On Capital Hill, VA State Sen. Craig Deeds Vocalizes Family Frustrations Felt Everywhere

In a powerful testimony before Congress, Virginia State Representative Craig Deeds laments the desperate state of the public mental health system and its deleterious effects on families of loved ones in the maelstrom. Senator Deeds is the father of Gus Deeds, a promising son befelled by mental illness. Desperate to get Gus the help he needed, Senator Deeds tried in vain to find an appropriate bed or program to address Gus’ needed. In the end, with nowhere to turn, Gus committed a violent suicide, but not before he slashed his father several times, including across his face. Senator Deeds’ moving words echo the plaintiff pleas of family members everywhere in the maelstrom.

See Senator Deeds brief remarks starting at 3:06:00.

[Thanks to advocate Peter Earley, also a family member, for bringing this to our attention.]

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New at “Watch…”: Capitol Ill, from the Treatment Advocacy Center

Treatment Advocacay CenterThe inadequacy of treatment in the public mental health system is the bane of every family navigating the maelstrom of mental illness. The Treatment Advocacy Center, led by renowned American psychiatrist Dr. E. Fuller Torrey, has launched a new media campaign to publicize this disgraceful failure.

The new media campaign is entitled “A Bed Instead“. As part of this campaign, “Capitol Ill” is a new video portraying the horrible consequences of insufficient treatment beds in the public mental health system. The bed shortage resulted aBedInsteadfrom “deinstitutionalization”, a well-intended social movement begun in the 1980s to increase community-based treatment options for loved ones. The move was also intended to eliminate what had become the horrible neglect, abuse, and poor care of mentally ill patients of institutionalized mental health care. Much of this initiative was made possible by the introduction of new psychotropic medications that enabled individuals better to manage psychosis symptoms and thus more easily live in community settings.

But the good intentions have never been fully realized. And they swung to social activism pendulum too much to one side. The outcome has been a woeful shortage of psychiatric hospital treatment  beds for those who critically need them, leading to a tragic increase in the numbers of loved ones with untreated psychiatric disabilities winding up in jails or homeless on the streets.

After their loved ones, family members bear the heaviest burden arising from this unacceptable social policy. See more about this impact  in the trailer below.

See all of PyschOdyssey’s posted videos and documentaries here.

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New at “Watch…”: Mental Illness On Trial

Mental health care? For too many, what actually occurs is mental illness criminalization. How could this be? A new video from The Treatment Advocacy Center, called Mental Illness on Trial, explains how.

In 1963, President Kennedy signed  The Community Mental Health Act. Its purpose was to transform the public mental health system from large, impersonal, neglectful, deficient, and even corrupt institutions to more humane and effective community mental health treatment options. The process was called “deinstituionalization”. The goal was noble, but the execution was disgraceful. Instead of loved ones being deinstitutionalized from hospitals, they were reinstitutionalized, mostly in jails. Thus was mental illness effectively criminalized.

The Treatment Advocacy Center has long following this abysmal trend and advocated for sufficient treatment for all loved ones needing it. Mental Illness On Trial very effectively describes this urgent problem. The film describes the radical reduction of psychiatric treatment beds despite our society’s increase in mental illness. Also discussed is the condition of anosognosia, or lack on insight, which often attends to victims of strokes and dementia and especially psychiatric disabilities. Anosognosia causes too many loved ones not to know they actually have psychiatric disabilities and thus to refuse critically needed treatment.

Featured in the film are Rep. Patrick Kennedy, now a mental health advocate, and Dr. Jeffrey Lieberman, head of psychiatry at Columbia University (although objectionably dressed in his lordly white lab coat, which unduly overemphasizes the medical model of recovery, instead of more person-friendly attire that would signal more mutuality with others).

Family members navigating the maelstrom of mental illness need to understand both the critical shortage of psychiatric treatment beds in the mental health system and the condition of anosognosia which so bedevils a loved one’s ability to be treated correctly.

See all of PyschOdyssey’s posted videos and documentaries here.

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PsychOdyssey Calls For Support of NAMI Mercer

NNAMI MercerAMI Mercer is PsychOdyssey’s local affiliate of the National Alliance on Mental Illness. Today, to mark the beginning of May as Mental Health Awareness Month, PsychOdyssey’s Tom Pyle launched a personal fundraising campaign for NAMI Mercer. Tom dispatched the letter below to many friends and loved ones to encourage all to support one of his favorite charities, NAMI Mercer.

To contribute to Psychodyssey’s appeal for NAMI Mercer’s 2016 Walk, click here. (If prompted for a team search, type “psychodyssey”.)

Text of Tom’s appeal letter:

Psychodyssey's Tom Pyle

PsychOdyssey’s Tom Pyle

Dear Friends of Mine,

I reach out on behalf of an outstanding local group serving a cause and community around Princeton personally critical to me: NAMI Mercer.

Mental illness often shreds families. The vicious vexations that attend mental illness tear families apart. Mental illness often swamps families. The chronic heartbreak, emotional volatility, bureaucratic indifference, system insufficiencies, social isolation, and financial ruination that attend mental illness can plunge families into a swirling maelstrom that often sinks many.

Who can knit such torn families back together? Who can help them navigate the stormy shoals of despair back to ports of hope for their loved ones and themselves? The National Alliance on Mental Illness (NAMI).

When mental illness besieged my family, NAMI stitched us back together and steered us to critical supports. Through my local Mercer affiliate, NAMI repaired and restored my family from its crisis. Because it so well served me, thus do I so willingly serve NAMI. I am a NAMI Mercer board member, its Advocacy Committee chair, and as a teacher in its award-winning Family to Family education program.

Tom Pyle with NAMI Mercer friends at April 29th NJPAC symposium

Tom Pyle with NAMI Mercer friends at April 29th NJPAC symposium

I frequently speak publicly on its behalf. Last week I was NAMI Mercer’s panelist at a NJ Performing Arts Center symposium for a new play about mental illness. We also partner on special projects. This week, based on a proposal I initiated, Princeton Community Television chose NAMI Mercer to be one of its 2016 Community Partners, to co-produce a documentary about the family experience with mental illness.

For me personally, no cause or civic organization has been more effective, meaningful, and fulfilling than NAMI. It is a peerless provider of essential support services to families and loved ones navigating the maelstrom of mental illness.

May is Mental Health Awareness month. Tomorrow NAMI Mercer kicks off the month with its major annual event, the NAMI Walk. The Walk’s purpose is threefold: raise familiarity, raise friends, and, unabashedly, raise funds.  As one of NAMI Mercer’s 400 member families, tomorrow Molly and I will be out walking with NAMI. At the same time, we two will begin our personal fundraising drive. Our month’s personal goal is to raise $2,500. By month’s end, and by God’s grace, may it become $25,000!

Can you join us? With whatever amount or acknowledgement, please join us to strengthen NAMI Mercer, a critical community resource doing incomparable work on an incontestably challenging issue, a unique civic organization doing so much (as I know personally) for loved ones, their families, and our community navigating the maelstrom of mental illness.

Thank you for your support. With best wishes,

Picture of Tom's signature

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To respond to Tom’s appeal for NAMI Mercer, click here. (If prompted for a team search, type “psychodyssey”.)

Below is Tom’s previously recorded appeal for NAMI Mercer:

To donate to PsychOdyssey’s campaign for NAMI Mercer, click here.  (If prompted for a team search, type “psychodyssey”.)

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April 29: PsychOdyssey To Join NJPAC’s Stage Reading Symposium For SANISM, A New Play About Mental Illness

NJPACOn Friday, April 29, from 7:00 pm to 9:30 pm, the New Jersey Performing Arts Center (NJPAC), one of America’s leading cultural venues, is hosting a stage reading and audience discussion symposium for a new docu-play about mental illness. The play is called SANISM, written by David Lee White, who was awarded a commission by NJPAC’s Stage Exchange Program to create the play. PsychoOdyssey’s Tom Pyle has been invited to be one of symposium’s panelists to react and respond to the play and its message after the performance. Proceeds from the event will benefit the Mercer County affiliate of the National Alliance on Mental Illness.

SANSIM is a 90 minute docu-play based on interviews with people with mental illness, as well as their families, health care workers, and social service organizations. The reading will feature actors Maria Konstantinidis, Newton Buchanan, Deena Jiles, and Dara Lewis under the direction of Charlotte Northeast.

Playwright David Lee White is Associate  Artistic  Director  and  Resident  Playwright  at  Passage Theater  in Trenton, New Jersey. Mr. White is also the curator of the Rider University New Play Festival, a play writing instructor at Play Penn in Philadelphia, and teaches Dramatic Analysis at Drexel University. White describes SANISM below:

SANISM’s patron is NJPAC’s Stage Exchange, a new play development series that commissions local playwrights to create works with social issues in mind. All commissioned plays are already guaranteed full productions beyond their one-night-only staged readings. SANISM is one of three new plays commissioned by Stage Exchange for 2016 that will receive staged readings at NJPAC in Newark, accompanied by panel discussions with academics, activists and artists on the subject matter.

Also joining the symposium panel will be Suzanne McConnell, a New York based fiction writer and editor, and Nancy Gross, formerly a writing instructor at City University of New York and now Community Liaison consultant for Palliative Care at Overlook Medical Center in Summit, NJ. Co-sponsoring the April 29 stage reading and symposium is the NJ Theatre AllianceNew Jersey Theatre Alliance, based in West Orange, NJ, a service association “megaguild” of 33 theaters around New Jersey. Mr. White’s home theater, the Passage Theater of Trenton, NJ, is one of the Alliance’s members.

For further information about the event, click here.

For tickets, click here.

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NJ’s Supportive Housing Association’s Excellent Op-Ed, and Psychodyssey’s Response in Support

Supportive Housing AssociationThe New Jersey Supportive Housing Association is a leading crusader in the Garden State for more and better supportive housing especially for those with psychiatric and developmental disabilities. Its energetic, impassioned, and very effective executive director is Ms. Gail Levinson. Gail recently took up her cyber pen to editorialize in NJ Spotlight about the affordable housing crisis in New Jersey, challenging among others the New Jersey League of Municipalities to do the right thing, namely, permit more affordable and supportive housing stock to be built in New Jersey’s towns.

Gail Levinson, Executive Director, NJ Supportive Housing Association

Gail Levinson, Executive Director, NJ Supportive Housing Association

Gail wrote: “Much more can and should be done to solve our housing crisis; limiting access is not a solution. A primary goal for individuals with disabilities is the desire to be accepted and included in local communities. So why does the New Jersey League of Municipalities, which represents the interests of towns and cities, exclude rather than accept them?”

 Read the rest of Gail’s fine editorial here.

Psychodyssey’s Tom Pyle wrote a response to Ms. Levinson’s op-ed and one of the comments made about it. Psychodyssey reprints the response it its entirety here:

Bravo, Gail Levinson for a critical op-ed on a critical subject. So many things to talk about! Hear the wail of one lowly citizen seeking and not yet finding affordable housing for his disabled loved one!…

Indeed ZONING is a critical obstacle. In Princeton, where I live, the entire zoning plan completely skews to large and expensive single family housing. There is little possibility currently to intensify land use sensibly by permitting denser zoning, or to enable innovations possible from the “small house movement”, or to permit families to build on their own properties stand-alone supplemental housing for their disabled loved ones.

Another impediment in many towns is ENVIRONMENTAL FUNDAMENTALISM which seems unfortunately, if surely unintentionally, to put plants before people. Recently in Princeton, the Town Council voted to take 22 developable acres off the market as another “open space” purchase, despite the Town already having met and exceeded its master plan for open space, and also despite the Town not properly tending to the maintenance and care of the open space it already has. The acquired land was slated to be developed as a 55+ community. We need better balance in our priorities. Housing first always!

A third impediment is INORDINATE MUNICIPAL SPENDING which shrinks options for more affordable housing. Despite local candidates’ perennial pledges to promote “affordability”, many municipal leaders keep busting through their budgets. Princeton’s aforementioned purchase of “open space” was voted despite a yawning $6mm gap in the Town’s capital budget that no one knows how will be closed. Rarely do municipal leaders seem to reduce spending, streamline services, and avoid duplication. While Mercer County has a perfectly suitable Board of Social Services in Trenton tending to the county’s disadvantaged, Princeton has its own human services department doing the same thing. This is expensive duplication of salaries for such municipal staff without the benefits of larger county-wide economies of scale.

A fourth impediment is RECKLESS STATE SPENDING. New Jersey’s state budget is in a world of hurt. How bad is our state’s budget? The credit rating agencies rank New Jersey 49th out of 50th. Decades of bad spending decisions by Trenton’s politicians in the pockets of special interests now leave no reserves or flexibility for our critical problems. We are left debating constitutional amendments to pay for politically determined pensions for the powerful while HMFA’s Special Needs Trust Fund, so needed to catalyze more affordable housing creation, remains depleted. Meanwhile, New Jerseyans remain the highest taxed citizens in the country, which is leading many to migrate. (If you don’t believe this, ask any New Jersey financial advisor.)

A fifth impediment is subtle but continuing ECONOMIC DISCRIMINATION. Despite many fine achievements, still many rich towns don’t want more poor people, thinking they have “done enough”. According to the Mercer County Office of Housing and Community Development (2010) and others, current affordable housing stock skews away from those who most need it towards those who need it less. As true around the State, Princeton’s stock for the upper end of the affordability class, i.e., middle income, is in surplus. At the very low, extremely low, and deeply low ends of the cohort, there is a deficit. Consider the plight of a disabled citizen with a permanent disability on SSI/SSD, receiving $785 per month or less than $10,000 p.a. As reported by SHA and other NJ housing advocates, some 120,000 New Jerseyans are at this lowest rung, but only 40,000 housing stock slots are available to them at their income levels. The parameters of the “affordable” housing programs are still too exclusionary, and thus discriminatory.

A sixth impediment is an excessive impulse of some municipal leaders toward SOCIAL ENGINEERING. In rich towns especially, there are sentiments in some quarters that the town “do something” for the middle class. Indeed the plight of the middle class is serious. They have lost ground in the last two decades. But they still have options and mobility as the disabled do not. Yet some housing policy makers in Princeton are suggesting that the Town subsidize middle class residents seeking affordable housing in that segment of stock already in surplus, for people up to 250% of the federal poverty level. Meanwhile, the extremely low and deeply low disabled citizenry must scramble, if their disabilities don’t preclude, for the woefully insufficient stock at their level. Such well-meaning but misguided elite sentiment sometimes seems to want to subsidize the “little” people who already have while denying the littlest people who still have not.

So much need. So far to go. Affordable housing for New Jersey’s disabled—a truly vexatious challenge. It is our state’s premier social justice issue at this time. I salute Gail Levinson and her excellent SHA team for keeping the spotlight squarely on this very difficult problem. She needs and deserves all our support.

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New at “Yikes!…”: NJTV stigmatizes NAMI Mercer Board Member Robert Hedden

NAMI Mercer Board Member Robert Hedden (l) with NJ Gov. Chris Christie at yesterday's Catholic Charities supportive housing roundtable in Trenton.

NAMI Mercer Board Member Robert Hedden (l) with NJ Gov. Chris Christie at yesterday’s Catholic Charities supportive housing roundtable in Trenton.

Here in New Jersey, Governor Chris Christie yesterday visited Trenton’s Catholic Charities to recognize both the successes of its supportive housing program for loved ones with psychiatric disabilities and the challenges of addictions of some within its programs. The event was covered by many New Jersey media outlets, including the state’s very own public television station, NJTV.

To accompany its video footage, NJTV posted a news article of the event to its website. One of the quoted subjects was Mr. Robert Hedden, a personal friend of Psychdodyssey and a mental health advocate and community leader in the Trenton, NJ, area.

While performing a general public service by reporting on an important event at Catholic Charities, NJTV unfortunately did a serious disservice to Mr. Hedden, a disclosed non-addicted mental health services consumer with a serious and persistent psychiatric disability, with a disparaging description of him as “a behavioral health patient”. Such a descriptor created the kind of needless and insensitive stigma that too often confronts our loved ones with psychiatric disabilities.

To address this matter, Psychodyssey’s Tom Pyle wrote the following message to NJTV:

To: NJTV

Attn: Mr. Michael Hill, Correspondent

Thank you for reporting Gov. Christie’s visit to Catholic Charities. Good news about success stories in New Jersey’s public mental healthcare system are most appreciated.

I note, however, your description of my friend and colleague, Mr. Robert Hedden, a Catholic Charities supportive housing client and fellow board member of NAMI Mercer,  as a “behavioral health patient”.

While surely not intentionally so on your part, this is a stigmatizing characterization of Mr. Hedden and other New Jerseyans like him. While not widely acknowledged or understood, stigma against fellow citizens with psychiatric disabilities is often one of the most pernicious forms of social bigotry against a class of people (and their families) as exists in our country today.

Robert has done our local community a great service in disclosing his personal psychiatric disability, thus helping us all better understand the challenges all loved ones with psychiatric disabilities face. He also well represents a supportive housing success story of how a fellow citizen with a serious psychiatric disability, with proper supports and community integration, can not only live, but thrive in spite of such a challenge. He is a vigorous and vibrant fellow citizen and local community leader who happens to have a psychiatric disability, not a “behavioral patient”, which conjures a disparaging image of a helpless, pathetic crazy person in a hospital gown or, worse, straitjacket. All of us who work with him are so grateful for his leadership, as we are for his inspiring model of personal recovery.

We New Jerseyans are fortunate to have NJTV as  a media leader for our state. Your coverage of such events and the way you describe them are critical not only to learning of the good work being done in our public mental health system, but also in guiding and correctly framing the public’s understanding of them and those like Mr. Hedden who are its success stories. With great appreciation for the good reporting you and the whole NJTV team undertake every day, let me gently but firmly request that you and your team do all you can with your descriptors to portray our loved ones with psychiatric disabilities as the heroes they truly are, and not diminish their dignity with stigmatizing, diminutive, and incorrect appellations such as “patients”.

With best wishes,

Sincerely,

Tom Pyle

Princeton, NJ

Member, NJ Behavioral Health Planning Council

Board Member, NAMI Mercer

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New Jersey Addictions: Charts, Graphs, and Data

(Updated March 31, 2016)

Charts, Graphs and Data title pageNew Jersey is in the midst of a opiate/heroin crisis. The crisis has vast implications for families of loved ones with psychiatric disabilities. More information for the public is desperately needed to understand the gravity of the crisis.

As part of work for the New Jersey Behavioral Health Planning Council, PyschOdyssey’s Tom Pyle has assembled charts and graphs that describe this urgent problem. Information has been sourced about the crisis at both the national and state level.

See PsychOdyssey’s slide deck of New Jersey Addictions: Charts, Graphs, and Data below.

Part One: US Information

Part Two: NJ Information

 

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New Link: Special Needs Alliance (a PsychOdyssey “best ever” find!…)

Special Needs AlliancePsychOdyssey is pleased to share its discovery (possibly one of our best ever finds!…) of an excellent information source for parents contemplating the special needs of their loved ones. The Special Needs Alliance (SNA) is a national, not for profit organization of attorneys dedicated to the practice of disability and public benefits law. Individuals with disabilities, their families and their advisors rely on the SNA to connect them with nearby attorneys who focus their practices in the disability law arena.

The mission of the SNA is to maintain a professional organization of attorneys skilled in the complex areas of public entitlements, estate, trust and tax planning, and legal issues involving individuals with physical and cognitive disabilities.

The SNA was formed in 2002 by a core group of prominent disability and elder law attorneys who recognized the unique planning needs of younger individuals with disabilities and their families. While the SNA now has members in 47 states, the organization continues to limit membership to those who have proven credentials in the area of disability law and advocacy.

Based in Tucson, AZ, the SNA is an invitation-only organization for attorneys. SNA membership is based on a combination of relevant legal experience in the disability and elder law fields, direct family experience with disability, active participation with national, state and local disability advocacy organizations, and professional reputation. As a result, an SNA member will have an average of 18 years of relevant legal experience, with no member having practiced law for less than 5 years. The majority have been certified as Elder Law Attorneys (CELAs) by the National Elder Law Foundation, the certifying entity for the National Academy of Elder Law Attorneys (NAELA).

The SNA website provides an excellent source of information for the lay reader about the complex area of special needs law. All families in the maelstrom would do well to get acquainted with the site and partake of the special needs lawyers who make the site possible.

 

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New Link: Consortium for Citizens with Disabilities

Consortium for Citizens with DisabilitiesThe Consortium for Citizens with Disabilities (CCD) is a coalition of national consumer, advocacy, provider and professional organizations headquartered in Washington, D.C. Since 1973, the CCD has advocated on behalf of people of all ages with physical and mental disabilities and their families. CCD has worked to achieve federal legislation and regulations that assure that the 54 million children and adults with disabilities are fully integrated into the mainstream of society.

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