By Father Jeff Putthoff, Founder, Hopeworks ‘N Camden

For the past 18 years I have been working in Camden, New Jersey, a city that has been called America’s poorest and most violent city of its size. During that time, I helped to found Hopeworks, an organization that works with youth ages 14-23 year old, focusing on getting them back into school. Working with these youth, many of whom have dropped out of school and are encountering difficulty transitioning to productive jobs with a living wage, I have encountered many “mental health issues.”

I don’t like the term “mental health.” It puts the cause of problems entirely on the backs of the youth and ignores the role of the toxic stress-filled environment they live in. In fact, the phrase comes from the early 20th century term “mental hygiene,” with associations of a lack of cleanliness. Such terminology leads to shame and blame–that “what has happened to me” really isn’t as important as “why don’t I simply modify my ünclean” behavior. We need instead to acknowledge the powerful impact that toxic stress plays in the role of brain health.

I found the Helping Families in Mental Health Crisis Act (H.R. 2646), introduced by Representative Tim Murphy(R-PA), of Pennsylvania, to be problematic because it misses the importance of context and brain health in the lives of the youth I work with. At a time when so much pain is happening in our country around racism, wealth inequality, abuse and neglect, here in Camden we created a community of healing and hope. Hopeworks is not rooted in shame and blame. We have a saying at Hopeworks – “Hope Is Sweaty” – and for all these years, we did just that. Hope is not some pill you take, or a whimsical ideal. It is a choice to be present, even when the future seems muddled and unsure. Hope is a daily decision to draw near to others, who are often in extreme pain, and to be willing to share that space with them. Sharing the space is the beginning of hope. My profound concern is that the bill clearly misses the importance of context and brain health in outcomes for our youth.

Innovation is what has set Hopeworks apart from many other “programs.” From our inception, we have seen ourselves not as a program to find work for youth, but as a youth development program that is working for the future of our youth. A key discovery we have made in our work is about toxic stress and the traumatic impact it has on the human brain. About five years ago, we shifted our program to focus on “brain health” as it is clear that the exposure to toxic stress has a dramatic impact the health of our youth’s brains. Neuroscience studies make it increasingly clear that such exposure leads to poor health outcomes. Using the Adverse Childhood Experiences (ACEs) study we have adapted our program to helping youth understand “what happened to them.” This shift from “why” to “what happened” has had a profound impact.

Toxic stress is much like radiation: You don’t see it, but the impact is evident. In a city like Camden, toxic stress makes our city a hot zone. People are impacted daily by trauma, which affects them physiologically. We can now measure this impact on health better than ever using tools such as the ACES questionnaire. We strive to be a healing organization, one that responds to the injury and understands trauma so that the people in the organization can be trauma-responsive in their work. Concretely, this means shifting the framework from “punitive/behavior coercing” methods to a framework that asks “How is a behavior helpful for a person?” If we realize that we are dealing with individuals who are adapting and adroitly surviving a great deal of “radiation poisoning,” we will recognize that efforts to simply motivate them or to provide resources without addressing the impact of trauma will fail.

This responsive framework also means that the organization itself must grapple with how it is impacted by the toxicity of the abuse, neglect, violence and poverty around it. Organizations are collections of brains, working in a context. If that context is toxic, the unprepared organization will be affected. A number of years ago, this is exactly what happened at Hopeworks. We came to a place where we basically stopped liking our youth. We increasingly saw their behaviors–being late, their aggressiveness and inconsistency – as “bad behavior” (unclean)–and that we needed to fix. Our organization, our system, had become overwhelmed and reacted with predictable survival behavior. We call this reaction vicarious trauma–it is when an organization itself becomes “irradiated” with toxic stress.

We now understand that the behavior of our youth “makes sense” to them and their own perceived lack of safety, and we now understand the importance of realizing how that behavior works for our youth. In fact, their behavior is a way for a Hopeworks youth to survive. Of course, we want them to thrive, not just survive. In order to move from surviving to thriving, we have had to work with our own and their brain health. The good news is that our brains are resilient; its neural plasticity is well documented. When we focus on the how the brain works, our responses to stress and the health of this important organ, healing can happen. It is a true healing, not simply a behavior change but a resilience that gives rise to amazing things.

Many programs seek out the youth who can make the program work. At Hopeworks, we have adapted our program to meet our youth where they are and to help them first heal, so that they can take advantage of opportunity and move towards a future of thriving. We have done that because we have taken serious the impact of toxic-stress on our brain health. What happens to us matters. We need a new approach to mental health policy. Instead of treating symptoms – as the Murphy bill does – we need a comprehensive approach to brain health that acknowledges and addresses the toxic environments in which so many of our children and families live.

Father Jeff Putthoff, SJ worked in Camden, NJ since 1997. He is the founder of Hopeworks ‘N Camden, a youth technology portal using the technologies of web site design/development, Geographic Information Systems (GIS) and Salesforce  to work with youth ages 14-23 in Camden New Jersey. Hopeworks is a direct response to the current youth crisis that exists in for many youth today. In Camden, where Hopeworks office is located, over 50% of the population is  under 18, only 25% of adults have a high school diploma and the per capita income is $5700. There is an estimated 70% dropout rate from the public high schools in the city of Camden while 53% of all youth live below the poverty line. These factors combine to make life challenging for young people.  Hopeworks is a direct response to this situation.

By Sandra L. Bloom, MD

The Adverse Childhood Experiences Study (ACEs Study) may turn out to be the most important scientific finding of the late 20^th century, opening up windows of opportunity that could vastly improve mental health care, physical health care, and virtually all of our current major social problems. The ACEs study, along with other major epidemiological studies, show that we have a Major Public Health Epidemic that is actually getting relatively little attention in public discourse and has yet to seriously impact policy.

In two recent bills focused on mental health care (sponsored by Representatives Tim Murphy and Eddie Bernice Johnson in the House and Senators Chris Murphy and Bill Cassidy in the Senate), there is scant attention paid to the issue of trauma, much less to childhood adversity and developmental trauma. Such inattention cannot lead to good policy. It would be like trying to eliminate an infectious disease while denying that germs and viruses even exist!

By 1998 when the ACEs Study was first published, the groundwork for the study had already been laid by scientific research on traumatic stress that accelerated after the Holocaust and the Vietnam War. What began to emerge – with ever-increasing importance – was a clearer picture of cause and effect relationships between what happens to us, particularly when we are young and still so actively developing, and the predictable emergence later of a wide variety of health, mental health, and social problems.

There is now such an extensive body of knowledge, research, and evidence that we can no longer rightfully speak about this as “trauma theory” because there is relatively little that remains theoretical about it. It is time for us to take a lifespan approach to all of our major problems with a focus on treatment, yes, but with a simultaneous focus on prevention. Now we can say with surety what it is we need to prevent. Put simply, the greater a person’s exposure to adverse experiences – and all traumatic experiences are considered to be forms of adversity – the greater is the person’s risk for health problems, a shorter lifespan, a wide variety of mental health disorders, involvement in the criminal justice system, substance abuse disorders, homelessness, workplace difficulties. It is important to emphasize here, however, that the research is pointing to RISK, not inevitability. We can say with surety, given a level of exposure that X% of people will develop problems, but we cannot say which individual person will develop which kind of problem. The ACEs Study and all of the major epidemiological studies to which I am referring, are population studies and this is what makes exposure to adversity a Public Health problem, not just a medical, psychiatric, child welfare, or criminal justice problem.

In public health, we loosely describe three levels of intervention and prevention: primary, secondary and tertiary. Primary interventions are aimed at everyone – universal precautions like washing your hands after using the toilet. Secondary interventions are aimed at people who are at risk for a problem. So children who are not big enough to use seat belts in a car are at risk for serious injury even in relatively minor collisions and therefore we create policies that mandate car seats for young children. Seat belts are a primary intervention while special car seats for children are a secondary intervention. Tertiary interventions focus on trying to help the people who already have whatever problem it is we are defining. In the car example, tertiary interventions could be thought of as airbags – they are only deployed when the crash has occurred and are designed to minimize damage while having emergency medical technicians who come to remove injured or trapped people from car crashes can also be thought of as a tertiary strategy.

If we use such a framework around policy initiatives and trauma, then it is useful to think about primary, secondary, and tertiary initiatives. There is a great deal of talk throughout our service delivery systems about “trauma-informed” care or services. This can be thought of as a primary intervention. Everyone should be trauma-informed. A basic understanding of risk factors for – among other things, the ten most common causes of death – should be public knowledge, just as the general public knows that smoking is not good for your health. “Trauma-responsive” is a useful term for secondary initiatives. To the extent that we can assess who is at risk for problems, our systems of service delivery at every level – healthcare, mental healthcare, child welfare, juvenile and adult justice systems, education at all levels, and all of our social service sectors – need to respond through a trauma-informed lens and to develop specific procedures and policies based on those needs. “Trauma-centered” as recently defined by trauma therapists David Read Johnson and Hadar Lubin, is a term that can be applied to tertiary approaches that are trauma-specific in that they are used to help traumatized people heal.

Based on the knowledge we have now, it is time for all of our sectors to take a lifespan approach. For every person, childhood determines the adults we will become in body, mind, and soul. But change can occur at any time along the lifespan and those changes can make things worse or make them better. Making things better without making them worse requires wise, creative, and long-sighted policy decisions made by people who are motivated toward the future, not just the present or the past. As we learn more about the epigenetics of human experience, we are discovering that the challenges and the responses to those challenges in one generation may get passed down to future generations through our own genetic coding. Such knowledge brings with it a whole new level of responsibility, knowledge that is actually at least as old as the Bible when in Exodus, the writer declares that “He will by no means leave the guilty unpunished, visiting the iniquity of fathers on the children and on the grandchildren to the third and fourth generations.” We no longer need to be believers to see how this truism carries forth, even if we deplore the punitive and even unjust premises.

As a society, we have a moral responsibility to do something with the knowledge we now have that most of the suffering brought about in the world today is preventable. In the last century, during World War II, we launched the Manhattan Project to create and detonate the first atomic bombs. Surely we have the ability, though not yet the will, to launch a similar project, only this time not about creating weapons of mass destruction, but instead creating a future worth surviving.

Sandra Bloom is Associate Professor at the School of Public Health, Drexel University, and founder of the Sanctuary Model www.sanctuaryweb.com

By Sera Davidow

Senator Chris Murphy of Connecticut (and his legislative co-pilot, Senator Bill Cassidy) released a new ‘Murphy Bill’ this past week. It’s called the ‘Mental Health Reform Act of 2015,’ though it has yet to be assigned an official number. While many words appear in its more than 100 pages, it’s worth noting that the term ‘evidence’ (most often paired with ‘based’ to form the familiar and supposedly scientific phrase, ‘evidence-based’) appears 27 times. Never to be outdone, the almost 200-page House version (‘Helping Families in Mental Health Crisis,’ H.R. 2646) from Representative Tim Murphy uses the same word 38 times.

This makes sense. Why wouldn’t anyone want anything to do with… well… just about anything… to be, you know, based on research and evidence? I mean, evidence is certainly better than wild guesses, right? Apparently, the most commonly used definition for ‘Evidence-Based Practice’ is this:

“The conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient. It means integrating individual clinical expertise with the best available external clinical evidence from systematic research.” (Sackett et al, 1996).

Most people will hear ‘evidence’ to mean confidence and rigorous standards. They’ll hear that someone has really taken the time to figure things out and get it right. In a most basic way, it (sounds like it) means safety and that inspires trust. Most will read the use of ‘evidence-based’ in these documents in that way, and few will disagree that it’s a good thing, but here’s the problem:

At least in the realm of ‘mental health,’ evidence-based means something more akin to:

The use of current evidence as developed by individuals who had enough funds at their disposal to engage in the bolstering of their own favored ‘best practice’ – often to the exclusion of other evidence to the contrary and commonly more or less in alignment with the dominant paradigm (hence the availability of said funds) – and all too frequently based on research conducted upon such an extraordinarily narrow and contrived group of people and characteristics that it is unlikely to be particularly meaningful or replicable in the ‘real world.’

Furthermore, ‘evidence-based’ practice is frequently measured against outcomes that are defined by a clinician or scientist rather than someone whose life is directly impacted. For example, a scientist might interpret reduction in hospitalization as a primary and positive outcome, but ignore the fact that the person no longer hospitalized is so sedated that they have lost their day-to-day ability to function in anything resembling a healthy manner, and will soon begin experiencing medical complications as a result.

Twenty-seven (or 38) uses seems excessive for such a hollow word, particularly in a document that has the potential to change so many lives in such a dramatic way. But, ‘evidence’ is not alone. Alas, there are many words in the Murphy Bills that serve little purpose other than to mislead or fluff up the grand illusion that these legislators are on to something good. Others include (but are not limited to):

• Assisted Outpatient Treatment
• Peer Specialist
• Recovery

Assisted Outpatient Treatment

The ever-euphemistic term, ‘Assisted Outpatient Treatment’ (AOT) appears prominently in both documents, although in slightly different ways. While Murphy 2013 sought to penalize states that did not take sufficient steps to implement so-called AOT, Murphy 2015 in the House claims only to want to incentivize the states that do. Meanwhile, the Senate’s Murphy Bill takes arguably the most timid approach, claiming to only be continuing existing AOT demonstration projects to 2020.

However, the fact is that all three versions essentially seek to expand (in one fashion or another) the practice of forcing psychiatric drugs and other ‘treatment’ on people who may have done little more than be hospitalized too many times for someone else’s liking, and they are simply experimenting with which version of expansion might be most palatable to the general public so as to allow it to slip by. And, while they’re doing so, they’re calling it ‘assistance.’

Personally, when I picture someone providing ‘assistance,’ it conjures up images of helping an elderly individual across the street, or maybe offering a grant to a young person entering college. I certainly don’t ever imagine forcing someone to take chemicals into their body against their will, attend appointments they don’t wish to attend with clinicians they do not trust, or telling them they must engage in any other activity under threat of hospitalization if they refuse, and then smiling and calling it ‘assistance.’ I might as well commit armed robbery and suggest to the bank that I’m simply ‘assisting’ them in correcting my personal financial woes.

Yet, once again, what impression is it that these bills leave with the voting public? Not only are we kindly assisting someone with what they need, but we’re doing it based on evidence! (Never mind that there’s a great deal of evidence that what I prefer to call Outpatient Forced Commitment [OFC] does not work unless simultaneously implemented with an influx of other improved and voluntary services, in which case it is still not likely to be the OFC that is actually leading to any documented improvements.)

Peer Specialist & Recovery

Perhaps the greatest issue with the newly included (and nearly identical) ‘peer specialist’ sections in both current Murphy Bills is the implication that there is actual goodwill toward and belief in peer-to-peer support. Personally, however, I’m brought back to various conversations I’ve had about drug legalization with individuals who otherwise are staunchly opposed to drug use but feel that legalization is the best way to control and regulate it. In other words, the inclusion of ‘peer specialist’ rings of a desire to scrutinize, limit and control these roles rather than to support them.

Both documents define a ‘peer specialist’ (a problematic term all on its own and the only ‘peer’ role recognized therein) as someone who must be working in collaboration with and under the supervision of a clinician. It lists documentation and assessment as among the primary tasks. Perhaps most frightening, it states that such individuals must not work outside of the ‘scope of their expertise.’ Although it does not specifically define what the supposed scope of a ‘peer specialist’s expertise might be, the implication is that when it is defined, it certainly will not be by the ‘peer specialist’ or anyone they are supporting.

To be clear, this is less ‘peer-to-peer support’ and more co-optation giving way to mandatory assimilation. It represents an uprooting of firmly planted principles already struggling to thrive in many environments. It devalues the potential of people in peer roles to be change agents, ties their hands as ‘advocates,’ and disregards the importance of their operating within the system without being precisely ‘of’ it. The ‘peer specialists’ of a Murphy’s world would be less ‘peer specialists’ and more moles, administrative assistants, and ‘right hands.’

This brings me to perhaps one of the most interesting and overlooked points in the entire document: It also defines a ‘peer specialist’ as someone who has been in active ‘treatment’ for the last two years. Furthermore, in a separate section of the Senate version, when describing a committee to be formed, it designates one seat to a ‘peer specialist’ (as defined above) and another to someone who has been not only in ‘active treatment’ for the last two years but who has expressly ‘benefited from’ it. (The other 21 seats are largely, of course, allotted to various academic or clinical types.) What on earth does any of this say about either Murphy’s actual belief in the word ‘recovery?’

Now, I’m not a particular fan of the word ‘recovery’ (see my blog, ‘Recovery Trap’ for more on that), but for very different reasons. It’s certainly not because I don’t believe in the potential of people who have been given psychiatric diagnoses to heal, move beyond the need for ‘treatment,’ and get on with their lives.

The word ‘recovery’ appears 12 times in the Senate-driven Murphy Bill and seven times in the House version. But, what could it possibly mean to legislators who have written a proposal that so explicitly and intentionally eliminates the voice of anyone who has ever been given a psychiatric diagnosis but is no longer in ‘treatment’? Lifelong ‘treatment’ is certainly not my vision of ‘recovery’ for myself.

Conclusion

Evidence. Assistance. Peer Specialist. Recovery. The linguistic imagery this Murphy duo paints looks kind of pretty at a distance. It’s like one of those paintings that form a beautiful, scenic horizon when one is standing far away enough to see it in that light. However, up close, one can see that the larger image is built on millions of tiny tears and specks of blood.

At a glance, the public will assume that the Murphys intend to prioritize a ‘gold standard’ of treatment – only the very best, most ‘evidence-based’ ‘assistance’ for all. They’ll assume they believe in the potential of treatment and ‘recovery’ so whole-heartedly that they’re even going to invest in bringing in ‘peer specialists’ as living breathing examples of that future-oriented vision.

But, the truth is ugly. The truth is about control, obfuscation, and a game where political careers and appearances reign supreme over the actual issues at hand. These bills pose an unprecedented threat to so many people and organizations engaged in the most innovative efforts, who may be rendered invisible for their lack of ability to fit into the superficial definitions and re-worked meanings that inflate these bills.

What happens to innovative efforts like Recovery Learning Communities, peer respites, Soteria projects, the Hearing Voices Movement, Alternatives to Suicide groups and so many more when they don’t have the money to pay for an ‘evidence-based’ status? When some newly appointed official is told it’s their responsibility to award grants to only those who ‘fit’ a very particular set of standards?

What happens to the others when they call ‘Assisted Outpatient Treatment’ out for what it really is and fight against force? When they fail the newly branded ‘peer’ litmus test for lack of clinical supervision or practicing outside of what someone else has decided their scope should be? Are we ready to let all of these efforts die, in spite of the hundreds of thousands of people who say (‘official’ research studies be damned) that they saved their lives?

And, what happens to those of us (myself included) who stand up to speak but are silenced because we are no longer in ‘treatment,’ or want to share how it didn’t work for us?

It’s funny how these bills and their associated Murphys are claiming a desperate need for great change, and yet what their legislation would seem to most readily accomplish is a narrowing of the field to a lot more of what’s already most strongly represented. I don’t know of anyone who would say the current mental health system is a success (or even vaguely acceptable). However, nor do I know anyone who would say that the mental health system of several decades ago was either, and, at least in part, that’s where the Murphys seem intent on sending us. The only question remaining is who is up for signing on to that ride.

Change is needed, yes. But, why would we trust overworked and under-informed legislators with divided interests to design that change for us? And, since when did change become heaping piles of more of the same?

 

References

Sackett, D. L., Rosenberg, W. M., Gray, J. A., Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: what it is and what it isn’t. BMJ: British Medical Journal, 312(7023), 71.

Sera Davidow is a mother, an advocate, an activist and a filmmaker who devotes much of her time to the Western Massachusetts Recovery Learning Community (http://www.westernmassrlc.org). She entered the mental health system as a teenager and cites “non-compliance” as part of what saved her from a very different path that surely would not have included the freedom she now enjoys from all psychiatric labels and medications.