And, on Sept 10, 2013 Louise Bradley, the CEO of the Mental Health Commission addressed people on Parliament Hill in Ottawa for World Suicide Prevention Day. She talked about people requiring access to treatment services as a method to help prevent suicides.

The question then, Rae is not “why aren’t we doing anything about suicide prevention?” but “is suicide prevention effective?”.

by Marvin Ross, HuffPost Living

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A Trip To Cuckoo’s Nest Museum And Reminder Of How Far We Have To Go

A light snow was falling and motorists unfamiliar with slick conditions were moving slower than usual as I headed from Portland, Oregon, on Friday to nearby Salem to meet with Dr. Dean Brooks’s three daughters.

My friend, Dr. Brooks, died in July at age 96, after spending much of his life advocating for persons with mental disorders. He was best known for being the superintendent at the Oregon State Hospital when the movie, One Flew Over The Cuckoo’s Nest, was filmed there. Dean played himself in that classic film.

I was meeting with Dennie Brooks, Ulista Jean Brooks, and India Brooks Civey to tour a new museum that opened at the state hospital, in large part because of their efforts. More about the museum in a moment. First, I want to mention what I heard broadcast on the local National Public Radio affiliate as I was driving.

Several local reporters were discussing news events and because snowfall is unusual in Portland, one mentioned that the city only had 1,000 emergency shelter beds for the estimated 2,500 homeless persons living on its streets. She then mentioned that many homeless individuals were refusing to go into shelters despite the cold.

All of us have heard this before along with the explanation that the homeless actually prefer living outdoors under the stars to coming inside. This is nonsense. Having spent time actually talking to homeless individuals I can tell you that this explanation is more rooted in our desire to feel better about ourselves — for leaving them to freeze to death on the streets —  then in reality.

Yes, people do refuse to go to shelters. But if you dig deeper, you will discover that many refuse to go to shelters because (a.) shelters are often dangerous (b.) homeless individuals who go into shelters often lose all of their earthly possessions because there is no place to put them in a shelter so they are left behind and often destroyed on the streets (c.) shelters don’t allow you to drink or use drugs and many homeless individuals have co-occurring drug and alcohol problems as well as underlying mental disorders and are immediately kicked out if they drink or use drugs.

–Pete Earley

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Dr. Torrey Questions New NAMI Director About Her Views On Closing Hospitals

The new director of the National Alliance on Mental Illness doesn’t take command of our nation’s largest grassroots mental health organization until January 2nd, but Mary Giliberti already is being grilled by long-time NAMI activist Dr. E. Fuller Torrey.

Torrey, who has been critical of NAMI lately, has fired off a letter demanding the new director publicly state her views about the closing of state hospitals. Torrey and his followers are suspicious of Giliberti because she once worked for the Bazelon Center for Mental Health Law, a driving force behind “deinstitutionalization.”  Bazelon also strongly opposes the passage of Assistant Outpatient Treatment laws, which Torrey endorses.

I warned readers earlier this year of a split that was forming between NAMI members.  NAMI was formed by parents who were frustrated with the mental health system, but in recent years more and more consumers have joined its ranks and some of them are opposed to issues that NAMI has traditional supported.

Torrey has become the de facto leader of the so-called “NAMI CLASSICS” who believe NAMI should focus on serious mental illnesses, such as schizophrenia, bipolar disorder and depression. This group is largely pro-medication and pro Assisted Outpatient Treatment laws, which require individuals who have multi-hospitalizations and/or violent pasts to be forcibly treated. In recent years, more and more consumers  (persons with mental illnesses) have joined NAMI and they often oppose “paternalism” in favor of self-determination.

Although Torrey helped build NAMI into the most influential mental health organization in the nation, he angered many when he created his own non-profit, the Treatment Advocacy Center, to push for passage of AOT laws as well as other changes. A favorite speaker at past NAMI national conventions, Torrey has not been invited to speak in recent years and the last time his name was raised, some board members threatened to boycott the convention if he appeared. This year, NAMI invited journalist Robert Whitaker, known for his books that question the use of anti-psychotics,  a move that would have been unheard only a few years ago.

–Pete Earley

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A Year of Firsts for Mental Health

In the year following the Dec. 14 mass killings at Sandy Hook Elementary School, reforms across the country show that public officials might just be getting serious about addressing the nation’s broken mental health system.

funding_mapLast week, the White House announced that it will devote $100 million to increasing access to “mental health services.”

Later in the week Congressman Tim Murphy (R-PA) introduced the “Helping Families in Mental Health Crisis Act,” which aims to provide help to the most severely ill patients and their families. The proposed changes include exemptions to the HIPAA privacy rule, funding for mandatory outpatient treatment programs and clarification of standards that allow involuntary outpatient and treatment.

Earlier in November, the mental health community cheered when the Obama administration announced regulations that help make mental health parity a reality. Under the Affordable Care Act private insurers will now be required to provide coverage for mental illness equal to what they provide for physical illnesses.

At the state level, nearly a dozen state legislatures passed or improved their laws that determine who receives court-ordered treatment for symptoms of severe mental illness.  In the same period, thirty-six states and the District of Columbia increased funding for mental health.

We’ve seen a new and real public and political resolve to address the issues that involve people with serious mental illness, and the resulting breakthroughs will help lower barriers to treatment for severe mental illness, but many remain.

A half-century of abandonment and neglect will not be reversed by a single banner year (“USA has made slight progress on mental health since Newtown,” USA Today).  Help us keep the momentum going:

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The Treatment Advocacy Center

For the Mentally Ill, Finding Treatment Grows Harder

To the outside world, it came across as mood swings and anger. But Regina Cullison would later be told by psychiatrists she struggled with depression and anxiety—and that she needed help. And that is where her trouble began and ended.

According to her mother, there were few psychiatrists in the county who took private insurance. When Ms. Cullison lost her job as a dentist’s assistant, and with it her insurance, she switched to a nonprofit facility. Doctors came and went, and none stayed long enough to establish a regular pattern of treatment.

After two years, Ms. Cullison abandoned her search for professional help and tried marijuana. Her mother, Carolyn Cullison, who is the director of a mental-health peer support group, said that helped push away the demons. But in May, while living together, the pair argued. Ms. Cullison apologized, retreated to a bedroom and shot herself. She was 26.

As hard as it might be to acknowledge having a mental-health illness, finding professional help can be even harder.

by Gary Fields and Jennifer Dooren, The Wall Street Journal

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Medicare to Cover More Mental Health Costs

For decades, older adults with depression, anxiety and other psychological conditions have received unequal treatment under Medicare. The program paid a smaller share of the bill for therapy from psychiatrists, psychologists or clinical social workers than it did for medical services. And Medicare imposed strict lifetime limits on stays in psychiatric hospitals, although no such limits applied to medical care received in inpatient facilities.

There was never a good rationale for this disparity, and in 2008 Congress passed the Medicare Improvements for Patients and Providers Act. The law required Medicare to begin covering a larger share of the cost of outpatient mental health services in 2010 and to phase in additional increases over time.

On Jan. 1, that process will be complete, and for the first time since Medicare’s creation seniors who seek psychological therapy will be responsible for 20 percent of the bill while Medicare will pay 80 percent, the same percentage it covers for most medical services. (Payment kicks in once someone exhausts an annual deductible — $147 next year.)

In 2008, Medicare covered 50 percent of the cost of psychological treatment. Last year, it covered 65 percent.

The Medicare change follows new regulations issued last month by the administration for the Mental Health Parity and Addiction Equity Act, which expanded the principle of equal treatment for psychological illnesses to all forms health insurance. But that law does not apply to Medicare.

“Hopefully, older adults who previously were unable to afford to see a therapist will now be more likely to do so,” said Andrea Callow, a policy lawyer with the Center for Medicare Advocacy.

by Judith Graham, The New York Times

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A Phrase To Renounce For 2014: ‘The Mentally Ill’

I wince every time I read it. So does the president-elect of the American Psychiatric Association, Dr. Paul Summergrad, he says.

I saw it most recently in The New York Times, in the headline pictured above and a recent masthead editorial: “Equal Coverage For The Mentally Ill.” It’s all over, from The Boston Globe — “New Era for the Mentally Ill“ – to The Wall Street Journal — “Crime and The Mentally Ill.” Just about any media outlet you care to name.

What’s so bad about “the mentally ill”? Isn’t it reasonable shorthand in the usual headline space crunch?

In a word, no, says Dr. Summergrad, psychiatrist-in-chief at Tufts Medical Center and chair of psychiatry at Tufts University School of Medicine. He sees two main problems with it. First, the definite article, “the.”

“Imagine if I said that about any other group. It suggests that people who suffer with these conditions are somehow other than us, and can be put in a discrete and often stigmatized category. It creates a sense of otherness that is not the reality, statistically, of these illnesses.”

Any other group? I try a thought experiment, the headline “Equal coverage for the women.” Weird. “New era for the gays.” Offensive. “Crime and the blacks.” I get the point.

….The Associated Press style guide, which is highly influential in journalism, moved a bit toward “people first” language last year. A summary notes:

The AP’s decision to stop using “illegal immigrant” is part of a larger shift away from labeling people and toward labeling behaviors. For example, the new entry on mental illness says to refer to people “diagnosed with schizophrenia” instead of “schizophrenics.”

by Carey Goldburg, Boston NPR

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What is it That Makes Some of Us Keep Trying to Overcome Despite the Odds?

TED speakers share stories of overcoming a weakness and turning it into a strength in this one-hour NPR radio show.

1. Temple Grandin: Can Autism Be an Asset?

2. Shane Koyczan: What’s It Like to Be Young and Bullied?

3. Eleanor Longden: Is It Possible to Live With the Voices in Your Head?

4. Kakenya Ntaiya: Can One Girl Challenge the Traditions of Her Village?

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