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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