Monday, September 15, 2008

Me and “Rosie D”: Text of a Grand Rounds Presentation

The following is a close approximation of the text of my Grand Rounds presentation at Cornell on 9/16.  Feedback is more than welcome.  This is a one hour talk, so it is a bit longer than my usual post.  Read at your own risk.
Slide 1:  Thank you very much for that introduction, and for the opportunity to talk with you today. You are probably wondering,“Why is a general pediatrician talking to me about advocating for children’s mental health care? Shouldn’t this talk be from a psychiatrist, or a DBP specialist?” Of course, those of you who provide primary care for children know why I am giving this talk; over the past 30 years, our practices have included more and more  behavior and mental health issues. My frustration with the current state of things led to my involvement in a movement that may actually be able to help me to do my job, which is to care for the children and families of South Worcester County.
Slide 2:  Oh, yes, the disclosures. I have had the time to get involved in the movement through funding provided to me as a Physician Advocacy Fellow at Health Law Advocates through the Center on Medicine as a Profession at Columbia University. As part of that project, I am Chair of the Worcester Mental Health Network and a member of the Massachusetts Chapter of the AAP’s Mental Health Task Force. I also blog at and am a citizen of the United Stated (which means that making the system work is part of my job). I really do have a vested interest in this project, although the monetary reward is mostly through the Fellowship. 
Slide 3: So today, I want to take you on my journey, which began with a problem with my patients and ended with my understanding of the current state of the system that cares for children’s mental health in Massachusetts. Then I want to talk a bit about the process of changing systems, in so doing, I will describe a lawsuit, an election and a bill that our coalition  have used as vehicles for change. In this course of this description, I will try to highlight the role of the pediatrician in the process, and talk a bit about how one goes about finding a place in the process. Finally, I’ll close by discussing “lessons learned” about the “science” of advocacy. 

Slide 4: Before we begin this journey, however, I would like to give you a framework through which I have learned to think strategically about system change. They suggest that change happens when three streams converge: the problem stream (We should change this), the policy stream (We know how we want to change this) and the political stream (changing this will benefit enough of the right people to make it worthwhile). These streams represent the “activation energy” (if you will pardon a former Chemistry major) that is takes to upset the “steady state” equilibrium that tends to keep systems where they are. Keep this in mind as I talk about the last decade of children’s mental health policy in Massachusetts.

Slide 5:  For me, the problem stream begins in my practice. I work in Webster, a small town of 17,000 people located 20 miles SSW of Worcester. For the residents in the audience, small town practice is great. We are the only pediatricians for miles around, we teach residents and medical students, we have about 3500 patients and see 12,000 visits per year. Payor mix is about 25% Medicaid, and we have a number of innovative collaborations with various community agencies. (Oh, and we are hiring!- talk to me later). Several years ago, we began a registry for Children with Special Health Care Needs, and we realized that 20% of our patients had a DSM-IV diagnosis of mental illness. In fact, that was our major “special health care” need. We also realized that we were not doing a great job of caring for these kids- the nearest therapy was 30 minutes away, and they only had a child psychiatrist 2 days per week. Worcester City had some resources, but Webster people really don’t like to go to “the big city”, so that only helped a little.

Slide 6: This picture, by the way, is our office. And these are some of the actual cases from that office over the past year. A 4 year old with poor impulse control who is actively injuring animals- to whom can he go? A nine year old with ADHD and violent behavioral outbursts what is his diagnosis REALLY? A 17 year old in juvenile detention with depression and  anxiety- what does she need? How can we help? These are pretty representative of the common problems that we face daily in primary care; without a system, there is little we can do to help them. 
Slide 7:  I work with a bunch of “can do” people- that is us at one of our annual practice retreats, where we try to address these sorts of issues on a regular basis. Over the years, we had responded to our inability to treat mental health problem in a variety of ways. We  developed protocols for common behavioral health issues (ADHD and adolescent depression). We developed partnerships with local psychiatrists (the 2 day/week psychiatrist from Southbridge gave me her beeper number so that we could talk, and I took back some of the “routine” drug management cases to free up her schedule.) We had agency lists, and got a grant to fund a care coordinator position to help families access the few resources that we had in South Worcester County. My partners and I did CME and Collaborative Office Rounds to build up our skills in managing behavioral health issues. One does what one can. But we always realized that we were working on the edge-chipping away on the fringes of a much bigger problem. 
Slide 8:  As we looked out into the wider community, there was a lot of activity going on in the area of children’s mental health. Nationally, the AAP had convened a Mental Health Task Force, and our State chapter had followed suit. I joined at the State level, to stay in the loop. We heard of the opening of an advocacy agency called the Parent Professional Advocacy League in Worcester, and invited them over to meet our parent advisory group and to help them in their advocacy. And, fortuitously, I was invited to sit on the Worcester Mental Health  Network by the head of Health Law Advocates, a public interest law firm specializing in access to health care in Massachusetts. I learned that this wasn’t just a problem in my practice-it is a state and national problem.
Slide 9:  I’m a small town doctor- I’ll stick to the State problem. 1.46 million children in the Commonwealth of Massachusetts, and the Department of Mental Health estimated that 10% of them need mental health services (guess our practice is above average). Only 30% of them are currently getting services (that seems consistent with our experience.) Multiple blue ribbon commission reports over the past 20 years in education, foster care, child protection, corrections had all identified the problem; no one had a solution that was politically viable.
Slide 10:  The problems, at a system level, seemed to fall into three areas. First was fragmentation of care. This afflicts health care in general, and is worse in the mental health arena. We have, in America, separate but equal systems of public and private health care and within those systems, mental health care was often “carved out” to behavioral health management companies that are even less responsive to the needs of families. This separation of the finances of mental and physical health care is reflected in the lack of  communication between the providers in those areas. In Massachusetts, we had tried to address this through a Mental Health Parity bill- unfortunately, the Parity was only for  “biologically based diagnoses”- nine  of them which further divided mental health into covered  and uncovered areas. Finally, for those with “serious emotional disturbances” (a federal term not part of my clinical lexicon), there were up to six separate State agencies that were supposed to address their needs, each of which attended to only a part of the child in front of them.   There was no incentive for these fragments to come together to make things better.
Slide 11:  When one spoke with health care (and mental health care) providers around the State, this fragmentation had led to a real erosion of quality. The carve-outs all had limited provider panels, often based on geography, that did not acknowledge the difference between adult and child therapy. There was a major lack of child psychiatrists, resulting in long delays. For many families, Emergency Mental Health Services were seen as the first resort in a crisis- calling their therapist was unlikely to elicit a response as providers had no time to make phone calls. This chaotic non-system kept so many families out of the loop that the Boston Bar Association prepared a 148 page manual to help them understand the process- one  clearly needed a college degree to make sense of it all. Finally, as a last resort, the State created the “Child in Need of Services” or CHINS process, where a parent could ask the State to intervene to get their child the services that they needed. Almost a Zen concept- to get control over the process, one needed to give up control. And there was no plan to make it easier.
Slide 12:  We had model programs to address most of these concerns: Children’s and Cambridge Hospitals had piloted screening programs in Primary Care settings that showed that the PEDS and the PSC could be used successfully as part of a comprehensive solution. At my shop, Ron Steingard and Dan Connor established Targeted Child Psychiatry Services, initially a co-location model that grew to include telephone consultation and rapid assessments in collaboration with primary care doctors, leveraging the short supply of child  psychiatrists through partnership. For the “seriously emotionally disturbed” children clogging our EMH services, there were Wraparound programs in Communities of Care in Worcester and Coordinated Family Focused Care in Lowell. We had lots of ideas on how to fix the system; we lacked a method to scale them statewide.
Slide 13:  The first hint that change was coming really came from a public-private partnership, and involved the “scaling up” of the TCPS program into MCPAP. The disseminated version of this program is a consult liaison model: the PCP is the point of contact, the psychiatrist promises a response by phone within 30 minutes and offers a single psychiatric consultation  within a couple of weeks, as well as care coordination to assure follow-up. The version that was rolled out statewide had more emphasis on supporting primary care doctors as prescribers and ongoing care managers than the original program, which had included up to 4 visits with the psychiatrist for stabilization. The nicest thing about this program was that, although the State funded the program, it was the open to all children regardless of insurance (although the program was housed in the Massachusetts Behavioral Health Partnership, one of the Medicaid behavioral Health carve-outs). The program is wildly successful- pediatricians and patients are very happy, and it survived it’s first challenge in the State budget this year, always a sign of a successful program.
Slide 14:  With the successful scaling up of MCPAP, you might say “dayenu”- “it is enough”. But the problem with the response at that point was the “Rube Goldberg”-like machine that we had created, similar to the potato peeler shown here. We addressed fragmentation by creating pockets of collaboration, we addressed quality by creating pockets of quality and family engagement, and we had multiple small models of care around the state creating pockets of sustainability. This all is change, but it is slow change, and, as the parents in my practice like to remind me, children can’t wait.
Slide 15:  The problem stream is a waterfall, the policy stream is a small cataract and the political stream is still dammed up. Something has to give, before this metaphor implodes.

Slide 16:  Let’s take a look at the political stream. Our politics is organized into three branches, in order to maintain stability. To change it radically, you need to create a politics that works at all three levels. That is, more or less, what happened in Massachusetts. A lawsuit (“Rose D” vs variously Swift, Romney and Patrick), a major reorganization of the executive branch in response ot an election and sweeping new legislation have broken the dam and created the somewhat chaotic environment for change that is Children’s Mental Health care in Massachusetts right now. Let me tell you about it.
Slide 17: The lawsuit Rosie D v. Swift was filed in Springfield in 2001 by the Center for Public Representation and a private firm on behalf of the parents or guardians of eight children with serious emotional, behavioral or psychiatric conditions (these slides are from lawyers- many words, few graphics). They sought to compel provision of intensive mental health treatments to Medicaid-eligible children in their homes and communities, and they based the suit on the EPSDT section of the Federal Medicaid act. What impressed me as I read through their cases was that these kids had gotten a lot of services- but they were fragmented, of variable quality and always tried to get the child to fit the program, rather than trying to design a program to fit the child.
Slide 18: The good news was that the children won (took a while, though- note the change in Governor) In early 2006 (shortly after MCPAP was rolled out state-wide), the court found Massachusetts in violation of the EPSDT provisions of the Federal Medicaid Act and ordered them to fix it. 6 months later, the plaintiffs and the Commonwealth submitted separate remedial plans. The remedial plans before the Judge contained many similar or overlapping concepts and approaches to services, but also contained very substantive differences. They  were  probably most similar in regards to use of the wrap-around model and the agreed upon  services.
Slide 19: In early 2007, the Court order was finalized. The Court accepted most of the State’s proposal, with a few caveats as noted. The key changes were that the Court insisted on active involvement in assuring the remedy, through the appointment of a Court monitor and a really aggressive timeline. On July 1, 2007, the final judgment went into effect.
Slide 20: This pathway to accessing services closely mirrors elements of the Federal EPSDT law (Early, Periodic Screening, Diagnosis and Treatment.) Screening came first, and is the part of 
the system now in place. As of July 1, 2008, mental health screening using an approved instrument is part of every EPSDT encounter in the Commonwealth. By Nov 1, all of our Mental Health providers are supposed to be using a family-centered, asset-based evaluation system (the CANS) to determine diagnosis, level of need and to drive the level of services provided in the system. By next July, we are beginning to assess the service teams that will faciliate care coordination and the team planning process which ultimately determine which home-based services are needed. This last bit depends on Federal approval of the Massachusetts Medicaid waiver, a process that is currently taking way too long in Washington.
Slide 21: As you heard earlier, I had identified this as an important area of advocacy for my patients in 2004 or 2005, so I was looking for a way to make a difference when the lawsuit was won in 2006. I had joined a couple of task forces, and, when the Center for Public Representation was looking for a primary care doctor to take about what a good screening system would look like, I participated in the discussions of the Rosie D Advisory group. I actually submitted testimony to the Judge on screening, and I testified at the State House on the need for expanded mental health services for children, drawing on some of the stories from my practice to inform the policy discussion.
Slide 22: Rosie D. made the political stream into a river. Change was going to happen. Dayenu? Was it enough? Did we have a happy ending? Do you get to leave Grand Rounds with a feeling of satisfaction? Not yet.  The settlement didn’t address families without MassHEalth, doesn’t address children’s mental health until they are “severely emotionally disturbed”, doesn’t integrate change into the system and doesn’t ensure a process of continuing input into the system as the system evolves. But it is a start.

Slide 23: Rosie D brought the policies needed for change into the fore, creating a cataract of change in the Masshealth system. It remained to stoke the other branches of the political stream to finish the task.

Slide 24: In November of 2006, Deval Patrick was elected Governor of Massachusetts, just as the Rosie D order was being finalized. His administration was interested in creating change, which fit the directives coming out of the Court. In order to implement the Rosie D. decision, EOHHS created the Child Behavioral Health Initiative, with a mandate to coordinate all activity within the State government relevant to the remedy of the case. Within the Executive branch, there was now a change agent, working within the State machinery to bring this policy to life. The rest of the Executive branch was reorganized, with a particular emphasis on children. In addition, the Office of Child Advocate was created to give children a voice in the Administration.
Slide 25: At this point, I have to introduce the “small group of informed citizen’s” that Margaret Meade said was the only thing that ever changed the world. David DiMaso from Children’s Hospital, Steven Rosenfeld from Health Law Advocates, Lisa Lambert from the Parent Advocacy League, MaryLou Sudders from MSPCC and John McDonough from Health Care for all looked at the coming change and saw the golden opportunity to kick things up a notch. They thought that, through careful policy analysis informed by Science, Law, Families, Service Providers and Politics, we could engrave in law some of the policy ideas that we have recommended in the various blue ribbon reports cited earlier. In particular, they wanted to bring to the private sector of insurance some of the incentives to collaborate would be present in the new Medicaid funded system. And the Children’s Mental Health Campaign, not to be confused with the Children’s Behavioral Health Initiative, was born.
Slide 26:  The group recruited members, reviewed the work of the past 10 years and issued a report with 27 specific recommendations (integrated mostly from past reports.) With 35 co-sponsors, from many sectors of Massachusetts society, it was a hard report to ignore. AND they issued on the Tuesday after Thanksgiving, 20 days after Governor Patrick was elected. 
Slide 27:  The report was quickly codified into An Act Relative to Children’s Mental Health, an Omnibus bill that would address many of the areas and recommendations raised in the report. It is really hard to summarize what was in this legislative behemoth: Screenings, “Stuck Kids”, improved insurance coverage, collateral services, school access to psychiatric consultation and improved coordination were all on the table. I was told at the time that it would be very difficult to get part of the bill through; getting the whole thing through would take years.
Slide 28:  Absent a political miracle. A political miracle is when the problem stream, the policy stream and the political stream all come together. Like this. (This slide, in real life, involved a growing wave and the theme from Hawaii-50)

Slide 29:  It was an interesting time to get my Physician Advocacy Fellowship in July 2007, just in time to ride the wave. I became chair of the Worcester Mental Health Network, and after a bit of negotiation, we agreed that our main tasks over the next few years were to ensure that plans include “outside of Boston” families and practices, provide feedback for CBHI to make the system workable and work to educate legislature on need for “Act Relevant to Children’s Mental Health”. I am happy to report that it has been one really interesting and very wild ride.
Slide 30:  Let’s start with the basics: The Children’s Behavioral Health Initiative is underway, starting with screening. MassHealth provided trainings for providers, approved tools for them to use, and provided additional reimbursement for them to receive when they did it. The list of “approved” instruments was pretty good,and they weren’t hard to use. As one would predict, many of us reported identifying children with mental Illness for whom treatment was sub-optimal; there are not yet adequate treatment options.. The tools presently available are good, but we are not currently allowed to screen parents of young children for maternal depression, which many of us feel would be more valuable than the current strategy. In many practices, this screening is done on all of the children in the practice, not just the MassHealth kids, which has led to billing issues with the private insurers. But, despite the problems, it is happening, without too much of a hitch.
Slide 31:  In our office, we elected to screen kids 5 years of age and younger with the PEDS (except for a single MCHAT at 18 months per AAP recc), and older kids with the PSC and Y-PSC. Our teens are also screened with the CRAFFT for substance abuse, as part of a grant driven project of which we are a part. We are collecting data on teenagers was part of the other grant, and I am happy to report that, among our first 498 screenings, 10% had a positive PSC and 4% had a positive CRAFFT. Of interest to us is that we are finding little that we don’t already know- most of the teens with troubles refuse or can’t get an appointment and many of the kids that we know have problems score negative on the self-report questionnaires.
Slide 32:  Now we are gearing up for the next phase of the CBHI, by actively engaging the players and asserting our need to be part of the implementation loop. Last fall, we got an AAP sponsored mentoring and technical assistance visit from Larry Wissow, a triple boarded Professor from Hopkins who helped us to frame some of the questions around collaboration in the initiative. We hosted meetings with the plaintiffs attorneys and the CBHI folks from Boston, to discuss some of the problems around implementation. I started my blog, Rosie D and Me, to document and underscore some of the issues with the implementation of the settlement. And, in March, when the CBHI issued a Request for Information to all interested parties, we pulled together a response from Central Massachusetts, that helped to assue that we wouldn’t be forgotten as implementation moves forward.
Slide 33: Meanwhile, on the Legislative front, there was also a lot to do. The legislative process is complex: HR 1872 was introduced in January 2007 and then, before 31 July 2008, it must be approved by the Joint Committee on Mental Health and Substance Abuse, the Committee on Health Care Financing, the Ways and Means Committees of both houses, both Houses of the Massachusetts General Court, an then the Governor has to sign it! The flow chart makes this process look neat- it is anything but. 
Slide 34:  In October 2007, there was a hearing at the Joint Committee on Mental Health and Substance Abuse. They liked it, they passed it and they merged it with 5 other bills, stretching the beautiful language in odd ways to meet many needs. From there, it went in February 2008 to the Committee on Health Care Financing who also passed it (without a hearing) and sent it one to Senate Ways and Means. The expansion of Mental Health Parity was split out at this point, and was introduced as a separate bill.
Slide 35:  By April, nothing was happening, despite lots of pushing in Boston. So, what did we do in Worcester? We pushed more. We organized events throughout the county, met with legislators and gained co-sponsors and wrote letters; all of which kept the bill in the spotlight throughout the ferocious budget battle that was now in full swing.
Slide 36:  We got feedback: it was still in Senate Ways and Means, there was no opposition and it should pass after the budget is done. In July, it passed, short one key provision: Collaterals (payment for providers to work on a case without the patient in the room). I will be happy to tell that story over a beer at the train station, but it passed with all of the other  provisions intact. And, despite a few more procedural bumps, it was passed unamimously and signed by the governor in August 2008.
Slide 37:  What do we do now? First, we should celebrate: It is really hard to get this much done in two years. We are having a party at the State House next week- y’all are invited. Second, we still need to implement the “Rosie D.” settlement: the hard part is still to come. Third, we need to implement Chapter 321: Omnibus bills are the most complex to make happen, and this one has a lot of little bits that could fall by the wayside. Finally, we need to go back to the legislature to change the reimbursement system to cover “collaterals”: It turns out that it won’t cost too much, and collaboration is the name of the game. Oh, and once we have build the new children’s mental health system, we have to get our practice to fit into it.
Slide 38:  How has any of this filtered back to our practice? Well, screening is now routine. We’ve facilitated the location of a branch of one of our local behavioral health providers in our building (business is booming). The Communities of Care folk have opened a branch office in town, and help some of our families coordinate services. And it is getting easier to get home based services: Primary care doctors can refer for home-based team assessments without emergency mental health screening.
Slide 39:  So, what have I learned? First, that focused advocacy can health you take better care of your patients. In the course of do this work, it is important to think carefully about partnerships: Who can you work with to move your agenda along? It is also important to think strategically: What are the missing pieces to bring the plan together? In the end, it is important to think longitudinally: What are the steps going forward, and how far can I ride this wave? Oh, and one last bit of advice: when the wave comes, ride it.Thank you for your attention.
Slide 40:  Credits.

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