More Stigma… with Corporate Sponsorship

Pennhurst Asylum Freak ShowLast October PsychOdyssey popped into a local Dunkin’ Donuts for a quick coffee and cruller. As we sipped and savored, we noted the pictured glossy handbill hawking an “haunted adventure” tour of the former Pennhurst State School and Hospital in Spring City, PA. Originally known as the Eastern Pennsylvania State Institution for the Feeble-Minded and Epileptic, Pennhurst was an institution for the mentally and physically disabled individuals of southeastern Pennsylvania. After a decade of controversy, the hospital closed on December 9, 1987.

As the handbill proclaimed, Pennhurst lives on as a tawdry cheap-thrills entertainment attraction called “Pennhurst Asylum–The Fear Is Real“,  promoted by a commercial outfit called Pennhurst Haunts, LLC. Pennhurst Asylum is a sister act to another haunted adventure called “Bates Motel, “America’s Favorite Haunted Attraction”. Here’s a sample of what the Pennhurst Asylum attraction offers:

For families navigating the maelstrom of mental illness, the Pennhurst Asylum freak show constitutes the worst form of stigma. Its crass and creepy theatrics stir up the worst characterizations of individuals with psychiatric disabilities and the facilities that serve them. Any family that has experienced hospitalization for psychiatric disabilities knows that it is no laughing matter, no occasion for fantastic titillations, no venue for vapid entertainment. Mental illness is a serious societal issue. The woefully inadequate treatment options for mental illness is a serious societal disgrace. The enormous burden carried by individuals with psychiatric disabilities and their families are a grave social injustice. Commercialized entertainment such as Pennhurst Asylum, which foments the worst stereotypes of a greatly disadvantaged class of fellow citizens and community members, constitutes grossly insensitive and harmful bigotry and prejudice.

Here is the entrepreneur behind this stigmatizing horror show:

“Pennhurst Asylum has been designed and constructed by Bates Motel Productions, LLC. Randy Bates has been operating professional haunts since 1991, most located in southeastern Pennsylvania. The Bates Motel and Haunted Hayride has been one of the most successful attractions in the country and attracts customers from almost every state. With his wife Anne, and six grown children, Randy runs several business from their farm in Gradyville, PA.”

Worse, Bates has several prestigious sponsors of his enterprise. They include upstanding entities such as Amoroso’s Baking Company, The Hair Cuttery, Dunkin’ DonutsSusquehanna Bank, and–incredibly!–The American Cancer Society.

PsychOdyssey does not begrudge Mr. Bates’ entrepreneurship or commercial successes. Nor do we wish to castigate or cast aspersions upon him. We suppose that he is creative, industrious, and well-meaning. (Indeed, he is a pioneer of an interesting new entertainment subindustry called “agri-tainment”, for which he was featured in a 2010 Wall Street Journal article.) We merely urge him and his sponsors to reconsider the social effects of stigma that Pennhurst Asylum perpetuates and ask that they more thoughtfully redirect their worthy showmanship and sponsorship inclinations to more constructive and less stigmatizing entertainment programming.

PsychOdyssey does agree with Mr. Bates on one point. When it comes to the effects of stigma on the lives of those with psychiatric disabilities and their families, indeed the fear is real.

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Things School Nurses Should Know

On January 29, PsychOdyssey’s Tom Pyle will be presenting to the winter meeting of the Union County (NJ) School Nurses Association. The title of his talk is “Schizophrenia, Psychiatric Rehabilitation, and Recovery: Things School Nurses Should Know”. The talk will describe his personal experiences as a family member navigating the maelstrom of mental illness, detail the components of psychiatric rehabilitation within the mental health system, and examine challenges ahead both for the practice and the sector.

A copy of his PowerPoint presentation slides, in two parts due to uploading limits, can be accessed below. (The rich graphics will slow the downloads a little; please be patient…)

Part 1

Part 2

 

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Anderson Cooper tries a schizophrenia simulator

What is schizophrenia really like? How do our loved ones experience it? If family members knew better the answers to these questions, they could be much more empathetic–and effective in assisting their loved ones’ recoveries. But how can we know what goes on in anyone else’s head?

CNN’s Anderson Cooper recently learned and reported on what it might be like. Below is a short YouTube clip in which Anderson is asked to do simple thought exercises while also coping with simulated auditory hallucinations. The engagement is similar to an exercise that NAMI’s Family to Family education class offers to its attendees. It is an effective means to understanding a loved one’s burden with schizophrenia’s symptoms.

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Will Medicaid’s Changes in New Jersey Improve Outcomes? PsychOdyssey presents at PRA Recovery Workforce Summit

Cover image for presentationImplementation of the 2010 Patient Protection and Affordable Care Act is bringing big changes to the nation’s Medicaid system. In many states, the changes include a) moving Medicaid funded behavioral health to managed care, b) expanding Medicaid’s roles by 25%, and c) reforming Medicaid’s rate-setting and payment  methods.

Will these changes improve recoveries for Medicaid beneficiaries diagnosed with schizophrenia? Using New Jersey as a case study, PsychOdyssey’s Tom Pyle addressed this critical question in a detailed presentation at the recent 2014 Recovery Workforce Summit conference of the Psychiatric Rehabiliation Association in a workshop entitled “Will the ACA’s Medicaid Changes Improve Outcomes for Schizophrenia? A New Jersey Case Study”.

Medicaid’s 3 big changes in New Jersey, as in many other states, are reform, expansion, and managed care. Citing 25 references, Tom’s presentation considered five change domains by whichMedicaid's 3 Big Changes to classify and evaluate elements of these 3 big changes relevant to psychiatric rehabilitation: access, availability, quality, cost, and innovation. It reviewed the requirements of care for schizophrenia, parameters of recovery from schizophrenia, outcomes and measures of progress with schizophrenia, and the Medicaid system today that funds treatments of schizophrenia. It examined the elements of three major Medicaid changes as they relate to three subgroups of New Jerseyans diagnosed with schizophrenia: those already enrolled in Medicaid, those to be enrolled under the ACA, and those who will still remain unenrolled even though eligible to be enrolled.

Comparable Medicaid ratesOf particular note are financial challenges specific to New Jersey. Recently downgraded by the bond rating agencies, The Garden State’s bond rating is now the second lowest of all the states, suggesting the fiscal challenges that it now faces. At the same time, New Jersey, a very high cost state, also has the lowest average Medicaid rates in the country, resulting in the highest percentage of doctors  (60%) not accepting new Medicaid Providers in NJbeneficiaries, which is twice the average percentage of doctors refusing new Medicaid patients in the rest of the country.

Access to health insurance will be achieved by Medicaid’s expansion. But with Medicaid roles under the ACA projected to expand by 25%, with very few new doctors who will accomodate them, availability of doctors to care for those on Medicaid with schizophrenia, will be sorely crimped. Quality, cost, and innovation will likely also suffer. The challenges ahead for New Jersey’s Medicaid-funded public mental health care system are enormous.

For ease of presentation, Tom’s long slide presentation is divided here into two parts. Part 1 introduces the basic challenges and explains how Medicaid works. Part 2 analyzes the effects of the changes on those in New Jersey with psychiatric disabilities. Download both parts of the presentation below:

Will the ACA’s Medicaid Changes Improve Outcomes for Schizophrenia? A New Jersey Case Study

Part 1

Part 2

Note: PsychOdyssey wishes to express its gratitude to the Psychiatric Rehabilitation Association for the opportunity to offer this presentation at its 2o14 Recovery Workforce Summit.

 

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New at “Remember…”: BBC film about High Royds Asylum

Not only did America experience great dislocations of disinstitutionalization. The BBC recently produced a compelling documentary, “Mental” (59 minutes), about the closing of mental asylums in the United Kingdom. Mental offers a useful comparative to our own American experience. See the film below.

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PsychOdyssey’s Tom Pyle joins Bridgeway Rehabilitation Services

Tom Pyle joins Bridgeway as Director of Administration

Tom Pyle joins Bridgeway as Director of Administration

PsychOdyssey is pleased to announce that founder Tom Pyle has accepted a new executive position in community mental health services. On April 2, Tom joined Bridgeway Rehabilitation Services in Elizabeth, NJ, as Director of Administrative Services, responsible for the agency’s operations.

Founded 40 years ago as a psychosocial rehabilitation clubhouse affiliated with the Elizabeth General Hospital (now Trinitas), Bridgeway is a leading New Jersey community mental psychiatric rehabilitation services agency. With annual contract and Medicaid revenues around $25 million, Bridgeway employs over 300 people (and manages a fleet of nearly 160 vehicles) serving nearly 2000 individuals with psychiatric disabilities in 17 locations in 10 counties in northern and central New Jersey.

Bridgeway Rehabillitation ServicesBridgeway’s programs include partial care, RIST (Residential Intensive Support Team, specially dedicated to individuals discharged from state hospitals), supported housing, supported education, career development, justice-involved services, and emergency intervention support services. Bridgeway’s largest program is PACT (Program in Assertive Community Treatment), in which it runs 9 PACT outreach teams and trains all other New Jersey PACT teams in this important community-outreach evidence-based psychiatric rehabilitation practice. See more about Bridgeway’s pioneering work here.

Joining a management team led by Bridgeway executive Director Cory Storch, Tom’s new responsibilities include billing, electronic health records, business intelligence, human resources, information technology, asset management, and property management. “It is an honor to be part of the Bridgeway organization, which has long been recognized by all quarters of New Jersey’s mental health establishment as an outstanding agency serving so many” Tom writes. “As I well know from my family work and advocacy, Bridgeway is a tireless advocate for psychiatric rehabilitation and for the full community integration for those with mental illness,” he added. “I’m looking forward to doing all I can to help Bridgeway continue its journey of excellence to chart the community-based recovery course for so many loved ones of families navigating the maelstrom of mental illness.”

After intensively on-boarding this past month in his new full-time Bridgeway position, Tom’s private posting work with PsychOdyssey will shortly resume its regular pace. Tom will also carry on his family advocacy work with the New Jersey Behavioral Health Planning Council, NAMI Mercer, as well as his other community assignments and his teaching (“The Family Role in Psychiatric Rehabilitation”) and research in the business of mental health services delivery at the Department of Psychiatric Rehabilitation of the Rutgers School of Health Related Professions.

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New PsychOdyssey OpEd: Response to “Definition of Insanity”

Wall Street JournalOn Tuesday, April 1, The Wall Street Journal published an editorial criticizing the Substance Abuse and Mental Health Services Administration. (To view a copy of the editorial, click here.) PsychoOdyssey’s Tom Pyle wrote the following letter in response:

As father of a son with schizophrenia, I found the Journal’s editorial about SAMHSA partly right. Yes, SAMHSA is a bloated bureaucracy not primarily addressing serious mental illness. Yes, SAMHSA supports some aspects of the consumer/survivor movement. Yes, SAMHSA sometimes seems hostile to traditional psychiatrists like Dr. Torrey who espouse medications first and foremost.

But, no, not all roads to recovery run exclusively through heavy anti-psychotic medication and hospitalization. Solid science increasingly shows that heavy anti-psychotic use over long periods may retard recovery 1, cause extreme weight gain2, induce metabolic syndrome 3-5, or cause brain shrinkage 6. No wonder ex-patients like Dr. Fisher, himself a psychiatrist with schizophrenia, feel like “survivors”. consistent with the federal government’s 2003 National Consensus Statement on Recovery7, several non-medical therapies like the Hearing Voices Network are worthy psychosocial adjuncts to medication (or even no medication).8-13

Recovery is a mental health concept without a consensus.7,14-21 Depending on one’s view, it can be an outcome, a process, or an ideal—or, optimally, all three. Sadly, paradigm partisans too often hijack the term for their own narrow purposes. In fact, recovery has three components. The medical component (Dr. Torrey) is about hospitals, doctors, and medications for short term and enduring symptom stabilization as governed by the science of psychiatry. The empowerment component (Dr. Fisher) is about self-help, individual choice, peer support, and hope as governed by science of psychology. The third component, rehabilitation, is about providing skills and supports to advance community integration and reduce stigma as governed by the science of psychiatric rehabilitation22-28. No one component is sufficient. All are needed for integrated, holistic treatment. Thus recovery discussions must be pluralistic. All voices should be represented, especially those with psychiatric disabilities of whatever ilk or ideology who  personally must endure the mental illness maelstrom.

Thomas H. Pyle, MBA, MS (PsyR), CPRP

Princeton, NJ

Mr. Pyle is an appointed family representative member of the New Jersey Mental Health Planning Council

References

1.         Harrow M, Jobe TH, Faull RN. Does treatment of schizophrenia with antipsychotic medications eliminate or reduce psychosis? A 20-year multi-follow-up study. Psychological Medicine. 2014:1-10.

2.         Parsons B, Allison DB, Loebel A, et al. Weight effects associated with antipsychotics: A comprehensive database analysis. Schizophrenia Research. 5// 2009;110(1–3):103-110.

3.         McEvoy JP, Meyer JM, Goff DC, et al. Prevalence of the metabolic syndrome in patients with schizophrenia: Baseline results from the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) schizophrenia trial and comparison with national estimates from NHANES III. Schizophrenia research. 2005;80(1):19-32.

4.         Meyer J, Davis VG, Goff DC, et al. Change in metabolic syndrome parameters with antipsychotic treatment in the CATIE Schizophrenia Trial: Prospective data from phase 1 Schizophrenia Research. 2008;101(1-3):273-286.

5.         De Hert MA, van Winkel R, Van Eyck D, et al. Prevalence of the metabolic syndrome in patients with schizophrenia treated with antipsychotic medication. Schizophrenia Research. 2006;83(87-93).

6.         Ho B, Andreasen NC, Ziebell S, Pierson R, Magnotta V. Long-term antipsychotic treatment and brain volumes: A longitudinal study of first-episode schizophrenia. Archives of General Psychiatry. 2011;68(2):128-137.

7.         Substance Abuse and Mental Health Services Administration. National consensus statement on mental health recovery. In: Substance Abuse and Mental Health Services Administration, ed. Washington, DC. : U. S. Department of Health and Human Services. Retrieved from http://store.samhsa.gov/shin/content//SMA05-4129/SMA05-4129.pdf.; 2004.

8.         Romme MA, Honig A, Noorthoorn EO, Escher AD. Coping with hearing voices: an emancipatory approach. The British Journal of Psychiatry. July 1, 1992 1992;161(1):99-103.

9.         Ruddle A, Mason O, Wykes T. A review of hearing voices groups: Evidence and mechanisms of change. Clinical Psychology Review. 7// 2011;31(5):757-766.

10.       Kreinin A. “Hearing voices” in schizophrenia: Who’s voices are they? Medical Hypotheses. 4// 2013;80(4):352-356.

11.       Martin PJ. Hearing voices and listening to those that hear them. Journal of Psychiatric and Mental Health Nursing. 2000;7(2):135-141.

12.       Weddings S, Walley L, Collings T, Tullett F, McEwan B, Owen K. Are hearing voices groups effective? Intervoice Online 2006; http://www.intervoiceonline.org/wp-content/uploads/2011/03/Voiceseval.pdf.

13.       Bentall RP. The illusion of reality: A review and integration of psychological research on hallucinations. Psychological Bulletin. 1990;107(1):82-95.

14.       Craig TKJ. Recovery: Say what you mean and mean what you say. Journal of Mental Health. 2008;17(2):125-128.

15.       Davidson L, O’Connell MJ, Tondora J, Staeheli M, Evans AC. Recovery in serious mental illness: Paradigm shift or shibboleth? In: Davidson L, Harding C, Spaniol L, eds. Recovery from severe mental illness: Research evidence and implications for practice. Boston, MA: Center for Pyschiatric Rehabilitation, Boston University; 2005.

16.       Deegan P. Recovery as a journey of the heart. In: Davidson L, Harding C, Spaniol L, eds. Recovery from severe mental illnesses: Research evidence and implications for practice. Boston: Center for Psychiatric Rehabiltiation; 2005:57-68.

17.       Frese FJ, Knight EL, Saks E. Recovery From schizophrenia: With views of psychiatrists, psychologists, and others diagnosed with this disorder. Schizophrenia bulletin. March 1, 2009 2009;35(2):370-380.

18.       Harding CM, Brooks GW, Ashikaga T, Strauss JS, Breier A. The Vermont longitudinal study of persons with severe mental illness, II: Long-term outcome of subjects who retropsectively met DSM-III criteria for schizophrenia. American Journal of Psychiatry. 1987;144:727-735.

19.       Onken SJ, Craig CM, Ridgway P, Ralph RO, Cook JA. An analysis of the definitions and elements of recovery: A review of the literature. Psychiatric Rehabilitation Journal. Summer2007 2007;31(1):9-22.

20.       Spaniol L, Gagne C, Koehler M. Recovery from serious mental illness: What it is and how to support people in their recovery. In: Marinelli RP, Dell Orto AE, eds. The psychological and social impact of disability, 4th ed. New York, NY: Springer Publishing Company; 1999:409-422.

21.       Treatment Advocacy Center. Sometimes needed: A path to a recovery path. 2011.

22.       Anthony WA, Cohen M, Farkas MS, Gagne C. Psychiatric rehabilitation. Boston, MA: Center for Psychiatric Rehabilitation; 2002.

23.       Atyeo H, Forchuk C. Psychiatric/psychosocial rehabilitation (PSR) in relation to residential environments: Housing and homelessness. Current Psychiatry Reviews. 2013;9:188-194.

24.       Ellison ML, Anthony WA, Sheets JL, et al. The Integration of Psychiatric Rehabilitation Services in Behavioral Health Care Structures: A State Example. Journal of Behavioral Health Services & Research. 2002;29(4):381.

25.       Gill KJ, Barrett NM. Psychiatric rehabilitation: An emerging academic discipline. Israeli Journal of Psychiatry and Related Science. 2009;46(2):94-102.

26.       Pratt CW, Gill KJ, Barrett NM, Roberts MM. Psychiatric rehabilitation. 2nd ed. New York: Elsevier; 2007.

27.       Rossler W. Psychiatric rehabilitation today: An overview. World Psychiatry. 2006;5(3).

28.       United States Psychiatric Rehabilitation Association. What is psychiatric rehabilitation. 2011; https://netforum.avectra.com/eweb/DynamicPage.aspx?Site=USPRA&WebCode=IAPSRS.

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New PsychOdyssey OpEd: What Is Recovery?

“Recovery” means many things to many people. It is a concept without a concensus.  Tennessee mental health advocate and consumer Larry Drain, blogging at Hopeworks Community, offers a wonderful reflection on his personal understanding of “recovery”. (Read it here.) But maybe can we go even a little further than Mr. Drain’s moving description?

Isn’t recovery really tripartite concept? Isn’t it a process (or journey), an outcome (or destination), and an ideal (or philosophy)? Accordingly, doesn’t recovery have three components: medical, rehabilitation, and empowerment? The medical component consists of hospitals, doctors, and medications for stabilization, often considered an outcome. The rehabilitation component consists of skills and supports for community integration, often considering a process. The empowerment component consists of wellness, self-awareness, self-help, and hope for perseverance, often considered an ideal. The sciences of the three components are, respectively, psychiatry, psychiatric rehabilitation, and psychology. All three are necessary, perhaps in varying measures at various times, always as determined ultimately by the individual in recovery. No one paradigm (e.g., medical vs. rehabilitation vs. empowerment, etc.) is usually sufficient, nor is the term “recovery” usefully reduced only to one paradigm. Recovery is a big tent. Geneticist Kenneth Kendler (2005) warns against “the paradigm wars”, calling us instead to embrace “explanatory pluralism”.

Thus, isn’t recovery in principle a reformulation? Austrian psychiatrist and Nazi death camp survivor Victor Frankl (1992) gives us all with any challenge a good starting point for considering recovery as reformulation. “What we really needed [to stay alive in the camps],” he wrote, “was a  fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life–daily and hourly. Our answer must consist, not in talk and mediation, but in right action and right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”

References:

Frankl, V. E. (1992). Man’s search for meaning. Boston, MA, Beacon Press. p. 85.

Kendler, K. S. (2005). Toward a philosophical structure for psychiatry. American Journal of Psychiatry 162(3): 433-440.

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New Testimony: PsychOdyssey on Psych Rehab, Medicaid, and New Jersey’s 2015 Budget

FY 2015 NJ BudgetOn March 12, 2014, PsychOdyssey’s Tom Pyle testified before the New Jersey State Assembly’s Budget Committee on the FY 2015 state budget proposed by Governor Chris Christie. Tom was representing the New Jersey Psychiatric Rehabilitation Association, but spoke from his personal experience as the father of a loved one with a psychiatric disability. He  highlighted the essential role of psychiatric rehabilitation in recovery and  the insufficiency of New Jersey’s Medicaid support for psychiatric rehabilitation’s cost effective evidence-based  practices. He appealed to the  to Legislature to assure adequate funding of this critical safety net system for those with psychiatric disabilities.

Read Tom’s testimony on the FY 2015 budget here.

 

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New Testimony WITH AUDIO: PsychOdyssey on Involuntary Outpatient Treatment

Cover of testimonyIn 2009 New Jersey passed its “Gregory’s Law“, named for an 11 year old boy murdered by a man with untreated schizophrenia. Although signed by the Governor, the law has not been fully implemented. Only six counties have been able to implement the law so far. Funds for the overall roll-out were held back by the Governor as strove to  balance New Jersey’s budget.

As a result, new legislation has arisen to extend this involuntary commitment treatment law. Assemblyman (and Assembly Deputy Majority Leader) Reed Gusciora has proposed passage of A.2685 to do this. But the legislation goes further. It also seeks to strengthen the provisions of involuntary outpatient treatments by permitting mandate “depot dosing” of anti-psychotic medications. “Depot dosing” is the administration by injection of medication with slow-release molecules which enable medication to be available in a person’s body for 4 to 6 weeks. Depot dosage is favored by some as more convenient, avoiding the daily need to manage medications.

But depot dosage raises other issues, notably side effects. If a patient receiving depot dosage has a nasty side-effect after, say, 2 days, how would that person endure the rest of the month’s period? As a municipal prosecutor, Assemblyman Gusciora may be moved by the laudable aim of helping those who may not be able to help themselves. But many other issues also make forced depot dosing a problematic practice.

To address the issues, today PsychOdyssey’s Tom Pyle testified before the Human Services Committee of the New Jersey State Assembly.

To hear Tom’s testimony, click this link (or cut and paste into Internet Explorer)…

http://www.njleg.state.nj.us/media/archive_audio2.asp?KEY=AHU&SESSION=2014

… which will take you to the webpage below: Screen Shot

 

Then click the link in the red circle to access the audio. (Tom’s testimony begins at 42:30 on the recording clock.) To see the slides to which Tom refers by page number during his oral presentation , click here.

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