Back in the Field: What Do Primary Care Providers Want?

June in a primary care office is an interesting time;  graduating high school seniors come to see their doctor for the last time before they go to college.   Pre-kindergardeners are looking for their last batch of shots before starting off in school.  This year, we add a bit of the H1N1 swine flu into the mix.  And then, we have the children with behavioral, developmental or psychiatric problems, coming to the doctor for advice on what to do next-  "My med isn't working" or "I changed my mind and want to try medications" or "What do I need to do to see a neuropsychologist?".  The last is a real problem out our way;  the nearest pediatric neuropsychologist is 20 miles away, and appointments are quite difficult.  Yesterday was a slow day:  19 patients (4 "no-shows"), but we had our share of issues.  They raised in my mind some thoughts about the ideal system:

• A 10 year child with known mental illness, on three meds, currently doing well in school, whose mother is wondering how long to continue this "cocktail" of medication, which were finally finalized in 3 years ago.  "Does he need to stay on the these forever?", she wondered,"When is it safe to change them?"  She finds it hard to discuss these things with psychiatrist in the context of the 15 minute medication check;  she feels guilty that her fabulous child requires this much medication; she feels safer talking about it with me.
  

But I have no notes from the therapist or psychiatrist on which to base my thoughts, and I have no means of getting my thoughts to the psychiatrist other than through the mother.  Is this the best we can do?

• A 5 year old child with a normal PEDS but a heaping helpful of energy and a strong desire for attention, who has been adopted by an older couple who sort of understand my reluctance to medicate children before they start kindergarten.  I've tried FST, but the family was unhappy with that in practice.  I will try to refer them to MCPAP, in the hope of getting them hooked up with the CBHI.  

The family is not terribly interested in behavioral approaches or family support;  they want me to use medications in a way in which I am uncomfortable.  Am I wrong to be uncomfortable? Am I hiding behind my algorithms? Or is the system just too darn complicated?

• An 18 year old overweight boy with autism, on no meds at present, working with his mother to figure out what comes next.  He is pretty well connected with the system, and his mother has opted to give him legal status as an adult.

His life, more or less, is dependent on the votes of the legislature as they realign funds to meet the budget crisis.  How will we arrange his transition of care?

Back in the flow of the community, I perceive that things haven't changed too much.  The CSAs are coming, the system is still complicated and I find that still, the most valuable thing that I can do with patients is to listen.  In June, we sometimes have time to do that.  It is how we learn.

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As I was writing this reflection, Matt Noyes of the Children's Mental Health Campaign sent me some things about the Health Plans' testimony at the Mental Health and Substance Abuse Committee hearing last week.  Expect a posting on this soon.

What about the Mental Health in Private Sector?

One of the things that I have been learning about public policy over the past 2 years (the duration of my almost concluded Physician Advocacy Fellowship) is that the passage of a law or the implementation of a regulation is but the first step along the road to change.  The other is that there are many things in the air at once, and it is important to pay attention to all of them.  Lately, I have been focused on the upcoming CSA deployment in the CBHI, the implementation of Yolanda's Law and the passage of legislation focusing on reimbursement for collateral contacts.  But aren't we also in the midst of rolling out the Mental Health Parity Laws, both State and Federal?  Turns out we are, and the Children's Mental Health Campaign has been right on top of that, even if I haven't been watch that aspect of this complex dance as well as I might have done.

While we have been working on the Medicaid system, and on finishing off the Omnibus Mental Health Bill, the Department of Mental Health has been trying to clarify what the new Mental Health Parity Laws mean in real life.  They issued one memorandum to the commercial insurers in March,  in which they clarified who was covered;  they need to issue a memorandum discussing what sort of services should be covered under the parity law.

The big sticking point  is the level of intermediate services that are covered.  Both Medicaid and the Private payers cover the easy stuff:  When I want once a week meetings with a therapist for a child with mild mental illness, I can get that through the outpatient department.  When I want hospitalization, I can get it if I jump through enough medical necessity hoops.  What about all of the other services that we can get for children on Medicaid (but not on the privates), like the ICC, the Home-based behavioral and psychotherapy sessions, the Parent Partners and the like?  I once had an insurance company (or rather a nice person at an insurance company)  tell me that they would rather pay for the EMH and Hospitalization than cover in-home therapy for a kid who was making weekly trips to the psych ER.  Wouldn't budge, even though it would save them money.  So, doesn't it make sense that Mental Health Parity means that the private sector should cover the same services as are covered by Massachusetts Medicaid program?

That is the message that we in the  Children's Mental Health Campaign want to send to the Division of Insurance and the Department of Mental Health:  parity means more that covering hospitalization.  Private insurance should cover a WIDE RANGE of Intermediate Services, including :

• Intensive Care Coordination
• Community Based Acute Treatment
• Family Consultation
• Day Treatment
• Crisis Stabilization
• Family Stabilization

and many other things.  Basically, private insurance should cover everything that the public sector is providing under the CBHI.  Intermediate Care is the key to creating a mental health system that actually achieve parity with the physical health system.

Resident's Day at the State House: Trainees Educating the Legislator

Each year, our Academy organizes RFDASH:  "Residents and Fellows Day at the State House" to bring to the legislators in the great State of Massachusetts, and today is that day.  We have great trainees in Massachusetts and they have once again organized a great experience in the State House.  Today, we are talking about 3 bills:

• S.366.   An Act to Regulate the Use of Off Highway and Recreation Vehicles:  Kind of a no brainer: ATVs are dangerous to children, we need to figure out how keep kids from being hurt by them.  There is some opposition, so we need to point out the need for this legislation from a public health standpoint.
• H.3586 and S.757.  An Act for the Coordination of Children's Mental Health Care Services:  You folks know all about this one:  if you don't, check out last week's blog entries.  One Senator seemed pretty certain that this would pass without too much trouble this year, especially because the fiscal analysis that was completed last July showed such a minimal budgetary impact.
• H.3453 and S.859.  An Act Establishing the Massachusetts Childhood Vaccines Program and the Massachusetts Immunization Registry.   This last one is brilliant;  we are bringing the private sector into the immunization system so that we can once again be a universal vaccine state.  The interesting thing in discussing this bill is that the opposition to the legislation in at least one Representative's office is from the folks that don't want want to immunize their children.  The bill is about paying for vaccines for folks that want them and keeping track of the folks who have been immunized, largely to prevent over-immunization (currently, if we can't find your records, we have to assume you to be unimmunized).  All of the options for rejection of vaccines remain intact, although I confess that I don't understand people who reject one of the few bits of medicine that we understand really well.

What is nice about working for the Academy is how the causes for which we fight are usually on behalf of children and not simply working for better reimbursement.  It was great to see 60 residents and fellows add their names unto the fight.

Intensively Coordinating Care: A Few Kinks in the Process

So, as H.3546 rolls through the House with nary a glitch,  I wanted to talk a bit about the role of care coordination in the process of children's mental health care and in particular in the "Rosie D." remedy plan.  Throughout the lawsuit and the negotiations on the remedy, the plaintiffs have spoken of the difficulty of engaging the various systems (e.g. DCF workers, DYS staff, DMH managers, school personnel, pediatricians, mental health workers, psychiatrists and youth workers at the Boys Club, for example) and of the need to convene team meetings to allow the family to have all of the members of their team pulling together to benefit the child and family.  In the RFR, as part of Intensive Care Coordination, the Care Coordinators  will have

"Regular contact by  with the family, youth (where appropriate) and other relevant, persons in the youth’s life (collaterals),  Facilitation of CPT meetings  [and] Face-to-face contact with the youth and family, as determined by the youth and family and members of the CPT"

I have speculated before that this will be hard to do;  I have been trying to attend as many multi-agency team meetings as possible in the run-up to July 1 to see how this is going to work.

Last week, a patient of mine with serious emotional disturbance had such a meeting scheduled, and my care coordinator and I tried to attend.  Multiple e-mails were exchanged to assure that we wouldn't forget the meeting, as it was scheduled on the day after Memorial Day.  We were there at the appointed hour; the parents were there as well.  The agency, on the other hand, had cancelled the meeting, as the lead person was on vacation.  Assurances were given that we were all called;  neither my care coordinator or the parents can find any evidence that this happened.  Did all four of us, with e-mail, cell-phones and home answering machines miss the message?  Did it get caught on a SPAM filter?  Or was it never sent?  We don't know.  We do know that two professionals and two parents spent 2.5 hours going to a meeting in a distant location that didn't happen.

Please note that I did not name the agency involved;  this is not meant to be about them, or us.  

To their credit, a superb worker familiar with my patient's family met with us informally for 30 minutes and useful information was exchanged.  Not a full team meeting, but a piece of one.  Still, multiply this by a factor of 10,000 children with SED;  to paraphrase Apollo 13: "Boston, we may have a problem here".    So, if this isn't about an agency or a patient, what is it about?  This is a plea to all parties that, as we design a system as comprehensive and multimodal as the one that we are planning, we need to invest in a communication system that crosses lines that we are not used to crossing.  Otherwise, this thing doesn't have a chance.

It will be an adventure.

New Director for CMS: Should be good for Implementing Rosie D.

From simutaneous NEACH and Community Catalyst e-mail blasts:

We wanted to pass along some great news to you: Cindy Mann, Director of Georgetown University Center for Children and Families, has been appointed by the Obama Administration to lead the Center for Medicaid and State Operations (CMSO) which oversees Medicaid and CHIP at the federal level.  Cindy will begin her new position on June 8.  Here is the statement from her blog:  

Last November, excitement over the prospects for real change swept a new President into office and gave hope to many who had long since lost hope that things could get better and that government could do good.  We all have our own criteria for what constitutes "real" or "good" change, but whatever change may mean, the majority of Americans soundly embraced it, even though we all know that change can sometimes be hard.  

For us at CCF, the promise of change has just taken on a new reality.  I am truly honored to have been selected by this Secretary, by this Administration, to lead the Centers for Medicaid and State Operations, otherwise known as "Medicaid" (though it also encompasses CHIP).  It is a great privilege to serve as a public servant in this Administration. The opportunity presented is enormously exciting and more than a little daunting.  Collectively, we have the chance of a lifetime to ensure that every person in America has access to affordable, quality coverage and to make Medicaid and CHIP the best programs they can be.  How can we do anything less?

Since all of the Rosie D. remedy services must pass through Medicaid, it is good to know that she favors a comprehensive approach to child health.

Notes from the Hearing on H.3586

I am blogging live from the hearing room, although I am unable to post in realtime, so this will appear later. There will be a break in my notes when I go up to testify. The Committee meeting was attended by about half the Committtee as best I can tell. We led off with the stars: David DMaso from Children’s Hospital Lisa Scannell from MSPCC and Lisa Lambert from the Parent Advocacy League. Before our bill came up, Representative Provo spoke of the need to empower Social Workers to be able to make decisions on the children in crisis; licensed social workers on the front line not only make the initial assessment, but need to figure out who can provide the more definitive therapy and should be empowered to deal with it. Then our panel spoke about our bill. Ms. Scannell spoke about the details; the service is clearly defined, the costs are small and the benefits are high. In my view, this is one on the limitations of the bill; there is indeed more to care coordination than collateral contacts, but collateral contacts are part of the business. It is, however, a step in the right right direction. Lisa Lambert spoke of the needs of the families with children with mental illness in the Commonwealth. She spoke of how complicated the system is; how parents have to learn the alphabet soup of agencies and plans and how the service structure is not set up to facilitate communication between providers. Dr. DiMaso spoke of the support of Children’ Hospital for this bill; he spoke of an 8 year old boy in a classroom whose teacher doesn’t know what to do; the psychiatrist is treating the child, but the teacher doesn’t know what the psychiatrist is doing. Shouldn’t the mental health provider talk with the other significant providers in the children’s life? He pointed out the MCPAP program is a collaborative care program that has already started to change the culture in Massachusetts, and that, given the prevalence of the illness, we should really be doing this in cases of mental health care. We need to create capacity for systems to be able to handle the program. He also put in a plug for linguistically appropriate care.

Senator Tolman also stopped in to support the bill; he also found the cost to be very reasonable and he thought that this would support the needs of children. Then is was:

Matt Noyes videotaped our testimony and posted it on YouTube:

Our testimony went well- Catherine Apostoleris of Winchendon spoke of the need for collateral contacts to coordinate care in the context of her school based services, and Toni Poti of the Webster Boys and Girls Club spoke of the need for need to integrate services in the community and how collateral contacts were the first step in that direction. The opposition didn’t speak and the chairs asked remarkably gracious questions. Overall, our bill was well supported by all of this testimony. There may have been more but I stepped out of the room, because I ran into an old college classmate who I haven’t seen in 30 yrs, who is also working in the area of mental health advocacy. Small world. When I stepped back inside, I discovered that someone had taken my umbrella while. Is the moral of the story that you should watch your things while testifying? Still, that is a small price to pay when you are trying to get the system to better reflect the reality of treatment in the children's mental health world.

Matt Noyes wrote a nice summary here; he has pictures.

My Testimony on Collateral Contacts

This is what I presented today at the hearing:  comments and your stories are appreciated.

Madame Chairs, members of the Committee.  Thank you for this opportunity to testify in support of An Act Relative to the Coordination of Children’s Mental Health Care.  I am a general pediatrician, an Associate Professor on the clinical faculty of the University of Massachusetts Medical School and have practiced general pediatrics in Webster for the past 18 years.  I am here as a representative of the Worcester Mental Health Network and a member of the Legislative Committee of the Massachusetts Chapter of the American Academy of Pediatrics, both part of the Children’s Mental Health Campaign.

On the basis of my experience and the experiences of my colleagues, I urge you to support this legislation, which will help us to provide better care for our patients by requiring private insurance plans to pay mental health professionals for time spent in the collateral contacts that are essential to the coordination of care for children and families dealing with mental illness.

I know the benefits of collateral contacts because I have had a care coordinator in my office for the last 12 years, who has been able to support families working within our complex and multifaceted mental health system.  That position has been supported by our Maternal and Child Health Block Grant, because the current system of reimbursement only supports direct service delivery, not the collateral contacts needed for care coordination. With the help of our care coordinator, we have been able to assist many families effectively linking care between their homes, the mental health system, the schools, appropriate State agencies and the Medical Home.

 Let me share a story from my practice which will illustrate how collateral contacts allow us to coordinate care for children with mental illness in the context of a Medical Home.  Please note, I have changed the names and details of these stories to preserve patient confidentiality.

Kenny B., is a ten year old boy who came into to see me with his father last fall.  Ken had been diagnosed with ADHD several years ago, using the AAP protocols, and had actually done pretty well with treatment based on some classroom modifications (a 504 plan) and a low dose of stimulant medication. Last spring, however, he started having angry outbursts at school that were very different from the sorts of behaviors he had had earlier in his life- something seemed different.  We referred his family to a behavioral therapist and a child psychiatrist; six months later, he was on a combination of five psychotropic medications, was getting sent from school for Emergency Mental Health evaluations weekly and  had undergone a 7-day inpatient stay.  All of this with minimal discussion between school, psychiatrist, therapist, primary care doctor and inpatient treatment facility.  

We were able to straighten all of this out, with a substantial investment of time and energy by me and my care coordinator (mostly my care coordinator).  We got releases of information to talk to everyone, and spend a fair bit of time talking to his school, therapist, psychiatrist, place of hospitalization. DSS, DMH and his insurance company.  This took time;  while we were working on this, he ended up in EMH again. This time, the family contacted me, and I was able to provide the admitting hospital with a more complete picture of what was going on.    With this information, the mental health professionals were able to appropriately diagnose his psychosis, and began appropriate treatment.  When I last saw the family, things were substantially better.  Collateral contacts and care coordination was the key to unlocking this child’s problem and ensuring that appropriate therapeutic interventions were instituted.

Collateral contacts happen under the current system, in a haphazard way.  We need to begin to set up systems of care that make this the norm.  If this bill had been in effect, it is likely that one of the mental health workers involved in the case would have collated some of this information and therefore the child would have been diagnosed and treated quickly, with much less trauma to the family.

I could tell other stories; many working families with health insurance in Massachusetts have similar frustrating experiences in their struggle to coordinate services for their children, because the “treatment team” has little incentive to talk to one another. It takes a substantial amount of work to piece together information that allows proper treatment of children with behavioral and mental health issues.  Compensating mental health providers for this work will prevent morbidity, help to assure proper treatment, and likely prevent  unnecessary, counterproductive or duplicative services.  It will also encourage mental health professionals to contact us, the PCPs, who often vital information regarding the child and family.  Currently, the only payer supported this sort of service is the Commonwealth of Massachusetts; collateral contacts by mental health workers are covered under MassHealth.  It is time for the private sector to recognize and support the services that make it possible for mental health professionals to work with us to care for the children that they insure.