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.
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
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.’ ”
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
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.
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.
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.
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.
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).
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.
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
I am working with a group of people (Action to Keep Students Safe) who are developing a campaign to support passage of the Keeping All Students Safe Act. This Act addresses the misuse of restraint and seclusion in our country's schools.
There have been hundreds of documented incidents in which children have been abused, and some even died, as a result of misuses of seclusion and restraint in public and private schools. In many schools, these practices were used disproportionately with children with disabilities and students of color. State regulations and oversight vary greatly and have often failed to protect children and there are currently no federal laws that address how and when restraint or seclusion can be used in schools. It is impossible to determine the full scope of this problem because there is currently no consistent reporting of data. (From the House Committee on Education and the Workforce.)
We urgently need to find 4-5 young adults who experienced restraint and seclusion while they were in school. They must be ages 18+ so they can speak of their own accord about their experience, although a family member may be present with them. This is a time sensitive request as we need to hear from them as soon as possible.
If you know of a young adult who would be willing to discuss their experience with restraint and seclusion while in school please contact me or have the individual contact me for more information at firstname.lastname@example.org.
Scott Bryant-Comstock President & CEO Children's Mental Health Network
Note: This Zen piece was written before the President had signed the Omnibus bill. The bill has now been signed so it is official - Healthy Transitions Initiative is included at $20 million.
As Network faithful know, we have been leading the charge for the House and Senate to pay closer attention to the needs of young adults with emotional challenges as they have worked tirelessly to craft a challenging omnibus spending bill. Our specific area of focus was around the Healthy Transitions Initiative (HTI). Countless Network faithful sent letters of support; stories about the benefits of services and supports for young adults and first-person accounts of how approaches like those found in the Healthy Transitions Initiative had made a significant difference in their lives. *(Click on "Healthy Transitions" to read the chronology of our activities dating back to August 3rd, 2013.)
Network faithful efforts appear to have had an impact as we have potentially really good news on this front. It appears that the Healthy Transitions Initiative has made it back in to the bill at the 20 million dollar level. Yes, it is not the 25 million originally proposed but in these fiscally challenged times it is definitely something to celebrate. Please remember that nothing is certain until the ink from the President's pen dries after he signs off - hopefully tomorrow. But for now, the collective voice of the Children's Mental Health Network should give a hearty pat on each others back for your commitment to speaking out. We are especially appreciative of the young people from across the country that sent in heartfelt messages of support.
I was fortunate to be able to speak on the phone and visit with Senate Appropriations staff over the past few months and have lost count of the number of email and phone messages that I have sent. On one of the visits I was accompanied by Raphael Alexander of Youth M.O.V.E. National, who did what only a young person can do - make it real. The purpose of these visits was to find out how we could help educate decision-makers about the breadth of experience of young adults with mental health challenges as a way to balance what has been written about in the national media as a result of the multiple horrific school shootings this past year. Guns + violence does not equal mental illness has been our mantra. We know that only a small percentage of young adults with mental health challenges are violent and in fact are more likely to be the victims of violence. We focused not just on HTI but also the much broader topic of the multiple strategies and innovative efforts taking place to meet the needs of youth in transition - from those services needed for youth in highly acute situations to those types of services needed for those who just need a nudge. Our message to staffers was that we were in this for the long haul and wanted to do whatever necessary to provide better education on the depth and breadth of services options for youth in transition.
So all that being said, we have an important challenge ahead of us. If the President signs off tomorrow it is an indication that the Executive Branch and the Congress are placing their faith in national efforts to improve services and supports for youth in transition. That means it is on us folks. We have got to show strong evidence that an initiative like Healthy Transitions can make a difference. Evaluators, social marketers, providers, families and youth will need to work collaboratively even more than they already have to battle the pervasive misperception of who young adults with mental health challenges are.
On that note, one of the exciting results of our meetings with Appropriations staff was their agreement to visit a variety of programs that work with youth in transition. The CMHNetwork is working with organizations, youth and families in Maryland to coordinate a visit that will facilitate an up-close-and-personal conversation about the variety of resource options for young adults with emotional challenges, from the most severe to those who are just needing some support. We are tentatively looking at February for this meeting and hope to have an agenda to share with the Network very soon. House Appropriations staff are being invited as well. A special thank you to our Maryland partners for stepping up. On behalf of Network faithful across the US, Canada and a growing following in countries across the globe, a hearty congratulations to you all!
Next steps? No celebrating until this is done so we need to wait until tomorrow. But regardless of whatever happens with this bill, the challenge given to you remains the same - we need to step up our education about the vibrancy, brilliance, complex and affirming nature of youth in transition. We have much to be proud or regarding this next generation of leaders. It is our responsibility to ensure that they have what they need to make the next step into healthy adulthood.
Scott Bryant-Comstock President & CEO Children's Mental Health Network
The Centers for Medicare & Medicaid Services (CMS), HHS, just published a 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.
Got your attention yet?
Let me state it differently. For many years those of us in the system of care world have talked, argued, pleaded and begged for a broadening of Medicaid coverage of service and supports that families say they need but may not be a part of the traditional array of options available to them. This final ruling opens the opportunity for states to move from the rhetoric of "family-driven and youth guided" into an era where they are actually approving Medicaid funding for services and supports based on what individuals say they need rather than what may or may not be available in an existing provider pool.
The Final Rule is a whopping 371 pages long but don’t let that deter you. I encourage you to read it. I read it over the weekend and I gotta tell you it was a page-turner, full of comments from advocates, citizens, providers and rationale from CMS about why they incorporated some comments and did not incorporate others into the Final Rule. Okay, so maybe not on par with a John Grisham novel, but just about as good. I especially encourage care coordinators, case managers and peer partners to read it. Why? Because if you approach it not as a "rule" with acronyms, codifications, extremely long section headings that appear to have been written by a cryptologist... If you encourage yourself to not get caught up in the technicalities of the document but to let it breathe, hear its heartbeat if you will, then you will see why this Final Rule opens up exciting opportunities for youth and families. Each area that received comment (thank you Network faithful for weighing in!) is addressed by CMS in this document. Reading the entire document opens a window into what advocates, providers and end users of service are thinking about critical issues like consumer choice, integration into the community, clarification of what is an institutional setting and what is not, quality assurance, person-centered planning vs. family-driven planning and more.
The bottom line for this rule is that states have the opportunity to design and tailor Medicaid services to better accommodate individual needs and make sure that " individuals with disabilities are supported in the most integrated setting possible."
If you are an advocate and want some muscle in your array of tools when discussing service and support options funded through Medicaid in your state this is one document you want to have. And if you are really serious your copy will be full of highlights, sticky notes and bookmarks - it's that rich in what it says. But as we all know, the important challenge is moving from what is said in this Final Rule to actual implementation. This document can help you get there. Here are just a few "quotables" from the Final Rule. We include a "CMHNetwork translation at the end of each quoted section. The document is full of fabulous information that you can use to leverage the rights of youth and families so you will want to skip whatever show you were going to watch tonight and devour the entire document:
Page 16, 17 - "While HCBS are not available while an individual resides in an institution, HCBS may be available to assist individuals to transition from an institution to the community. Recognizing that individuals leaving institutions require assistance to establish themselves in the community, we would allow states to include in a section 1915(i) benefit, as an “other” service, certain transition services to be offered to individuals to assist them in their transition to the community... Importantly, these services must be exclusively for the benefit of the individual, not the hospital,[our bold] and must not substitute for services that the hospital is obligated to provide through its conditions of participation or under federal or state laws."
Page 27 - "... we note that the “other services” specifically referenced in the statute may include coverage of services not designated in the list of specific services, and gives states the flexibility to propose and define other specific services."
CMHNetwork translation: Services and supports can be made available that are "exclusively for the benefit of the individual." Advocates need to be working with state officials to better define what those services and supports should look like. Note: CMS will be providing examples of "other services" in future guidance (page 28). Be ready to comment when this happens Network faithful!
Page 29 - (comment) “Some individuals may need assistance from their personal care provider to communicate their needs, medical history, redirect behaviors, and provide consistent person-directed physical assistance. Most hospitals do not have adequate, nor trained staff to provide the level and type of ongoing ’personal care’ many people using HCBS require. Providing continuation of HCBS while someone is in a hospital is not letting hospitals avoid their responsibilities, but rather acknowledging the reality that their focus/responsibility is on ’medical care’, while HCBS’ focus is on ‘personal care’.” (CMS response) We agree with the second commenter and believe that this should remain an option afforded to the state subject to the conditions and limitations stated in our rule. To support program integrity, states are required to perform claims edits or adopt other systematic approaches that prevent duplicate payment. Translation: For those eligible who need acute care, HCBS services can stay in place as long as they are not duplicative of hospital efforts. For those advocates who deal with the challenge of silo approaches to care when crises come up, this is an important component of the final rule to remember.
Page 39, 40 - "We believe the requirements we are finalizing are critical to ensure that individuals have the opportunity to receive services in a manner that protects individual choice and promotes community integration." (page 43) "States must ensure that when an individual chooses a home and community based setting, the individual has made an informed choice among options." Translation: These are your "back of the business card" descriptions of the 371-page document. Bottom line, this is about individual choice and broad integration into the community. Music to the ears of Network faithful!
Page 108 - "Several commenters supported the language as written, stating appreciation that CMS has clarified that the term “community” refers to the greater community and not solely a community of one’s peers and, that integration also means more than integration in a community of peers." Translation: The often-overlooked definition of "community" being more than just a community of peers is an important distinction for advocates to keep in mind when assessing state plans utilizing these waivers. Pay attention to this one when discussing innovative approaches to community integration in your state.
Page 146 - "These requirements describe a person-centered assessment including behavioral health, which will take into account the individual’s total support needs as well as the need for the HCBS to be offered. Section 1915(i)(1)(E)(ii) of the Act requires that states use the assessment to: determine the necessary level of services and supports to be provided; prevent the provision of unnecessary or inappropriate care; and establish a written individualized service plan. To achieve the three purposes of the assessment listed above, the assessor must be independent; that is, free from conflict of interest with regard to providers, to the individual and related parties, and to budgetary concerns." Translation: Family and peer partners should not let this one slip by. Those providing assessments need to be free of any conflict of interest with providers so that they can remain solely focused on the needs of the individual.
Page 210, 211 - "Comment: One commenter recommended that CMS require that states make publicly available targeting, phase-in, and quality improvement plans, including by posting on public websites. Response: At this time, we do not post state plans on our website. We are working on a project to make approved state plans publicly available. We encourage states to provide for effective public engagement in all of their Medicaid program activities, and states are required to provide 60 day public notice when states change reimbursement methodology or revise CMS approved section 1915(i) of the Act needs-based criteria." Translation: We will keep a watchful eye and let you know when CMS completes their project to make state plans publicly available. This will be immensely helpful for cross-state learning, not to mention providing another level of public accountability - always a good thing!
Page 225 - "We received 286 comments about person-centered planning, most indicating how important it is to individuals that HCBS are provided in a manner that supports their values and preferences, rather than to satisfy an impersonal or provider-centered plan of care. In the comments immediately below we outline the suggestions that do not directly affect the regulatory language, and indicate in some cases where we will consider these ideas in developing future guidance." Translation: At a minimum, read this section. The issue of what is meant by "person-centered planning" and how similar or dissimilar that is to "family-driven planning," continues to evolve with discussions around language in rules such as this one. An important takeaway is that CMS appears to be listening to all comments and is keeping an open mind about the language they use in the Final Rule. For you college professors reading this Morning Zen post, this section alone would make for a great debate topic in any health, psychology or social work class that focuses on individual choice in the treatment planning process.
Okay Network faithful, you get the idea. Curl up by the fire and read the Final Rule. And then, speaking of fires, light one under your state officials if they have not yet applied for one of these waivers. In fact, we would love to hear from some of you who have applied and are implementing an HCBS waiver. Let us know your experience and the benefits you are realizing for youth with emotional challenges and their families.
In our continuing focus on the joy, brilliance, strength and fortitude of young adults who have had experience with receiving mental health services, I want to share with you one shining example of a youth-driven, stigma-smashing, positive approach to creating a safe space for young adults to express who they are.
Youth M.O.V.E. (Motivating Others through Voices of Experience) Oregon (YMO) is a youth led, state-wide, ever-expanding 501(c) 3 non-profit organization that is dedicated to improving the services and systems that foster and promote the positive growth of Oregon’s transitional age youth and young adults (ages 14-25) by using peer support and uniting the voices of individuals who have lived through and experienced a vast array of obstacles with various state-run systems including (but not limited to) mental health, addiction/recovery, juvenile justice, incarceration, foster care, education, and child welfare. YMO provides community members with drop-in centers, youth support groups, and various trainings dedicated to helping at-risk youth and young adults.
Youth M.O.V.E. Oregon embodies all that is good about young adults who have experience with the mental health delivery system who choose to rise above the fray of stereotype and stigma and make their own mark on what works best for them - driven by their perspective and experience, not that of someone else. Fans of the Network know well that we love this kind of spirit and are most excited to share it.
Recently I had the opportunity to visit with Martin Rafferty, Executive Director of Youth M.O.V.E. Oregon to discuss their program, philosophy and approach to working with young adults. One of the things he said during our conversation that struck a chord with me was that in any of the five YMO locations throughout the state of Oregon anyone is welcome to participate. Even though the focus is on youth with emotional challenges, diagnostic criteria or stigmatizing labeling is never used and, quite frankly, is a non-issue. The focus is on building strengths and leadership so that youth can give back to their community. Sort of puts a different lens on things, doesn't it?
This multi-faceted youth-led organization does it all - from motivational speaking to workshops and training, consulting and technical assistance, all from a youth perspective. One of Rafferty's greatest wishes is for our nation to come to a point where "every story about the failures of the mental health system (which are often justly deserved) is accompanied by a story about examples of success. For it is success that we need to build on, not failure." Well-spoken Mr. Rafferty!
Here are just a few of the many accolades and accomplishments this young organization has earned in the past few years:
YMO is the largest advocacy organization for young adults in Oregon. Direct services operated in 8 different counties where hundreds of young adults are served every month.
YMO staff and members sit on over 32 councils, boards and decision-making bodies in Oregon. The primary curriculum ran at every YMO location, is focused on helping young adults become leaders in their own life – and then in the system.
YMO trains traditional services on how to engage young adults more effectively. Youth M.O.V.E. Oregon has worked closely with universities to teach students who will work in the mental health field how to better understand the young adult population.
The Clackamas Drop The Clackamas Drop, a YMO operated drop in center is the flagship of the program. The center has been so successful it is being replicated 300 miles away in Medford Oregon. The program in Medford is slated to open in early 2014. Peer services offered by YMO and other youth peer organizations have saved the county more than $100k a year, by estimates of Clackamas County Behavior Health. Most youth who initially enter the doors of the drop in center, have no idea that the location they are visiting offers mental health services. The focus of the center is on bridging services to young adults by being “Stigma Aware.” The staff that work for the drop in center are trained peer support specialists, yet without the large badge bearing the YMO logo you wouldn’t know they were staff. Rafferty describes the approach of staff at the Drop as "leading from behind."
The process for working with youth who visit the YMO Drop is straightforward and strengths-based:
Intake and Initial Asset Assessment – Using a program/curriculum developed by YMO, young adults have a non-coercive and friendly intake process focused on an assessment of their assets using the 40 Developmental Assets instrument from the SEARCH Institute. This intake doesn’t feel like a process to young adults, it feels like a conversation.
Peer Support – The Drop offers opportunities for young adults to drop-in during its hours of operation. It is staffed by Peer Support Specialists who have lived experience in different systems.
Leadership Support Groups – The Drop offers weekly mental health support groups to enhance leadership skills and help young adults feel connected and anchored in the system. These groups operate twice a week and include outdoor adventure trips.
Restoring Lost Assets – The focus of support activities as well as leadership and recovery groups is on helping young adults identify and develop assets that they may have not acquired or may have lost as a result of their life experiences thus far. The connection with Peer Support Specialists and other young adult participants, as well as graduated Hub participants, who are becoming young adult mentors and leaders, assists in the asset acquisition. Understanding what young adults have lost by being system involved is the most important method in understanding how to restore normal abilities.
System Navigation – Individuals working in the system partner to provide psycho-educational and system navigation information to young adult participants. This has included representatives of the community college, schools, medical community, Job Council, housing organizations, and other community supports. Building a road of trust to system weary youth is a primary goal at the Drop.
Education and employment skills- A focus on learning across the life span in addition to traditional educational and employment skill development is fostered. Part of the main requirement of being a member of the Drop is a positive based focus on education.
Outcome Measurement – Using the YMO program based on the 40 developmental assets, young adult asset development is tracked over time. This enables the Hub to provide critical feedback to system partners on the effectiveness of their efforts and outcomes. While this tool is still in development, it’s already being used in other programs across the state.
Silent Watch Youth M.O.V.E. Oregon has a focus on reaching young adults who can't visit services directly. Compelling outreach includes creating videos, Hip Hop Style Art, and other multimedia projects. One of these campaigns is known as the Silent Watch, which is Youth M.O.V.E. Oregon's take on "inspirational" quotes, featuring a youth often wearing a black hoodie. The symbolism of the hood speaks to many young adults. This campaign has helped reached young adults from across the nation. Here are a couple of examples of Silent Watch posters. You can see them all on the Youth M.O.V.E. website.
What's ahead for 2014 The over 5,00 twitter and 3,000 facebook followers of YMO have much to look forward to in 2014. In addition to continuing to strengthen their outreach centers, YMO will be conducting a series of celebrity and policymaker interviews, beginning with Scott Adams, the artist behind Dilbert and a critically acclaimed author. In the interview Scott Adams will give tips to young adults on how to beat apathy in a seemingly bureaucratic world. We at the Network can't wait to read this interview!
Finally, enjoy this 15 minute documentary video that introduces you to what Youth M.O.V.E. Oregon stands for. It will give you just a hint why we are so excited about this up and coming generation of mental health advocates who refuse to be defined by a label.
Guest Morning Zen contributor and Network faithful Laurie Ellington of Zero Point Leadership TM continues our education on the relationship between neuroscience and leadership in systems of care. We are sharing her most recent paper on the topic in this Morning Zen post. Enjoy!
System of care leaders are people who are trying to influence positive change. How well this goes depends largely on the ability to perform under pressure and adapt successfully in the face of adversity- also known as resiliency. Effective leadership during systems change efforts requires durability, perseverance, and the capacity to resist the deleterious effects of stress within personal contexts and workplace environments. A passion and commitment to excellence is not sufficient, nor is a high IQ or talent. In addition, ignoring physical, emotional, and mental limitations leads to fatigue, malaise, burnout, and pessimism. Navigating the complex challenges involved with change while having the stamina to create a desired future seems to rely heavily on having grit and self-control to persist in the face of uncertainty and turbulence. Angela Duckworth, math teacher-turned-psychologist at University of Pennsylvania, describes grit as passion and perseverance for long term goals and the ability to stick with the future to make it a reality. She also states that “part of what it means to be gritty is to be resilient in the face of failure or adversity.” Confronting disruptive change is inevitable. Being able to regulate emotions while steering through challenges related to disruptive change is where things get a little sticky. Leaders who have been able to do this are the ones who have historically achieved our most amazing accomplishments.
Emotion regulation entails a considerable amount of personal self-control, and is arguably one of the most robust predictors of successful leadership. The capability to tap into what neuroscientist Matthew Lieberman refers to as ‘the brain’s braking system’ is what separates us from other lower primates and is also what allows human beings to invent and creatively hurdle over the most challenging obstacles. Our capacity to be gritty and dogged in spite of impulses that could derail us is very unique. This braking system in the brain that assists us in staying firm and determined to achieve a desired goal is called the right ventrolateral prefrontal cortex. Located in the prefrontal cortex, it is heavily involved in our ability to control ourselves, including the ability to regulate and control our emotions.
For system of care leaders to demonstrate grit and resiliency while encountering life’s biggest challenges, they need to be able to turn on this system and use it for self-management. In our neuroLeader MasterClass™, we provide a variety of vehicles for helping system of care leaders understand their brains so that they can use their braking system to their advantage.
Here are 4 powerful strategies we teach leaders that help them use their brain’s braking system to increase grit and overall levels of personal resilience.
Labeling- This technique involves putting negative feelings into words and is good for lower level threats that cause emotional arousal. Labeling turns on the brain’s braking system, setting the self-control process in motion and dampening the emotional response. In other words, the limbic system, the part of the brain that detects threats to our survival, is calmed down and thinking resources managed by the prefrontal cortex are freed up. The key to effective labeling is to not engage in a long conversation with yourself or anyone else about the details of the emotion, as this will only further activate the limbic system and increase the threat response in the brain. Labeling can be done silently or expressed out loud. People find that using something symbolic seems to be a bit more effective. For example, “I am feeling a little pressure right now.” Or, “I am experiencing some tension.”
Reappraisal – This strategy harnesses our power to interpret things differently, or change the meaning of a situation. This is a good strategy to use when labeling alone is not sufficient enough to dampen the threat response. Studies illustrate that when we change the meaning of a situation, the threat response in our brain and autonomic nervous system arousal is significantly reduced, giving us the opportunity to activate the brain’s braking system and change the emotional response to a threatening situation. This allows us to get the most out of our prefrontal cortex and higher order thinking resources. Neuroscientist Kevin Ochsner at Columbia University conducted an experiment where participants were shown a picture of people crying outside of a church and then asked to perceive the same picture afterwards as a wedding ceremony, where people were shedding tears of joy for a newly married couple. As soon as the participants reappraised the scene as a wedding vs. a funeral, which changed the meaning of the event, activation in the limbic region of their brains was decreased and the prefrontal cortex came back online.
What situation would you like to give a different meaning to? How would this change your emotional response and future behavior?
“If our emotional responses fundamentally flow out of interpretations, or appraisals, of the world, and we can change those appraisals, then we have to try to do so. And to not do so, at some level, is rather irresponsible.” ~ Kevin Ochsner
Mindfulness- A strategy for stepping out of autopilot, mindfulness is state of active, open attention on the present that gives us the capacity to observe thoughts from a distance. As described by John Kabat-Zinn, professor of medicine and director of the Center for Stress Reduction at the University of Massachusetts Medical School, mindfulness is paying attention in a particular way, on purpose, in the present moment, and nonjudgmentally. When anxiety levels are high and the threat response has been triggered, we miss incoming information and make more mistakes because we have over directed our attention inward. Peak performance in systems of care requires the ability to observe our brains and minds at work- to be aware of our awareness. Without this ability we do not have the capacity to turn on our braking system and regulate emotions. This is when panic and habitual responses move us out of the driver’s seat and take over.
Click here for easy mindfulness exercises that take less than a minute.
Want to know how mindful you are? Click here for a mindfulness assessment that takes less than 10 minutes.
Biofeedback- In our brain-based leadership development programs, neuroLeaders-in-training use a self-monitoring biofeedback mobile technology called emWave2 developed by HeartMath® to help them change their reaction to stress and tone down the brain’s alarm system so that they can access the brain’s braking system instead. This self-regulation tool measures heart rate variability (HRV) and levels of coherence, a state characterized by order and harmony between psychological and physiological processes.
Coherence can be scientifically measured and has been proven to have numerous mental, emotional and physical benefits, giving leaders more control during threatening situations. This increases access to thinking resources needed for navigating chaotic and unpredictable situations. Studies show that high levels of heart rate variability and states of coherence are associated with peak performance and the ability to achieve a state of flow.
Want to learn how to use this technology to increase your personal resilience? Click here.
References Duckworth, A. (2013, April), Angela Duckworth: The key to success? Grit [Video file]. Kabat-Zinn, J. (1994). Wherever you go, there you are: Mindfulness meditation in everyday life. New York: Hyperion Books. Lieberman, M. D. (2009). The brain’s braking system [and how to ‘use your words’ to tap into it]. NeuroLeadership Journal, 2, 9-14. Ocshner, K. N., Ray, R. D., Cooper, J. C., Robertson, S., Chopra, J. D., Gabrieli, J. D., & Gross, J. J. (2004). For better for worse: Neural systems supporting the cognitive down and up-regulation of negative emotion. Neuroimage 23, 2, 483-499.
About Laurie Ellington Laurie Ellington, MA, LPC, CPC, RCC is co-founder and Chief Executive Officer of Zero Point Leadership™. She believes that we can change the world by changing our thoughts and beliefs. As a NeuroLeadership Coach, Social Change Facilitator, and Inspirational Speaker, she works with people who want to take an unconventional approach to moving beyond the status quo in order to create remarkable change in their lives and organizations. Laurie combines research from neuroscience, modern physics, positive psychology, and systems thinking to help leaders, teams, and organizations utilize the power of self-awareness, presence, and insight to transform culture and mindfully improve human performance. She co-developed the Zero Point Results Model™, which is a comprehensive organizational and systems improvement framework that rests on a neuroscience and systems thinking platform.
On Friday, one day before the anniversary of the Newtown school shooting tragedy and on the same day of yet another tragic shooting at a school in Colorado, Congressman Tim Murphy introduced the Helping Families in Mental Health Crisis Act of 2013, a bill that would effectively rewrite how the Substance Abuse and Mental Health Services Administration (SAMHSA) operates and significantly narrow the focus of the types of mental health services and supports it helps promote through its grant programs. While the bill is at this point just a proposal, it is an important read for Network faithful as it sheds a light on the thinking of many individuals across the country about how to improve mental health services in America. Unfortunately, with the continued tragedies occurring at schools across the nation the tendency to equate guns and violence with mental illness leads to recommended solutions in this bill that are narrow in focus and could potentially set back the advances in the field of mental health 20 to 30 years.
What makes writing this Morning Zen piece difficult for me is that I have the utmost respect for Congressman Murphy. A child psychologist by training, co-author of two books ("The Angry Child: Regaining Control When Your Child Is Out of Control" and "Overcoming Passive-Aggression), it is obvious that Congressman Murphy cares deeply about improving mental health services. For that he is to be applauded. But what is in this proposed bill for the most part is either mystifying or antithetical to what the research tells us works best for young people with emotional challenges and their families. In fairness, at the end of this post I have included links to position statements on the proposed bill from national organizations and thought leaders both for and against the bill. As always, we pride ourselves on providing as many perspectives as possible so that our educated readers can make up their own minds and respond to their elected officials accordingly.
The response from mental health advocates and provider groups both for and against the bill was swift. As is the general approach of the Children's Mental Health Network we took the weekend to read and digest the 135-page bill before making our comments. The list is long so grab a cup of coffee for this one.
The proposed bill is complex in that mixed in with proposals that are administratively bureaucratic, relying on reference resources that in some cases are twenty years old and frankly dismissive of anything outside of the realm of narrowly defined evidence based practice, are some excellent proposals such as continuing funding for the Garrett Lee Smith and National Child Traumatic Stress initiatives.
However, overwhelmingly the recommended changes in the bill set the advances made in knowledge about what works for youth with mental health challenges and their families back a good twenty to thirty years.
Clouding the picture of how to interpret this proposed bill was the timing of its release – on the eve of the anniversary of the Newtown tragedy and on the day of yet another shooting at a school in Colorado, where emotions were already running high and the popular press was flooded with news stories about guns, violence and mental illness. Even though research shows that those with a mental illness are significantly more likely to be a victim of violence than a perpetrator of violence, discussions in Congress about what to do tend to fall too easily into the guns + violence = mental illness equation.
Okay, with all of this in mind as a backdrop for what is in the proposed bill, let’s take a walk through some of the highlights. The 135 page document is one I encourage you to read to get your own sense of its merits and drawbacks. In this post I will focus on some of the key areas that are important to highlight. Page numbers of the bill are cited so that you can read the full text in the copy of the proposed bill that you can download here.
Additional layers of bureaucracy added while diminishing the decision-making role of key SAMHSA personnel (Page 4) The position of Assistant Secretary for Mental Health and Substance Use Disorders would be created. This individual would directly supervise the Administrator of the Substance Abuse and Mental Health Services Administration. Reading through the responsibilities that this individual would have left me perplexed, as the duties described appear to already be in place under the responsibility of the Administrator.
National Mental Health Policy Laboratory (page 7) The proposed bill calls for the creation of a National Mental Health Policy Laboratory (NMHPL) headed by a Director. The purpose of this Director position would be to:
(A) Identify and implement policy changes and other trends likely to have the most significant impact on mental health services and monitor their impact in accordance with the principles outlined in National Advisory Mental Health Council’s 2006 report entitled ‘The Road Ahead: Research Partnerships To Transform Services’;
(B) Collect information from grantees under programs established or amended by the Helping Families in Mental Health Crisis Act of 2013 and under other mental health programs under this Act, including grantees that are federally qualified community behavioral health clinics certified under section 201 of the Helping Families in Mental Health Crisis Act of 2013 and States receiving funds under a block grant under part B of title XIX of this Act; and
(C) Evaluate and disseminate to such grantees evidence-based practices and services delivery models using the best available science shown to reduce program expenditures while enhancing the quality of care furnished to individuals by other such grantees."
The description of the NMHPL goes on to say that "In selecting evidence-based practices and services delivery models for evaluation and dissemination under paragraph (2)(C), the Director of the NMHPL
(A) Shall give preference to models that improve the coordination, quality, and efficiency of health care services furnished to individuals with serious mental illness; and
(B) May include clinical protocols and practices used in the Recovery After Initial Schizophrenia Episode (RAISE) project and the North American Prodrome Longitudinal Study (NAPLS) of the National Institute of Mental Health.
On page 10 the language continues with "In carrying out the duties under this section, the Director of the NMHPL shall consult with representatives of the National Institute of Mental Health on organization, hiring decisions, and operations, initially and on an ongoing basis; (B) other appropriate Federal agencies; and (C) clinical and analytical experts with expertise in medicine, psychiatric and clinical psychological care, and health care management.
The Children’s Mental Health Network is troubled that there is no mention of youth and family involvement in such a consulting pool, especially with the impressive track record achieved by SAMHSA in cultivating a family-driven, youth guided approach through its system of care grants and cooperative agreements over the past 20+ years.
Interagency Serious Mental Illness Coordinating Committee (page 14) Yet another bureaucratic layer is added to the decision-making process with the recommendation to establish an Interagency Serious Mental Illness Coordinating Committee to "assist the Assistant Secretary in carrying out the Assistant Secretary's duties.
The responsibilities of this Committee include:
(1) Develop and annually update a summary of advances in serious mental illness research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with serious mental illness;
(2) Monitor Federal activities with respect to serious mental illness;
(3) Make recommendations to the Assistant Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);
(4) Make recommendations to the Assistant Secretary regarding public participation in decisions relating to serious mental illness;
(5) Develop and annually update a strategic plan for the conduct of, and support for, serious mental illness research, including proposed budgetary requirements; and
(6) Submit to the Congress such strategic plan and any updates to such plan.
There is a long list of required members for this committee (page 15), including the Director of NIH, the Attorney General of the United States; the Director of the Centers for Disease Control and Prevention and more. Members of the Committee serve 4-year terms and would be required to meet a minimum of two times per year. In addition, the Committee “may establish subcommittees and convene workshops and conferences "to enable the subcommittees to carry out their duties."
And finally, with regard to administrative duties, on page 70 it is noted that the administration of block grants would be removed from the Director of the Center for Mental Health Services and shifted to the Assistant Secretary for Mental Health and Substance Use Disorders. Gonna be one busy Assistant Secretary if this proposal goes through!
I can't help but think that if this plan were to come to fruition there would be bureaucratic gridlock. Two new significant leadership positions assuming key duties of currently existing high ranking officials within SAMHSA and a large Committee with sub-committees to "assist the Assistant Secretary in carrying out the Assistant Secretary's duties" (Page 14). In my mind, this is a huge duplication of duties already ascribed to the SAMHSA Administrator, the Director of the Center for Mental Health Services and others within SAMHSA.
Let's move away from administrative duties to some of the new grant programs proposed, specifically the Assisted Outpatient Treatment Program. The proposed bill calls for up to 50 grants each year for a 4-year pilot program to focus on assisted outpatient treatment programs (Page 19). Each grant would be eligible for one million dollars per year for four years - $15,000,000 per year would be authorized totaling $60,000,000 over the four-year period.
Assisted outpatient treatment is a controversial topic, with some saying it is the best option for an adult with a mental illness who "lacks capacity to fully understand or lacks judgment to make informed decisions regarding his or her need for treatment, care, or supervision." Others, including the Children's Mental Health Network, see this as a potentially dangerous road to travel in that it could have wide-ranging impact on those who might be swept up unnecessarily. You can review both sides of the argument regarding Assisted Outpatient Treatment at the end of this post.
Number of seriously mentally ill who are imprisoned (page 63) Section 405 focuses on reports of the number of seriously mentally ill who are imprisoned. An important topic for sure, the intent is to "calculate the number and type of crimes committed by persons with serious mental illness each year, and detail strategies or ideas for preventing crimes by those individuals with serious mental illness from occurring… For purposes of this section, the Attorney General, in consultation with the Assistant Secretary of Mental Health and Substance Use Disorders shall determine an appropriate definition of ‘‘serious mental illness’’ based on the Health Care Reform for Americans with Severe Mental Illnesses: Report’’ of the National Advisory Mental Health Council, American Journal of Psychiatry 1993; 150:1447–1465. The link is provided though you will need to pay the journal for the download. We can only hope that this document, written 20 years ago, reflects the evolution of thinking about mental health challenges since then. Of greater concern is the proposed process for decision-making about defining "serious mental illness." Should this just be left to the Assistant Secretary and the Attorney General? This is much too vague for our liking.
Reducing the stigma of serious mental illness (page 79) It is hard to even comment on this section when the entire document is stigma-laden, focusing primarily on a narrow subset of those individuals with a diagnosis of serious mental illness when describing what needs to happen within a federal agency charged with looking at the full spectrum of behavioral health issues. However, Network faithful should read it and decide for themselves.
Title XI-SAMHSA Reauthorization and Reforms (page 99) Mentioned earlier is the fact that the Assistant Secretary for Mental Health and Substance Use Disorders would be in charge of SAMHSA. One of the more fascinating recommendations is that "At least 30 days before awarding a grant, cooperative agreement, or contract, the Administrator shall give written notice of the award to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate.’’ This suggests adding yet another layer of review, more opportunity for delay and added bureaucracy. Though not specified, one could assume that a member of either Committee could block a grant award.
In addition, it would be required that "Before awarding a grant, cooperative agreement, or contract, the Secretary shall provide a list of the members of the peer review group responsible for reviewing the award to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate." This is yet another opportunity for delay and bureaucratic red tape.
Transfer of all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory (page 102) This section discusses the transfer of "all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory. Why would one do this? In addition, in this section responsibilities currently assigned to the Administrator are reassigned to the Assistant Secretary. I am beginning to wonder what is left for the Administrator to do?
Establish a clearinghouse of evidence-based practices (page 106) In this section there is mention of the establishment of "a clearinghouse of evidence-based practices, which has first been reviewed and approved by a panel of psychiatrists and clinical psychologists, for mental health information to assure the widespread dissemination of such information to States, political subdivisions, educational agencies and institutions, treatment and prevention service providers, and the general public, including information concerning the practical application of research supported by the National Institute of Mental Health that is applicable to improving the delivery of services..."
Unfortunately there is no mention of consumers, families or youth involved in this review.
Limitations on Authority (page 133) The section on Limitations on Authority includes some questionable items. For example, in this section it is stated that in order for SAMHSA to host or sponsor a conference they "must give at least 90 days of prior notification to the Committee on Energy and Commerce and Committee on Appropriations of the House of Representatives and the Committee on Health, Education, Labor, and Pensions and Committee on Appropriations of the Senate." Again, this seems like yet another unnecessary layer of bureaucracy.
No financial assistance to any program without evidence-based practices (page 133) Continuing on page 133 is the directive that the Administrator of SAMHSA "shall not provide any financial assistance for any program relating to mental health or substance use diagnosis or treatment, unless such diagnosis and treatment relies on evidence-based practices."
If you have made it this far in this lengthy post you know that this leads back to the question "What is an evidence-based practice and who is involved in deciding that?" From reading the full text of the proposed bill the decision makers are definitely skewed toward the medical community with a strong focus on a narrow slice of the overall population of individuals needing mental health services.
Elimination of unauthorized SAMHSA programs without explicit statutory authorization (page 134) Saving one of the more controversial items for last (at least as based on the tenor of emails sent to the Network over the weekend) is the section on the elimination of unauthorized SAMHSA programs without explicit statutory authorization. The language is clear that no new programs are to be created that are not explicitly authorized or required by statute and that "by the end of fiscal year 2014, any program or project of the Substance Abuse and Mental Health Services Administration that is not explicitly authorized or required by statute shall be terminated."
The proposed bill goes on to say "The Assistant Secretary for Mental Health and Substance Use Disorders shall seek to enter into an arrangement with the Institute of Medicine under which the Institute (or, if the Institute declines to enter into such arrangement, another appropriate entity) agrees to submit a report to the Congress not later than July 31, 2014, identifying each program, project, or activity to be terminated under subsection (a).
So, there you have it. Quite a bit to chew on and I cut this post down significantly. Please take the time to read the proposed bill. Whether it gains traction in the House or not it is important to remember that this proposed bill reflects the thinking of many. If you are concerned about this, as we are, then you might want to consider an education campaign.
Next week we will share our collaborative efforts with Maryland-based mental health providers, adult and youth representatives with experience receiving mental health services, and family advocates and other agency representatives to put together a site visit for Senate and House Appropriations Committee staff to not only show them what a coordinated system of care approach looks like in the effective provision of services and supports for young adults with mental health challenges, but also to provide them the opportunity for one on one dialogue with youth and adults who utilize mental health services, families and the amazingly dedicated professionals who work side by side with them. We began organizing this effort for Senate Appropriations staff as a result of our inquiry into the Healthy Transitions Initiative in August of this year. Senate Appropriations Committee staff have agreed to come and we will be extending an invitation to House Appropriations Committee staff this week. I will give you full details in the Morning Zen post this coming Friday.
What is so important about our education campaign is that it is not focused on one grant or particular service. We are not bringing staffers to a visit to ask for money. We are bringing staffers to a visit to let them experience firsthand the importance of a comprehensive approach to meeting (in this case) the needs of young adults with mental health challenges. Sounds like a systems of care approach to me!
And finally, here is a sampling of different individual and organizational analyses and reactions to the proposed bill, both pro and con. Remember, an educated voice is a powerful voice.
December 14 will be the first anniversary of the Newtown school shootings that took the lives of 20 young children and 6 school staff. Adam Lanza also shot his mother, Nancy, and later shot himself. In the aftermath of those 28 deaths, intense conversations took place both publicly and privately about mental health, guns and prevention. We asked ourselves what went wrong and what needed to change so this wouldn’t happen again.
Twelve months later not much has changed.
Last December, many families whose children have mental health needs were optimistic that there would be a renewed focus and the will to take a hard look at the children’s mental health “system.” Those of us who use it, work in it or navigate it realized while there might not be a wholesale fix, even some patching up could make an impact. Many of us told our stories and shared our worries in an effort to keep this important discussion on the front burner. We were hopeful. Finally mental health, especially children’s mental health, was getting the attention it needed.
The early reports about Adam Lanza and his mother, Nancy, highlighted his bizarre behavior and isolation and their slow drift into accepting these things as the new normal. Those reports sounded a lot like the personal stories many families tell when they call my organization for help as well as the story of my own son. When he was younger, I watched him become wildly enraged at trivial slights and fearful of ordinary things. Once in a movie theater he ran screaming to the lobby because an adult character became out of control which mirrored the way he was feeling. We all hoped these stories would point out his dire needs and our own.
Instead, the conversation about mental health and children has focused on training teachers, creating a registry of people who have been hospitalized and of course, guns. There is new funding and education programs for teachers and other school employees to recognize the signs of “mental illness.” While it’s always a welcome idea to invest more money into children’s mental health, most parents will tell you that they notice something worrisome going on with their child long before the teacher does. But there’s no funding to teach parents the same skills and facts and no recognition that we can be valuable “first responders,” even though most parents are pretty expert about their children. Not much has changed.
While there is a deep divide in this country over gun control, there is also a growing awareness around the need for mental health screening and treatment for children and teens. For the first time, the top 5 out of 6 chronic health issues facing children are mental health problems rather than physical problems such as asthma.1 We know that 50% of all lifetime mental illnesses begin before the age of 14 and 75% before the age of 24. Many would say that makes them childhood illnesses.
Yet, we continue to talk almost exclusively about guns. Wherever you land on the gun debate, it won’t help the children and families who need treatment. Violence prevention is not mental health treatment.
Last month the state of Connecticut released a report on its investigation of the Newtown shootings and concluded that Adam Lanza “had significant mental health issues that affected his ability to live a normal life and to interact with others, even those to whom he should have been close.” The report included a detailed list of Adam Lanza’s activities from the video games he played to the black garbage bags he placed over his windows. It outlined Nancy Lanza’s mistaken attempts to create closeness, such as taking him to a shooting range. It left unanswered the questions, “Why?” and “How can we stop this from happening again?”
Many rushed to judge and blame Nancy Lanza. She should have tried harder or made different choices. She was seen as part of the problem at best and the creator of a monster at worst. Most parents of children with mental health needs make mistakes, learn to accept bizarre behavior and tolerate things they never thought they would, all the while trying to find effective help. Like Nancy Lanza, we are almost always blamed. We are told that we are the ones that failed, not that a mental health system in need of repair failed us. We have the highest divorce rate, are most likely to lose our jobs and have the highest out of pocket expenses. The impact on our families is brutal and still we are judged. Not much has changed.
When Nelba Marquez Green, whose 6 year old daughter, Ana, was killed by Adam Lanza was recently asked how she felt about Nancy Lanza she said, “"She's a victim herself. And it's time in America that we start looking at mental illness with compassion, and helping people who need it."
"This was a family that needed help, an individual that needed help and didn't get it. And what better can come of this, of this time in America, than if we can get help to people who really need it?"
The families of the children killed at Sandy Hook school have launched a national “Parent Together” campaign that seeks to roll out prevention programs and create a conversation which focuses on mental wellness, community connectedness and gun safety. They want to encourage all of us to put children first.
Maybe we still have that chance to change things within our grasp. If we do, let’s not lose it.
Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.