One Last Post on Partnership: Then On to Budapest

I came back from the hills to a bunch of work, much of which involved rehearsing for our upcoming performance in Budapest with the Robert Page Festival Singers.  What does Hayden have to do with Children's Mental Health?  Not much, other than to underline my desire to be part of too many things.  Still, I did have at least one thing I wanted to share with you all before departing for foreign realms (and I may have more to say once I am over there-  we will see what the Internet access is like in Budapest).  

Earlier in the month, I was lucky to attend a meeting in Worcester on "Creating Integrated Levels of Care", in which we were invited to join with the Partnership to create working models of programs to do what the courts and the families want us to do:  create a system of care that makes it easier for them to address the fluctuating course of mental illness throughout the life cycle.  It was sponsored by the Massachusetts Behavioral Health Partnership, which is a true gem in our struggle to build systems of care.    The bottom line was that there is progress, folks, but the road is hard.

The meeting was packed:  there were folks from community-based agencies working at a variety of different levels, including adult and child providers.  We first heard from “Motivating Youth Recovery” program, a new program that is located in Worcester and provides inpatient detox services to “dual-diagnosed” adolescents. The program started a couple of years ago, and is doing well, bringing in kids from across the state.  A few interesting points:  they are seeing more girls with heroin problems and more boys with marijuana problems,  and we all marveled that crystal meth has not yet hit our communities in a big way.  The main point is that the service is rare, and that we need to find a model that allows more programs like this around the state.

The meat of the meeting focused on improving access to care across cultures: are there barriers to care that are different from families from different cultures and backgrounds.  They looked at the data provided by the various deliverers of care, obtained hrough the Treatment  Outcomes Package (TOP ) form, an admittedly difficult instrument that was not always completely completed (can I say that?) by the patients.  The data is subjective;  the diagnoses are subjective and is often driven by the credentials of the therapist (if I can treat attachment disorder, then there must be a lot of it out there).  Still, it seemed that Latinos, African-Americans and Anglos differed in the types of problems for which they presented (Latinos tended to be suicidal more frequently than the other groups seeking care and seemed to wind up in in-patient settings more often).  To be clear, we also didn't know if there was a difference in the rate of actual suicide in these populations.  Still, this has a clear inpact on treatment cost and efficacy, and implies that, among Latinos, there are some factors that impair their access to care.

We talked about some of the possible reasons for this:  the notion that for some, a vision we might perceive as evidence of psychosis may be seem only as a visitation from an angel or a devil, the idea that seeking mental health services might give you mental health problems, that in some cultures, family and spiritual leaders may be considered a more important resource than a physician or psychologist.  Language and culture of the therapist also play a part; but several agencies reported that, even with bicultural and bilingual staff, the barriers remained.  We clearly need to need more about information about the nature of this seeming disparity.

I was, of course, disappointed with the lack of data on children and adolescents  The discussion, however, led to some ideas for improvement.

• Partnering with religious organizations: Forums on mental health.
• Creating a workgroup to create a vision for a system of care. 
• Building recovery principles into programs.
• Using more peer counselors to breach cultural barriers.
• Partnering with local academics to create an interest group.
  

I of course, volunteered to be on the committee.  It is great to see that some folks are able to use data to drive their work forward.

That's all for now.  Off to Budapest.

Mental Health Parity in Massachusetts

This is one of the things that I needed to catch up on.  House Resolution 4423 on Mental Health Parity is before the Massachusetts House of Representative this week for consideration.  The Boston Globe thought it was a good idea and so do I.   The Children's Mental Health Health Initiative suggests that we should all let our legislators know how we feel about this.  I like this idea as well.

Rose D: One Year Into the Settlement.

It was good to get away.    The mountains were wonderful, but I need to get back to the world now, and to catch up on a few things.

For the folks who like to wade through documents, take a look at the recently filed progress report filed by the Child Behavioral Health Initiative here. There has been a lot of activity over the past year, mostly around the issues of implementing screening programs.  Faithful readers have been hearing a lot about that now-  we screen children for mental health problems in Pediatric practices, and we continue to identify families that need mental health services.  As one reads through the first 17 pages or so, one marvels at the rapidity with which the system has been rolled out.  As a long time primary care provider in Massachusetts, I have to applaud the CBHI staff for all of their work;  they have been working hard to get us to identify the children at the root of this lawsuit, and we have, I think, mostly responded favorably.

How to handle the children we find, however, is still a work in progress.  Key parts of the CANS have been adopted as a means of implementing the program, and trainings have begun around the state, but the details of how it will all fit together are still under discussion.

Implementation is summarized in paragraph 38;  in fact, large chunks of the report are text from the settlement followed by "See response to paragraph 38 below."  Paragraph 38 says, in essence, that the CBHI has created a complex and inclusive management structure, with more than 80 people from within and outside of state government, serving as the core people on this process.  They have solicited input in all possible ways and is waiting on the word from Washington before implementation can began.  Once that happens, the state has all of the pieces standing by, waiting to implement.  And at that point, we will know what this is going to cost.

So we wait.  One hopes that CMS responds soon;  kids are waiting for this moment to arrive.  Kind of reminds me of waiting in Casablanca for the plane to Lisbon.  Here's looking at you, kid.

Solving Rosie D is complex: A Delay in the CSAs

Got this in my inbox:

ANNOUNCEMENT
POSTPONEMENT OF THE REQUEST FOR RESPONSES (RFR) FOR COMMUNITY SERVICE AGENCIES (CSAs)

TO: Interested Parties
RE: Postponement of Announced Community Service Agency RFR Release Date

This is to inform you that the Massachusetts Behavioral Health Partnership, in partnership with the four MassHealth managed care organizations-Boston Medical Center HealthNet Plan, Fallon Community Health Plan*, Neighborhood Health Plan*, and Network Health- are postponing the June 2008 release date of the Community Service Agency Request for Responses. This is a temporary action.
The decision to postpone the CSA Request for Responses has been made to allow potential bidders to review completed specifications for ALL remedy services (currently under development) to inform their decision whether or not to bid to become a CSA. It has also been made to align the selection process more closely with the pending decision from the Centers for Medicare and Medicaid Services (CMS) for the approval of certain remedy services. The CMS decision is not expected until late fall 2008/early 2009 and could affect the Remedy system design.
In early fall, MBHP expects to issue additional information about the schedule for the RFR release. We expect to release the RFR between October 2008 through early 2009.
The decision to postpone the CSA Request for Responses release date now offers the opportunity for increased communication and collaboration between MassHealth, EOHHS and stakeholders on overall system design.

I can't say as I am surprised:  this is the most complicated part of the remedy, and I am certain that CBHI folks want to be sure that they get it right.  But it does put a crimp in the optimistic timetable set by the court.  

Stay tuned.  I'm going back on vacation.  See you next week.

Vacation

In case you've been wondering,  I'm off in the Berkshires for most of this week, hiking and communing with the mountain laurel (see above).  I can get internet access, but I will try to avoid it until next week.  

Getting the word out: Letters and op-eds and stories, oh my!

Walter Harrison is a quiet pediatrician, unlike a blogger of my acquaintance, who has been a powerful voice of for children in the Commonwealth over the past 20 years.  He is way out in front  of this mental health stuff;  when he talks, people really ought to listen.  His letter to the editor of the Salem Daily News on SB 2518 is worth reading:

"Families, mental health providers, advocates and a majority of legislators are in agreement that the current system of care for mentally ill children must be reformed. State legislation (SB 2518, An Act Relative To Children's Mental Health) would improve the children's mental health system by encouraging early identification of mental illness, providing educational settings with mental health consultative services to help students, improving insurance protections for families of mentally ill children and breaking down bureaucratic silos that hinder the ability of children to access care."

Again, nice work Walter.

Biederman, Pharma and Bipolar Disorder

This was a little scary:

" A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators."

New York Times, June 8, 2008

Why does this matter?  Because, in the 1990s, Dr. Biederman was one of the leading voices of those who argued that many children who had been diagnosed with ADHD actually had bipolar disorder, a disease that had previously been considered rare in prepubertal children.  Changing the diagnostic paradigm changes the medications recommended;  Dr. Biederman's reanalysis led many psychiatrists to recommend changing from stimulant medications to SSRIs, mood stabilizers and antipsychotic medications.  This change resulted in huge profits for the makers of these medications;  it appears that the pharmaceutical companies were not shy about sharing a little of the wealth.

In fairness to Dr. Biederman, his views were pretty clear before he started receiving this personal windfall, and I doubt that the payoff was a simple tit-for-tat.  By accepting the money and not disclosing this to Harvard or the NIH, however, he has reduced of his credibility as a researcher, and helped to convince the public that we are all in thrall to drug companies.  This is small potatoes to big Pharma, a rounding error.  Yet it made us sit up and take notice on the front page of the Sunday New York Times, making it all a little harder to explain science to the public.

Are there really lots of kids with bipolar disorder?  I am not sure.  I am sure, however that I am a bit less likely to take Dr. Biederman's word for it.

PS.  Nice little article about the distinguishing of the two disorders here.

Rosie D in Practice: Report from the Field

Our UMass annual faculty retreat was this weekend, and the assembled 31 primary care pediatricians heard a wonderful talks by our MCPAP about screening for serious emotional disturbance, and treatment of depression.  In the course of the discussion,  I was struck by some of the comments about the implementation of the Child Behavioral Health Initiative.  Folks are, in general, doing the screening, identifying kids with problems and still having difficulty in referring kids for services.  Specifically:

• The screens, particularly the PEDS and the PSC, have a lot of "noise"- they identify concerns that are not actually associated with mental illness.
  
• Parents are really tired of filling out the PEDS on multiple occasions.
• One office tried to use the ASQ, and found that it took too long.
• A few offices have run into billing issues, where patients with private insurance get bills for the screening code, saying that they won't pay for it.  Nurse practitioners also have real problems with this.
• Usual resources are getting more swamped than before.

None of these are a surprise.  As I've written before in this blog, screening is in place with only a few glitches.  The CANS, the CSAs, the wraparound services-  this will be where the rubber meets the road.

Some Thoughts on Spiraling Downhill: What are the system implications?

At the Mental Health forum in Webster last month, two families shared their stories, and told of how it felt to try to access the system as a teen, or the mother of a child, with mental illness.  I invited them both to blog their experience:  one, a wonderful high school senior named Bri did so earlier in the week.  You all have probably read it by now;  if not, do so before reading this.  As I read it, I wondered how the reforms for which we are advocating through Rosie D and SB 2518 might affect the outcome.  I am curious about what you all think.

What struck me most was the degree of stigma, that had attached itself to this young lady as she entered her freshman year.  Despite her early success, she "consider(ed) herself a failure";  it didn't occur to her that her sadness, her changes in eating patterns and her frustration could be part of an illness.  It was bad- she was "crazy"-"pushing [her]self to be all that [she] could be" in the face of symptoms that were unappreciated before her entry into high school.  Brianna, her family, her pediatrician didn't know there was a problem until late in the course of the illness.

Under the Rosie D. settlement and with the support SB 2518,  she would have been screened annually during middle school-  we might have been able to detect the early signs of her anxiety and depression before it rose to the level of an eating disorder, and helped her sooner.

The second thing that I noticed was that her pediatrician focused on the symptom of eating, but was not able to build  the team of mental health, nutritional support and medical services that most of us agree is needed to manage an adolescent with an eating disorder.  Why didn't he or she put together a team?  Lots of barriers:  patient confidentiality, parent confidentiality, professional traditions, off-site locations, lack of time.  It is hard to convene the teams that we need to manage these problems.

Under the Rosie D. settlement, there would have to be a team assembled to help Brianna.  Under SB 2518, it would be easier, as private insurers would have to pay for the collaboration time.  Either would be better than what we have now.

The third thing that I saw in her narrative was a school that wasn't able to "deal with these types of problems and were unsure how to help [her]".  Teaching children with mental illness is a real challenge, and many schools do not have the expertise needed to help children and families with this stuff.

SB 2518 has language expanding the scope of the Massachusetts Child Advocacy Project, allowing schools to begin to develop the expertise that they need to become full members of the treatment team.

Finally, I was impressed that, in the end, without a team and a treatment plan, the case finally ended up in courts, where the young lady and her mother were finally able to turn their lives around.  

Rosie D and SB 2518 will make it easier to keep youths like Brianna out of the courts, through intensive outpatient treatment and close monitoring and follow-up.

Brianna's story shows us that, ultimately, mental illness is a struggle for the patient and her family, and that families need help in that struggle.  No matter what system we develop in the current reform environment, the systems role has to be to support the family in their struggle. Brianna showed tremendous courage in allowing us to share in her story;  we owe her similar courage in hearing the needs that her story highlights and addressing the system issues that can fix it.   Like many of my own patients of whom I have blogged,  for Brianna and her family, it shouldn't be so hard.

Parent's and Families Speak Out

I'm at my medical school reunion, so today I want to refer you to the PAL website for this outstanding bit of qualitative research:

--

What's New

“Medications and Choices: The Perspective of Families and Youth” is a ground breaking, family-driven study of the decision making process families go through when they choose to use psychotropic medication to treat their child’s mental health needs. Survey data from 274 parents and more than 80 youth document many common experiences such as a search for reliable information, trials of alternative treatments and concerns about financial costs.

Over the past several years, there has been a great deal of heated discussion about the rising use of psychiatric medications to treat children and adolescents. Media coverage has produced mixed reactions in many parents, who have felt their experiences were not accurately portrayed. Although each family’s experience is unique, many common elements and key values emerged in this study. Most strikingly, parents feel caught between their own experience of the effectiveness of medication and their concerns that medications may be stigmatizing or risky.

To read the full report, click here

Also, I hope that you all read Brianna's witness, part of which was shared at our Forum in Webster.

Spiraling Downhill: My Story

The word depression causes so many people to think unstable, suicidal, crazy, insane. It did to me especially when I was first diagnosed with depression and anxiety at the beginning of my freshman year of high school. I felt like something was so wrong with me. I was crazy. If people found out they would think I was a loser, weird and above all not normal.

As a child I was always, very particular about almost everything. In sports, school and in life I pushed myself to try to be perfect and when I was unsuccessful I would continuous cry, doubt myself and consider myself a failure. I believed that I simply was pushing myself to be all that I could be. In a way, I was but I was also driving myself crazy because the perfection I long for was impossible to accomplish.

Freshman year was a difficult year. I knew no one at the school. I had difficulty making friends and finding someone I fit in with. About half way through the year, I developed bulimia. A lot of my friends noticed that was bulimic but no one ever confronted me or told anyone. My bulimia then turned into anorexia. I refused to eat and often told people that I had eaten a big meal before hand and just wasn't hungry. After awhile my mother realized what was happening to me and with my primary care doctor decided I should see a nutritionist. My school never knew about my condition until my mother told them in hopes that they could provide some type of support system for me. They simply explained that they weren't able to deal with "these" type of problems and were unsure of how to help me.

The summer leading into my sophomore year is where I decided to turn towards alcohol and drugs. Of course many of my friends were also experimenting with this, I took it to a whole new level. At parties I would drink until I blacked out and my friends would often have to explain to me what happened in the morning. I experimented with marijuana but I was mainly interested in alcohol. It seemed that whenever I started to drink I just didn't stop until I pasted out. During the times that I blacked out I would do things without any conscious of doing them and I was frequently taken advantage of at these times. My friends all thought that I was coherent and knew what I was doing. At the beginning of my junior year, I attempted to commit suicide using alcohol and pills. I spent only a week in a psychiatric ward where I was told that I was an alcoholic.

When I returned to school, they were skeptical about allowing me to attend there. They kept a close eye on me and often reminded my mother that they were not "psychiatrists" and that they were unable to deal with my condition. On a particularly difficult day at school, I felt that I had no one to talk to. I felt nobody would understand what I was going through and that no one would listen to me. I decided to leave school and go home without telling anyone. I found out that when I had left, the school called the police. When I returned to school, they explained that they would be asking me to leave because they felt that I was a liability to the school and they were unable to provide the environment and the support I needed.
My drinking slowed but I still attended parties and occasionally drank until I passed out. Later in my junior year I was involved in several crimes and was arrested. The day I had to stand before the judge in handcuffs and shackles was a day of awakening. The judge told me that I was no longer a child and that I would be tried as an adult. I looked over and saw my mom crying and I realized that I couldn't put her through this. I realized that I was throwing my life away and the only way I could turn it around was if I helped myself and pulled myself up. My mom and I have been a great team. She is great at understanding what I am going through and she is an excellent support system. I recently graduated high school and am planning on attending college.

I was extremely fortunate to have my mother in my life. She was more understanding than I could ever have expected. I know plenty of kids who have experienced similar things to what I have and some are not fortunate to get the help they need. Many do not have the support systems that they require and often never receive the help and guidance that they need. School was one of the most difficult places for me to be because nobody understood what I was going through there. I hope that support systems can be placed in schools so kids can get the help they need so that they can grow and develop in life. We need to help strengthen our youth instead of sweeping these issues under a carpet. We need to learn to face and deal with our problems. I believe educating children about mental health issues can only help those suffering from them. All of us have problems just some of us hide them better; but we all need help.

Contact Your Representative and Senator to Preserve MCPAP Funding Increase

From Health Care for All's website:

As you know, the State Senate's FY 2009 budget contained $250,000 in new funds to begin implementation of the Massachusetts Child Psychiatric Project (MCPAP) in schools. 

These mental health consultative services will allow schools to better address the mental health needs of their students.  Expansion of MCPAP to schools is an important part of An Act Relative To Children's Mental Health.  
However, because this funding was not included in the House budget, it is important that all Representatives and Senators hear from us to make sure that it is included in the final version of the State FY 09 Budget. 
With the Senate budget finalized, deliberations move on to the Conference Committee. The Conference Committee is made up of three Representatives and three Senators (4 Democrats and 2 Republicans) who are responsible for coming up with a compromise budget based on the House and Senate budgets. Once completed, this budget will be sent to Governor Patrick. This year's Conference Committee is made up of senators Panagiotakos, Brewer, and Knapik; and representatives DeLeo, St Fleur and deMacedo.
Please reach out to your networks and ask them to contact their State Senator and State Representative, asking them to contact the conferees in support of the funding increase for MCPAP included in the Senate Budget (line item 5042-5000).

Following up on some stories

One of the nice things about this blog is that, even though I have removed the identifiers and changed the names, the stories that I am sharing here are real.  My patients and their families continue to grow and develop, and their mental illness/developmental statement;  these folks are living the changes that we are trying to implement, and the stories don't end at the points at which I choose to stop writing.

Last year, I wrote an op-ed about Misha, a 17 year-old girl whose mental health problems had ben ignored long enough to get her into juvenile detention, and whose insurance was going to force her to change providers when she left state custody.   When she left State custody at 17 and 11/12ths years of age, she was in the care of a psychiatrist, a counselor and a home-based service, on appropriate and reasonable doses of medication and headed back to school.

She came in to see me last month, even though, at 18, she should be transitioning to adult care.  She and her parents are still in conflict- she fired the "mental health team" after a couple of months, she has not completed school, and has worked in a minimum wage job since then.  She's now in the black hole of transition:  legally an adult, legally not in treatment, with a mental illness that may come back to trouble her in the future and perhaps able to make productive decisions regarding her future.  Still, she is currently optimistic, and we agreed to keep in touch as she goes forth into the adult world.

All childhoods must come to an end, and those colored by mental illness are no exception.  One of our hopes is that the new system under Rosie D and SB 2518 spend some time ensuring that all of the work we put into assuring care for children is not creating a new generation of adults with needs that we cannot address.

Ruel K is a young man whose family wrestled with the system back in the fall (see here and here)  He was last seen going into specialized day care, and planning to see a psychiatrist.  

He and his grandparents (now adoptive parents) were in the other day for a check up.  Things are going OK with the psychiatrist and counselor, he is on some medications that help somewhat, although his is still a high maintainence sort of life.  His mother was recently hospitalized for her mental illness and the family is currently looking to get him into preschool or Headstart in the near future.  Despite his oppositionality, his only diagnosis at present is ADHD;  I really think that his true diagnosis will come out over time.

Mental illness is often a family affair;  focusing on the child is essential, but it is not unusual for parents to have significant mental illness as well, and for that illness to affect the care of the child.  And, with kids, diagnosis is an evolutionary process that does not mesh well with DMH's procedures.

One more kid that I want to write about-  I'll back back later.