Rep. Murphy Continues To Push For Reforms In Final Hours, Emails Question NAMI’s Stance

Posted July  30, 2014

Representative Tim Murphy  (R-Pa.) is continuing to push for passage of his  Helping Families in Mental Health Crisis Act (H.R. 3717) even as the clock to the August 1st  congressional recess counts down. Meanwhile the bill’s supporters continue to ask why the National Alliance on Mental Illness has not urged its thousands of members to lobby for its passage.

On the House floor Tuesday (July 29th), Murphy described barriers that are keeping individuals with mental illnesses from getting meaningful care. As a result, some 365,000 of them are in jails and prisons. Today (July 30th), Murphy will co-host a congressional briefing where he will call for reforms  in the IMD exclusion – a tool which the federal government uses to prevent states and private mental health care providers from operating facilities with more than 16 beds. The federal government adopted the IMD rule in 1965 as part of its deinstitutionalization campaign. Its refusal to allow Medicaid dollars to be spent on patients in large hospitals is one reason why states began closing down those facilities.

At the briefing today, Murphy and Rep.  Eddie Bernice Johnson, (D-Tx.), a cosponsor of H.R. 3717, will explain how the IMD rule is unintentionally contributing to homelessness. I saw this first hand in Miami when a successful housing program called Passageways was forced to vacate 16 beds in its 32 bed housing unit because of the IMD rule. The program’s founders were hard pressed to find suitable housing for those 16 clients who had been living in clean, comfortable and safe rooms. Having half of the program’s clients booted out of their rooms also had a financial impact on the program. This incident was a perfect example of why the National Alliance on Mental Illness, the nation’s largest grassroots mental health agency, has been calling for reform of the IMD rule.

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With Time Running Out, The Fight Escalates: Helping Families in Mental Health Crisis Act

Pennsylvania Republican Tim Murphy  urged his fellow House members on Thursday morning to support and pass H.R. 3717, the Helping Families in Mental Health Crisis Act, before August 1st, when Congress goes on recess.  Although more than one-third of House members have agreed to co-sponsor the bill, it remains stuck in the House Energy and Commerce Committee. That committee’s chairman, Rep. Fred Upton (R-Mich.) reportedly has said he will not release the bill to the House floor for a vote unless a consensus is reached between Murphy and Democrats who introduced their own bill to stop Murphy’s.

In his five minute speech, Murphy said that fifty percent of persons with schizophrenia suffer from a neurological impairment that makes them incapable of understanding they are ill.

We deny people the right to treatment. We deny them the right to get better. How cruel is that?…The federal government sits oblivious to the problem, and in some cases, actually creates barriers to treatment for those who need help the most…We tell families that federal laws prohibit you from knowing why your loved one is in a mental health crisis, and doctors tell the family your son is only a little dangerous right now, but please bring them back when they become truly violent and then they can be treated. How absurd. Can you imagine if we told someone with diabetes, your blood sugar is too low but we are going to wait until you are in diabetic shock before we give you insulin? The doctor would be fired, the hospital would be sued, and we would ensure that it never happens again. Yet, for families in a mental health crisis, this scenario plays out every single day and not a word is spoken about it.

Murphy delivered his speech a few days after opponents of H.R. 3717, issued an ACTION ALERT urging persons diagnosed with mental disorders to lobby against Murphy’s bill. The National Coalition for Mental Health Recovery described Murphy’s legislation as “shockingly regressive” and warned that its passage would “reverse some of the most significant advances of the last 30 years in mental health services and supports.”  The group said it was urging its supporters to contact their representatives between July 21 to August 1.

If any of your Representatives are co-sponsoring, you should respectfully request that they remove their co-sponsorship.

I’ve written before about the hearings that Murphy’s subcommittee held before he drafted his bill. I testified at one public forum in favor of adopting a “need for treatment standard” rather than using “dangerousness” as a criteria for involuntary commitment.

While my call for a more realistic standard puts me at odds with the bills’ opponents,  it is only one — and arguably not the main issue — they oppose.

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Faith Groups Meet At APA — A Report From Rev. Johnson

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The Rev. Alan Johnson has written blogs for me about The White House summit on mental illness and the role of faith based groups in helping reform our current system. He’s also written about his response to a suicide in the congregation that he attends. I asked Alan to give us an update on what faith based organizations have done since the White House conference.

What a box lunch can do!

By Alan Johnson

During a box lunch at the White House Conference on Mental Health in June 2013, a psychiatrist and a faith leader began a conversation about the interface between mental health and faith. Given that the psychiatrist was the president-elect of the American Psychiatric Association, Paul Summergrad, and the faith leader was Rev. Curtis Ramsey-Lucas, a leader in the Interfaith Disability Advocacy Coalition, energy erupted as they met for the first time over lunch.

Their initial conversation led to 45 people from across the country coming together for a one-day event, “Mental Health and Faith Community Partnership Steering Committee Meeting,” just over a year later, on Friday, July 11, 2014 at the national offices of the APA in Arlington, Va.   Participants represented a strong balance between psychiatrists and faith leaders.

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Left With Questions: A Daughter’s Dilemma

 

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A reader contacted me recently to talk about her mother. I asked her for permission to share her story because it is representative of the emails that I receive each week from distraught family members trying to get meaningful care for someone they love. At her request, I have deleted her name.

A Daughter’s Story 

A few days ago, my brother and I sought court commitment for my mother.

We have watched her mental health deteriorate for years. It has been incredibly sad and frustrating, to say the least, and we have tried again and again to help her.

She believes the government and others are spying on her because her blood holds the cure for cancer and that pharmaceutical companies, the government and her family are making millions off her.  She has not been easy to be around, many times accusing family and friends of conspiring against her.  Her thoughts have become increasingly disoriented and dominate her daily activities. She changes her cell phone, email and locks regularly.  She sometimes wore a patch over one eye because she believes a lens was implanted through cataract surgery, to prevent the government from seeing all she does.  Her days are spent at the Apple Store, AT&T store or going to the FBI, Police or local attorneys so she can report the conspiracy or seek help fighting it.

In her own words, my mother says she exists in a “living nightmare.”

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A Parents’ View of a New State Mental Hospital

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During the past fifty years, there has been a national, ongoing campaign to close state mental hospitals. The Justice Department, state governments and civil rights advocates have pushed the idea that mental hospitals are no longer necessary. Even my friend, Dr. Lloyd Sederer, who runs the New York State mental health system, recently wrote this in a Huffington Post blog:

The use of hospitals, which by their nature abridge liberty, is the least desirable alternative for someone with an acute mental illness.

No one wants to return to our nation’s asylum system where people were warehoused and abused. But can everyone receive the meaningful treatment  that they need in a community setting or do some severely mentally ill individuals require a hospital stay to stabilize the symptoms of their illness before they return to the community?

I find it interesting that if a doctor suggested that hospitals abridged liberty and were unnecessary for treating illnesses that did not involve the brain, such as cancer or heart disease, the medical community would be horrified. Yet with mental disorders — that involve the most complex part of our body — hospitals are viewed with distrust and disdain.

I was thinking about this irony recently because of an unsolicited email that I received from a Virginia couple who wrote to tell me about how happy they were that their son was receiving treatment in Virginia’s newest state mental hospital. That’s right, Virginia has built a new facility.  

Visiting Our Son

Do the words “mental hospital” conjure up an image of a dark, foreboding facility? Then you will be pleasantly surprised by the look of the new Western State Hospital in Staunton, Virginia.

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My Son Says: “If You Are Afraid To Tell Your Story, Stigma Wins”

peteinterview

When I wrote my book about mental illness and my family, I referred to my son by his middle name to protect his identity. Since its publication, Kevin has become a peer-to-peer specialist and an advocate for individuals with mental illnesses. We recently were interviewed by the local NBC station here. Kevin wrote about it on his Facebook page and when I read it, I asked if I could share it with you. I’m glad he said yes. We don’t agree on every issue but I greatly admire his courage in speaking out against stigma. 

By Kevin Earley

For anyone who hasn’t heard, I was interviewed by Mark Segraves of NBC channel four Washington today. They are doing a two minute piece for their Changing Minds series on mental illness and specifically for this piece they are focusing on the ordeals that my father and I went through during my past, and also profiling my current position in the mental health field. They interviewed me for about thirty minutes and my father spoke for just as long. I will update everyone as to when the piece airs, as of now, all I know is it is not slated for this week.

 

My dad was tearing up when he spoke about the time he felt like he wished I had “never been born” because he didn’t want to see me suffer and how it made him feel like a bad father for feeling that way. He talked about how he lied to police to get them to take me to the hospital and not to jail. We revisited what it is like getting Tasered, and how I now help to teach police better ways to avoid escalation and the irony of how I went from one side of the experience to the other side.

I talked about how I live day to day and what people can do to recover and control their own destiny in regards to their treatment. It was an emotional and surreal experience, especially since we were revisiting some of the darker parts of my life, but it reminded me how far I have come on my journey and how fortunate I am to still be alive and able to help others with my story.

I know there are probably some of you on my timeline who know me casually and may not be aware of my past, but I feel that being open and honest is the best way to deal with it. If you are afraid to tell your story, then the stigma wins, the fear wins and nothing changes. I am not naive, but hopefully, the story will reach others going through similar challenges and inspire them on their path. If that means that some people will look at me odd, or criticize me or think of me badly, then that’s the price I pay.

This continues to be a big issue in our country, as people everywhere are reaching their wits ends and violent shootings seem more and more commonplace, and I know that my name will be linked to this if I apply for jobs or if potential dates Google my name. But I can’t hide who I am and what I’ve been through and most importantly, how I overcame and ended up where I am now. I am fortunate that I beat the odds and have a happy ending to my story.

This is my life story and I’m not ashamed of my life or my story.

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