Tuesday, September 26, 2006

more on transparency: CSE meetings, second opinion and fair use

Another CSE meeting recently, another issue with transparency. Professionals can sometimes disagree, which is bound to happen because children's performance is subject to variability. When test performance varies across different tests that are supposed to measure the same construct both professionals should be open and concerned enough to try to explore and understand the difference between test scores.

I have never had a problem releasing raw test data to occupational therapy colleagues. I understand that there are issues with randomly releasing test materials and manuals to the general public, but most people agree that in the case of 'second opinions' it is not objectionable for a professional to release raw data to another similarly credentialed professional upon request and upon consent from the family. The materials pass directly between professionals, and should never involve parents, lawyers, etc. unless there is some court order to do so.

Today a (non-OT) professional didn't want to release raw data to one of their colleagues, citing confidentiality issues. Patient confidentiality is not the guiding issue with raw data release - trade secret and copyright law is. Obviously they were more interested in finding excuses to avoid sharing information than they were in helping the child.

In sum, it represented obstruction. The professional finally stated that they would be willing to have a face to face meeting with whoever would provide the second opinion, but my hopes for that are slim because we haven't been able to convince them to even contact the professional for a phone consult.

Generally when we discuss terms like "agenda-setting," "obstruction," and "control" in the same sentence we are referring to politics. It concerns me when an agenda for a CSE or 504 meeting is so tightly controlled that it precludes the team members from bringing up concerns. Additionally, in my recent meeting when I raised the issue of writing competency for a seventh grade student there was little interest in considering the concern; rather, there was an attack on my 'credential' to comment on a student's writing. The committee was willing to allow me to comment on writing legibility, but not on writing organization or process.

What is an occupational therapist's purview? I told them that I am a licensed professional who looks at a child's functional performance in their environment. Does that make me an English teacher - of course not. But does it mean that as a professional I may have observations or information for the team to consider - I would think so. This particular child has serious difficulties with visual organization, making it very difficult to coherently construct sentences - and all this is on top of legibility and spacing concerns. So for you OTs out there - next time you do a school inservice and all you talk about is how to HOLD THE PENCIL, please consider that you may be educating your teams incompletely and they may not come to understand OT as a profession that has the ability to provide broader recommendations than pencil grips and slant boards.

Sad news: before the meeting I am willing to bet that those educators could have been heard saying, "Parents aren't involved enough" or "We aren't holding kids to the proper standards." I hear teachers say this every day. So why does the story change when we enter a CSE meeting? Suddenly we take an involved parent and define them as an overbearing parent who expects too much. Then they make statements about how a child is functioning "just like" all of the other kids in the class. When it counts the most, accountability and standards really go flying out the window.

Instead the committee got fed a test result that directly contradicts the result of the outside professional, the meeting agenda gets controlled, there is a refusal to share the raw data, attempts to discuss it are shot down with attacks against credentials, and ultimately the child receives less than what they should receive. Special education, when it is at its worst, can he horribly broken.

Not all is lost: many districts really do things the proper way. But it is so disappointing when they don't.

Thursday, September 21, 2006

occupation in action

So much of what we read about in our occupational therapy journals has to do with models of medical illness. Disability models are traditional practice for health care professionals. Therapists feel 'comfortable' when working within these systems.

In 1985 I took an undergraduate Community Health course. At that time the concept of community health was in its infancy and we were just seeing the beginnings of a move away from inpatient and institutional care. I recall that the course gave me the idea that one day we would not be in hospitals, developmental centers, and large state institutions for the chronically ill.

We have made some progress since that time, but I often wonder why more OTs are not in private practice or doing more work in the community. OTs still prefer the safety nets of institutions and agencies. Practice is decidedly more community based than when I first graduated: there is a lot more home care - both for infants and adults. More services are provided in Head Start programs and neighborhood schools, and more services are provided in assisted living facilities and day programs.

Still, this is all just what I call 'second generation' community health programming. True community health service delivery meets the identified needs of people in their communities and as the community defines the problem. This kind of programming is rare; this is why stumbling across a real community health program is such a treat.

In last week's OT Practice Laura Schmelzer of the University of Findlay describes a program to promote healthier lifestyle choices for children who need to attain a healthier weight. Her innovative program is deeply embedded in the concept of lifestyle redesign and wellness. More importantly, she describes the program development process that she went through - warts and all. This kind of honesty provides an incredible model for other therapists who might also think of developing community based program initiatives.

Great ideas aren't usually hatched in perfect form - they are born of the hard work that involves thoughtful planning and persistent effort. Throw some genuine caring into the mix too - Laura gets an 'A' across the board in all areas. This is an article that you should not let pass by.

Go read her article. Then read the Healthy People 2010 report. Get inspired, and get into the community!


References:

Schmelzer, L. (2006 September 11). An occupation-based camp for healthier children. OT Practice, 18-23.

U. S. Department of Health and Human Services. (2002). Healthy people 2010: Understanding and improving health. (2nd ed.). Washington, DC: U. S. Government Printing Office.

Wednesday, September 13, 2006

Things I think about on tough days

This is a story about a little boy from Africa. His parents recently immigrated to the U.S. and he was only a little over a year old. L. contracted a bacterial infection, leading to a cold, leading to a systemic infection, all of which landed him in the pediatric intensive care unit.

It was a one in a million complication actually. Kids get bacterial infections all the time. The parents take them to doctors who prescribe medication, and modern medicine has taught us to expect that the infection will go away.

Every once in a while the medicines don't work. The bacterial strain multiplies, is immune to the medication, or who knows what. So L. was hospitalized and lying in the PICU as the infection ravaged his little body.

I believe at this early stage that the doctors did everything they could possibly do. The infection was particularly virulent though and his heart began to fail. And then his kidneys began to fail. In order to properly deliver medications he had arterial lines inserted. He also was on a ventilator to assist his breathing. As his kidneys were unable to excrete properly the excess fluid began building up in his tissues, and this further complicated his fragile heart that had to find a way to pump all of this excess volume through his system. In my mind this is where the heroic medical interventions take place: trying to restore some semblance of balance to a system that is completely out of kilter with itself. The doctors have to assess the relative acidity and alkalinity of the body, find some way to normalize it in the face of malfunctioning circulatory/respiratory and excretory systems, and there is the bacterial infection raging in the background that started it all. It probably is not as glamorous as heart surgery and is so much more difficult for people to appreciate the complexity of - but this takes real medical skill and heroism.

Weeks passed this way, with L. hanging desperately onto life. Sadly, the parents were nowhere to be found. In their culture it was typical to take a sick child to the hospital and leave him there until he was well again. The mother also was severely depressed - culture shock of a new home and the absence of her child caused her to attempt suicide several times. So L. remained in the hospital bed day after day, alone.

Ultimately, gangrene began to settle into his tissues. Once it starts it progresses quickly, and we stood by and watched L. lose parts of his fingers and toes. Then the skin over his hands and feet just started sloughing off altogether. At this point the hand surgeons and orthopedic specialists became involved and efforts were made to salvage his limbs. The parents remained peripherally involved, forbidding further amputations that could have helped stop the spread of gangrene. Days and weeks of limbo would pass with the doctors and parents in a stalemate over his care. Cultural differences almost killed this child, and no one seemed to know how to solve the problem.

I don't know if this is why they stopped seeing him everyday. I can't say that the orthopedic and hand doctors stopped caring - but they sure were indifferent. Doctors can get that way sometimes if you don't follow their plan. So the hand surgeons grafted his hands, wrapped them, and told everyone not to touch them until they gave permission. And the same was true for his feet.

Without intervention, hands and feet with open wounds that are left alone with so much swelling in the tissues will take on deformities. Open skin that is healing will heal in a fused state, turning a hand into something that looks like a catcher’s mitt: fingers will be flexed into the palm and the skin on the fingers will grow together so there are no spaces between them. The foot will drop down with the force of gravity and become stuck in a position with the toes pointing down like a ballerina.

I remembering having a confrontation with one of the hand surgeons, asking him what he thought was going to happen if we left L.'s fingers in this position of deformity without splinting them... and that perhaps he would want to be the one to work with this child after all the skin grafting was completed. I explained that L. was losing range of motion already because of the swelling and the loss of his fingertips, but it didn't matter. The MD felt hamstrung by the family, and he had established skin coverage as the only goal that could be agreed on. Function be damned; let the rehab people worry about that later, or maybe L. could have more surgery sometime in the future to undo the damage that was being done by adopting such a conservative plan.

So L.'s hands took on the deformities as I described, and they could barely still be identified as 'hands' when it was all done. Ultimately one leg was amputated at the knee, and part of the other foot. What was left of that foot was also grossly deformed, again because of conservative case management and inability of the team to bridge the cultural chasm between the 'system' and the family.

I worked with L. for months after that, making splints that would try to correct the deformities in his hands. There was so little muscle left in some of his fingers that pressure areas from splints were a real risk to exposing bone. I used a plastic elastomer, a rubbery material, custom formed in between what was left of individual digits, to achieve some degree of separation as the swelling resolved and the skin re-modeled itself. On one hand I was able to free one finger and the thumb from the rest of the hand, and on the other I was able to only partially free one thumb. Functionally, L. could use a crude pincer grasp with the one hand and a lateral pincer grasp with the other. And kids being kids, it was amazing and heartbreaking to see him function this way: trying to play with toys, trying to feed himself - as if that was the way his hands always were. No adult would have that much courage to try the way L. did.

A prosthetic limb was obtained for the amputated leg, but there were still problems with the other foot that was in such a deformed position. I made him a special foot splint that would allow him to bear some weight through that leg. It was quite a unique creation as he was unable to get the sole of his foot to the floor. The splint looked something like a shoe with a large heel on it. This was the only way to distribute weight along the foot and away from the toes.

Getting to know L. was a privilege. For weeks and months he was just a shell of a beautiful baby, lying in the PICU and unable to talk or move. All of our intervention at that point was comfort oriented: range of motion to his limbs, positioning in bed, stroking his hair and reading or singing to him. When he eventually cleared the infection and was taken off of the ventilator we got to see how special he truly was. Being just a baby, and having lost several months of opportunity for development due to the illness, he didn't verbalize much in the beginning - but his eyes told you everything. He developed an animated personality and watching him develop his vocalizations and beginnings of speech were amazing. He would cry and hate his prosthesis and splints, but he would hug you when you were done putting them on. Almost as if he knew you had to do it.

L. will grow up knowing that life is not easy. He will know struggle and even more pain because he will need more surgeries. But he has a deep understanding in his eyes, and he would deliver that understanding with a hug. The world could use a few more people like that in it, I have always thought.

Beyond the egotism of modern medicine, beyond the inflexibility of health care and educational systems, and beyond the anger that I express at it all from time to time, there are still people like L. that we all are supposed to help. On the difficult days, that is what I try to remember most.

Wednesday, September 06, 2006

Transparency

I have spent some time thinking about the concept of transparency lately. This is one example of how it has come up recently -

I like to have parents sit in on my evaluations. I find that most children are not distracted by their parents at all. Very rarely I will have to ask a parent not to coach if we are doing a standardized test, but this is very uncommon. Having parents sit in on evaluations allows them to see what is being done and it enables them to be better advocates for their children. Parents who have seen occupational therapy evaluations are better able to discuss a child's needs at a CSE or CPSE meeting. Also, having a parent 'right there' allows me to interact with them as contextual behavioral issues come up and it also allows me to observe the nature of the parent-child interactions.

The one exception to this rule is that I generally don't like to have parents present in the room if I am doing the SIPT. I can't tell you how many parents have fallen asleep while watching this evaluation - it must be the most boring thing in the world to watch. So, if I am giving the SIPT I usually tell the parents to go out for a while and I bring them into the evaluation close to the end.

What are your experiences with having parents observe and participate in the evaluation process? Let us know!