Act to Keep Students Safe

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Guest blog post ~ Bill Lichtenstein & Amy Peterson

A critical window of time is closing to protect America's kids against restraint and seclusion in schools. According to data just released from the U.S. Dept. of Education Office of Civil Rights, 107,000 kids were subjected to physical restraint or were confined to seclusion rooms in schools during the years 2011 and 2012.

To protect kids nationally, Sen. Tom Harkin (D - IA) and Rep. George Miller (D - CA) have introduced the federal Keeping All Students Safe Act (S. 2036/H.R. 1893) that would ban the use of restraints and seclusion in schools except in cases of a bona fide emergency. However, with Sen. Harkin and Rep. Miller, both passionate champions of this issue and legislation, set to retire from Congress at the end of this year, the fate of this bill protecting students against restraint and seclusion in school is uncertain if the bill is not passed during this session.

As a journalist who's covered child welfare issues over four decades, the story of the use of physical restraint and seclusion rooms in schools remains a deeply personal one for me. In 2006, I learned that my daughter Rose, who was six at the time, had been locked inside a broom closet in the basement stairwell of her school in Lexington MA, over a three-month period, sometimes for up to several times in a day. She was found naked, standing in her own pee, after she removed her clothes so as not to soil herself.  I would later write about her horrific treatment, and exposing the widespread use of restraints and seclusion rooms in schools across the country, setting off a firestorm in communities nationwide over these shocking practices.

Parents, journalists and lawmakers mobilized throughout the country and visited their local schools to find out if restraint and seclusion were being used with their kids. In many cases, they were shocked to find out that they were. Over the past 18 months, state and local legislation and rules limiting or banning the use of restraints and seclusion in schools were passed.

In Reno, NV, for example, 12 seclusion rooms that were found to have been in use had their doors removed, were repainted, and other uses were found for the spaces, with Frank Selvaggio, the student service director saying, "The vast majority of our educators would never even think of trying to do something inappropriate like forcing a child to go into a room."

In Oregon, Gov. John Kitzhaber signed a 2013 law that prohibits use of restraints in schools.  

And the issue cuts across the legislative aisle: in Arizona, the conservative Republican governor Jan Brewer signed legislation into law in April 2013 that limits the use of seclusion rooms in schools.

However, currently only 19 states have laws on the books restricting the use of physical restraints and seclusion rooms with students in schools.  In Idaho, Mississippi, North Dakota, New Jersey, and South Dakota there have been no laws limiting the use of restraints and seclusion in schools, not even that parents be notified when their children are subjected to these practices. The wide range of rules nationwide has led Rep. George Miller to compare the situation to "the Wild West."

Meanwhile, the toll on kids is high.  Of the 70,000 students who were subjected to physical restraint and 37,000 who were confined to seclusion rooms during 2011 and 2012, according to the Department of Education Office of Civil Rights data, students with special needs or disabilities were disproportionately affected.  While students with special needs represent only 12% of the national student population, they represent 58% of those who were placed in seclusion or involuntary confinement, and 75% of those who were physically restrained at school. Students of color with disabilities represent 36% of those who were physically restrained at school, despite accounting for only 19% of all students nationally.  

And the outcome for kids can be fatal.  Sixteen year-old Corey Foster died while being restrained on a school basketball court in Yonkers, NY and 13 year-old Jonathan King hanged himself in a Georgia school after being left alone in a seclusion room, leading to a state-wide ban on the use of isolation rooms.

 

Don King discusses the death of his son, 13 year-old Jonathan, who hung himself after being left in a Georgia school seclusion room. 

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At the February 12 introduction of the Senate Keeping All Students Safe Act, Sen. Harkin compared the seclusion rooms he had seen in schools with cells for terrorists at the military prison that he visited in Guantanamo Cuba (photo below) and Robert Ernst, a former Lexington, MA student, described being dragged into and then locked in a seclusion room in a Lexington, MA school (video at bottom). 

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"Hearing the stories of these students and parents--and the legal challenges they faced when seeking change--it became clear that strong action was necessary to help them and thousands of families like them.  I introduced the Keeping All Students Safe Act to ensure that we put an end to these practices, which have no place in the classroom," Senate HELP Committee Chairman Tom Harkin said in a statement to the Huffington Post.   

Both sponsors of the bill, Sen. Harkin and Rep. Miller, are retiring from congress in 2014. In their absence, advocates are concerned that it will likely be difficult to get this legislation introduced and passed in future sessions.  

"In order for the Keeping All Students Safe Act to become law this Congress, it needs to start moving through committee . . . in the spring or early summer in order to see it pass the full Congress this fall," Julia Krahe, the spokeswoman for Rep. Miller's Committee on Education and the Workforce told the Huffington Post. 

Staff members of both the Senate and House committees agree that it's critical that concerned parents, advocates, educators and the public call Washington and let their senators and house representative know how they feel about the use of restraints and seclusion in schools and the importance of the Keeping All Students Safe Act. Without that groundswell of support, they say, the bill may well die.  

It's critical that you and others you know pick up the phone and call your federal senators and representative to let them know how you feel about physical restraints and seclusion rooms in school and about the Keeping All Students Safe Act.  You can find the phone numbers for your senators and congressperson by clicking here. 
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Bill Lichtenstein with Amy Peterson

billBill Lichtenstein is a founding member of #KeepStudentsSafe and a fierce advocate for the rights of youth and families. Nationally recognized for both journalism and media, his work has appeared in some of the nation's leading publications including the New York Times. His work has been honored with more than 60 major journalism awards, including a Peabody Award; a Guggenheim Fellowship; eight National Headliner Awards; a United Nations Media Award, and three National News Emmy Award nominations.

amy2Amy Peterson is a founding member of #KeepStudentsSafe and a fierce advocate for the rights of youth and families. Amy Peterson's 20-year-old son is on the autism spectrum, and from her own experience with IEPs, health plans and accommodations she has coached and advocated for numerous parents behind the scenes in their work with school special education teams. She has served on numerous boards and committees that serve children and parents living with autism and has been a speaker at regional parent/educator conferences.  A legal assistant in a practice that dealt with family and trial law, Amy has worked as a freelance journalist and writer for 13 years. She is now using her talents to build community around the Keeping All Students Safe Act to help build a safe learning environment for all children.

The power of words: What the Wall Street Journal didn’t tell you

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Two weeks ago there was an editorial in the Wall Street Journal that basically eviscerated the Substance Abuse and Mental Health Services Agency (SAMHSA) while at the same time calling for support of HR 3717 – The Helping Families in Mental Health Crisis Act.

Last week we featured a Morning Zen post by Jonathan Delman, who provided a perspective on the article from both a consumer and researcher of mental health services point of view.

Over the past few months we have written extensively on HR 3717 and the challenge the proposed bill presents in its current state. It has elements that we agree with as well as elements we don’t. In addition, there are elements that are just plain confusing to us. If you haven’t already, I encourage you to read the Morning Zen post where we went through the bill page by page, identifying areas that raised red flags for us. We will be posting an updated more-detailed review next week.

Since the introduction of the proposed bill we have read with great interest articles in the press, personal communication, and written testimony from past Energy and Commerce Subcommittee on Health hearings on HR 3717. Much of what has been written is definitely passionate and unfortunately sometimes vitriolic. In this Morning Zen post I want to address three of the most popular sound bites (two of which found their way into the WSJ editorial) that continue to come up again and again. It is interesting to note that these three provocative sound bites seem to have gone unquestioned in the popular press all these months, taken at face value for fact, creating an impression that might not be accurate. The other interesting aspect is that all three sound bites reference the Alternatives Conference. Some day I'm gonna have to go to that conference to see what all the fuss is about. 
Note to readers: I have no monetary investment in the Alternatives Conference, nor have I ever participated in the Alternatives Conference.

Here are the three juicy morsels that keep making their way into the press:

  • The 2013 Alternatives Conference included a session titled “Dance Your Way to Wellness and Recovery.
  • The 2013 Alternatives Conference included… a presentation from the “Hearing Voices Network,” which believes that hearing voices is a natural part of human experience...
    • From WSJ article - SAMHSA underwrites the Alternatives conference, which in 2013 included a session titled "Dance Your Way to Wellness and Recovery" and a presentation from the "Hearing Voices Network," which "believes that hearing voices is a part of human experience."

  • The 2013 Alternatives Conference included a session titled “Unleash the Beast.”  
    • Opening Statement of the Honorable Tim Murphy Subcommittee on Oversight and Investigations Hearing on “Examining SAMHSA’s Role in Delivering Services to the Severely Mentally Ill” May 22, 2013.

      "If SAMHSA were to use an evidence-based approach to identifying how to prioritize its resources – like other federal agencies do – would their record, not to mention their strategic initiatives going forward, look the same as they do now? For example, in 2012, an annual conference that has been funded by SAMHSA for many years – and at which the SAMHSA administrator regularly delivers a keynote – Alternatives, an hour and a half workshop was held, described as follows: 

      Unleash the Beast is a mind/body fitness program that looks to the animals of the jungle for wisdom and skills that can benefit our lives in a myriad of ways. Through animal-inspired movements, behaviors, and expressions, participants are encouraged to shed layers of formal conditioning in order to return to their primal nature.

      While mental and physical health is important, I question the value of this exercise in advancing the treatment for mental illness in humans. And, I question if there is any scientific merit." 

In the most recent hearing on HR 3717 one of the expert witnesses was asked if he thought SAMHSA offering a workshop titled Dance Your Way to Wellness and Recovery was a good use of federal funds. I remember at the time thinking how I would answer. It would be something like “It depends on the context.” Realizing that I did not know the context I did some digging. In true Morning Zen fashion, here now is some background on each of them.

Let’s start with “Dance Your Way to Wellness and Recovery.”
It turns out that this “session” was actually part of the morning wellness activities offered to conference participants from the hours of 7 am – 8 am before any general session started. In addition to this offering, there was a yoga session as well as a silent meditation session. Like most Network faithful, I have been to many conferences that offered early riser exercise or centering sessions to prepare conference participants for a long day of sitting in sessions. I would be hard pressed to imagine any physician arguing against the benefit of exercise or centering activities before a long day of workshops. Think Zumba – one of the biggest conference crazes currently around. And why do conferences offer sessions like this? Because increasingly conference participants demand wellness activities so that they can get their workout or quiet time in before the workshops begin. But let’s peel the onion a bit more and look at the description of this session as printed in the conference agenda:

  • “The Health and Wellness Fair is also offering selected wellness practices throughout the conference. These wellness activities are open to anyone at any fitness level. Activities are on first floor.”
    Wellness Activity: 7:00 – 8:00 a.m. Dance Your Way to Wellness and Recovery (Foothills I)
    Shining River (Sheilah Hill)
    "To watch us dance is to hear our hearts speak" (Hope/Choctaw). Dance for celebration, for wellbeing, for mental clarity, and healing. Learn how to release tension and discover new ways to listen to your body. No dance experience or ability is necessary for this free-form movement. 

The description makes clear that the focus is on free-form movement – no dance experience necessary and also references the importance of dance to tribal nations, presenting an opportunity for some cultural learning as well.

With this important context, the accusation that offering this wellness activity is a poor use of money gets complicated real quick. It should be noted that the conference also conducted mini-health screenings where people could get their blood pressure checked, get a reading on their blood sugar levels, and get some ideas on getting and staying healthy. Sounds pretty reasonable to me.

Hearing Voices Network
Okay, on to the next oft-used phrase in this increasingly vitriolic dialogue, also referencing the Alternatives conference – “a presentation from the “Hearing Voices Network,” which believes that hearing voices is a natural part of human experience.”

Here is the workshop description:

  • Discover the Hearing Voices Network (Foothills II)
    Lisa Forestell, Marty Hadge, Janice Curtis, Becky Edwards
    The Hearing Voices Network (HVN) believes that hearing voices is a part of human experience. The presenters are voice hearers and trained HVN facilitators who find support through community created around the HVN principles of inclusivity and non-pathological, judgment-free connection. This workshop will provide an overview of HVN and its principles and will provide information on how to develop new hearing voices groups across America. 

It turns out that the Hearing Voices approach has been developed over the last 25 years in Europe and is now practiced in 23 countries across the world. Essentially it involves engaging the voice hearer about their experience and determining the meaning the voices have for them in relation to their lived experience, with the objective of developing long term coping strategies.

One of the tenets of Intervoice, which is the international umbrella of the Hearing Voices Network, is to develop a close and respectful partnership between voice hearers – who are experts by experience and mental health workers, academics and activists – who are experts by profession. The group stresses the importance of both voice hearers and professionals engaging in respectful dialogue.

In context, this seems like a perfectly reasonable session to offer at a recovery conference. I get the fear amongst the psychiatric community that this suggests that there is never a role for psychiatric intervention but from what I read that appears not to be the case. This is undeniably a controversial discussion point from the medical community perspective but this is also a movement that is not going away. If anything it is picking up steam. Instead of shouting it down, it seems to me that the more fruitful approach would be to engage in respectful dialogue.

Here are two examples to illustrate further what the Hearing Voices Network is. The first is a Ted Talk by Eleanor Longden and the second is an interview by Allen Frances, MD with Eleanor Longden. The sub-title of the interview is appropriately titled “Reconciling psychiatry and recovery.”

Eleanor Longden, Hearing Voices Network
Eleanor Longden spent many years in the psychiatric system before earning a BSc and an MSc in psychology at the University of Leeds. She argues that schizophrenia is a "creative and ingenious survival strategy" that should be seen "as a complex, significant, and meaningful experience to be explored." Longden is studying for her PhD and lectures and writes about recovery-oriented approaches to psychosis, dissociation and complex trauma.  

Psychiatry & Hearing Voices: A Dialogue With Eleanor Longden
In this interview, Dr. Allen Frances and Eleanor Longden have a dialogue attempting to find common ground between psychiatry and the Hearing Voices Movement. Read the interview. And then, come back to this post – we still have more to cover. Dialogue is key, folks. 

Okay Network faithful, hopefully you have some better context around this second sound bite as well.

Unleash the Beast
On to the final sound bite, not in the WSJ article, but worthy of inclusion here in case you are asked about it. This is from the Opening Statement of the Honorable Tim Murphy Subcommittee on Oversight and Investigations Hearing on “Examining SAMHSA’s Role in Delivering Services to the Severely Mentally Ill” May 22, 2013:

"If SAMHSA were to use an evidence-based approach to identifying how to prioritize its resources – like other federal agencies do – would their record, not to mention their strategic initiatives going forward, look the same as they do now? For example, in 2012, an annual conference that has been funded by SAMHSA for many years – and at which the SAMHSA administrator regularly delivers a keynote – Alternatives, an hour and a half workshop was held, described as follows:

  • Unleash the Beast is a mind/body fitness program that looks to the animals of the jungle for wisdom and skills that can benefit our lives in a myriad of ways. Through animal-inspired movements, behaviors, and expressions, participants are encouraged to shed layers of formal conditioning in order to return to their primal nature.

    While mental and physical health is important, I question the value of this exercise in advancing the treatment for mental illness in humans. And, I question if there is any scientific merit." 

Without the proper context one could draw the same conclusion. Unleash the Beast is such a provocative title I had to investigate this one. It turns out that the presenter grew up alongside an older brother with autism. At the age of 12 he was in a serious car accident and suffered a severe Traumatic Brain Injury. He spent three months in the hospital, relearning how to walk, talk and think. The next 15 years of his life were spent riding a roller coaster of success and setback dealing with severe physical, mental and social difficulties. Fast forward to today, he is a certified Life Coach, peer support specialist and works with individuals discharging from the psychiatric ward at a local hospital. His specialties include working with individuals who have brain injury, trauma/PTSD, bipolar, Autism spectrum/Asperger disorder. 

Okay, he passes my test for a credible presenter. But what about the subject matter? I didn’t attend the session so I certainly can't speak to that but it did get me thinking about mind body work and the question of scientific merit. Network faithful should be aware that the National Institute of Health established the National Center for Complementary and Alternative Medicine (NCCAM) in 1999. Since that time they have been looking at alternative forms of treatment (meditation, forms of movement therapy such as yoga, etc.) and are taking a refreshingly open view towards the efficacy of complementary and alternative practices that may not yet be considered evidence based. Much of what has been discussed in this post most likely falls into the practice-based evidence camp instead of the evidence-based practice camp. It is encouraging to see that NIH is keeping an open mind about alternative practices, as we all should.

Watch this brief video announcement from Josephine P. Briggs, M.D. Director, National Center for Complementary and Alternative Medicine

One thing we know for sure, the Veterans Administration has embraced body movement practices with returning servicemen and veterans who are experiencing PTSD. At the Washington VA Medical Center, both Yoga and meditation are used to help veterans recover from trauma. Many treatment programs for veterans with PTSD as well as individuals with diagnosed severe mental illness offer mind/body therapies, equine therapy (remember the first sound bite - Spirit of the Horse?) and other expressive arts therapy, including the healing power of dance. For a fascinating read on how dance/movement therapy approaches were used to foster resilience and recovery among child soldiers in Sierra Leone who had experienced significant trauma, read the paper by David Alan Harris.

The next time you read a sound bite... 
The next time you are discussing HR 3717 with colleagues and one or more of these sound bites are referenced, hopefully you will be able to avoid the visceral reaction (pro or con), thoughtfully consider the context and will be able to engage in meaningful dialogue about this proposed bill.

Look for our updated analysis of HR 3717 next week!

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network 

CMHNetwork continues education on the Healthy Transitions Initiative

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When I have the honor of meeting with elected officials or their designees I make it a rule to always try to surround myself with colleagues who are a whole lot smarter than me. This meeting was no exception. Every time I bring a young adult with me to a meeting on the Hill I am inspired and encouraged about the next generation of leaders. We are indeed in good hands folks. But don't rest too easy; we have much work to do.

Last week, I asked Network faithful Lauren Grimes, Transitional Age Youth Outreach Coordinator for On Our Own of Maryland to join me in a meeting with Senate Appropriations staff to discuss the wide range of services and supports that are working well with emerging adults who have been involved with the mental health delivery system.

As always, our focus of discussion was on the importance of federal government looking at the wide range of needs of emerging adults, not just those with a serious mental illness. A current challenge, exacerbated with the horrific spate of shootings that have taken place over the past year, is that the focus of discussion about "what to do" is heavily focused on those individuals with the most serious illness, creating a troubling "either or" scenario where we have advocates fighting with advocates about what defines quality treatment.

Sounds like a perfect playground for the Children's Mental Health Network...

In the meeting with Senate Appropriations staff Lauren told her story, which includes all of the elements of current debate - hospitalization, medication, recovery, resilience, and the importance of capitalizing on the human spirit to improve. 

Now here is the important part - we weren't there to ask for money for a particular program or grant. Our sole purpose was education - providing an opportunity for a peek into the lives of young adults who are championing their recovery through some amazingly creative and progressive ways.

At the conclusion of the meeting we made a commitment to provide continued examples of success with efforts involving the Healthy Transitions Initiative. That means we need to hear from you HTI grantees. If you have examples of success this would be a good time to let us know!

The other item we discussed was the controversial topic of Assisted Outpatient Treatment. Also referred to as Involuntary Outpatient Commitment, this is a controversial approach to working with individuals with a serious mental illness that Network faithful would do well to ramp up to speed on. As we are a collective voice, there are Network faithful who are for and against this approach. We are busy compiling a separate page focused on Assisted Outpatient Treatment, but for now, here are a few resource articles for you to peruse:

We ain't gonna stop with our education efforts in Congress
The distance from my home to the Senate and House in Washington, DC is 554 miles roundtrip. I must tell you that every mile driven down good old I-95 is worth it if we can continue the quest to broaden the education opportunities of those who are making decisions about the type of services and supports that are funded by the federal government for young people with mental health challenges and their families. Network faithful know we refuse any federal funding so that our voices may remain clear to be supportive with both praise and constructive criticism when necessary. Tempting as it might be to take a grant here or there to keep things goin', it's not gonna happen... (Here comes the pitch)
If ya wanna throw a few bucks into the gas fund for the old truck, we ain't gonna stop ya!

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network

Congressman Murphy has agreed to meet to discuss challenges in the Helping Families in Mental Health Crisis Act

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Last Thursday I attended the House Committee on Energy and Commerce, Subcommittee on Health hearing on the Helping Families in Mental Health Crisis Act (H.R. 3717), sponsored by Congressman Tim Murphy. I have to admit disappointment that some of the expert witnesses had not read the entire bill themselves. Take note Network faithful - if you are going to present before elected officials you need to be able to answer "yes" if you are asked the question "Have you read the entire bill?" Regardless of how cogent your points are or how many crackerjack support staff you bring with you, I can tell you as one who was sitting between two reporters when that particular question was asked; credibility takes a hit when the response to a question like that is "No, I have not."

The hearing, which is available for viewing here, underscored how much work lies ahead in educating Congress about the exciting approaches to meeting the needs of individuals with mental health challenges that have taken place over the past 30 years as a result of the family and youth movement, as well as the important work being done in brain research and specific evidence-based practices for the seriously mentally ill.

At one point during the hearing, Congressman Tim Murphy stated that one of the goals of this hearing was to get ideas about how to improve the wording of the bill and that he welcomed input. Okay Network faithful, no way we are going to pass on that entrée.

After the hearing I requested and was granted a meeting with Brad Grantz, Legislative Director for Congressman Tim Murphy. We met at 5:00 pm that evening and had a spirited and respectful discussion of some of the main challenges in the bill from the perspective of the Children's Mental Health Network. I told Mr. Grantz that we wanted to be helpful to the process of addressing the bill during the continuing discussion while it is in Committee. I am most grateful that Mr. Grantz took time on what had to be a hectic day to meet with me on such short notice.

What is important for Network faithful to understand is that currently the discussion about HR 3717 seems to be falling into two camps - for or against. Complicating the discussion is the fact that both those in favor and against find elements in the bill that they support (read our initial breakdown of the bill here). Regardless of our feelings about components of the bill that, from our perspective, set the family and youth movement back decades, open and constructive dialogue is key.

With that as a backdrop I am pleased to announce that Congressman Murphy has agreed to have a face-to-fact meeting with representatives of the Children's Mental Health Network to discuss the bill and hear our suggestions for how to improve upon the language in the bill and address our concerns.

Dialogue is key folks. Just saying no to a proposal that is now being discussed in forums that include support from elected officials from both parties will not work. We send a hearty "thank you" to Congressman Murphy for being true to his statements in the hearing about wanting input and look forward to a productive dialogue. We will keep you informed as the details of the face-to-face meeting get worked out. Look for an updated analysis of the bill in the next issue of Friday Update.

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network

Wall Street Journal editorial on SAMHSA "shameful, deceptive, and untruthful"

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Earlier this week the Wall Street Journal published an unsigned editorial in their review and outlook section that eviscerates SAMHSA for how (as they state) "undermines treatment of the mentally ill."  Needless to say, there has been both outrage and support, especially in the midst of the current discussions around HR 3717 - Helping Families in Mental Health Crisis Act. Read the Wall Street Journal article and then read the Morning Zen post below from Guest contributor Jonathan Delman. Please share your comments on this most important topic!

Guest blog post ~ Jonathan Delman 

This editorial is shameful, and even worse deceptive and untruthful.

I know many people like me with multiple hospitalizations, lived in a halfway house for years, multiple meds (still on some of these) and ECT, having been on SSDI, and have achieved what I call a “solid state” of recovery, but clinical work got me only so far, with decent stabilizing improvement I was still miserable with suicidal ideation., etc. …. I got  into the recovery process for several reasons, a few most relevant ones I will state here:

  • By  joining the statewide (Massachusetts) consumer advocacy group (Transformation Center), I could develop an identity, reduce social isolation, get social support, and ultimately a job and wife through this- The Transformation Center is an agency that was financially supported by SAMHSA… Through the Transformation Center- we have certified peer specialists (creating job opportunities for many people), and many other innovations that state has adopted- among other things creating jobs for people like me who couldn’t get them.
  • Getting and taking advantage of employment opportunities – I couldn’t find a job for many years, until a peer run “consumer satisfaction” organization was funded, and I became the peer in charge director, Consumer Quality Initiatives, and (I’m no longer there) I think it’s fair to say that we had a positive impact on both mental health programs, systems and research.
  • My wonderful parents, and my father in particular-put up with, respected my choices, and supported me without conditions. I’m still in awe.

I must say that when I look at people in recovery from or otherwise put living meaningful lives with severe mental illness, the keys are:

  • Family support - I have seen no one do it alone;
  • Opportunities; and
  • Pre mental problems demonstration of competence, even if just for a short time.

Difficult to address the latter, but it’s SAMHSA that has been phenomenal on the first two. And with peer specialist opportunities, I have seen people with severe mental illnesses change their lives dramatically.

The question raised here is “Which groups of people with SMI recover?”, if they do “What are the factors”, and if not “Why not?” We know something about this through the studies of Courtney Harding, Martin Harrow, et al.

These are fair questions, but this ghost written “editorial” is simply a long term public relations ploy of involving people quoted in the article.

Here at UMass. We have developed the Program for Recovery Research to  address in a systemic and thoughtful way these question, but we’re new and will take a bit to get to them.

As a consumer and person in recovery, I greatly appreciate the work of SAMHSA (even if I don’t always agree) and  this council in recognizing the psychosocial factors that in my view are almost necessary for recovery. We KNOW (through high quality research and personal reports) that many people do recover from severe mental illness (Maybe they should have talked to Ely Saks or Moe Armstrong). To attack supporting that reality is despicable, and there is no way mental health care would have prevented 90% of these terrible shootings.

  • Conflict of interest report- I have received reasonable stipends from/through SAMHSA to consult,  some subcontracts using SAMHA money (not the case currently), currently working for the Transitions RTC. I have also achieved wellness in large part via SAMHSA supported activities. in  My wife Deborah is the director of the Transformation Center, which has regularly been supported through mostly SAMHSA network grants (not currently). 

With great respect,

Jon Delman 

delmanJonathan Delman, PhD, JD, MPH is an Assistant Research Professor at the University of Massachusetts Medical School, Department of Psychiatry, and a principal at Reservoir Consulting Group. At UMass, Dr. Delman is the Director of the Program for Recovery Research, and the Associate Director for Participatory Action Research at the Transitions (to adulthood) Research and Training Center. Dr. Delman, himself a person with a mental illness, is considered a national expert on recovery-oriented care and measurement, peer support services, community based participatory action mental health research (CBPR), activating consumer participation in both treatment decisions and policy development, and transition age youth. He has regularly advised SAMHSA (Substance Abuse Mental Health Services Administration), NIMH, and the state Department of Mental Health on these matters.

Dr. Delman is a 2008 recipient of a Robert Wood Johnson Community Health Leader award, one of ten awarded nationally, for “individuals who overcome daunting obstacles to improve health and health care in their communities.” He has received several awards from the Massachusetts Department of Mental Health for “Distinguished Service”, and is a member of the editorial board of the Psychiatric Rehabilitation Journal. Most recently, he was appointed to the Institute of Medicine’s Committee on Developing Evidence-Based Standards for Psychosocial Interventions for Mental Disorders.

Making opponents our friends - pass the Act

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Guest blog post ~ Amy Peterson 
Reprinted with permission - Be sure to follow the advocacy efforts for the Keeping All Students Safe Act on Facebook and Twitter

I lost a friend I had for close to four decades over the way we each see this legislative issue. I feel the loss, but it's worth it. I feel the loss, because I could not just dismiss him as someone who is ill-informed and too stubborn to see both sides. He's a commercial pilot and flight instructor in southern California, a forty-something confirmed bachelor, childless (as far as he knows), a champion uncle, a thoughtful and intelligent individual. 

As kids, we debated the problems of our world in the '70s and '80s walking home from school together more days than not. In fifth grade, we protested the launch of a school newspaper for a few handpicked students who were not us, and who certainly would not have prevailed over either of us in any comparison of writing acumen. 

Outraged, we began an underground student newspaper published with my mother's typewriter and my father's office copier. Through a rigorous process of rock, paper, scissors, he was named editor-in chief and I was content and style editor. We had a reporting staff of ten. My point -- we were each other's early partners in social change, subversiveness, and seeking equality. 

Fast forward to late 2013 - I posted about this issue often on my Facebook wall, and had what I thought were spirited discussions in which we simply disagreed. I didn't tag him in the posts, and wouldn't have minded if he'd scrolled on by. In fact after the second dust up about it, I suggested we needed to agree to disagree and perhaps he'd be happier scrolling. 

The third time, it still seemed civil enough, but shortly after I clearly had not changed my mind, he blocked me on Facebook and has not returned my email or phone messages, except to tell me not to contact him further. I'll respect his wish. I guess he somehow felt disrespected by my enthusiasm. Of course that's not what I wanted to happen, but I'm willing to take some risks, accept some losses to win the passage of this Act. 

This friend inadvertently helped me clarify possibly the major obstacle we face. His opinion was mirrored in the letters GOP members of Congress have sent to constituents, and posts by opponents of the Act.  

"This should be a state/local matter." 

"The federal government should not come into our schools and tell teachers and administrators what to do." 

"These challenging children constitute a problem in parenting. Or, they don't belong in school if their behavior is so severe." 

"So children are just going to run amok?" 

"There is no room in the Constitution for the federal government to do anything." 

We have to show, not just tell, that local control hasn't worked. It's primarily the desire for local control that drives most people who oppose this Act. 

The media tools we're developing with Revolution Messaging, including an interactive web site, a web-based dialer to put any citizen on a fast track to their congressional representatives, and an educational and outreach video, are important, and the extent of their importance just hit me tonight. 

We must get the word out that local regulation has not worked. It doesn't work if the school districts minimize, blame, deny, discredit, and retaliate. It doesn't work if the schools don't have the tools to intervene in a positive manner. We've seen the stories of students and parents who experienced all that and more. 

Most citizens opposed aren't saying they don't care about children. They're saying the federal government should not become a nanny state, and that there is not room in the Constitution for a federal law to stop these practices. 

Our task is to assure them that this does not mean the federal government is going to become intrusive in schools and districts that already use positive interventions, the ones that already have repainted and repurposed the seclusion rooms, or that never put children in solitary confinement at all, the ones that would put a student in restraints only in rare emergencies, the ones who always bring in the parents or guardians as part of a team to do the best for each child. 

We're building tools that are up to the task. It's so exciting to have everyone here. Your support matters. Your willingness to share with your friends and contacts, even at some risk, may well change the world for all our children. 

Thank you. 

amy2Amy Peterson is a founding member of #KeepStudentsSafe and a fierce advocate for the rights of youth and families. Amy Peterson's 20-year-old son is on the autism spectrum, and from her own experience with IEPs, health plans and accommodations she has coached and advocated for numerous parents behind the scenes in their work with school special education teams. She has served on numerous boards and committees that serve children and parents living with autism and has been a speaker at regional parent/educator conferences.  A legal assistant in a practice that dealt with family and trial law, Amy has worked as a freelance journalist and writer for 13 years. She is now using her talents to build community around the Keeping All Students Safe Act to help build a safe learning environment for all children.

An Intro to a Young Adult Consumer Publication

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Morning Zen Guest Blogger ~ Lauren Grimes

“I am not young enough to know everything.” 
Oscar Wilde

In one of my fitful brainstorming sessions, after On Our Own of Maryland asked me to organize a publication by and for youth with mental health struggles, an interesting idea occurred to me. Young people and mental health consumers, as two distinct populations have the salient similarity of not only both being marginalized groups within society, but as being thought of as deficient or partial in one way or another. The predominant image of a mental health consumer within American society is that of an incomplete person. They are a human being, but a flawed one, one with faulty wiring somewhere, which results in insufficient data leading to limited capacity. Young people have a similar prevailing image, and one even more widely accepted than that of the consumer, because it is understood as simple science. A young person is seen as an undeveloped person, an incomplete adult. They have smaller bones that will grow to their intended length and strength with years and lots of milk. They have less knowledge that will grow with diligent years in a classroom and some hard life lessons, and a frontal lobe that will remain undeveloped until at least 25 years old, when logic and careful consideration will finally eradicate their emotional impulsivity. 

Yet, hasn’t science also said that once you stop growing physically, you actually begin disintegrating?  Human beings are many things, but they are not static. We are either growing or dying, right? Hasn’t it also been said that as you get older there is a process which we often refer to as “being jaded”?  Doesn’t that process normally involve forgetting something you once passionately knew to be true, or at least being less able to connect with that conviction? 

With the birth of the consumer movement, one of the ideas proposed by those who struggled with their mental health was that maybe the line between madness and brilliance is much thinner than we allow ourselves to believe. Maybe mental illness is a gift rather a deficiency, a sensitivity to forces within ourselves and the world that most of us don’t or won’t feel, a connection to a part of the brain that is not included in the standard 10% the average human accesses. Maybe those that we burned at the stake, lobotomized, and then tranquilized in “quiet rooms,” in a de-escalating manner of barbary over the centuries, are the very people that have graced us with the most intensely beautiful pictures and progressive ideas about life, what it is to be human, and how we connect to the rest of the universe. Their ideas have challenged us as a society to open our minds and to not only refrain from relegating individuals with mental health experiences to society’s fringes in the name of social hygiene and control, but to help them cultivate their unique insight into the world, so that they may become productive partners in making our culture and society the best and most reflective of us all and of all of our truths that it can be. 

This concept, pioneered by the mental health consumer movement as well as the civil rights and gay rights movement among others, is, I believe, rightly applicable to young people as a group as well. Instead of marrying ourselves to the linear picture of young people as incomplete or underdeveloped adults, I challenge you to allow them to be a full and complete entity all their own, and to find whole value in the way they see the world. Rather than simply tolerating the characteristics of young people that make them typically “young,” or striving constantly to replace them with characteristics which we consider to be more “adult,” consider that those very things are a comprehensive worldview rather than an unfinished one; that their instinct, which we spin with negativity and call impulsivity, and the intense emotion of adolescence, which we make trite, are not deficiencies in age or shortcomings of knowledge, but valuable worldviews which, when we easily dismiss them under the pretense of “they don’t understand yet,” we rob both ourselves as a society of their unique insight and the young people themselves of the idea that their notions at all stages of their lives are important, inspiring, and worthy. Maybe the minds of those with mental health experiences are not short-circuited but more fully connected, and the frontal lobe of the young is not undeveloped but a different kind of mind altogether. 

In the past decade there has emerged a new culture among young adults, fed by changing social norms such as the large-scale inclusion of women in the workforce, later ages for marriage and childbirth, and the pursuance of higher education by both sexes. This nascent culture of the ‘emerging adult’ rests at the intersection of adolescence and adulthood, between the colorful dreams of childhood and the more rigid lines and roles of adulthood, between the inherent supports of our youth and the great responsibility of seeking the those supports needed in adulthood. 

We, as a behavioral health system talk at length about the great challenges and numerous difficulties that come with the young adult transition age, and about how we can and need to help with this process. I do not discount the potency of these challenges nor the need for support because the challenges have certainly overwhelmed me and supports have certainly helped in some cases. While this is valid, what I don’t think we talk enough about are the enormous gifts of insight that have also developed as the culture of this new age-group has emerged. Linearly, with regard to age, we as young adults rest at an intersection, but so therefore do the lessons we learn, and the knowledge we gather, and the experiences we have. These lessons and experiences, which then become distinct ideals and values, are derived from two different worlds simultaneously, and therefore young adults are often uniquely able to connect with the experiences of both adolescents and adults, two populations who often have great difficulty connecting with one another. ‘In between’ comes with undeniable challenges, but it also comes with wonderful gifts that need to be acknowledged before they can be cultivated just as challenges need to be recognized before they can be supported. 

A 23 year old young woman wrote in her story Too Close to the Sun, which was published in The Icarus Project’s Reader/Roadmap in 2006, that the most honest statement that has ever been uttered to her about psychosis is that “it is very hard to argue with a person who is not only manic and delusional, but [also] not really that far off the mark.” There are advocates who have been touched by mental health experiences and who believe in its gifts as much as they do its challenges, and who insist on the benefit that could be reaped by us all if a concerted effort were made to understand the language of psychosis, so that these salient thoughts are not lost to us as a society. I see a similar dichotomy with youth. Our thoughts are often laden with angst or other emotions that can dilute the salience of a point the way that the symptoms of psychosis can also dilute a relevant thought. I am advocating here that this same effort toward understanding be applied to young people, especially those with mental health challenges, as I believe such a learning experience would benefit our larger society, as well as shed light on how to best support and care for youth and young adults both within and outside of the systems that serve them. 

As a consumer movement, we have advocated for decades that recovery from the darkest depths of grief, addiction, mental illness, and trauma is a journey that teems with valuable skills and insights. Some of these come quickly and others slowly, some of them come from dreams and others persistent and careful routine. But so many of these skills and insights lay fallow as society continues to paint individuals with mental health experiences as dangerous, unpredictable, unrealistic, not whole, and because all of these assumptions, not credible. If you consider it for a moment, we so often do the same to young people. 

We all feel like we have held the shimmering piece of truth in our hands; that we have touched its shininess, caressed its conundrum of perfect gelatinous angles; have known the thing that everyone else seems to be missing. We have held it on our tongues and waited to speak it or we have spat it at you because we want badly for you to know its unadulterated beauty too. We all deserve the latitude to hold these truths fast and dear, and also to have them validated. I think adults are often not even aware of the frequency that they dismiss, ignore, and even deliberately squash the truths belonging to the young. The ideas that glow for them at 10, 14, or 18 years old should be stoked as a fire, and young people should be encouraged to speak them aloud, not despite the fact that they do not reconcile entirely with a more adult perspective, but because they don’t. I believe we have as much to teach the world as we have to learn from it. 

Young people and mental health consumers have much in common, and young mental health consumers have a voice doubly insightful and bursting to be heard. Here is what we have to say. Go ahead. Doubt us. We are not going to stop talking. Frankly, dear old mad, mad world, you do not have it all figured out.

laurenLauren Grimes is the Transitional Age Youth Outreach Coordinator for On Our Own of Maryland. She has struggled with and overcome numerous behavioral health challenges since she was a young adolescent, and has extensive personal experience with the mental health system which she freely draws from in her work in the peer world.  At 26 years old, she has worked and volunteered with youth and adults involved in the behavioral health system, as well as youth in the foster care, child welfare and juvenile justice systems.  She works extensively within the field of peer support and youth-led systems change on county, state, and national levels, aiding organizations in incorporating the youth voice into their policy and operations, and helping young adults to create an equitable and reciprocal relationship with their service systems.  She is also the winner of the SAMHSA’s  2013 Young Adult Voice Award.

Do your part to support a strong 302(b) allocation

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Network faithful take note. Each year, the Committee on Education Funding, the Coalition for Health Funding, and the Campaign to Invest in America's Workforce partner to circulate a letter throughout our respective communities in support of strong 302(b) allocations for the House and Senate Labor-HHS-Education Appropriations Subcommittees. The bigger the allocations, the better our chances of securing funding for these agencies and programs; or in the current environment, preventing further cuts.

The Children's Mental Health Network is a proud member of the Coalition for Health Funding and we wholeheartedly encourage all organizations who follow us faithfully to sign on to this letter that urges appropriators to provide the Labor-HHS-Education Appropriations Subcommittees a FY 2015 "302(b)" allocation at the FY 2010 level of$163.6 billion. The letter also urges Congress to end sequestration and continue to work to find a balanced, meaningful approach to deficit reduction.

So why is signing this letter so important?

  • Bottom line? If we don't get a strong 302(b) allocation, all of your efforts on behalf of your favorite individual discretionary program... well... ya might as well just cast some old bait wrapped around a rusty hook into your neighbor's overfished pond...

Okay, I can hear you saying, "But wait, our organization is going to fight solely for the discretionary program that benefits us most directly." Ah, but here is the rub with that approach. Without a strong 302(b) allocation for Labor-HHS-Education, there is very little chance of increasing funding for your priorities. And there is an even greater likelihood that your priorities will be cut. So keep up your advocacy and education efforts on behalf of your individual interests, but stratify your approach to include equal, if not greater, intensity on the bigger picture. Individual silo efforts will only weaken us all.

Still not convinced?
Then do the math. The 302(b) allocation is the amount of funding the Appropriations Committees provide to the subcommittees. The subcommittees then divvy up the funding between the agencies and programs within their respective jurisdictions. For the Labor-HHS-Education Appropriations Subcommittees, health agencies include NIH, CDC, HRSA, AHRQ, and our beloved SAMHSA, among others. At this stage in the appropriations process, discretionary health programs are competing for funding with all of the other non-defense discretionary programs within the spending cap established by the BBA.

With the passage of the Bipartisan Budget Act of 2013 (BBA) the top line discretionary 302(a) allocation has been set at $1.014 trillion, clearing the way for appropriators to move forward in making the 302(b) allocations to the subcommittees. A strong 302(b) allocation for Labor-HHS-Education increases the odds for funding those discretionary programs you are most passionate about.

Time is of the essence.
The goal is to secure more than 900 signatories so that there is widespread and diverse support for encouraging appropriators to provide the Labor-HHS-Education Appropriations Subcommittees a FY 2015 "302(b)" allocation at the FY 2010 level of$163.6 billion. Please note that in the interest of expediency, and as a courtesy to the hundreds or organizations that will sign, no editorial changes to the the letter will be accepted. Signers must agree to sign the letter "as is." As well, only organizations are signing - no individual signers on this one.

What happens once my organization signs? 
All signatures will be added to the letter and sent to the House and Senate Appropriations Committees mid-March. We will forward you a copy of the letter for your records. A copy will also be posted on the Coalition for Health Funding's website: www.publichealthfunding.org

What can I do to help with this effort? 
Sign on, and then forward this message and letter far and wide. Signatures are being accepted from national, state, and local organizations, institutions, businesses, companies, etc. Anyone and everyone who cares about funding for programs in the Labor-HHS-Education bill. Remember, only organization representative signatures on this one.

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network

Newspaper draws back the curtain on the state of (dis)affairs in the CA mental health delivery system - Why we link it to Parity

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A gut-wrenching story was just published in the California Sacramento Bee newspaper regarding the alarming trend in California showing an increase in hospitalizations of young people. In the article, reporters Jocelyn Wiener and Phillip Reese paint a picture of the mental health delivery system in California that is not pretty. Here is just some of what they have found:

  • Mental health hospitalizations of California’s youngest residents – those 21 and under – increased 38 percent between 2007 and 2012, jumping from 34,000 to 47,000, higher than the national average. The trend affected the privately insured, as well as poor children with government insurance. 
  • The number of people 21 and under showing up in emergency rooms for mental health crises increased by 50 percent between 2007 and 2012. Some of those youths went on to be hospitalized.
  • One of the providers interviewed for the story, Dr. Jason Bynum, describes a crisis situation where the "majority of the youth he treats are suicidal or self harming–the rest are violent, homicidal or deeply delusional. " What is sobering is that because services are stretched so thin he ends up discharging his young clients without the help he feels they need. “It’s a matter of time,” he said, “before something bad happens.”
  • A key observation made in the article is that young people in California "are not receiving adequate mental health services at two key junctures: before they spiral into crisis, and after they come home from the hospital. The shortage of options in the middle, ranging from home-based mentoring and family therapy to acute residential treatment where children spend weeks or months, is driving up hospitalizations, Gardner said."
  • And yet another heart-breaking quote comes from Matt Soulier, a juvenile forensic psychiatrist at UC Davis’ MIND Institute, who said he sometimes finds himself wishing his patients would break the law. "Once they’re in the juvenile justice system, they have much better access to mental health treatments. It’s almost a blessing when they commit a crime. We tell parents of patients every day, ‘As soon as your kid commits a crime, for sure call the police.’ ”
  • Read the full story on the Sacramento Bee website.

So what does all of this have to do with Parity?
For the CMHNetwork, this speaks directly to the challenge we see across the nation, as parity becomes a reality. Advocates must be brazen in ensuring that "parity" includes a full spectrum of services - not just inpatient and outpatient. 
It's not enough to get those "in the middle" services in place, we have to get them insurance codes and healthy reimbursement. Parity is important and to be celebrated but parity that does not include payment for services in-between the two extremes keeps us in the dark ages of mental health delivery. I often get accused of "raining on the parity parade" by bringing this issue up. Think so? Consider another quote in this excellent article from Patrick Gardner, a San Francisco Bay Area attorney who specializes in children’s mental health law and policy. He describes children’s mental health care in California as a “bipolar” system – with 50-minute therapy sessions and psychotropic medications available on one end, and hospitalization on the other. The shortage of options in the middle, ranging from home-based mentoring and family therapy to acute residential treatment where children spend weeks or months, is driving up hospitalizations, Gardner said. “Those children are going to have to go somewhere. And typically where they go is emergency rooms, juvenile halls or hospitals.”

Don't for one minute think that this bipolarization of the mental health delivery system is not taking place all across the country. This is but one more example of why advocacy groups need to get directly involved in discussions with insurance companies and Medicaid officials about the array of mental health services covered and payment structures to help better ensure quality in the delivery of services. We are heading for a national travesty in children's mental health if we stay passive on this.

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network 

New Statewide Family Network grants get the ax. What you should know and what you should do.

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SAMHSA  announced last week that the proposed funding for up to six new Statewide Family Network grants would not be made available due to budgetary constraints. Our phones have been ringing off the hook about this, as have the phones of a number of other children's mental health advocacy groups. Amidst the angst of realizing that the proposed size of the grants for 2014 had been raised to 98 thousand per year (for a lucky five recipients) only to see those dreams dashed due to the need to trim the budget, it is important to keep several factors in perspective. As the advocacy community moves forward with planning efforts to raise awareness about the importance of statewide family networks there are realities that need to be addressed and factored in to any planning efforts.

  1. We can't say we weren't warned, but it still hurts that families are taking it on the chin
    When the original announcement was made back in late December we posted it on our website. The language in the announcement was clear - "Funding estimates for this announcement are based on an annualized Continuing Resolution and do not reflect the final FY 2014 appropriation. Applicants should be aware that funding amounts are subject to the availability of funds." The cutting of these new grant awards serves as a good reminder that as advocates we can never really rest. The Statewide Family Network grants are the only grants funded by SAMHSA that focus on families who have children with serious emotional challenges. Yes, this one hurts and if there is a single question to be raised it would have to be about snipping at the heels of the only truly family-driven grant effort emanating out of SAMHSA.
     
  2. Forget 2014 - focus on the 2015 budget
    Now I am big believer in the motto "never say never" but the 2014 funding train has left the station so it is hard to imagine any change for this year. Think of this year as a great opportunity to mobilize for 2015 budget planning. It will be here sooner than you think. 
     
  3. A swift kick in the pants is not always a bad thing. 
    The sudden cut of funding for new grants doesn't mean that statewide family network grantees should slink into the shadows. To the contrary, if this is the kick in the pants that was needed to get family organizations and those who care about the work of family organizations mobilized then in a strange sort of way this is a good thing. A number of national consumer and family organizations (whose members are direct recipients of many of the existing grants) are meeting to develop strategy and the Children's Mental Health Network stands at the ready to help in whatever way we can. Both the Federation of Families for Children's Mental Health and the newly formed Family Run Executive Leadership Association (FREDLA) should be front and center on this issue.
     
  4. Stop relying on SAMHSA
    I want you to think about it for a minute before you throw something at your computer screen. Federal funding for statewide family networks began in 1988 with 5 demonstration projects and has continued to evolve with the assistance of federal funding (meager as it may have been) to present day. At some point, Statewide Family Network grantees need to look to alternative funding strategies so that they don't get in the pickle of single-source funding that may or may not be available from year to year. To be clear, the funding from SAMHSA has been instrumental in helping family organizations get a foothold - one that may have never materialized if these grants had not been funded. But to rely on this source of funding as a make or break equation is foolhardy at best. This is a complicated discussion point and raises all sorts of equity questions but is a sustainability discussion Statewide Family Network grantees need to have - over and over again. Rest assured the Children's Mental Health Network has no problem chewin' on the ankles of SAMHSA to drive home a point when warranted, but the responsibility of sustainability works both ways. I strongly encourage those who are interested in the evolution of this grant program to read The History and Evolution of Statewide Family Organizations Addressing Children's Mental Health (Friesen, Koroloff, Anderson, 2005).
     
  5. Pack your toolkit with the essentials
    Way back in May 2013 (seems like yesterday) we focused on the joint Medicaid bulletin issued to states by the Centers for Medicare and Medicaid Services (CMS), along with the Substance Abuse and Mental Health Services Administration (SAMHSA) regarding "their options for structuring mental health benefits as part of an agency-wide effort to draw attention to behavioral health services." How many of you have read the bulletin? How many of you have acted on the recommended strategies we laid out, especially as it relates to youth and family involvement? We have to take the bull by the horn folks. If you want the concept behind this particular grant program to flourish (which is the bottom line intent of federal grants like this) then you can't passively wait for someone to do it for you. CMS and SAMHSA have actually given all of us a gift in that the joint memo provides an opportunity to open up dialogue with Medicaid about increasing the array of fundable services. I encourage you to revisit our Morning Zen post written back in May and begin strategizing how you can implement the recommended action steps. 

    Understand that I am not advocating that Statewide Family Networks provide these services but Statewide Family Networks should be at the forefront of advocacy efforts on behalf of increasing the array of effective services for youth with emotional challenges and their families. While some network grantees provide services and do so well, the overall intent of the grant program as originally designed is to strengthen the voices of families at the local and state level in areas of policy, program design and development.

    The other document that you should know backwards and forwards is the recently released final rule on Home and Community-Based Services (HCBS). For those states that choose to pursue an HCBS waiver this final rule means great things for youth with emotional challenges and their families regarding the flexibility and opportunity to provide services and supports that are more closely aligned with what youth and families need, not necessarily what a particular provider has to offer. Click here to read the Morning Zen post written a few weeks back.

    Being able to converse about these two documents ups your game and increases your credibility in state circles. Whether your state pursues these options are not, the point is that you can be the one bringing them up. You can be the one scheduling meetings with your state Medicaid Director to talk about how to improve services for youth and families. You can be the one to talk about the importance of sustaining family-driven efforts like the Statewide Family Network program beyond federal funding. These are but two tangible examples of how you can begin to leverage yourself into the funding conversation on behalf of your Network program. 
     
  6. Read the tea leaves.
    The days of being able to rely on a federal grant to fund a program year after year are over. Yes, the anger over the cutting of these new funds in what appears to be a disproportionate share of the overall cut is real and should be addressed with SAMHSA. But don't use all of your anger-driven energy to convince SAMHSA. Save some of it to fuel the discussion around the question "What if SAMHSA did not exist to give federal funds to Statewide Family Network efforts? What would we do then? That, to me, is the more important question. Fight the good fight with SAMHSA, but be equally prepared to fight the good fight with colleagues and those who espouse a family-driven and youth-guided approach at the local and state level.

Okay, so if you haven't unsubscribed from Friday Update just quite yet, let me share a final thought. I have had the amazing good fortune to have been involved with the Statewide Family Network grants in one way or another since their inception. I will never forget the constant juxtaposition of geography (i.e., Texas vs. Rhode Island vs. frontier Utah), disparities in income, existing access to services and cultural realities for those early grantees who were all getting the same meager amount of funding and being asked to do the same thing, regardless of the vast differences between funded states. It was an uphill climb then and it is an uphill climb today. But what remained inspiring then and continues today is the resilient spirit of family leaders across the country who continue to sacrifice, not of their own choosing, but of life's circumstances, on behalf of youth with emotional challenges and their families. We at the Network will continue to follow the developments with regard to the Statewide Family Network grants and will continue to highlight the important work they do. As well, we will continue to push us all to take a stratified approach to funding important initiatives like the Statewide Family Network grants.

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network 

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