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.

Although NAMI has called for changing the IMD rule and also is on record supporting passage of AOT laws and reforming involuntary commitment standards (changes that would be implemented in Murphy’s bill), the organization has not made an effort to rally its membership in support of Murphy’s legislation. Insiders say the national leadership is fearful that such a push would cause deep divisions in NAMI’s diverse membership, hurting the organization.  As reported last week on this blog, groups opposed to Murphy’s bill have used emails and webinars to urge their members to campaign against its passage. Opponents claim that Murphy’s bill will roll back hard-won civil rights protections, a charge Murphy says is unfair.

“Some activists are more comfortable allowing the mentally ill to live under bridges or behind dumpsters then in a psychiatric bed because they cling to their fears of the old asylum system as if medical science and our understanding of the brain had not advance over the last 60 years.”

Several organizations that oppose the bill would lose substantial funding if it passes. Murphy’s legislation would transfer millions in federal mental health dollars away from the Substance Abuse and Mental Health Services Administration. Instead those funds would be used by the National Institute of Mental Health, the government’s mental health research arm.

I received a slew of emails after I posted a blog Friday about a last minute campaign by opponents to block Murphy’s bill.  These are typical.

 There are parts of Murphy’s bill that go too far, but that shouldn’t keep NAMI from using its membership to put pressure on Democrats  to compromise with Murphy. NAMI should realize this is not an all or nothing fight and push Democrats to the negotiation table.

NAMI is afraid of losing money if Murphy’s bill is passed. It talks reforms but it’s all about keeping the status quo.

NAMI’s silence on the advocacy for this bill is extremely frustrating, but predictable.

I hold NAMI, (national) personally responsible for dragging their feet, sitting on the fence and not mobilizing advocates to be more vocal and supportive about this bill for the past year! Families like mine are drowning and our tax dollars (under SAMHSA) are being used to support this recovery nonsense that doesn’t help, (actually harms) our loved ones, who are trapped in the revolving door.
NAMI will be lobbying Congress during its national convention in September. The announcement that NAMI has distributed about its National Day of Action didn’t state whether or not Murphy’s bill will be one of the items on its list of concerns.
Join NAMI’s policy team for a briefing on legislative issues Wednesday, Sept. 3rd at 8 p.m. and then come be inspired at our Opening Legislative Plenary Thursday, Sept. 4th at 8 a.m. where former U. S. Representative Patrick Kennedy, former U. S. Senator Gordon Smith, and NAMI’s own executive director Mary Giliberti will make the rallying call to take NAMI’s message to Congress.

Rumors surfaced last week that supporters of Murphy’s bill had asked Kennedy to speak to the Democrats holding the legislation in committee but he demurred.

Murphy, a psychologist by training, began pushing for reforms shortly after the Sandy Hook Elementary School shootings.  He held repeated  hearings, inviting parents (including me) to testify about how current laws have prevented them from helping family members. His efforts have been stymed by Democrats Nancy Pelosi,  Henry Waxman, Ron Barber and Diane DeGette who have effectively kept Murphy’s bill stuck in committee.

Murphy has promised to reintroduce his bill during the next session of Congress if it doesn’t reach the house floor by July 31st. Politicians are famous for making promises, but given the determination he’s shown in writing and pushing his bill,  I’d say Murphy’s promise is one that will be kept — which means another fight between the bill’s backers and opponents will be coming.

(Immediately after posting this blog, a regular reader reminded me that NAMI did issue a statement about Murphy’s legislation in December last year. Here is what NAMI released.

To: NAMI State Organization and Affiliate Leaders
From: Ron Honberg and Andrew Sperling
Re: Mental Health Legislation in Congress
Date: December 17, 2013
We have received numerous inquiries about legislation introduced late last week by Congressman Tim Murphy (R. Pennsylvania) entitled the “Helping Families in Mental Health Crisis Act of 2013.” This memorandum is being shared with you to provide an overview of the
entire bill and to clarify NAMI’s position on it.The “Helping Families in Mental Health Crisis Act” has generated controversy and a significant
response from certain groups in the mental health field. These groups have largely focused on  provisions in the bill that they view as negative and have not discussed the many positive aspects of the bill.NAMI and a number of other organizations have avoided public criticism of the bill and have  written letters supporting specific provisions and expressing the desire to work with  Congressman Murphy to improve the bill into one that can be supported by the entire field.
What is NAMI’s Position on the Bill?

As detailed below, there are many positive provisions in the bill. Enactment of the positive  provisions would represent a significant legislative accomplishment on mental health. Because  of his personal background as a psychologist, Congressman Murphy is a key ally on mental
illness among Republicans in the House of Representatives. NAMI therefore believes that the  wisest strategy moving forward is to support the many positive provisions in the bill and to  work with Congressman Murphy and others to improve or remove the more controversial
provisions. Opportunities like this to advance meaningful legislation on serious mental illness  in Congress do not occur frequently.NAMI also recognizes that with most legislation it is very difficult to get language that everyone  stands 100 percent behind. We look forward to working through the political process to  advance the best possible bill.
Why is Congressman Murphy so concerned about serious mental illness?

Congressman Murphy is a psychologist with a background in providing community mental  health services to people living with serious mental illness. He is very concerned about the gaps  in mental health care and the fact that many individuals living with serious mental illness fall
through the cracks and experience multiple hospitalizations, homelessness, criminal justice  involvement, and other tragic circumstances. He is also aware that families frequently play an  essential caregiving and support role but also frequently encounter legal, policy and
environmental barriers in serving this role.
Congressman Murphy is Chair of the Oversight and Investigations Subcommittee of the House
Energy and Commerce Committee. With Congresswoman Diana DeGette (D. Colorado), the ranking Democratic member of the Subcommittee, he conducted three hearings on the federal  role in mental health services in the aftermath of the tragedy at Sandy Hook Elementary School
in Newtown, CT. NAMI Executive Director Mike Fitzpatrick testified at one of these hearings  and NAMI members were involved in all three of the hearings. Congressman Murphy has also  heard from many people about the tragic consequences of a failed mental health system.
Overview of the “Helping Families in Mental Health Crisis Act.”
The bill contains many provisions intended to improve the lives of people living with mental  illness, some of which reflect priorities that NAMI has worked on for years. These include:
 Improving community mental health services and integrated mental health and primary
care treatment through enactment of the Excellence in Mental Health Act;
 Expanding Medicaid reimbursement of inpatient psychiatric treatment;
 Reauthorizing the Mentally Ill Offender Treatment and Crime Reduction Act (MIOTCRA), an
important federal program providing resources to states, communities and tribal
governments for jail diversion, law enforcement and first responder training, and other
services to prevent unnecessary criminal justice involvement of youth and adults living with
serious mental illness;
 Improving the Health Insurance Portability and Accountability Act (HIPAA) and the Family
Educational Rights and Privacy Act (FERPA) to permit access to vital information for family
caregivers;
 Reauthorizing the Garrett Lee Smith Suicide Prevention Act, an important federal program
providing resources for suicide prevention and postvention;
 Improving access to psychiatric medication in Medicaid and Medicare;
 Enhancing federal coordination of mental health services through the creation of a federal
interagency Council on Serious Mental Illness
 Increasing resources for research at NIMH on early identification of serious mental illness in
youth;
 Authorizing a federal campaign to combat the stigma associated with mental illness;
 Reauthorizing federal programs focused on mental health services for children and youth
and
 Expanding Health Information Technology (HIT) resources for providers of mental health
services.
Certain provisions in the bill are more controversial, including:
 Transferring authority for administering the mental health and substance use Block Grants
from SAMHSA to a new Assistant Secretary for Mental Health and Substance Use Disorders
established through this bill;
 Reducing or eliminating funding for certain other SAMHSA programs;
 Eliminating the authority of state Protection and Advocacy programs to engage in lobbying
and class action lawsuits;
  Requiring some states to expand civil commitment criteria as a condition of receiving
federal block grant dollars;
Requiring some states to enact Assisted Outpatient Treatment (AOT) laws in states thatt have them (this would apply to only 5 states, since the majority of states have such  laws but rarely use them).
Process and Timetable
The Policy Committee of the NAMI Board of Directors will meet soon after the New Year to  discuss the bill and provide further guidance to staff. Staff will continue their efforts on Capitol sections. It  is likely that some of the provisions will be referred to other Committees in the House of  Representatives for consideration. While discussions about the bill will likely commence in  January when the House re-convenes, it is unlikely that serious consideration of the bill will  occur until Spring, 2014 or even later in the year.Thank you for your interest and for taking the time to read this memorandum.
Please contact
Andrew Sperling ([email protected], 703-524-7600) or Ron Honberg ([email protected], 703-
516-7972) with any questions or comments.Wishing you happy holidays and a healthy year ahead!

 

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.

Murphy’s bill would encourage states to expand the use of Assisted Outpatient Commitment, it would transfer control of federal mental health dollars away from the Substance Abuse and Mental Health Services Administration into the National Institute of Mental Health, and it would gut the government’s  Protection and Advocacy For Persons With Mental Illness Program (PAIMI). Opponents object to all of those changes.

While the National Coalition for Mental Health Recovery is leading the most recent lobbying effort against Murphy’s bill, it is hardly alone. Others fighting the bill include:  The National Empowerment Center, state PAIMI groups, the Bazelon Center for Mental Health Law, Mental Health America and The National Disability Rights Network.  These consumer advocacy groups endorse  “self determination” for individuals with mental disorders and generally oppose all  forms of required treatment no matter how psychotic an individual might be.

For the mental health groups cited above this is more than a philosophical debate. All of them receive federal funds either directly or indirectly from SAMHSA and losing those tax dollars would greatly weaken and threaten their advocacy efforts.

Murphy has gathered his own supporters, as well as, editorial endorsements from The Washington Post, Wall Street Journal and other prominent newspapers. His strongest supporter in the mental health community has been the Treatment Advocacy Center, which was founded by long-time SAMHSA critic, Dr. E. Fuller Torrey, specifically to push for adoption of AOT laws and “reduce barriers” to treatment.  Torrey’s protege, D.J. Jaffe, founder of Mental Illness Policy.Org., also has vigorously endorsed H.R. 3717. Both men testified in favor of the legislation at congressional hearings. Neither TAC nor Jaffe’s group accepts SAMHSA funds.

It is difficult to determine exactly how many individuals these groups represent.

The National Alliance on Mental Illness is widely acknowledged to be the largest grassroots mental health advocacy group in the country with several hundred thousand members and chapters in every state. NAMI is on the record supporting AOT legislation and before its former executive director resigned last year, he testified at one of Murphy’s public forums and said NAMI favored Murphy’s bill.

However NAMI has not issued any action alerts to counter the bill’s opponents nor has it urged its members in letters or emails to lobby for Murphy’s bill.  Given that Murphy’s legislation was crafted to address complaints by parents and families, NAMI  leadership’s decision to not mobilize its members suggests that its national directors and board are wary of being drawn into a divisive membership fray.

While NAMI was founded by parents, its membeship has expanded in recent years to include more and more consumers and that has lead to a questioning of  the organizations’ traditional viewpoints.

It will be interesting to see if Rep. Murphy’s bill is discussed during NAMI’s  upcoming national convention in Washington D.C. this September.

The American Psychiatric Association gave Murphy two standing ovations when he spoke at a recent conference and also thanked him publicly in a Dec. 12, 2013, letter for introducing legislation “calling for significant reforms to a broken public health delivery system.” But the APA has stopped short of urging its 33,000 members to lobby for Murphy’s bill.

The powerful National Council for Behavioral Health, which represents more than two thousand mental health provider agencies that employ 750,000 workers, endorsed four reforms in Murphy’s bill when he introduced it, but stopped short of supporting the bill’s most controversial changes, saying:

The introduction of the bill is the first step in a long process of discussion, debate, and potential future hearings or votes. The National Council has expressed our desire to work with Congressman Murphy throughout the legislative process to ensure that the bill fully meets the needs of mental health consumers, family members, and providers.

That’s Washington-speak for saying the Council was not going to back a bill that cut SAMHSA funding nor embroil its membership in a fight about AOT and a percieved scaling back of consumer protections.

While Murphy’s supporters would have welcomed a stronger membership lobbying campaign, especially from NAMI, the real obstacle to passage of  their legislation has been House Democrats. House minority leader Nancy Pelosi and California Representative Henry Waxman have reportedly assured opponents  that they will block Murphy’s bill from moving forward this session.

An unconfirmed rumor recently surfaced at the Capitol that Murphy’s supporters  had approached former Rep. Patrick Kennedy, who has become a major voice in mental health reform since leaving Congress, about wooing Democrats to support their side. So far in public, Kennedy has not commented about Murphy’s legislation. Other high profile Democratic advocates, such as Rosalynn Carter, haven’t either.

“While there are parts of Murphy’s bill that are needed, he bit off too much for most of us to swallow,” one insider told me.

Another said, “People are afraid of consumer/survivor groups. They are loud, relentless and often nasty.”

The bill’s opponents see Murphy’s suggested changes as a legal issue. They consider his bill an affront on civil rights. The supporters view the bill as a medical issue.  It would help individuals who are psychotic get  treatment. These clashing views are difficult to reconcile.

Murphy’s floor speech and his opponents Action Alert came during the same week that Connecticut businessman Ted Stanley announced that he was giving $650 million dollars for research aimed at  identifying the genetic underpinnings of mental illnesses. In my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, I describe how the Stanley’s son, Jonathan, suffered a mental breakdown while in college. The Stanleys contacted Dr. Torrey who suggested they begin donating funds to NAMI. The family later decided to move the bulk of its donations to two projects that Torrey helped found: TAC and the Stanley Medical Research Institute. The $650 million donation, the largest ever in mental health giving, will support research through the Stanley Institute in collaboration with MIT and Harvard.

One Murphy supporter sent me an email about  the $650 million donation. “Wish he’d chipped off a few million for lobbying to get Rep. Murphy’s bill passed — or at least enough cash to counter the groups who are  spending OUR tax dollars to oppose the bill and feather their own nests.”

The bills opponents feel confident Murphy’s bill will stay in committee given Pelosi’s and Waxman’s opposition to it and their ongoing lobbying efforts. As his speech indicates, Murphy has not given up and has suggested that he will reintroduce his bill in the next legislative session if it fails to reach the House floor this year.

 

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

praying

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.

The goal of the meeting was “to discuss and discern how religious and psychiatric leaders might work more effectively with one another to address the prevalence of mental illness in our society and stigma associated with mental health conditions.”

The meeting’s“fire in the belly” came from a talk by Patrick Kennedy. His urgent charge to us, his passionate plea, was for us to take leadership on addressing stigma about mental illness and act to adopt parity legislation. Sharing his personal and his family’s history of speaking out and acting for those who are marginalized and minimalized, he beckoned us to be like those who participated in the Freedom Rides or those who integrated the luncheon counters by holding demonstrations.The whole room was ablaze with promise and call. Such conviction is needed to propel our work.

My sense is that the combined wisdom and experience of the group may have been well beyond where some of the presentations took us. Had there been more time given to structured conversations, I am sure greater connections could have happened.

Presentations about the resources presently available from each of the sides on the bridge, APA and faith leaders, were helpful. APA does offer resources on faith/spirituality/religion, and the faith proponents do offer resources about mental health. I, as a faith leader, was unaware that the APA had these resources and I am pretty sure that APA members don’t know about the faith resources. So these presentations were a step in the right direction.

Above all, it was a ground-breaking meeting. It was energizing and very positive. It was intensive and expansive. It was rich and textured.

I came to the meeting with high expectations, perhaps unrealistically high considering it was just a one-day conference. My disappointments could have been addressed with more time for networking and for probing questions, more time for in-depth conversations about the language we were using. Do psychiatrists and clergy mean the same thing when they refer to “spirituality” and “recovery,” for example? We needed time to explore the prejudices and misconceptions we each hold about the others’ work and to dispel the distrust that has permeated some of our interactions in the past. We needed time to discuss the current interface between our professions and what our vision for the future might look like. If real encounter is to happen, there needs to be profound listening and transparent responses. And that takes time

In reality, the meeting was a baby step in terms of action, while also marking a huge leap in setting the stage for further work. I caught a glimpse of what the future could look like.

It all started with a box lunch. Who knows where it will end?

The Rev. Alan Johnson

Chair, Interfaith Network on Mental Illness (www.inmi.us)

Chair, United Church of Christ Mental Health Network (www.mhn-ucc.blogspot.com)

Left With Questions: A Daughter’s Dilemma

 

questions

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.”

Encouraging her to seek treatment served only as an insult to her.  Efforts at logic to show how her theories were impossible went nowhere.  She refused to believe she had a mental illness or delusions, so she told us and the Psychiatrist who she finally agreed to see.   Though she took medication for depression and anxiety, she ended up telling us she wanted nothing to do with us as long as we believed she had a mental illness.  This was “real” and she wanted us to help her file a lawsuit because her case was “big.”  When we told her we couldn’t fight something that wasn’t happening, she wanted nothing to do with us.

My brother and I are hoping the decision-makers will see that the conspiracy beliefs that caused her to cut hot wires inside and outside her home and to tinker with a neighbor’s air conditioner will be enough to show “threat to self/others.”  She cut the wires so the government couldn’t spy on her.  She scared the neighbor by cutting off their AC and telling them to turn off her porch lights so the government couldn’t find her home to radiate her.  She was sleeping on the floor downstairs to protect herself from the radiation.  Previous to that, my mother went to live in a hotel for a couple of weeks because she believed her neighbors were spies.

She needs help.

Today, I am reporting the results.

She was involuntarily committed for treatment, but sent to a treatment center that let her out after a few days. We were shocked. We still are in shock. “Reckless” was my brother’s response. We were kept in the dark because our mother was angry with us and the center’s HIPAA interpretation barred us from providing collateral information. My brother asked the name of the psychiatrist and upon learning of my mother’s upcoming release, I called to provide collateral information.  I was told, however, you could only leave voicemail and no return call would be made.

I am left with questions, frustration and a real sense of powerlessness. I am not writing today with a sense of hope.

Does the center not realize that it was her refusal to take medication and see a psychiatrist that landed her there in the first place? That they have created a swinging door for future treatment visits, next time, possibly through the criminal courts?

Did the psychiatrist know that my mother offered Power of Attorney to a manager at an Apple Store? Or that she went missing for five days wanting to die?

How can the court expect a medical expert to assess and diagnose a person who would withhold information based on a conspiracy-oriented state of mind? How can a psychiatrist expect her to take medication when released if he didn’t know she refused medication before?

HIPAA silenced her family such that contrary to our wishes, she was sent to a treatment center instead of a hospital where there would likely be more sophisticated diagnostic machines (such as an MRI), which is relevant because of her stroke history.  Additionally, we weren’t able to discuss family history of mental illness.

Guardianship. That was the response I received from a mental health call center when I asked for advice. He said, “So, you want her to be force medicated?” No, I want her to have her life back and get help and not end up in the bad places where people with untreated serious mental illness often end up.

Weeks later an update:  After the treatment center release, my mother moved out of her home into an apartment (because of her belief that the neighbors were spies).  Yesterday, the police came to find me and notify me that my mother is approaching her apartment neighbors and asking them if they are working with the government, also telling them not to come in her apartment and do studies on her.  The apartment manager said she is scaring the neighbors and wishes she would get help.  They were regretful to mention that more complaints could result in loss of tenants and eviction.

I told them and the police, we have done everything we can do.

There is frustration with a system that doesn’t work.  And blame for the treatment center and in particular the treating physician who should have seen that without court ordered medication, this was going to happen.

If the apartment asks my mother to leave, where ultimately will my mother live?  And what ultimately will happen to her?  This is all why we wanted to get her help.

Left with Questions: Threat to self or others and HIPAA. The inability of a treating physician to properly treat without all available medical history. Humanitarian questions and a patient’s rights, including a voice and opportunity to collaborate with treating physician. A Mother who will only take medication with a court order. Potential for homelessness. Problems of guardianship.

We can and should  form “more perfect” laws and hospital policies.

A Parents’ View of a New State Mental Hospital

western state

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.

The old facility (which first opened in 1828) was a hindrance to true recovery efforts. Although the staff has done its best in recent years on a limited budget to serve patients’ needs, employees were hampered by antiquated buildings which were dark and dreary.

Through a series of circumstances, our son was at the old facility for a month in September 2013, just prior to the opening of the new hospital. Now, he is a patient in the new Western State Hospital and the conditions there when compared to the old facility are like night and day.

The lobby is large, with comfortable chairs in small groupings. On the ward, there are screened-in porches, perfect for getting fresh air. There are enclosed courtyards for walking and larger outdoor spaces, including a basketball court, for recreation. The overall appearance of the facility is one of airiness and light, such a contrast from the dark forbiddance of the old buildings.

This new facility is a great compliment to the work of the treatment teams in guiding individuals towards their goal of recovery.

Architects tell us that how space is developed and laid out is very important to the sense of well-being. Subliminally, we feel better about ourselves if our surroundings are carefully laid out to include natural light, beauty, and open spaces.

Connie and I feel so grateful that Andrew is in such a world class facility getting the help he needs and wants. It is so unfortunate that one has to commit a crime or hurt themselves or someone else to get help. Andrew is doing very well and is turning out to be a success story. We went to see him the evening of June 10. This was a special day because his doctors told him he could have his guitar in his room. Music means so much to Andrew.

We arrived at Western and entered through the main entrance. One of the doctors that treated Andrew in September happened to be in the lobby when we walked in.  Seeing the guitar, he assumed that we were Andrew’s parent’s. He approached us and introduced himself. This gesture was very heartfelt and such a positive reinforcement of the efforts of the caring staff towards a recovery mindset.

We entered the secure ward without any issues. Of course, they inspected the guitar case and “wanded” us. However, everyone was friendly, polite and made us feel welcome. We were escorted to the visitor’s room where I placed the guitar case on the table.

Andrew entered the visitor’s room and his eyes immediately lit up when he saw the guitar case. We exchanged hugs. I suggested he take a look at his guitar. Andrew gently took the guitar out of its case, sat down and asked if we would like to hear a song he had written.

The song is called “Never Gave It Back.”

Tears welled up in our eyes as he played and sang. His voice sounded so confident and smooth. He still had this gift of drawing the listener into his music. When he finished, still strumming his guitar, Andrew said, “I guess it had to be this way….for me to get help. I am so grateful to be able to get treatment and so grateful that no one has given up on me. Thank you for being in my corner.  I really want to make a difference; this is the beginning of my fresh start in life.”

Andrew then gave us an envelope with a note inside. It contained a poem that he had written called “The Moment.”

“The Moment”

by Andrew Neil Maternick

The seeker sought and sought

Growing weaker, his life in a knot

When finally, at last at last

He realized no future or past.

It’s the moment that I must live

To find my heart so I can give

Back to so many who dared to care

A bright today I wish to share.

 The key to Andrew’s ongoing recovery has been  his acknowledgement of his condition, his willingness to work with his treatment team, family support, and continued hope for the future. Andrew still has a way to go. Recovery doesn’t happen overnight. But Connie and I feel strongly that Andrew will get through this and live a happy and successful life. He has lots of folks in his corner rooting for him!

What folks have to realize is that each case involving mental illness is different and involves different levels and types of treatments.  Mental hospitals are needed by many to stabilize and get the treatment they need to survive.  The only other alternatives for many are homelessness, jail, or even death.  If this country were aggressive in its “preemptive” treatment and care for those who suffer from serious mental illness, we believe that the level of dangerous behavior and “criminal” activity would be cut back significantly.  If only the stigma could be eliminated and mental illnesses were treated like other diseases in our society.  

We feel very fortunate that our son is being cared for in modern state of the art facility, with a well-trained staff. We hope that Western State hospital becomes a model for other states to follow.

Ray and Connie  Maternick

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.