Friday, February 29, 2008

An idea for the remedy for Rosie D.: Why wait for the crisis?

Here's an idea on which I need to expand: Primary Mental Health Care (the moral equivalent of Primary Medical Care). It is not how we have set up the system to date, but maybe we need to do so.  Wait- you say- what the heck is this pediatrician talking about?  Let me explain...
  Traditionally, medicine are predicated on an illness model. What do I mean?  Basically, that you are, as a patient, assumed to be healthy most of the time, and, when you are healthy, you don't need the medical care system.  When you are sick (mostly self-defined),  you "access the health care system" (ie go to the doctor/hospital/ER/doc in a box) and get "care" (ie seen/tested/prescribed/surgery).   Our whole system is based on this model- doctors and hospitals are expected to do things to sick people.  In fact, this model is reflected in and reinforced by the economics of medicine;  the more things we do, the more we get paid. Turns out that this is also the easiest kind of medicine to study scientifically- the outcome of "cure"  is much easier to measure than outcome of "health"  Essentially,  we (doctors) are mechanics;  we get paid to fix things that are broken.  If you think about medicine that way, the truism "if it ain't broke, don't fix it" implies that, once the "broken" thing is fixed, we should fade into the woodwork to allow the natural state of "health" to flourish.
  Mental health is set up on the same system.  When we recognize a problem, we send you to a mental health clinician (a counselor or a social worker or a psychologist) for assessment and treatment.  The insurance (public or private) authorizes some period of treatment.  When the "problem" is resolved, the patient is discharged from the system, to re-enter when the problem returns.  
  We began to see the limitations of this model, and created the motion of primary care, initially by pediatricians (the well child conference in the early 20th century) and later in adult medicine.  There is a notion that, if doctors look for the antecedents of illness, we can do a better job of altering the course of illness.  Screening for risk factors (lead levels, anemia, developmental delay, growth abnormalities, cancer, cholesterol, problems in pregnancy) requires us to talk to people BEFORE they have a complaint, which creates a conundrum-  how do you start the conversation?  We create a whole system of annual physicals and periodic exams.  But, as a number of doctors have observed over the years, examination is not enough.  The early signs of disease are most commonly noticed by the person who has the disease, but he or she usually won't discuss these things with a stranger.  To do this kind of care, you need a relationship with your doctor, that has grown trust over time.  The most important part of primary care, it turns out, is the relationship between the the family and doctor.
  Later in the 20th century, we saw the other limitation to the episodic illness model.  Diabetes, asthma, hypertension, cancer, HIV-  these are not actually episodic illnesses.  They don't go away when they are not causig a complaint-  they are lurking below the surface, waiting to resurface.  Over the last quarter century, we have realized that, to treat chronic diseases, we need a chronic disease model.  In this model, we don't just wait for the asthma/ obesity/HIV to show symptoms-  we get together periodically to see how things are going and to tweak our treatment plan.  These "disease management" protocols are sometimes quite complex, and there is a growing suggestion that they are not always best administered by the primary care provider.  In my practice, I do chronic disease management for ADHD and asthma, but not for asthma and cystic fibrosis.  In the case of the latter two conditions, it is really important that both me and the family for which I am caring have an ongoing relationship with a sub-specialty team, skilled and that the relationship goes on when the patient is doing OK AND when the patient is symptomatic.  So what does that mean for the families of children with Serious Emotional Disturbance?
  It is likely that the kids will enter into the category with major symptoms-  suicidal ideation, destructive behaviors, hallucinations.   These kids will be getting lots of care- multiple medications, individual and family therapy, family stabilization.  But what happens when they are stable?  We send them back to the primary care provider, whose relationship with the family is supposed to provide the tripwire for the need for future interventions.  I don't think that this is enough-  these kids shouldn't be limited to visits to the mental health provider for problems, and the mental health providers need to help the families think in terms of mental health care maintenance in addition to treatment.  Families of kids with serious emotional disturbance NEED an ongoing relationship with a mental health care provider IN ADDITION TO an ongoing relationship with a primary care provider.  They need Primary Mental Health Care that is oriented around a model of mental health maintenance, rather than a model of mental health problems.  Truth be told, we could all probably use mental health maintenance.  But the chronic disease model suggests focusing resources on the sickest folks first-  in the world of child mental health, those are the kids with Serious Emotional Disturbance.
  So, how do we build a mental health system that encourages the development of a long term relationship between families and both a mental health professional and a primary care provider?  I think it begins with a recognition that the chronic disease model fits mental health as well as physical health.  That's mental health parity.  We need systems that support mental health professionals to maintain long term practice (burnout avoidance), systems that encourage families to maintain relationship rather than move from crisis to crisis, systems that encourage co-location of primary mental health care and primary health care providers and systems that reward the incorporation of the chronic disease model in to care delivery.  Tall order, isn't it?  We all better get started.
  Long ramble, that one.  Happy Leap Day, y'all.

Tuesday, February 26, 2008

2 months into the process: Where do we stand?

I added a counter to the blog last month, and it has been interesting to observe. There seems to be a steady stream of people stopping by to visit. That being the case, some of them must be disappointed to see that I haven't posted anything since the 19th. Truth be told, it's been busy. It is not that there hasn't been must to say about the state of care for children with mental health issues around the Commonwealth. It is true, however, that we have all been a little preoccupied with the flu over the last few weeks. And school vacation. And, for me, visiting kids in college.

However, I couldn't help but notice that it is approaching the 2 month anniversary of the institution of routine screening in my office and I thought it worthwhile to reflect on where we are at present.  Keep in mind that this is my experience and that of my practice;  I invite others to post their experiences as well.
1) We are not finding a lot of new stuff.   By and large, kids who are in treatment screen themselves negative with the PSC. Kids with positive screens on the PSC and CRAFFT tend be kids that I have already identified problems. Most of those kids decline to see a therapist anyway. Frustrating. So far, all of our screening (which is a lot of paperwork) hasn't accomplished much in terms of identifying the "rest of the class". My patients from this week included a 16 y/o who I diagnosed with ADHD about 5 years ago, who decided in his junior year of high school that he didn't like the way Concerta made him feel, and that he didn't want medications. So he went off meds in the fall, with his mother's permission. He's getting C's instead of B's, but he has no interest in either therapy or different medications. My guess is that he'll bottom out and be back in to see me in the fall. The screen correctly predicted a need, but not one that I can do much about at this time. Only listen harder.
2) Screening has been normalized.   Parents and kids expect it. Foreign languages are still difficult. I had one kid the other day, a 15 year old with bipolar disorder, who didn't complete the PSC form while waiting for me to come to see him because he didn't understand that he was supposed to do it, but I haven't had anyone tell me that that we are being too nosy or that there isn't any value in "checking up" on mental health during a check-up.
3) It is still hard to make a referral.   I've already told you about Rick, the boy who needs a neuropsychologist and had a great team meeting in the beginning of the month. He's still out there, but has the neuropsych appointment scheduled for the beginning of April. His school testing showed that he has progessed over the first six months of the school year, but we still can't tell if that is adequate progress. And his attitude, the feelings of an early adolescent boy who thinks that he is stupid because he has dyslexia, grow ever more complex. I know at one level that the system is actually working for him, but at the other, I see a family just crying for something to be done. Oh, and Ruel? The young lad who was out of control, and who has had a hard time interfacing with the services in a family centered way? I got a call from a DSS sponsored day-care center the other day. This is a place that really likes working with kids whose parents have had trouble disciplining them them at home. They were looking for an immunization record to finish out their files, but I took the opportunity to ask them how this child, whose family has been seeking to medicate since September, is doing in a structured environment? According to the care provider/ therapist, he is "a bit active", but responds really well to structure and attention- they are managing him and he is learning fine without medications. The family has him seeing a child psychiatrist in March- I hope that this report reaches the psychiatrist, and indicates restraint in prescribing. How can we make sure that all of the elements of his team speak to each other in an appropriate way? I guess that the bottom line is that this stuff is hard, needs time and lots of energy. Even a well-intentioned government can't mandate those things.
All of this suggests that my earlier point remains:  Screening is the easy part;  evaluating and treating the kids and families that we have evaluated remains the problem.

Tuesday, February 19, 2008

Request from the Mass Chapter of the AAP

February 18, 2008
Your input is needed regarding standardized behavioral health screening tools! MassHealth has created a menu of standardized behavioral health screening tools for use in routine behavioral health screening of children. They are requesting our assistance in refining which tools should be used. The basic ones will remain, the question is whether others should be added. Please take a moment to complete this brief survey. You input is very valuable! If you have any questions, please contact Louise Bannister at .
Thank you.

Friday, February 15, 2008

A Voice from the Heartland

I heard some interesting work today, from Susan G. Pfefferle, a researcher from Washington University in St. Louis, who spoke of the intersection of Policy, Organizations and Evidence-Based Services.  This seemed relevant to where we are going in this area, so I listened to see what we know about this.  A few observations:
1)  Access is more than existence.  People need to be walked through the mental health system if it is going to work.
2)  Policies, organization and evidence-based practices all affect provider behavior, sometimes in ways that we can't imagine.
3)  Pediatricians are taking care of a lot of kids with mental illness, whether we like it or not.
There is a bunch of research looking at some of these issues, but our guest focused on provider behavior.
 In order to think about provider behavior,  she surveyed pediatricians in six states with really different policies.  (CT, KS, SC, UT,WA, NH) using a fairly rigorous methodology.  Again, the data were complex, and will likely be published soon, but she found that state policy had a huge impact on what pediatricians do.  Some the markers that she looked at were:
use of validated screening tool; regular mechanism for case conferencing and formal mechanism for case consultation all varied with state policy.  One of her findings seemed to show that, in states with mental health carve outs, pediatricians end up treating more mental health problems on their own.  Her findings are vast and complex, and have lots of implications for what we are doing here in Massachusetts.  But when asked to summarize what policy makers can take away from this, the answer was "relationships".
The published paper is "Pediatrician Coordination of Care for Children with
Mental Illnesses" in Medical Care (44:1085-91 (2006). E-mail me if you can't find the .pdf in your library.

Thursday, February 14, 2008

Talking with the CBHII: Visions of the Systems Yet to Be

This description of our recent session does not capture all of the richness of the discussion; these impressions are culled from my notes, and reflect my conscious and unconsious biases in this matter. The nice thing about a webblog is that I can edit it, to reflect your comments- PLEASE append your thoughts, corrections or disagreements as comments to enhance our discussion and understanding of this complex matter. David
On Tuesday (12 February),  the Worcester Mental Health Network hosted a conversation with Jack Simon Ph.D, who joined Emily Sherwood one month ago as the Assistant Director of the Children's Behavioral Health Interagency Initiatives of the Executive Office of Health and Human Services. Jack and Emily are essentially in charge of assuring that the Commonwealth implements the remedy approved by Judge Ponsor in the Rosie D. case. Jack comes to the position after 25 years in the mental health field, and was the director of the CFFC program at Children's Friend and Family Services in the North Shore/ Merrimac Valley. He led a somewhat informal, but extremely fruitful conversation for 1.5 hours, that left many of us feeling quite hopeful despite the snow and sleet that was falling as we left.

He began by pointing out that, despite the fast timeline imposed in the settlement, "Rosie D" implementation is a process, that is continuing, and is still under discussion (In other words, some of what the state currently envisions may change). The priorities in MassHealth's initiative have been established in the "remedy" recommended by MassHealth and accepted (with a few revisions) by the judge. As part of MassHealth's mandate under the EPSDT guidelines, Massachusetts must do four things.  Briefly stated:

  • Institute a statewide education campaign to parents, providers and others
  • Institute a mental and behavioral screening program throughout the Commonwealth.
  • Provide more home based services and care coordination.
  • Develop a data system to track compliance.

In Dr. Simon's mind, the most ambitious part of the implementation will be the care coordination/ extensive home based services. Right now, there are a few hundred kids getting this high level care coordination; under the lawsuit, it is suspected that going to a class of 7000 to 12,000 children. Furthermore, the remedy is not just about scale (which would be remarkable enough).  This is about the way in which we work.  The judge's order  requires us to approach services in a different way than we have before, using the principles of "wraparound care planning", which is not the same the "case management" as it  has usually been practiced. One key point that he emphasized was that "wraparound care planning" is different than case management.  Wraparound is very intensive, and is suited to children and families with especially complex needs.
  • Case management is based on professional expertise.  The case manager, usually a clinician with mental health expertise, looks at the "case" and arranges for the services needed.
  • Wraparound care coordination is based on a structured team process and the  family voice.  It recognize ALL of the expertise in the room, especially the expertise that parents have about their own children.  It deliberately does not try to summarize the "case" into a "snapshot"diagnostic category, and does not try to answer every need with a one-time treatment plan.  Even the planning model is developmental;  the plan develops over time. Mental health expertise is not the sole determinant of what is appropriate.
This sort of planning will be available to all kids who meet the definition of "serious emotional disturbance", a determination that will be made by a mental health professional, using Federal guidelines.  This is one of the sticking points:  who is in the class?  Turns out to be one of two things (in my words:  or you can look at the actual definitions in the Federal Register under SAMSHA or IDEA)
  • Children and adolescents (eligible for EPSDT) with a psychiatric diagnosis and a significant level of impairment  OR 
  • Children and adolescents (eligible for EPSDT)  with "emotional impairments that impair learning" 
In addition to the intensive care coordination noted above,  folks in the class are going to be treated with "whatever it takes" that is medically necessary, including traditional office-based therapy,  in-home therapy and behavior management, treatment and monitoring by appropriately trained professionals and paraprofessionals.   The paraprofessionals can make a powerful contribution, as Dr. Simon found in the CFFC pilot program (and echoed in the experience of  "Communities of Care" in Worcester with Dr. Peter Metz)    "Family Partners", in the argot of wraparound program, are not part of the traditional mental health system. They are family members, people who have been caretakers of kids with SED or similar conditions, hired by programs for their understanding of the community in which the child or adolescent lives, and have a level of insight into the interaction between that community and the family that ultimately allows the therapy and medications to work better. Their training includes working with families, mentoring prarents and helping them to be full partners in the planning process.  While the state has a strong philosophical commitment to using Family Partners, Dr. Simons was clear we need to figure out how to do this within the Federal Medicaid regulations.  Family partners and Wraparound, if instituted in a meaningful way, will make this initiative into an oddessy;  moving from the traditional model of one-on-one expert driven care to a family-driven model, that uses the biologic cues of social interaction to reinforce both the "talk therapy", the behavioral therapy and, yes, even the medication.  

Question:  This sounds really labor intensive-  and all of the agencies have a really hard time hiring hire clinicians. How do we find the workforce to implement this bold new vision?

Dr. Simon agreed;  workforce will be a problem.  Wraparound is not therapy and doesn't replace traditional mental health services;  getting people trained in traditional therapy to learn how to be Wraparound facilitators will be a challenge.  Under the traditional model, all we needed to do an evaluation, find a diagnosis and propose a treatment plan.  Under the wraparound model,  the care planning agency will work with family over time to get the "team" up and running in a sustainable way, so that they are in the habit of working together: Under wraparound, the understanding of child and family needs and strengths can change over time,  and the team leaders goal is to facilitate a group process to move people through stages of understanding of the child and the problems.  Wraparound is the antithesis of a "one size fits all" model, that many in Central Massachusetts fear.  It involves cutting a different garment for each child in the class.  
The proposed system as described by Dr. Simon is a real break from the past, and has a number of hurdles that must be crossed to get us to where we want to be.  He list a few:
CATCH #1: We don’t yet have final Medicaid approval for all of these services.  CMS (the Federal one:  Center for Medicare/Medicaid Services) has to authorize the use of Medicaid dollars to pay for some of the wraparound services.  The Court order doesn't require Massachusetts to pay for services that CMS doesn't approve.
CATCH #2: The lawsuit is all about Medicaid, and kids and their mental health problems tend to oscillate between the public and private sectors.
CATCH #3: We (all of us) want interagency collaboration with the government, and  DYS, DSS, DOE, DMH,  DMR and others will need to weigh in on how this is all integrated into the system.
CATCH #4: Currently, MassHealth handles mental health services through five difference mental health providers (Mass Behavioral Health Partnership, Network Health, Neighborhood Health Plan, Fallon Community Health Plan, BMC Healthnet).  These changes will need to be rolled out through all of them quickly.
We all probably have come up with another 17 or 18 potential problems in implementing the wide-ranging reforms envisioned within the CBHII.  (CATCH 22, get it?)  It was clear that this process, however, means to offer real areal vehicle for moving the system in directions in which we want to go, and that, in fact, this will serve as a basis for delivering services in other insurance systems.

Our group, of course, had many questions.  First up, what about the conventional mental health center: Does this mean that we are not going to be doing the work that we are doing now?  Dr. Simon agreed that we will need "less than SED" services for many of the children identified within this process.  Concern was expressed for the severe SED kids who have multiple agency involvement. How do we keep from simply adding layers:  "Case managers to manage the case managers" was the phrase that was used? Dr. Simon responded that Wraparound is a different model and the main issue to decide on a case by case basis how the parts should interact effectively).  He suggested that we check out the  
NATIONAL WRAPAROUND INITIATIVE SITE  (I think that I found the right one)  for more information.  He also suggested looking at their publication: FOCAL POINT.  Lots of good information in those two publications.

Dr. Simon suggested that our organizations have an important opportunity to have input into the process through a Request for Information that will be coming out on COMM-PASS this week.  Agencies are invited to offer input into the process, on workforce issues, training, structure of the statewide centers to provide this.   is RFI coming out this week or next week.

We came back to a discussion of the needs of the vast majority of children with mental and behavioral health problems; how will we meet the needs of those working their way up to SED. Home-based services are clearly the most circumscribed of possible services. What can we do for the majority of kids? Screening and assessment, of course, but also early referral to the more traditional services, in an attempt to prevent the development of more serious problems. We discussed SED determination, and access to second opinions, when the assessing clinician doesn't feel that the child belongs in the class. Dr. Simon assured us that many of the services short of intensive care coordination would be available through more traditional channels. We discussed the impact of screening on the primary care provider, and the shortage of providers in Central Massachusetts, particularly in Family Medicine. While this is a bit outside the scope of the settlement, Dr. Simon agreed that MassHealth needs to be aware of the problem.

We seemed frequently to come back to the relationship between the new system and the old. MassHealth is proposing that there should be 27 CSAs throughout the system, but that "wraparound" is not therapy and the CSA is not there to provide traditional services to the services. CSA should help the clinician to do their jobs. Some thought that this sounded like "family networks" that were started within DSS several years ago, and have had some difficulties in implementation. That discussion went on for a while.

The final question was "What services are we going to pay for?" After all, true wraparound service include things like respite, after school programs and socialization services, none of which are considered the usual purview of Medicaid. How do we ensure that the other needs are met?  Dr. Simon sees that, while the reform of the system demanded by the Rosie D. case can open the door, it will not be enough to completely close the deal with services outside the scope of Medicaid.  Peter Metz of our group spoke to this at the end of our session:  "Access to flexible funds is key, but it has not yet been determined how all of this will hold together.  Family partners can serve as the bridge for people on the edge of services, but, in reality,  this is a lifetime endeavor.  After we do what is mandated, we will need to work with the legislature to create the kind of model system that children can access within the Commonwealth, one that transcends the various payment systems and provide children with a seamless continuum of services that support their growth into adulthood."  We all can dream, can't we?

As we came back to reality, our group had several thoughts regarding ways in which we could assist EOHHS with the implementation of the remedy to the problems identified in the Rosie D. case.  Shortly,  there will be a Request for Information from EOHHS regarding the next phase.  We agreed that we would watch for it, and plan a meeting in which agencies could discuss and share their responses to the questions.  The RFI will appear on COMM-PASS  when it does come out, and we agreed to set a date soon on which to have this discussion.  In the meantime,  stay tuned to the blog for further developments.

Friday, February 8, 2008

Courts, School and Mental Health: Getting the silos to work together is a full time job.

One of my colleagues observed the other day that the bulk of mental health treatment in Massachusetts seems to happen in the schools.  He found it interesting that a system designed for teaching found itself dealing with issues like psychiatric diagnosis and how that affected the child's ability to learn.  A similar change has happened in the juvenile courts (or maybe not such a change- didn't Officer Krupke in "West Side Story" have trouble discerning the difference between psychiatric, psychosocial and motivational cause of juvenile delinquency?).  In any event,  I had another opportunity to observe a juvenile court session last week and it felt like a day in the clinic.
We (meaning my advocacy partner Carolyn Pointer of Health Law Advocates and I ) go to the courts to work with Judge Luis Perez in assuring access to mental health services for the youth who seem to have mental health issues driving their legal difficulties.  In the adult literature, it has been clear for a long time that, since the movement for the deinstitutionalization of mentally ill persons in the 1970s, jails have become de facto "places of last resort" for many folks with mental illness.  Turns out that is true for kids in the system as well.  While I sat down in court last week, the first case brought before the judge was a teen who has been treated for ADHD and depression in the past, who violated parole (I forget the original charge) by getting high on marijuana over Christmas, and we doing an intensive treatment program to avoid going back into lock-up.  Criminal activity or attempt at self-medication?  Which lens do you use?  Next came a mother seeking treatment.  Her son, school aged, is under treatment with a psychiatrist prescribing stimulants and counselor working on anger issues.  A school counselor is suggesting a more thorough evaluation, because, despite treatment, he still lies and steals.  His symptoms are attributed to impulsivity, but are we really sure?  She was hoping that the court clinic could help.  Here's a "serious emotional disturbance" waiting for a team (see previous posts) that is more responsive to the mothers wishes, but it the court really the best place to work this out?  The Judge appointed Caroline to be the GAL and find out.  Then there were a series of care and protection orders, flying by so fast I couldn't hear the details.  The last case of the day was a teenager who was running away from home.  The family spoke only Spanish, and , although Judge Perez could have handled it fine on his own, we waited for the court interpreter to try to figure it all out.  I had to leave, so I never did find out if that was mental illness or social chaos.
The line between mental illness, social deprivation, autistic spectrum disorder and juvenile delinquency seems awfully blurred to me when I sit in the courtroom, as does the line between behavior disorder, learning disability and family dysfunction when I sit in an IEP.  It makes me once again realize the wisdom of the approach of the early intervention teams in early childhood:  perhaps we should stop spending time trying to draw lines in the sand between development, mental health and social problems, and start trying to solve them.

Wednesday, February 6, 2008

Screening in Practice: Si Se Puede?

Screening continues to be complicated. A colleague implementing screening at a major medical center points out some of the complications of screening non-English speakers in the office:
"There were questions about using developmental screeners in other languages. The website I used has the PSC only in English, Spanish and Japanese. The PEDS must be ordered - we have copies in Spanish and Vietnamese.
Please be aware, interpreter services only allows on-site interpreters to translate responses at the time the provider and patient are in the room together. This limits the usefulness of printed screens in other-than-English, as I assume the provider will need someone to translate responses back into English. Furthermore, registration is not able to assess a family's need for a survey in another language prior to handing them their stamped packet, change the contents of the packet and keep their flow timely. So, we'll ask staff to use written Spanish surveys in the particular circumstance that an interpreter is present - otherwise you would need to use in-room interpreter time to administer the English survey in another language. Please let me know how significant of a challenge this continues to be."
Now, on the PEDS website, they recognize the difficulty of screening in another language:

PEDS In Other Languages

PEDS Translations In Other Languages

The PEDS response form can be licensed in other languages including Somali, Hmung and Chinese. We can also work with you on other translations as needed. We now have translations in English, Spanish, Vietnamese - and license these: Thai, Indonesian, French, Swahili, Arabic, Somali, Taiwanese, Chinese, Hmung, Malaysian, Russian, Haitian-Creole, Galician and Laotian coming soon. For licensing PEDS translations please contact us with your needs.

Spanish Response Form

PEDS is also published in Spanish. The materials include a Spanish response form for parents. An accompanying guide to scoring and interpretation is written for English-speaking professionals working with Spanish speaking families. Included is the preliminary question to ask parents about whether they can complete the form independently or would prefer to have it administered by interview. This question is spelled out phonetically for non-Spanish service providers and also written in Spanish for providers who can speak and understand the language. When interpreters are not available to help with an interview administration, the guide provides a phonetic version of the statement, “Please take this form home and find someone to help you complete it. Then, please return it in this envelope.” When parents can complete the form in Spanish, the typical responses of Spanish speaking parents are listed in Spanish, along side English categories for parental concerns. This enables professionals who do not speakSpanish to easily score and interpret the Spanish version of PEDS.

Other screens are less available in other languages. Of the screens approved by MassHealth,

ASQ:SE: English, Spanish, French, Korean, and Norwegian. More in development.
BITSEA: English, Spanish
CBCL: More than 80 Languages
CRAFFT: Couldn't find any
PEDS: See above.
M-CHAT: English, Spanish
PHQ-9: English, Spanish
PSC: English, Spanish, Japanese

Our office doesn't have interpreter services available onsite. We have enough Spanish language capacity to use the Spanish form easily, but our Polish-speaking patients have to take a pass, or try to work with an interpreter. I am wondering if others have noticed this difficulty, and how we are going to cope with the array of languages used by our patients. Clearly, even in the relatively easy world of mental health screening, the devil is in the details.

Tuesday, February 5, 2008

Blogging in Times of Election: More on the teams we need

I've been away for a week, fretting about Tsunami Tuesday. I do have a dog in this race, and am very interested to hear what the collective wisdom of much of America has to say today. To distract myself from staring at the little screens, waiting for the numbers to come in, I thought it worth discussing another experience I had today with the "team" meeting process.
This one one is moving toward a positive outcome, and shows the importance of giving the parents control over the team. It does, however, highlight how difficult it will be when the parent is not able to advocate for the child.
Rick Torres is a 13 or 14 yr old boy, currently beginning middle school. Several years ago, he was found to be partially deaf and to be reading well below grade level. Me and a specialist also thought that he had trouble concentrating, and treated him with an appropriate dose of stimulant. He also got lots of services on his IEP: reading specialist, inclusion class, support from guidance, untimed exams. When he returned to the specialist 3 years later, we heard two things: 1) His ed plan isn't working. He has made no academic progress in three years. 2) Get him a neurospychologist so we can figure out what is wrong with him. ADHD doesn't keep a kid from learning to read, especially when it is working by both parent and teacher report. His mother "choiced" him to a distant district, and they called a meeting, to discuss his IEP.
In the meantime, I tried to get him to a neuropsychologist, as my behavioral health specialist wanted me to do. Under EPSDT, of course, it is my duty to optimally treat all problems that wwe identify in children, right? But first, we had to find one. There are two pediatric neuropsychologists in Worcester County of whom I knew, and neither took MassHealth in their private practice. My specialist colleague insisted there was a pediatric neuropsychologist in the local medical center. Turns out one of them leads a double life, and can see Medicaid patients within the adult neurology departments at our major medical center.
Note to system: How is the average pediatrician supposed to figure that out?
We conversed by e-mail (secured via encryption, of course, to protect confidentiality) and he agreed to see my patient in February. A bit later, I got the "prior authorization" form for neuropsychological testing from the neuropsychologist's office. Clueless, I called the neuropsychologist for advice on how to fill it out. Caught him on a snow day when he had time to talk. The form asked questions like: "List specific questions to be answered as a result of testing" and "Current mental status (Please include mood disturbance, psychosis, suicide/ homicidal ideation, past/ present physical and/or sexual abuse and relational capacity)". They also wanted his psychiatric diagnoses. Hard to complete, but I did my best, using terms like "Specific cognitive diagnoses" and "persistent cognitive deficits despite adequate pharmocological treatment" that do not flow trippingly off of my tongue, and faxed it in for review. A week later, I received a fax saying that it needed more specific diagnoses. I asked them what they meant, communicating by fax back and forth (my schedule and that of the person in the prior authorization unit didn't match). We came to a consensus on what the diagnosis was and amended the form. When we checked on the form last week, we were promised an answer within 10 days. Meanwhile, his slot was given to someone with authorization; we will need to get a new appointment once my patient gets the authorization form. Please note: I don't think that anyone at MassHealth intended this system to be difficult, but, to this simple pediatrician, it is hard to access, which probably explains why I have never accessed it before. I clearly need training in how to make it work.
Note to system: Can you help those of us who weren't trained as psychologists or psychiatrists work with the paperwork for which we are responsible, so that we can meet our obligations to our patients? We are only trying to do what the specialists tell us is necessary.
In the meantime, Rick continues in his new school, under an IEP written at his old school that identifies his problem as ADHD, but recognizes that he is a 14 years old boy in the 6th grade who is is reading at the 3rd grade level. (While I don't know the language of neuropsychology, I do know that ADHD does not lead to this sort of cognitive deficit unless it is way out of control; his isn't). His educational plan, fortunately, is based on his needs, and includes a hefty dose of reading remediation (1.5 hours per day). So, his mother, myself and a legal assistance attorney meet with the school to sort this out. (Note to reader: Check out "Medical-Legal Partnerships for Children"- we have one in our office and it is really helpful in negotiating systems).
Note to system: The team must include folks that the mother deems necessary, including advocates to assure that professionals don't dictate the terms of treatment.
The school to which young Rick was "choiced" was far away for all of us- took me the better part of an hour to get there from my office. The folks from school were great; they understood that we were concerned that this young man had gone three years without progress despite treatment. They understood that we felt that ADHD was not his only problem. They recognized the need for intense remediation of his reading ability in order for him to make any progress in the academics of Middle School, and they recognized that the biological time bomb of adolescence was rapidly approaching. They saw that this child came from a mother who cares a lot and, although a single mother with a limited income, is putting everything she has on the line for her children.
What we hadn't seen prior to the meeting was his midyear report card, which showed improvement in the two courses he had been failing in the first quarter- Rick hadn't given it to his mother for some reason. We also hadn't seen the measures that were being used to quantitate his progress in reading; the school folks agreed to get us copies of them to see. After an hour, we seemed to be on the same page.
Note to system: Team meetings, good ones like this, are a really important part of the treatment plan. They allow us to clarify our positions and to discuss our different points of view to refine and develop a treatment plan. They take a long time (3 hours of my time, 3 hours for our legal assistance attorney, an hour for each teacher, principal and counselor in the room; call it 12 hours of educator/lawyer/doctor time) which would cost a lot of money if we weren't all grant funded.
We still don't have a neuropsychologist on the team, and the team hasn't all met in one room (the specialist didn't come to the meeting). But the family has something as important: a ray of hope. As Rick's mother said, through tears, at the meeting, "I just want my boy to learn".
It shouldn't be so hard. Teams make it easier.
Addendum: My dog did OK in the race. Thanks to everyone who voted yesterday. If you haven't voted in the primaries yet, remember to show up when it is your turn. This one is important.

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