Friedman: Mental Illness Doesn't Mean Mass Murder, Calls for a Unified Focus by Advocates

NYAPRS Note: Here’s an excellent new piece by longtime NYS based mental health advocate Michael Friedman assailing the false connection between mental health conditions and violence, that’s very much aligned with a piece I wrote for the Times right after the Newtown horror.

Michael goes one very important step further when he points to the longtime conflict between those who say that deinstitutionalization has gone too far and those who believe that there is a vast shortage of community-based services, especially housing, as well as missed opportunities for criminal justice reform and calling for “mental health advocates to ..put their ideological differences aside and work together to achieve changes that everyone agrees are necessary. I, for one, am more than willing to engage in that discussion to best achieve our shared mission to advance the lives of those who need us the most.

Mental Illness Doesn't Mean Mass Murder

The Mental Health System Needs Improvement, But Violence Isn't The Reason

by Michael Friedman LMSW December 13, 2018

Every time there is a highly publicized mass murder in the U.S., there are calls to fix America's "broken" mental health system. This is an unfortunate mistake based on persistent myths that people with mental illness are violent and that anyone who commits such an atrocity must be "sick."

The truth is that:

People with mental illness rarely commit homicide, and few homicides are committed by people with mental illness. About 5% of homicides are committed by people with psychotic conditions.

People with serious mental illness are far more likely to be victims than perpetrators.

 Most mass murders are committed by people who are not seriously mentally ill, including:

  • Terrorists

  • People who commit purposeful acts of murder or manslaughter or who commit crimes that result in unintended deaths

  • Perpetrators of domestic violence

  • People seeking revenge

In its Global Study on Homicide, the United Nations' Office on Drugs and Crime recognizes multiple motivations for murder and divides homicides into three types: socio-political, interpersonal, and criminal. But murder by people with psychosis is so rare that it is included only as a footnote.

People with mental illness are far more likely to take their own lives than the life of another person. This is getting worse. The rate of suicide has increased 20% since the beginning of the 21st century and is now more than double the rate of homicide, which has declined 12%.

There are, of course, many reasons to try to improve America's mental health system, among them:

Its failure to serve 60% of Americans with diagnosable mental disorders

Unfortunately, when reducing violence becomes the raison d'etre of efforts to improve mental health policy, there are calls for increased use of coercive interventions -- more involuntary treatment and more use of hospitals generally. Some have even called for a "return to the asylum."

Many mental health professionals favor increasing coercion. But many oppose it, and sadly, an ideological battle has emerged between (1) those who believe that deinstitutionalization has gone too far and (2) those who believe that there is a vast shortage of community-based services, especially housing, as well as missed opportunities for criminal justice reform.

This ideological difference has created a community divided against itself and damaged efforts to achieve needed improvements in the mental health system.

To win beneficial changes, mental health advocates need to put their ideological differences aside and work together to achieve changes that everyone agrees are necessary.

Would a better mental health system reduce homicide? Maybe a little. No one really knows. But there's considerable reason to believe that more and better services could help people suffering from mental disorders and perhaps reduce the incidence of suicide -- goals eminently worth pursuing.

So, when politicians who oppose gun control argue that it is not guns but madmen who are responsible for mass murder, all medical and mental health professionals should strongly counter false claims with the truth about the near irrelevance of mental illness to murder.

Michael B. Friedman, LMSW, is adjunct associate professor at Columbia University School of Social Work and chair of the Geriatric Mental Health Alliance of New York

https://www.medpagetoday.com/psychiatry/generalpsychiatry/76884

It Shouldn’t Take a Tragedy to Improve Mental Health Care

Harvey Rosenthal Room for Debate  New York Times  January 17, 2013

The recent tragedies in Newtown and elsewhere are especially abhorrent to those of us in the mental health community, particularly since studies have shown that people with mental illness are 12 times more likely to be victims of violence, and no more likely to be violent, if they are not substance abusers.

Nonetheless, horrific acts of violence are inevitably associated with mental illnesses, often because the motivations for them seem unfathomable, and they end up getting sensationalized front page coverage.

This has led to a wholesale vilification of conditions that 1 in 5 Americans share. That’s the sort of profiling that has been the fate of some racial or religious groups.

It’s sad that almost the only time meaningful public attention turns to our community is in the wake of tragedies. Our systems desperately need attention. We now know so much about how to help people in need, but the use of effective approaches is the exception not the rule.

We need more money. But we can also redirect a lot of money invested in outmoded institutional or office-based approaches into community outreach, engagement, relapse prevention and crisis support services. National and state health care reforms can expand the use of these approaches.

On the other hand, the use of court ordered treatment associated with Kendra's Law has not, on its own, proven to be effective….

We're not violent, so controlling us will not make you safer. On the other hand, investing in and improving services, as is being done by long awaited health care reforms, will bring critically needed help to millions….

https://www.nytimes.com/roomfordebate/2013/01/17/can-mental-health-care-reduce-gun-violence/it-shouldnt-take-a-tragedy-to-improve-mental-health-care

NYAPRS: Robust Supported Housing Can Serve People with the Most Advanced Needs

NYAPRS Note: The following comes from Technical Assistance Collaborative* director and former NJ mental health commissioner Kevin Martone, who wrote yesterday that the following excellent response to the New York Times’ recent article…. highlighting negative stories about permanent supportive housing (PSH) in New York and painting a picture of a model that had too often failed persons with serious mental illness.

The excellent piece underscores the value of below makes a number of critically important observations including that even people with the most advanced needs can recover and benefit from supported housing that is voluntary, paired with a menu of responsive and comprehensive service choices that are delivered by well-trained adequately funded housing staffers and supports.

He concludes that “providers that struggle to adequately support people in PSH are often those with inadequate staffing, which makes them unable to respond quickly and appropriately. To underfund services is to undermine the ability of providers to meet the needs of PSH tenants” and that while people with mental illness and other disabilities may need lots of things — but that doesn’t mean we should return to institutionalization at a cost that is much greater than the sum required to meet all of those needs.”

NYAPRS agrees that supported housing can help support adult home residents with the most complex needs, supports presiding state settlement Judge Garaufis’ questions about the adequacy of greater state accountability (https://tinyurl.com/y78uz2z8) if not funding for the currently deployed adult home case manager who works with a 1:12 ration of residents, greater use of Medicaid funded home makers and home health aides, the imminent deployment of the recently funded 60+ peer bridgers and with funding increases for housing programs.

See our letter sent last week to the Times below that concludes, in response to claims that we’ve gone too far in pressing for community based options for the residents, “some would say that legal rights and advocacy groups have gone too far, but the answers here are not to shrink rights and choice protections but to offer residents more and better choices.”

Permanent Supportive Housing: Renewing Our Commitment

By Kevin Martone  Executive Director Technical Assistance Collaborative December 12, 2018

Last week, I had the pleasure of delivering the keynote address at the annual conference of the Supportive Housing Association of New Jersey. This gathering marked the association’s 20th anniversary, an opportunity to reflect on two decades of work to make permanent supportive housing — i.e., lease-based housing paired with voluntary, flexible services — a primary intervention for people with a wide range of disabilities and for people experiencing or at risk of homelessness. Many other states, too, have invested time and resources in the successful expansion of this approach for their homeless and disabled populations.

In an interesting fluke of timing, the New York Times had published an article the day before the conference, highlighting negative stories about permanent supportive housing (PSH) in New York and painting a picture of a model that had too often failed persons with serious mental illness. The tone of the article was keenly felt by this group of PSH practitioners, and several leaders from other states and policy groups have since contacted me to discuss the article’s potential impact. How could PSH — an approach that leaders in many states are working to expand in order to support the community integration needs of those who are homeless or disabled — be represented as a failure? What are the article’s implications for those seeking to invest in or expand PSH, for providers, and for people determined to live independently?

While the Times article was alarming, strong evidence nevertheless suggests that people with serious mental illness can succeed in PSH, and that use of the model should indeed be expanded. But there are considerations that must be addressed to ensure that PSH meets the needs of the people it is intended to serve. 

Supportive Housing Works

People with serious mental illness have historically lived in institutional settings whether they actually needed to or not. Over time, however, understanding has grown that the policy of housing people in state psychiatric hospitals, for example, is both cost-ineffective and inhumane, and that it fails to demonstrate positive outcomes.

Deinstitutionalization efforts from the 1970s to the 1990s meant that many more people with mental illness began living in the community. We all know the story of the resulting growth in homelessness and trans-institutionalization to correctional settings, as public systems failed to develop their community-based services capacity and affordable housing resources to meet the increase in demand. Some people had access to services and residential supports, but many did not, and many still do not today.

When I was a case manager over 20 years ago, "supportive housing" meant doing everything possible to get people with mental illness into housing and helping them stay there. Over time, anecdotal stories of success across the country evolved into an evidence base for what we now know as permanent supportive housing.

There is plenty of evidence to demonstrate the effectiveness of PSH for people with mental illness and for people transitioning from homelessness. Many PSH programs have shown increased housing stabilitydecreased emergency department and inpatient usereduced jail days, and significant cost savings compared to homelessness, inpatient care, and other institutional or supervised settings.

Even the statistics noted by the Times suggest that a large majority of people have succeeded in supportive housing. It is important to regard this in light of evidence showing safety and quality of care concerns in New York's adult homes, the housing situation from which many people with mental illness move into supportive housing.

Services Must Be Well-Designed and Adequately Funded

Does supportive housing work for everyone? No. Some people need supervised treatment settings, or prefer group residential programs. However, contrary to the assumptions that used to govern our mental health care systems, supportive housing in the community has been shown to work for a variety of people, including those with the most significant needs who are transitioning from state psychiatric hospitals, nursing facilities, jails, or homelessness. Even people with the most complex conditions need a place to call home that is not contingent on being a "compliant" patient or a "good" client; in fact, providing a choice of housing together with voluntary services has been shown to strengthen retention in housing and services.

In order for PSH to be successful, particularly for persons with complex needs, services must be voluntary, flexible, responsive, robust, and comprehensive. Furthermore, they must be delivered by well-trained staff who are able to provide the right types of services, in the right locations (i.e., where people live), and at the right times, adapting what is offered to meet individuals’ evolving needs. Providers that struggle to adequately support people in PSH are often those with inadequate staffing, which makes them unable to respond quickly and appropriately.

To underfund services is to undermine the ability of providers to meet the needs of PSH tenants. In my experience, the services covered by Medicaid are not, on their own, enough to meet the needs of many people who could otherwise succeed in PSH. If systems will be expected to serve an increasingly complex population, state and county funding agencies and Medicaid managed care organizations must have adequate resources available to pay for a full range of services; successful permanent supportive housing programs are those that braid or blend Medicaid with other resources.

Building On the Evidence

As a former state mental health commissioner, a behavioral health provider, and the family member of someone with a mental illness, it boggles my mind that we would rather pay several hundred thousand dollars per year to house a person in an institutional setting than commit a fraction of that amount to support them in an integrated, community-based setting with demonstrated positive outcomes.

Too often, the response to challenges that arise in PSH is an assumption that a person is "not ready," or "needs supervision," instead of a person-centered mindset that tailors and continually adapts services to each individual’s needs and choices.

Yes, people with mental illness and other disabilities may need inpatient treatment, at times. They may need round-the-clock support, at times. They may need assistance with their medications, at times. They may need transportation to medical appointments, at times. People with mental illness and other disabilities may need lots of things — but that doesn’t mean we should return to institutionalization at a cost that is much greater than the sum required to meet all of those needs. With sufficient resources to pay for both rental assistance and robust, flexible services, permanent supportive housing can be a primary intervention for individuals with complex needs.

Systems should move forward on bringing well-designed, fully funded permanent supportive housing to scale, so that all who can benefit from living in safe, independent, community-integrated housing have the opportunity to do so.

Kevin Martone, L.S.W. is TAC's Executive Director and a former New Jersey state mental health commissioner.

https://tinyurl.com/y7gng2cf

How N.Y. Can Best Help Adult Home Residents with Mental Disabilities

December 7, 2018

The Times’ investigative piece “Where N.Y. Fails Its Mentally Ill" well demonstrates that current adult home residents with mental disabilities must be offered a full choice of well-coordinated residential and community supports, across the entire continuum of care that emphasizes but is not necessarily limited to supported apartment options.

But without adequate investments and oversight from the state, thousands of vulnerable New Yorkers will be unable to get the housing and services they need – resulting in avoidable suffering, isolation, hospitalization, homelessness and incarceration. NYAPRS calls on Governor Cuomo and State legislators to make a major investment in these life-altering programs in the 2019-20 budget.

Some would claim that the residents are ‘too sick’ to live in more independent settings in the community but we now know in 2018 how to successfully support even those with the most advanced mental disabilities to succeed with well-coordinated residential, rehabilitative, peer support and treatment services. Some would say that legal rights and advocacy groups have gone too far (see https://tinyurl.com/y9juqq67), but the answers here are not to shrink rights and choice protections but to offer residents more and better choices.

Harvey Rosenthal, NY Association of Psychiatric Rehabilitation Services

 

*TAC here refers to the Technical Assistance Center not the Treatment Advocacy Center.

ALERT: Urge Gov Cuomo to Approve MH/SU Parity Reporting Act by Dec 22!

ACTION NEEDED TODAY

Require that Insurers and Health Plans Demonstrate Their Compliance

with Federal and State Mental and Substance Use Parity Laws!

URGE GOVERNOR CUOMO TODAY TO APPROVE MH/SUD PARITY REPORTING ACT BY DEC. 22

The Mental Health & Substance Use Disorder Parity Report Act (A.3694-C) has been delivered to Governor Cuomo! It is imperative that advocates for mental health and addiction recovery call and/or write the Governor TODAY as he must decide whether to approve this critically important legislation in the next ten days, by December 22, 2018.

Background

A.3694-C would provide New York with annual transparency and accountability from insurers, health plans and behavioral health benefit managers on compliance with federal and state MH/SUD parity laws, which, we know from settlements with the New York Attorney General, remains elusive. 

Under this bill, insurers, health plans and behavioral health benefit managers will be required to submit key data that will allow the Department of Financial Services to evaluate their compliance with federal and state MH/SUD parity laws and to issue an annual parity report.

Twenty-two statewide organizations including NYAPRS, as well as five national organizations, representing mental health and substance use disorder providers, medical specialty societies, as well as consumer representatives of mental health and substance use disorder services, actively support the enactment of this legislation.

Take five minutes to call the Governor’s office TODAY at (518) 474-8390

(press 2 to speak directly to a staffer) and share the following message

“I’m a registered voter from (your locality) calling to urge Gov Cuomo to sign A.3694-C into law, to provide New Yorkers with the strongest mental health and substance use treatment parity compliance reporting measures in the nation.”

or send an email: https://www.governor.ny.gov/content/governor-contact-form

NYAPRS’ Annual Legislative Day is on Tuesday, February 26, 2019!

NYAPRS’ Annual Legislative Day is on Tuesday, February 26, 2019!

 NYAPRS Note: The crises in community housing, workforce recruitment and retention and over representation of people with mental health and substance conditions in the criminal justice systems have reached a boiling point and continue to make headlines every week. Now is the time to raise our collective voices to fight for change! Accordingly, NYAPRS is very pleased to invite our members and friends to join us at our 22nd Annual Albany Legislative Day on February 26th, 2019. This year’s priorities will include increased housing rates, a 2.9% across the board Cost of Living adjustment and passage of criminal justice reforms including the HALT bill’s prohibition on the use of solitary confinement for vulnerable groups. Save the Date and stay tuned for dates of regional prep sessions in your area!

save Date.jpg

OM: Why Don't People Have More Access To Supported Employment?

NYAPRS Note: The following comes courtesy of NYAPRS Director of Employment and Economic Self-sufficiency Initiatives Len Statham, who writes “this article comes to us from our friends at Open Minds. With the economy roaring along, many individuals with behavioral health challenges are choosing to get back in the workforce.  Unfortunately, the only evidence-based practice for assisting individuals with disabilities, Supported Employment, is inaccessible to a majority of individuals who need it the most. Open Minds explores a number of theories for why this is the case.”

Why Don't Consumers Have More Access To Supported Employment?

Developed by OPEN MINDS, 163 York Street, Gettysburg PA 17325, www.openminds.com.  All rights reserved. 

By Sarah C. Threnhauser  December 5, 2018

Accessing supported employment services can be a challenge for consumers with serious mental illness (SMI). Only about 2.1% of consumers with SMI who received mental health services through their state mental health agency had access to supported employment (SE) in 2016—with accessing ranging across states from nearly 28% in Vermont to 0% in 11 states (see 2% Of People With SMI Receiving Public Mental Health Services Receive Supported Employment Services).

There are two primary funding streams for supported employment. The Department of Education's Vocational Rehabilitation Program, which provides funding to state vocational rehabilitation agencies for supported employment services through Title IV-B or Supported Employment for Individuals With the Most Significant Disabilities grants, provided total funding of around $27 million in 2017 (see Supported Employment State Grants: Funding Status). State Medicaid programs provide funding for supported employment as an optional service - states can choose to provide the service, but are not required to (see How Are Supported Employment Services Funded & Delivered?). The question we wanted to answer is: Why are there so few consumers with SMI receiving supported employment services? I turned to our team at OPEN MINDS. They offered several possible explanations.

First, historically the focus on SE has been on the intellectual/developmental disabilities (I/DD) population, not the SMI population. This means that provider organizations serving SMI consumers may not have the awareness or training needed to provide SE. This lack of awareness may lead to provider organizations looking to other supports and service for consumers. Second, in spite of funding, resources are limited. SE may not be a priority in every organization's portfolio of services—and Medicaid and grant funding for SE needs to be supplemented by the provider organization to cover non-reimbursable components of SE programs. Fear and resistance to employment from consumers and their families, coupled with stigma about the mental health community from employers, also created barriers.

OPEN MINDS senior associate George Braunstein was surprised at the low percentage, considering the importance of the service, and he questioned whether SE was the primary way most provider organizations seek employment for consumers. He noted that there are several ways of getting employment for consumers—such as vocational rehab and job training—that can be more affordable ways for consumer to get access to vocational training. This is especially true through peer run organizations.

I also reached out to OPEN MINDS senior associate Bob Dunbar, who has extensive experience as the chief executive officer of an organization that he described as "a comprehensive community mental health center that provided award winning supported employment services to people with serious mental illness." His organization received a SAMHSA grant to financially support the development and operation of supported employment, in partnership with Dartmouth, to train staff in the model. He noted:

I think there are many factors that contribute to the scarcity of supported employment (SE) services for people with SMI. First, although it's a SAMHSA-identified and evidence-based practice, vocational services have historically been available in the I/DD system but not in mental health system (see Supported Employment Evidence-Based Practices (EBP) KIT). Mental health staff are generally not trained in the SE model, and they typically don't view vocational services such as SE as a critical component of their business model or continuum of services. In many respects I view the lack of training and failure to identify SE as an essential service as the primary factor impacting the availability of SE in mental health services.

Then there are financial issues. Most mental health providers organizations will encounter financial barriers to the provision of SE services. Medicaid may reimburse for certain components of SE, but many critical elements of SE including job search, job placement, and on-site coaching are often not reimbursable. Also, many state mental health authorities do not identify SE as an essential mental health service eligible for public mental health authority funding. In some states the public mental health authority and/or publicly-funded mental health providers have collaborated with state vocational rehabilitation agencies to access services in support of SE, but this is not common.

And, there are consumer and caregiver perceptions to deal with. People with serious mental illness and/or their family member care givers may resist SE because they fear that paid employment will jeopardize receipt of disability, Medicaid, and other benefits. SE providers must engage SMI consumers and caregivers in an assessment of the impact of paid employment on continued receipt of benefits.

Finally, there is stigma—more broadly and within the health care community. Job-finding and placement is a key component of all SE programs. The ability of a SE provider to successfully place a person with SMI in a paid position is impacted by "stigma" as well as the "job market." While stigma and the job market will impact SE placements, effective SE programs are able to locate and partner with select organizations committed to making opportunities available to disadvantaged populations, who will also add value to the employer. There certainly are mental health organizations that don't believe that people with SMI have the capacity for paid employment. However, organizations with a history of prioritizing services to people with serious mental illness realize that with proper training and support employment is a realistic and worthwhile goal.

Employment is an important part of recovery for consumers with SMI. As we move towards a more value-based market that is focused on "whole person" outcomes and consumer-directed care, meeting both the health care and social support needs of consumers will become essential. Supported employment is an evidence-based, a reimbursable program that is currently being under-utilized in mental health care. This is one path that executive teams of specialty provider organizations can utilize as part of their comprehensive care strategy (see Behavioral Health Evidence-Based Practices As Population Health Management Tools).

….To read our research on supported employment services funding and regulations, see How Are Supported Employment Services Funded & Delivered?: An OPEN MINDS Market Intelligence Report

NYT Assails NY Adult Home Resident Policy....but Misses the Full Story

New York Times Assails NY Adult Home Resident Policy....but Misses the Full Story

Harvey Rosenthal, NYAPRS

Yesterday’s ProPublica/NYTimes investigative piece below powerfully emphasizes that people with serious behavioral and physical health related conditions, in this case current adult home residents, must be offered a full choice of well-coordinated residential and community supports, across the entire continuum of care that emphasizes but is not limited to supported housing options and that ensures that our most vulnerable receive the appropriate care delivery and coordination, on a daily basis if necessary.

Yet, the truth is that New York State’s mental health system and mental health housing programs have been cash starved for decades. Without a significant investment from the state, thousands of vulnerable New Yorkers will be unable to get the housing and services they need – resulting in avoidable suffering, isolation, hospitalization, homelessness and incarceration.

New York has the opportunity to build on its legacy of innovative care for its most vulnerable: NYAPRS joins our colleagues from the Bring It Home and broader advocacy coalitions in urging Governor Cuomo and State legislators to make a major investment in these life-altering programs in the 2019-20 budget. Some of those funds must be used to address the workforce crisis we currently face, whereby we are unable to attract and retain the most qualified workforce. The story below confirms that, citing that one former mental health worker now makes more driving for a ride-hailing service.

But this story is about much more than funding.

In 2002, the Times’ ground breaking Pulitzer Prize winning series by Clifford Levy, ‘Broken Homes’ made New York’s shameful adult home scandal a front and center human and public policy issue (see https://archive.nytimes.com/www.nytimes.com/ref/nyregion/BROKEN_HOMES.html?module=inline). It made clear that the state had referred and then stranded thousands of individuals with behavioral and physically health conditions in for profit residential programs that were not designed to serve them and that, all too often, provided grossly deficient care that, at the same time, denied them the their legal right to experience the dignity and opportunity of living in the broader community. 

Following that series, a number of us formed the NYS Coalition for Adult Home Reform and supported residents to advocate for their needs and rights. Several of us sat on government formed Adult Home Work Groups and the state’s Most Integrated Setting Coordinating Council that was established to ensure that New Yorkers with disabilities were afforded their full legal rights under the Americans with Disabilities Act and Supreme Court Olmstead ruling. Many of us provided testimony to support several law suits that ultimately led to the current legal settlement that was advanced by disability rights groups and the Cuomo Administration in 2014.

In the end, the state’s actions over the past 2 decades has been shamefully negligent, beginning with failed oversight and enforcement in the adult homes by the Department of Health and failed budget support by the Division of the Budgets over succeeding Republican and Democratic administrations. The Office of Mental Health has attempted to stretch vastly insufficient funding to try and create additional housing and support services, but all too often in too scant, complicated and under-coordinated fashion that has not identified one entity and worker who would be charged with the ultimate responsibility and accountability to see that each resident received all of appropriate service and support on a daily basis.

Some would claim that the residents are ‘too sick’ to live in more independent settings in the community but we now know in 2018 how to successfully support even those with the most advanced mental disabilities to succeed, by offering recovery focused relationships, relentless effort and the proper service package and coordination. NYAPRS has had a firsthand look at this, creating peer bridger programs that have worked with state and local systems to support the successful transition of thousands of individuals from the backwards of NYS hospitals into local communities since 1994.

Some would say that legal rights groups have gone too far, but the answers here are not to shrink rights and choice protections but to offer residents more and better choices from a more fully developed menu of services and supports across the continuum of residential, rehabilitation, treatment, support and social services.  

The New York Times’ landmark series shone an enduring public light on the plight of residents in the homes in 2002 but yesterday’s piece failed to look at all that’s been working to help the majority of transitioning residents to successfully leave the homes and adjust to more independent community living.

State and local government, community providers, advocates, family members and the media all share the responsibility here for bringing hope, healing, dignity and community to the residents, as has been afforded to former resident Coco Cox as shown in the touching video at https://youtu.be/T9o0sKUkI0A).

All of us need to do a lot better, starting with the coming state budget. In 2000, the state responded to tragedy by making an $125 million investment in community housing and assertive community treatment teams. In 2019, it needs to make another major investment to ensure that our most vulnerable New Yorkers, including but not limited to current residents of adult homes, receive the full package of housing, services, supports and coordination they need and deserve and that is in keeping with their legal rights to live in their communities of choice.

‘I Want to Live Like a Human Being’: Where N.Y. Fails Its Mentally Ill

By Joaquin Sapien and Tom Jennings  New York Times  December 6, 2018

A cutting-edge program to help severely mentally ill people live on their own has endangered people who were not ready, a new investigation shows.

Abraham Clemente, who is schizophrenic, moved out of an adult home into his own Brooklyn apartment last year. “I don’t want to live like this,” he said in August.

The stench from Abraham Clemente’s apartment in Flatbush, Brooklyn, this summer was overwhelming. Maggot-infested scrambled eggs were strewn across the floor; a cantaloupe was so spoiled, it seemed to be melting. Feces were ground into the carpet.

Mr. Clemente, 69 and schizophrenic, kept the shower and sink running for the “oxygen.” He blamed a kitchen fire on a doll nailed to a cabinet. He believed he could crush and smoke his antipsychotic medication to achieve its intended effect.

Yet the state of New York determined Mr. Clemente was capable of living on his own.

He is one of hundreds of severely mentally ill New York City residents who have been moved out of institutions into private apartments over the past four years under a landmark 2014 settlement. The approach is meant to be a national model for the rights of the mentally ill to live independently.

It begins with the assumption that most people in adult homes — group facilities that often house hundreds of residents — can live on their own with the right help. Adult home residents are given a subsidized apartment, called scattered site supported housing, and assigned a team of social workers and others to help navigate bureaucracies, housing problems and everyday tasks.

But more than 200 interviews and thousands of pages of medical, social work and housing records reviewed by ProPublica and the PBS series Frontline, in collaboration with The New York Times, show that for some residents, the sudden shift from an institution to independence has proved perilous, and even deadly.

One man drank himself to death. Another suffered a fatal heart attack in the foyer of his building, during a blizzard, naked. One woman was choked and left dead in a bathtub last year; three people of interest in the murder are fellow supported housing residents. The family of another woman believes her mental health declined when she moved into supported housing, contributing to her suicide.

Certainly, many people flourish when given the chance to live independently.

A court-appointed monitor has interviewed more than 300 people who have moved out of adult homes and has said that for the most part, they are satisfied with the change.

“I’m sure some of them have their rough days because if you have serious mental illness, you have rough days,” said Cliff Zucker, a disability rights lawyer who led the court case that ended in the 2014 settlement. “But better to have it in your own home and live in freedom.”

David Lazarowitz, 45, said he takes his medication routine seriously and loves to shop and cook for himself, keep his apartment tidy and learn about gardening or auto mechanics on YouTube.

“This is a chance that otherwise, I would never have,” Mr. Lazarowitz said.

But in addition to the deaths, ProPublica and Frontline identified more than two dozen cases in which people in supported housing were not able to care for themselves, leaving them in unsafe or inhumane living conditions. Most of those people moved back to an adult home, but others ended up in a nursing home or a psychiatric ward. One resident landed in jail. One is missing, according to the police.

More than 20 people who have worked on the transition, from social workers to nonprofit executives, said the ideology behind the lawsuit endangered scores of people who were not ready to live alone with only minimal support.

“We put the cart before the horse. We committed to the housing before we knew what the needs were,” said James Introne, the New York deputy secretary of health from 2011 to 2013 and a principal negotiator of the settlement.

Front-line social workers and others estimated in interviews that anywhere from a quarter to half of their former adult home clients either have failed — meaning they died in preventable ways or shifted into a higher level of care — or currently lack the help they need to live safely.

Until recently, the state agencies that have overseen adult homes and some related care — the Department of Health and the Office of Mental Health — did not have a system to track serious problems among people who entered supported housing.

After months of questions from ProPublica and Frontline, the state released some numbers in mid-November: Of the 764 people who have moved so far, 32 have died and 39 have returned to adult homes.

But the state did not provide details on the deaths or any investigations into them. Nor did officials provide information on other outcomes for former adult home residents, such as becoming homeless, landing in a psychiatric hospital or suffering dangerous incidents.

Officials with the Office of Mental Health acknowledged that there had been some serious incidents among those who moved. Still, the office said, only a “small percentage” of the group could not overcome the challenges of living alone.

“I truly believe that stigma and discrimination have historically left too many individuals with serious mental illness living in institutions,” Ann Marie Sullivan, the commissioner of the state Office of Mental Health, said in an interview.

State officials also said they have a new reporting system that better captures incidents. The office declined to answer questions about individual cases, citing privacy concerns.

The stakes for the program’s success are high. United States District Judge Nicholas G. Garaufis, who presided over the case, has expressed frustration with what he believes is a slow transition. About 1,700 more people have said they are interested in moving.

The Department of Justice, which joined the New York lawsuit that ended in the settlement, has filed similar suits in North Carolina, Illinois, Delaware, New Hampshire and Mississippi with the goal of expanding independence for the mentally ill nationwide.

On a 95-degree afternoon in August, Mr. Clemente would not answer the door for a reporter, which was unusual. A caseworker called 911.

Officers pushed on the door and broke its rotted jamb. They gasped as flies swarmed them. Mr. Clemente stumbled out, half-naked and sweating. When paramedics arrived, one greeted Mr. Clemente by name, remembering him from previous hospitalizations. His blood sugar levels called for a visit to the emergency room.

“I don’t want to live like this,” Mr. Clemente said, before agreeing to get in an ambulance. “I want to live like a human being.”

The settlement has its roots in a lawsuit initiated in 2003, a year after The New York Times published a Pulitzer Prize-winning investigation into adult homes.

Once considered a humane alternative to psychiatric hospitals, adult homes abused and neglected residents and churned them through unnecessary medical appointments to rack up Medicaid payments. People died of preventable illnesses. Mental health treatment was poor or nonexistent.

The lawsuit aimed to prove that New York had violated the federal Americans with Disabilities Act by allowing the homes to warehouse residents while neglecting their psychiatric needs. Mr. Zucker and other advocates argued that many did not need to live under 24-hour watch.

The state fought the lawsuit, asserting that conditions at the adult homes had improved, and that moving residents into supported housing would cost too much and suit only those who needed minimal supervision.

In 2009, their arguments unfolded before Judge Garaufis in a five-week trial.

One witness was Dr. Jeffrey Geller, a medical director of a large state hospital in Massachusetts who had been involved in overseeing community programs for patients who left psychiatric hospitals in the 1970s and 1980s.

He testified that advocates had underestimated how much help people would need. After reviewing case histories and interviewing more than 100 residents of New York City adult homes, he warned that a quick shift to independent living “may actually physically harm individuals and in some cases cause death.”

“I thought adult homes were abominations,” Dr. Geller said in a recent interview. “But I also thought the plaintiff’s remedies were preposterous.”

Experts on the plaintiff side testified that adult home operators had encouraged a “learned helplessness” in their residents that could be overcome with proper care in their own apartments. Dennis Jones, a former top mental health official for both Texas and Indiana, said he thought virtually everyone living in adult homes could be moved to supported housing.

Advocates made another compelling argument: Because adult homes abused Medicaid, the state would save money by moving people out.

Judge Garaufis sided with the plaintiffs and determined that supported housing would be cheaper than housing people in adult homes.

After a successful appeal, the state opted to settle the lawsuit rather than retry the case. It began the process of moving people out of nearly two dozen adult homes in the city.

Six nonprofits were chosen to act as intermediaries with landlords and help residents with housing problems.

Others opted out. The $15,043 that New York was spending on each resident annually on rent, utilities and a monthly visit from a nonprofit worker struck some housing experts as far too low, even with Medicaid and additional state funds covering therapy and other services. That figure has increased to $17,375. People who live in supported housing also contribute 30 percent of their own income to rent.

“We were anticipating being genuinely involved,” said Steve Coe, the founder of Community Access, one of the first housing programs that took in psychiatric patients in the 1970s, “but then the system they set up just didn’t make sense.”

 

A Push to Move

From the beginning, the transition was problematic.

The independent monitor found that adult homes tried to stop people from leaving by scaring residents or making it difficult to obtain records that would help determine whether they were capable of living alone.

State officials and service providers held weekly calls to discuss the pace.

Several people who participated told ProPublica and Frontline the pressure to move people out was like a “weekly firing squad.”

Residents had to be evaluated to determine if they were ready to move. Three clinicians who said in interviews that they were involved in dozens of evaluations said they believed their concerns about some residents were overruled or ignored. Three additional workers tasked with recruiting and preparing residents for the transition said it was obvious some were ill-equipped, but they were told to sell the move.

Dr. Sullivan, who has led the state Office of Mental Health since late 2013, said her office has not urged evaluators to move people who were not ready.

“The assessment should look at everybody’s potential. Sometimes people can disagree about that — there have been some disagreements on the call — but that is not our policy by any means,” Dr. Sullivan said.

Still, Steve Scher, who ran the nonprofit Staten Island Behavioral Network for 14 years, said he was shocked by the backgrounds of some patients allowed into his housing program after the settlement.

“If someone was actively using drugs, it didn’t matter,” he said. “If someone was currently drinking, it didn’t matter. If someone was a fire setter, it didn’t matter.”

The nonprofit Institute for Community Living, which now runs Mr. Scher’s program, did not respond to requests for comment on issues Mr. Scher raised.

Once people are in supported housing, they can be assigned a dizzying array of agencies and bureaucracies. Many clients see therapists. Some have home health aides or use food stamps. Others are assigned peers who have been through treatment and assist others.

Although often innovative and devoted, caseworkers could be overwhelmed, Clarence J. Sundram, the independent monitor, wrote in 2015. Some juggled as many as 100 cases. The state recognized that some residents would need a bigger safety net.

Under a program called Adult Home Plus, some residents were assigned a “care coordinator” with a caseload capped at 12 to meet with them four times a month and wrangle the myriad services and providers.

But coordination among the teams can be rocky, and turnover is high, Mr. Sundram has written and ProPublica and Frontline have found.

Cristal Irons, a former care coordinator with the nonprofit Federation of Organizations, said a communication breakdown put her in danger. She said she and a worker for Institute for Community Living were supposed to try to hospitalize a psychotic patient. She wound up going alone. The resident choked her, slammed her against a door knob and severely injured an arm that then needed multiple surgeries, she said.

Ms. Irons was eventually fired for what Federation told her was abuse of her paid family leave. She is suing I.C.L. for negligence, arguing that the organization knew the patient was a threat.

I.C.L. did not respond to questions about this incident.

“It’s more about the numbers and the metrics, and raking in the insurance money versus actually providing quality care and services to the clients,” Mr. McCoy said.

He quit after three months. He said he earns more driving for a ride-hailing service.

Joseph Buzzell, a lawyer representing Federation, said the organization “has not found any indication that it has violated any of its duties to provide services.” He also said that former Federation employees may “harbor unmerited grudges.”

Slipping Through the Cracks

For four years, Mr. Sundram has urged the state to develop a more robust oversight system to track problems in supported housing.

“With the strong presumption in the settlement agreement that virtually all class members are qualified for supported housing, it is not unexpected that the presumption proves incorrect in some cases,” he wrote in his most recent report.

In his reports, Mr. Sundram has identified cases of people who have slipped through the cracks, including a 34-year-old woman who moved to supported housing in 2016 after four years in an adult home.

She stopped taking her antipsychotic drug and began trying to solicit sex from passing drivers and swap alcohol for drugs with neighborhood children.

Case managers knew she needed more care, but no one seemed to know how to help her get it. Eventually, facing eviction, she became homeless.

Jorge Bulario, a social worker with the Staten Island Behavioral Network from 2014 through 2017, told ProPublica that when he or his colleagues tried to raise concerns about supported housing residents with state officials, they were shouted down.

More than a dozen people working in a similar capacity said the same.

“The Department of Health’s message was: These people want to move out. We have to give them the chance,” Mr. Bulario said.

Mr. Bulario said one man disappeared for several months shortly after moving out of an adult home. He said he and his team eventually learned that the man, who had stopped taking his antipsychotic medication, had taken a bus to San Diego and was later found in a psychiatric ward on Staten Island.

One woman drank herself into a stupor daily. Mr. Bulario said he saw her lying on a couch covered in broken glass and feces on several occasions.

Another woman frequently wandered outside her apartment in nothing but a bra and diaper, he said.

All three moved back to their adult home in Staten Island, where Mr. Bulario now sometimes works for a managed long-term care contractor.

In March, Judge Garaufis signed a new order telling nonprofits to report to the state any incident, from deaths to unsanitary living conditions that jeopardized someone in supported housing.

The state must investigate the incidents, but the court order covers only those enrolled in Adult Home Plus. And 42 percent of people who moved under the settlement are no longer enrolled in that program, according to the monitor’s most recent report.

Before agencies began reporting incidents, ProPublica and Frontline identified at least six deaths that raised questions.

Jagnanan Ramnanan, 67, died of complications related to liver failure last year after repeated warning signs about his drinking problem. Just days before he had a fatal heart attack, 54-year-old Bernard Walker was seen “practicing his karate” in his underwear in the snow. He died naked, in the cold, inside the foyer of his Queens apartment building in 2016.

Cindy Boyle, 45, was found strangled in the bathtub of her Queens apartment last year. The police said three persons of interest are former adult home residents.

At least two men died within a month after their move from the adult home. One of them, 63-year-old Peter Harris, could not follow a managed diet, his sister said. Six workers familiar with his case told ProPublica he had a kidney disorder, and harmful foods were found in his Staten Island apartment when he died in 2016.

“The intentions were good. They were trying to get him on his own, but he had become very, very dependent on other people taking care of him,” said his sister, Marianne Harris.

Mayorby Chimilio spent four years in an adult home, where she spoke so often of suicide that staff members swept her room regularly to ensure she was not hoarding pills. After she moved into supported housing, she was hospitalized repeatedly for depression and suicidal thoughts. Her sisters said it appeared she had stopped taking her medication.

Chimilio, 41, wound up living at the Creedmoor Psychiatric Center campus on Long Island. In February, she flung herself from a rooftop and died.

“There should have been more of a step-by-step process,” said Ms. Chimilio’s son, Davon Blanks, 25. “She needed a more collaborative effort, more coordination.”

Some families, working with ProPublica, have tried to obtain the results of state investigations into the deaths but were refused. Officials said these were internal documents shielded by state law.

The Right to Fail

Antonia Lasicki, the executive director of a New York trade group that represents nonprofit housing providers, was initially skeptical of the settlement but now supports it. Ms. Lasicki said services have gotten better and members of her trade group have told her there was a high success rate, although she did not have data.

She said the state has not required extensive documentation of failures. “It would be like you or I reporting to the government if something happened in our apartment,” Ms. Lasicki said. “It would not be a normal thing to do.”

A psychologist who testified for the plaintiffs in the lawsuit, Sam Tsemberis, disagreed. In the early 1990s, Mr. Tsemberis created Pathways Housing First, which helped severely mentally ill homeless people live on their own with help. He ultimately declined to participate in the supported housing program.

“If they were just like anyone else, why would they be sending them an Adult Home Plus coordinator?” he asked. “Why would you send them a housing case manager? How did they trick themselves into absolving responsibility for care?”

The argument underlies the biggest debate in the transition from adult homes to supported housing. Mentally ill people, some advocates argue, deserve the “right to fail” and the “dignity of risk.”

The debate surfaces in cases like Mr. Clemente’s.

A few months before Mr. Clemente moved out of his adult home last year, the company that had been managing his health care warned the rest of his team that he was not interested in learning how to handle his medication.

“At this time,” the company said, “we cannot safely provide service to this member in a supported apartment.”

Mr. Clemente moved out anyway.

By January 2018, records show, he was hospitalized. His care coordinator told the police he tried to hit her after being off his medication for five days.

Records show he had been violent in the past, admitting to evaluators that he spent time in prison after stabbing his wife and her lover.

In February, Mr. Clemente accidentally started a fire in his apartment. The agency overseeing his home health aide recommended he should move into a more supervised system, called Level II housing. Another agency disagreed. In March, he started another fire.

In May, an aide quit because she was “in fear of her life,” records show. By the end of July, the company that had been managing his health care said it would no longer work with him because he continuously refused its services.

In September, he turned down a bed in a Level II group home in Brooklyn — a fully staffed psychiatric facility — because it did not allow smoking inside, according to two staffers.

ProPublica and Frontline shared details of Mr. Clemente’s experience in supported housing with several experts, including Mr. Zucker, the advocate who launched the case.

Mr. Zucker offered to help Mr. Clemente directly and then asked a question: “Is he unhappy?”

Dr. Geller, the Massachusetts hospital medical director who testified at the trial, said that was the wrong question.

“We have a lot of people who we commit who are perfectly happy, but they otherwise cause problems for society, that endanger other people, endanger themselves,” he said.

Ms. Lasicki has found herself wondering if the pendulum has swung too far.

“I tend to take the position of: More freedom is better than less freedom,” Ms. Lasicki said. “But there are cases where you have to wonder, ‘What are we doing?’”

Mr. Clemente remained in supported housing until the fall, when one day he wandered into his former Brooklyn adult home, convinced he had a job as a security guard and people owed him money. An ambulance took him to an emergency room, where he got into an altercation. He was sent to a psychiatric ward.

On Nov. 1, Mr. Clemente moved back into an adult home.

Kate McCormick, Nicole Reinert and Marcia Robiou contributed reporting.

This article was published in collaboration with ProPublica, the nonprofit journalism organization, and Frontline, the PBS documentary series. Joaquin Sapien is a reporter for ProPublica, and Tom Jennings is a producer for Frontline. They are working on an upcoming documentary.

https://www.nytimes.com/2018/12/06/nyregion/nyc-housing-mentally-ill.html

NYT: Psychiatric Advance Directives Are Helping to Transform, Improve MH Care

NYAPRS Note: Psychiatric advance directives can play a crucial role in ensuring that effective and engaging care is delivered to people with the most extensive mental health and substance use related conditions, especially during times of major crisis.

PADs give healthcare professionals the best information and direction available as to how to deliver the best crisis support from the best informants of all, the individuals themselves. They operate from the place of informed choice, as a powerful alternative to coercive approaches that could otherwise deliver care in an uninformed and potentially inappropriate or harmful manner that would discourage people to stay connected with services after the crisis.

The following piece provides details of specific successful examples of how PADs are being used. Note below how federal agencies like CMS are raising expectations that hospitals look for PADs and SAMHSA is developing strategies to promote their greater use.

Up to now, PADs are rarely understood or being used….yet their insertion into electronic healthcare records could make their use common someday soon.    

See more about PADs at https://www.nrc-pad.org/ and contact our NYAPRS Training Collective at ruthcw@nyaprs.org to schedule a PAD training in your area.

Now Mental Health Patients Can Specify Their Care Before Hallucinations and Voices Overwhelm Them

Psychiatric advance directives allow patients with serious mental illness to specify the treatment they want if they become too sick to say so.

By Pam Belluck  New York Times  December 3, 2018

CHARLOTTE, N.C. — Steve Singer, who has bipolar and borderline personality disorders, knows when he’s on the verge of a mental health crisis. The female voice he hears incessantly in his head suddenly shuts up, and the hula hoop he gyrates while walking to the grocery store stops easing his anxieties.

That’s when he gets to a hospital. Usually, talking briefly with a nurse or social worker calms him enough to return home. But this year a hospital placed him on a locked ward, took his phone, and had an armed guard watch him for 20 hours before a social worker spoke with him and released him.

“I get the heebie-jeebies thinking about it,” said Mr. Singer, 60. “They didn’t help me, they hurt me.”

Deeply upset, he turned to something he’d never known existed: He completed a psychiatric advance directive, a legal document declaring what treatment he does and doesn’t want. Increasingly, patients, advocates and doctors believe such directives (called PADs) could help transform the mental health system by allowing patients to shape their care even when they lose touch with reality. Hospitals must put them in patients’ medical records and doctors are expected to follow them unless they document that specific preferences aren’t in the patients’ best medical interest.

As the pendulum has swung from institutionalization to outpatient care, psychiatric directives also offer a middle path by allowing patients to designate family members to speak for them when they’re too sick to do so themselves.

But some doctors and hospitals are wary that the documents could tie their hands and discourage treatment they consider warranted. Some worry the directives won’t be updated to reflect medical advances. Others question whether people with serious psychiatric conditions are ever capable of lucidly completing such directives.

“A decision based on erroneous information on a PAD, that can happen,” said Dr. Katayoun Tabrizi, a forensic psychiatrist at Duke. “This is not a cookbook.”

Still, early research and experience suggest that PADs, authorized by law in 27 states and possible in others as part of conventional medical advance directives, could help some of the millions of people with serious mental illness cope better and guide doctors treating them.

“PADs could be a very important tool to minimize hospitalization and minimize involuntary commitment,” said Cherene Allen-Caraco, chief executive officer of Promise Resource Network, a peer-counseling organization in Charlotte. By letting patients give permission beforehand to be committed to hospitals they prefer, the directives can avoid the arduous court-ordered commitment process — traumatic for patients, especially if they’re handcuffed by police.

“And by listing what’s been hurtful to you in the past and what’s been helpful to you, that could be an advantage to the treatment provider,” Ms. Allen-Caraco said.

As people with serious mental illness cycle in and out of hospitals, many landing on the streets or in prison, better approaches are urgently needed.

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Now, there are growing efforts to train counselors to help patients complete PADs and urge hospitals to honor them. The federal Centers for Medicare and Medicaid Services has strengthened requirements that hospitals ask if patients have advance directives, including psychiatric ones. The federal Substance Abuse and Mental Health Services Administration is considering ways to encourage directives. And PAD-completion clinics are emerging in Texas, North Carolina and elsewhere.

 

In the documents, patients specify treatments they like or despise; whether their crises involve suicidal feelings or hallucinations; even how to treat their service dogs and what doctors should say to penetrate their psychoses. Some patients carry copies, share them with relatives and their regular psychiatrists, and, when possible, register them in state databases.

 

Mr. Singer’s lists his preferred hospital, five psychiatric medications he’ll accept and two he won’t because they make him excitable. It says he rejects electroconvulsive shock therapy and refuses to be on a locked ward unless he or a trusted person says he intends to harm himself or others.

 

Dr. Marvin Swartz, a Duke psychiatry professor, said simply writing a directive increases some patients’ engagement in treatment, reducing setbacks with medication and therapy. After he and colleagues offered 239 patients the opportunity to complete PADs, they found the 147 who did so had fewer crises that led to being involuntarily hospitalized, medicated or restrained.

Mr. Singer, a former X-ray technician, knows he sometimes needs inpatient hospitalization. He’s tried to kill himself three times: at 15 by hanging himself from a shower rod (it broke); in his 40s with his father’s World War II pistol (it jammed); and in 2012 with a shotgun (a pellet grazed his scalp and punctured the ceiling). After that attempt, he said he told a hospital, “‘It was my Walmart shotgun or to you guys. I need somebody to put me behind a locked door.’”

Usually, though, he recognizes early symptoms, like his impulsive five-hour drive to a Johnny Appleseed statue in Virginia or a broken keychain that panicked him into thinking: “I’m going to lose my keys and get evicted and a meteor is going to strike,” he said. “You’ve heard of catastrophic thinking?

That’s for amateurs. I have apocalyptic thinking.”

While briefly visiting a hospital stabilizes him, being confined there worsens his anxiety, he said. “I don’t need anything that is going to move me one milli-scintilla in the shotgun direction and being locked up did a whole lot more than one milli-scintilla.”

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His directive lessens his concerns about seeking hospital help. On a chocolate-colored couch in his apartment, Mr. Singer, wearing an Alice-in-Wonderland T-shirt, said he’s been taking medication regularly and forgoing recreational drugs like mushrooms.  “That psychiatric advance directive, I think is so important,” he said. “It allows me to turn things around.”

Family can help

Ariel Wolf, 25, has been hospitalized 30 times since she was 13. She believes her PAD helped her get treatment that worked.

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Ariel Wolf, 25, has been hospitalized over 30 times since age 13, when she began cutting herself with razor blades. Her brain directed her to inflict injuries meeting “certain dimensions of width and depth and location on my body,” she said recently in a cafe near her home in Winston-Salem, accompanied by her service dog, Jubilee.

She’d slash her arms, elbows, shoulders and feet, photographing the wounds and sewing them up with fishing line. “By the time I got to 5,000, I was sitting in the bathroom all night, obsessively cutting,” she said. At 15, aiming to remove her appendix, she sliced a three-inch gash, stopping only when her mother came home.

At 17, during months of psychiatric hospitalization, Ms. Wolf, who has bipolar disorder with psychotic features, swallowed staples and shoved a paper clip into her thumb. But just before her birthday, she completed a directive, allowing her parents to participate in her care after she turned 18.

That helped save her, she said. Her parents communicated her directive’s preferences, including objections to electroconvulsive therapy and antipsychotic medications. Before having the document, she believes doctors sometimes considered her obstinate and forced treatment on her.

Even skeptics of PADs value that they let patients pre-authorize involvement of family or friends. In crises, patients might be too unstable or paranoid to give permission, said Victor Armstrong, a vice president for Atrium Health who runs Behavioral Health Charlotte, a 66-bed psychiatric facility.

Ms. Wolf, now a mental health peer support specialist, said she no longer self-harms, but needs occasional hospitalization when experiencing symptoms like speaking in rhymes or hallucinating that light is stabbing her. Her recently revised directive indicates her parents aren’t needed as medical guardians but should be contacted. Its additional details include: “I have a history of experiencing mania/hypomania in or around March, August, and sometimes November.”

Obstacles to overcome

For PADs to become widespread, major logistical hurdles remain. Although hospitals are technically required to ask whether patients have advance directives, psychiatric directives aren’t yet common enough for hospitals to routinely embrace them. Until then, some patients won’t complete them, “a chicken and egg problem,” Dr. Swartz said.

Mr. Armstrong called PADs “a wonderful notion” that his hospital would try to follow, although they wouldn’t supersede doctors’ judgment or “override their fear of being sued.”

Completing them requires detailed steps. In Charlotte, Judy Reiner said that because her 45-year-old son didn’t get his directive notarized, it wasn’t valid during a recent crisis and he endured involuntary commitment.

Many patients need extensive help writing directives, but proponents say psychiatrists and relatives shouldn’t assume that role because patients may suspect they just want to make hospitalization easier.

Effective PADs “would enhance people receiving appropriate treatment,” said Dr. Mark Rapaport, chairman of psychiatry and behavioral sciences at Emory University. “But this is going to be really hard to do.”

Ms. Allen-Caraco of Promise Resource Network, whose psychiatric diagnoses include major depressive disorder, said some patients are “afraid of legal documents because they have been associated with removal of rights.” At a PAD clinic, she provided helpers, witnesses, a notary and assistance registering PADs in the state database.

At the clinic, Bebe Smith, a clinical social worker, encouraged patients to be specific, but realistic: “If you say, ‘I want to have milkshakes every day,’ that’s not a standard treatment.”

She helped Lashawanda Ivey, who has schizoaffective and borderline personality disorders, complete a PAD. Ms. Ivey trembled as she recalled requesting hospitalization recently because “ voices in my head were louder, and suicidal thoughts were coming.” The hospitalization turned into “an excruciating two days because people weren’t really listening to what I was saying.”

Her PAD says hospitals shouldn’t “overload me with a whole lot of questions” and that although she dislikes electroconvulsive shock, it’s helped her become communicative, so “if they have to do it, yeah.”

In another room, Harrison Pedigo, 26, got his directive witnessed and notarized. He wrote it in 2016, after four hospitalizations, beginning when his parents had him involuntarily committed because he was babbling, smearing paint on the carpet and walking barefoot in traffic. He said he hallucinated while hospitalized, including imagining he was telepathically communicating with a man wearing playing cards.

His PAD objects to three drugs and one hospital, and allows his parents’ involvement, preventing a recurrence of the time a hospital wouldn’t confirm he was there when his mother brought him clothes.

Since completing it, he hasn’t been hospitalized. He takes voice-over classes and lives with his parents in a townhouse decorated with his colorful abstract paintings. His directive is “a safety net,” he said, “to help something not happen again or go smoother if it does.”

 Harrison Pedigo, at home with his parents, Leigh and Paul, suffers from schizophrenia and drafted a PAD in 2016 after four hospitalizations.CreditTravis Dove for The New York Times

Harrison Pedigo, at home with his parents, Leigh and Paul, suffers from schizophrenia and drafted a PAD in 2016 after four hospitalizations.CreditTravis Dove for The New York Times

A window into the human psyche

PADs can be Rosetta stones to a patient’s inner life.

“Sometimes I hear voices that seem to come from another person’s brain,” Andrew, a 29-year-old military veteran from Houston, wrote in his directive’s 18 remarkably frank pages. “I may find it helpful to think about obscure movies other people have probably not seen.”

He listed 15 things that help deter him from quieting his demons with illegal drugs, including origami and playing catch. Conversation is good, wrote Andrew, who asked that his last name be withheld to protect family privacy. “But,” he cautioned, “it is very important that the attempt to converse does not include good-natured jesting, joking or hazing.”

“Sometimes I think that people are not who they say they are,” he advised. “Please let me know you are real by saying things like: ‘We drove here. We did not warp here.’”

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Laurie Hallmark, managing attorney for mental health programs at Texas RioGrande Legal Aid, who helped Andrew draft his directive, said that recently, when he was hospitalized and completely inside psychosis,” a nurse followed his PAD, essentially saying “‘Oh wow! I recognize these behaviors.’” ”

Andrew’s directive includes small steps to defuse big crises.

“Things that may help me to not want to kill myself,” Andrew listed. Among them: drinking Yogi tea and discussing a concept called “infinite replay” — although he added, “I understand that other people may not find this topic fascinating.”

In emergencies, before hospitals use medications, seclusion or restraint, Andrew implores them to try other approaches.

“Please,” he wrote, describing one, “say ‘It’s going to be ok.’”

https://www.nytimes.com/2018/12/03/health/psychiatric-advanced-directives.html

Correction: NYAPRS’ Annual Legislative Day is on Tuesday, February 26, 2019!

Correction: NYAPRS’ Annual Legislative Day is on Tuesday, February 26, 2019!

NYAPRS is very pleased to invite our members and friends to join us at our 22nd Annual Albany Legislative Day on February 26th, 2019 to advocate for increased housing rates, a 2.9% across the board Cost of Living adjustment and passage of criminal justice reforms including the HALT bill’s prohibition on the use of solitary confinement for vulnerable groups. Save the Date and stay tuned for dates of regional prep sessions in your area!

 

save Date.jpg

NYT: Psychiatric Advance Directives Are Helping to Transform, Improve MH Care

NYAPRS Note: Psychiatric advance directives can play a crucial role in ensuring that effective and engaging care is delivered to people with the most extensive mental health and substance use related conditions, especially during times of major crisis.

PADs give healthcare professionals the best information and direction available as to how to deliver the best crisis support from the best informants of all, the individuals themselves. They operate from the place of informed choice, as a powerful alternative to coercive approaches that could otherwise deliver care in an uninformed and potentially inappropriate or harmful manner that would discourage people to stay connected with services after the crisis.

The following piece provides details of specific successful examples of how PADs are being used. Note below how federal agencies like CMS are raising expectations that hospitals look for PADs and SAMHSA is developing strategies to promote their greater use.

Up to now, PADs are rarely understood or being used….yet their insertion into electronic healthcare records could make their use common someday soon.    

See more about PADs at https://www.nrc-pad.org/ and contact our NYAPRS Training Collective at ruthcw@nyaprs.org to schedule a PAD training in your area.

Now Mental Health Patients Can Specify Their Care Before Hallucinations and Voices Overwhelm Them

Psychiatric advance directives allow patients with serious mental illness to specify the treatment they want if they become too sick to say so.

By Pam Belluck  New York Times  December 3, 2018

CHARLOTTE, N.C. — Steve Singer, who has bipolar and borderline personality disorders, knows when he’s on the verge of a mental health crisis. The female voice he hears incessantly in his head suddenly shuts up, and the hula hoop he gyrates while walking to the grocery store stops easing his anxieties.

That’s when he gets to a hospital. Usually, talking briefly with a nurse or social worker calms him enough to return home. But this year a hospital placed him on a locked ward, took his phone, and had an armed guard watch him for 20 hours before a social worker spoke with him and released him.

“I get the heebie-jeebies thinking about it,” said Mr. Singer, 60. “They didn’t help me, they hurt me.”

Deeply upset, he turned to something he’d never known existed: He completed a psychiatric advance directive, a legal document declaring what treatment he does and doesn’t want. Increasingly, patients, advocates and doctors believe such directives (called PADs) could help transform the mental health system by allowing patients to shape their care even when they lose touch with reality. Hospitals must put them in patients’ medical records and doctors are expected to follow them unless they document that specific preferences aren’t in the patients’ best medical interest.

As the pendulum has swung from institutionalization to outpatient care, psychiatric directives also offer a middle path by allowing patients to designate family members to speak for them when they’re too sick to do so themselves.

But some doctors and hospitals are wary that the documents could tie their hands and discourage treatment they consider warranted. Some worry the directives won’t be updated to reflect medical advances. Others question whether people with serious psychiatric conditions are ever capable of lucidly completing such directives.

“A decision based on erroneous information on a PAD, that can happen,” said Dr. Katayoun Tabrizi, a forensic psychiatrist at Duke. “This is not a cookbook.”

Still, early research and experience suggest that PADs, authorized by law in 27 states and possible in others as part of conventional medical advance directives, could help some of the millions of people with serious mental illness cope better and guide doctors treating them.

“PADs could be a very important tool to minimize hospitalization and minimize involuntary commitment,” said Cherene Allen-Caraco, chief executive officer of Promise Resource Network, a peer-counseling organization in Charlotte. By letting patients give permission beforehand to be committed to hospitals they prefer, the directives can avoid the arduous court-ordered commitment process — traumatic for patients, especially if they’re handcuffed by police.

“And by listing what’s been hurtful to you in the past and what’s been helpful to you, that could be an advantage to the treatment provider,” Ms. Allen-Caraco said.

As people with serious mental illness cycle in and out of hospitals, many landing on the streets or in prison, better approaches are urgently needed.

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Now, there are growing efforts to train counselors to help patients complete PADs and urge hospitals to honor them. The federal Centers for Medicare and Medicaid Services has strengthened requirements that hospitals ask if patients have advance directives, including psychiatric ones. The federal Substance Abuse and Mental Health Services Administration is considering ways to encourage directives. And PAD-completion clinics are emerging in Texas, North Carolina and elsewhere.

 

In the documents, patients specify treatments they like or despise; whether their crises involve suicidal feelings or hallucinations; even how to treat their service dogs and what doctors should say to penetrate their psychoses. Some patients carry copies, share them with relatives and their regular psychiatrists, and, when possible, register them in state databases.

 

Mr. Singer’s lists his preferred hospital, five psychiatric medications he’ll accept and two he won’t because they make him excitable. It says he rejects electroconvulsive shock therapy and refuses to be on a locked ward unless he or a trusted person says he intends to harm himself or others.

 

Dr. Marvin Swartz, a Duke psychiatry professor, said simply writing a directive increases some patients’ engagement in treatment, reducing setbacks with medication and therapy. After he and colleagues offered 239 patients the opportunity to complete PADs, they found the 147 who did so had fewer crises that led to being involuntarily hospitalized, medicated or restrained.

Mr. Singer, a former X-ray technician, knows he sometimes needs inpatient hospitalization. He’s tried to kill himself three times: at 15 by hanging himself from a shower rod (it broke); in his 40s with his father’s World War II pistol (it jammed); and in 2012 with a shotgun (a pellet grazed his scalp and punctured the ceiling). After that attempt, he said he told a hospital, “‘It was my Walmart shotgun or to you guys. I need somebody to put me behind a locked door.’”

Usually, though, he recognizes early symptoms, like his impulsive five-hour drive to a Johnny Appleseed statue in Virginia or a broken keychain that panicked him into thinking: “I’m going to lose my keys and get evicted and a meteor is going to strike,” he said. “You’ve heard of catastrophic thinking?

That’s for amateurs. I have apocalyptic thinking.”

While briefly visiting a hospital stabilizes him, being confined there worsens his anxiety, he said. “I don’t need anything that is going to move me one milli-scintilla in the shotgun direction and being locked up did a whole lot more than one milli-scintilla.”

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His directive lessens his concerns about seeking hospital help. On a chocolate-colored couch in his apartment, Mr. Singer, wearing an Alice-in-Wonderland T-shirt, said he’s been taking medication regularly and forgoing recreational drugs like mushrooms.  “That psychiatric advance directive, I think is so important,” he said. “It allows me to turn things around.”

Family can help

Ariel Wolf, 25, has been hospitalized 30 times since she was 13. She believes her PAD helped her get treatment that worked.

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Ariel Wolf, 25, has been hospitalized over 30 times since age 13, when she began cutting herself with razor blades. Her brain directed her to inflict injuries meeting “certain dimensions of width and depth and location on my body,” she said recently in a cafe near her home in Winston-Salem, accompanied by her service dog, Jubilee.

She’d slash her arms, elbows, shoulders and feet, photographing the wounds and sewing them up with fishing line. “By the time I got to 5,000, I was sitting in the bathroom all night, obsessively cutting,” she said. At 15, aiming to remove her appendix, she sliced a three-inch gash, stopping only when her mother came home.

At 17, during months of psychiatric hospitalization, Ms. Wolf, who has bipolar disorder with psychotic features, swallowed staples and shoved a paper clip into her thumb. But just before her birthday, she completed a directive, allowing her parents to participate in her care after she turned 18.

That helped save her, she said. Her parents communicated her directive’s preferences, including objections to electroconvulsive therapy and antipsychotic medications. Before having the document, she believes doctors sometimes considered her obstinate and forced treatment on her.

Even skeptics of PADs value that they let patients pre-authorize involvement of family or friends. In crises, patients might be too unstable or paranoid to give permission, said Victor Armstrong, a vice president for Atrium Health who runs Behavioral Health Charlotte, a 66-bed psychiatric facility.

Ms. Wolf, now a mental health peer support specialist, said she no longer self-harms, but needs occasional hospitalization when experiencing symptoms like speaking in rhymes or hallucinating that light is stabbing her. Her recently revised directive indicates her parents aren’t needed as medical guardians but should be contacted. Its additional details include: “I have a history of experiencing mania/hypomania in or around March, August, and sometimes November.”

Obstacles to overcome

For PADs to become widespread, major logistical hurdles remain. Although hospitals are technically required to ask whether patients have advance directives, psychiatric directives aren’t yet common enough for hospitals to routinely embrace them. Until then, some patients won’t complete them, “a chicken and egg problem,” Dr. Swartz said.

Mr. Armstrong called PADs “a wonderful notion” that his hospital would try to follow, although they wouldn’t supersede doctors’ judgment or “override their fear of being sued.”

Completing them requires detailed steps. In Charlotte, Judy Reiner said that because her 45-year-old son didn’t get his directive notarized, it wasn’t valid during a recent crisis and he endured involuntary commitment.

Many patients need extensive help writing directives, but proponents say psychiatrists and relatives shouldn’t assume that role because patients may suspect they just want to make hospitalization easier.

Effective PADs “would enhance people receiving appropriate treatment,” said Dr. Mark Rapaport, chairman of psychiatry and behavioral sciences at Emory University. “But this is going to be really hard to do.”

Ms. Allen-Caraco of Promise Resource Network, whose psychiatric diagnoses include major depressive disorder, said some patients are “afraid of legal documents because they have been associated with removal of rights.” At a PAD clinic, she provided helpers, witnesses, a notary and assistance registering PADs in the state database.

At the clinic, Bebe Smith, a clinical social worker, encouraged patients to be specific, but realistic: “If you say, ‘I want to have milkshakes every day,’ that’s not a standard treatment.”

She helped Lashawanda Ivey, who has schizoaffective and borderline personality disorders, complete a PAD. Ms. Ivey trembled as she recalled requesting hospitalization recently because “ voices in my head were louder, and suicidal thoughts were coming.” The hospitalization turned into “an excruciating two days because people weren’t really listening to what I was saying.”

Her PAD says hospitals shouldn’t “overload me with a whole lot of questions” and that although she dislikes electroconvulsive shock, it’s helped her become communicative, so “if they have to do it, yeah.”

In another room, Harrison Pedigo, 26, got his directive witnessed and notarized. He wrote it in 2016, after four hospitalizations, beginning when his parents had him involuntarily committed because he was babbling, smearing paint on the carpet and walking barefoot in traffic. He said he hallucinated while hospitalized, including imagining he was telepathically communicating with a man wearing playing cards.

His PAD objects to three drugs and one hospital, and allows his parents’ involvement, preventing a recurrence of the time a hospital wouldn’t confirm he was there when his mother brought him clothes.

Since completing it, he hasn’t been hospitalized. He takes voice-over classes and lives with his parents in a townhouse decorated with his colorful abstract paintings. His directive is “a safety net,” he said, “to help something not happen again or go smoother if it does.”

 Harrison Pedigo, at home with his parents, Leigh and Paul, suffers from schizophrenia and drafted a PAD in 2016 after four hospitalizations.CreditTravis Dove for The New York Times

Harrison Pedigo, at home with his parents, Leigh and Paul, suffers from schizophrenia and drafted a PAD in 2016 after four hospitalizations.CreditTravis Dove for The New York Times

A window into the human psyche

PADs can be Rosetta stones to a patient’s inner life.

“Sometimes I hear voices that seem to come from another person’s brain,” Andrew, a 29-year-old military veteran from Houston, wrote in his directive’s 18 remarkably frank pages. “I may find it helpful to think about obscure movies other people have probably not seen.”

He listed 15 things that help deter him from quieting his demons with illegal drugs, including origami and playing catch. Conversation is good, wrote Andrew, who asked that his last name be withheld to protect family privacy. “But,” he cautioned, “it is very important that the attempt to converse does not include good-natured jesting, joking or hazing.”

“Sometimes I think that people are not who they say they are,” he advised. “Please let me know you are real by saying things like: ‘We drove here. We did not warp here.’”

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Laurie Hallmark, managing attorney for mental health programs at Texas RioGrande Legal Aid, who helped Andrew draft his directive, said that recently, when he was hospitalized and completely inside psychosis,” a nurse followed his PAD, essentially saying “‘Oh wow! I recognize these behaviors.’” ”

Andrew’s directive includes small steps to defuse big crises.

“Things that may help me to not want to kill myself,” Andrew listed. Among them: drinking Yogi tea and discussing a concept called “infinite replay” — although he added, “I understand that other people may not find this topic fascinating.”

In emergencies, before hospitals use medications, seclusion or restraint, Andrew implores them to try other approaches.

“Please,” he wrote, describing one, “say ‘It’s going to be ok.’”

https://www.nytimes.com/2018/12/03/health/psychiatric-advanced-directives.html