School buses and safety belts: Not a simple issue

I was pleased to see the article in the recent OT Practice entitled "School Buses + Safety Belts = Good Idea." (Loveland, 2009). I think it is important for OTs to have a good discussion about ways to promote safety and prevention of child injuries.

There are some additional facts to consider so I wanted to list them here:

1. In the studies cited in the Loveland article, there was an annual average of 17,000 children seen for emergency treatment for school-bus related injuries. However, that number is a little misleading. The study reports that only 42% of those injuries were crash related, so by extrapolation, it is arguable that seat belts would not have made a difference in many of those injuries. In fact, the 17,000 number includes slips and falls outside of the bus, getting on/off the bus, etc (McGeehan, 2006).

2. The National Highway Traffic Safety Administration (NHTSA) reports detailed research on their website about school-transportation related injuries and deaths. School buses remain the safest mode of transportation for children. The actual incidence of injury and death is strikingly low and pales in comparison to data on injuries and deaths from other forms of transportation.

3. Study after study shows that compartmentalization works - but it is true that studies also tend to measure the impact of front impact crashes. There is a reason for this - and that is because there has to be some standard for determining safety. It is not reasonable to study every possible rear and side impact configuration because it is impossible to reliably report the result of those impacts. There are just too many variables - size of other vehicle, point of impact, speed of collision, locations of children related to injury distribution within the bus, and many others. People don't like to say it out loud - but the issue may very well relate to diminishing safety benefit in relation to dollars spent, which leads me to the next point.

4. Of course any child injury or any child fatality is one too many - BUT - if we are going to expend resources (money, time, energy, etc.) into injury prevention will our efforts be better served by focusing on causes where there is a MUCH GREATER NEED and where our efforts will HAVE A GREATER IMPACT on reducing injury and fatality? This is a very difficult conversation, and I expect people might get upset about discussing it this way - but it is just a reality. If we spend millions of dollars to save 20 lives a year, could we have saved hundreds of lives by distributing those resources and efforts in a different direction? This is not to diminish the importance of school bus transportation safety - but rather is an important policy question about allocation of resources.

I have made a few entries on child passenger safety in this blog. I don't have the answer to the question of 'how do we best spend our resources,' but I think it is something that we all have to think deeply about.


References:
Loveland, J (2009, June 29). School buses + safety belts = good idea. OT Practice.

McGeehan J et al. (2006). School bus-related injuries among children and teenagers in the United States, 2001-2003, Pediatrics 118, 1978-1984.

NY Times article is demeaning to elderly people who have Alzheimer's

Here is the offending/offensive article: All-Night Care for Dementia’s Restless Minds

I will be the first one to admit that it gets a little boring to listen to people have complaints about political correctness and terminology - everyone is offended by everything these days... but this article went so far beyond any semblance of acceptability that it has to be pointed out.

I am not criticizing the program - because I have no direct knowledge of what actually happens there. In concept I think that offering night time respite care for caregivers is a great idea. Unfortunately, the authors of this article portrayed the program in a very negative way - and I don't think that they really intended to do so.

Throughout the article the authors repetitively compare elderly program participants to children. For example:

1. The participants were "chattering and giggling like children sneaking out of camp."

2. A caregiver reports relief by stating, "It was like when your baby first sleeps through the night."

3. Another sad comparison about a program participant: "...like a kindergartner acclimating to school she made new friends, and blossomed."

4. Some of the activities presented to the participants do not seem to be age appropriate: "A children's pool with soapy water was set on a table, and a few people sat around it, playing with the suds, squeezing the soft toys."

5. The authors continued the theme of comparing the elderly participants to children, stating that the therapist is like "a really cool counselor at night."

6. There were also several sexual references - among the worst – “the place suddenly felt like a girlish slumber party: Mrs. XXX was talking, again, about men and sex, causing Ms. YYYY to dissolve into giggles.”

It was horrifying to see that the authors actually posted the names of these program participants. Could they provide informed consent?

In my opinion this whole article was simply disgusting. If you are so inclined, please write a letter to the NY Times and tell them that the article was demeaning, inappropriate, and a very poor example of journalism. Elderly people who have Alzheimer's Disease deserve much more dignity and respect than what was written in this article.

How I became an occupational therapist

Or perhaps more appropriately titled: Too much information. Oh well.

I wrote a blog entry once about 'the things I do.' It has been lost to time - I am not sure where I have the entry stored but I recall that it received many comments and sparked a lot of conversations about the issues of time and time spent - and how one comes to the decisions about the things they do. That entry is decidedly more serious than this one. So, I am not trying to recreate the original - but couldn't think of a more appropriate title for this entry. Maybe I will look for the original sometime.

Today is a hard work day. I am not questioning why I am an occupational therapist but sometimes when I have hard work days I reflect back on what I thought I wanted to do when I grew up.

I took a Strong-Campbell Interest Inventory in high school, and it said that my career interests were matched to a speech therapist, a college professor, and an actor. The fourth match was 'occupational therapist' but I never noticed that until I went back and looked at the document years later. The career that I was supposedly most poorly matched to was 'agricultural business manager.' I remember that because for years after taking that test I would respond to "What are you going to college for?" with "I really want to be an agricultural business manager." There are probably people out there who believed me and thought that is what I really wanted to do. The truth is that when I was in high school I thought that interest inventories were stupid and I was mostly interested in my girlfriend, hockey, and Rush.

My own career development came through a combination of interest and happenstance. In elementary school I wanted to be a football player. I don't know what I was thinking. I am not very good at football. If I was a football player, people would be able to say, "Wow, he is not very good, but he really tries hard."

In middle school I wanted to be a marine biologist (now somehow demeaned by that Seinfeld episode, oh well). It was never anything more than a fantasy, really. I used to be so excited when National Geographic was sponsoring another Jacques Cousteau special. I wanted to ride on Calypso and learn how to dive... When I used to keep aquariums I don't think anyone knew that my love of marine life was carried through from my childhood. I have never eaten fish in my life, except fish-sticks once or twice when forced to as a child - it has always seemed sacrilegious to me. I remembering reading that a new kind of squid was discovered and that it can grow to over 24 feet in length - and I didn't have anyone to talk to about that. Most people just think I hate fish, and I don't bother to correct them.

In high school I had a lot of ideas about how I wanted to spend my life. First I wanted to be a veterinarian. I read all of the Herriot books and I even got a job in an animal hospital. I loved the lab work and the anatomy and the pharmacology - the science appealed to my sense of order. But now I understand that what originally caught my fancy was Herriot's ability to connect with people. If I was a veterinarian, I would want people to say, "I love the way he handles my pet. It makes me think that he really cares about me too."

In high school I also wanted to be a stage actor. I was in all the plays in high school and also have done some community theater. I always loved the task of immersing myself into a character and experiencing those affective shifts so intensely while playing. Over time, I found out that people were dramatic and histrionic in real life which is always difficult for me to manage, and I stopped enjoying it as much. I don't do well with dramatic people, and now I find my participation in theater rather ironic.

Between high school and college I wanted to be a geneticist. Oddly, some of the coolest things I have done in my life involved fruit flies (drosophila). In my first college biology course I got to mate winged with wingless fruit flies, and I had to count the wingless offspring to see if the Punnett Square models of gene expression were true (and determine the genetic heritage of the parents). In a different class I got to remove the salivary glands of a fruit fly and see the chromosomes under a microscope. I know that some people would consider this very strange stuff to get excited over, but having success at extracting salivary glands from a fruit fly is truly accomplishing something. At least I always thought so.

Once I got into my sophomore year I wanted to be a physical anthropologist. I loved the rigor of the anatomy, and I also enjoyed the classification schemes of new vs. old world monkeys, knuckle walkers vs. brachiators, etc. Once I took a comparative primate anatomy course and had to dissect a macaque, a baboon, and a human all within the same semester. Believe it or not, that crazy semester made me even more certain that I would not mind being a physical anthropologist. I think that I especially liked the idea of disappearing into a tropical forest for months at a time to do observational research.

Along the way in college I transferred schools and had to put an 'intended major' on the transfer application. I had no idea what to write, so I opened up the college catalogue and pointed my finger. It landed squarely on "Nuclear Medicine Technology," which sounded intriguing. Then I looked at the classes I would have to take and I saw that it was heavily oriented to chemistry and math. Since I was struggling with orbital paths of electrons and calculating molarity and molality I decided that I couldn't be a Nuclear Medicine Technologist. I flipped to the next page and it said "Occupational Therapist," so that is what I put on my transfer application. The rest is history.

My daughter is currently considering her future career path - she is seventeen and not sure if she wants to be an occupational therapist, child psychologist, FBI crime scene investigator, or perhaps Broadway starlet. From my perspective her occupational development is essentially on track. She has passed through Ginzberg's stage of fantasy choices (for the most part) and is coming into tentative choices now based on her values and interests. In trying to move her forward into the stage of realistic choices I am encouraging her to spend actual time observing the professions that she has interests in.

The problem is that even under conditions of observation there are many vocational activities that are not apparent to the casual observer. For example, when I have a high school student spend a day 'observing' me I try to find fun and exciting activities for them to participate in. On these days I am more likely to have them observe me completing evaluations, providing therapy services, and in general spending time with clients.

What my young observers never see are the 45 minute conversations with my site supervisors as we pore over details and strategies of how to handle staffing concerns. They don't see me fighting the fax machine or trekking to the post office to see how faint the stamp ink can be for them to still honor my postage meter. They also don't watch me answering emails on what the most effective potty training chair is and they most certainly don't get to watch me sit paralyzed by responsibility and fall back to blog spewing for some odd kind of therapeutic tension release.

Observations may not really do much for people. I am not sure what does - in my immediate circle of high school buddies there were career aspirations including an architect, lawyer, doctor, two engineers and a rock star. None quite worked out that way, but from what I can tell people are doing fairly well. I don't worry too much about my daughter's occupational choice process. It seems to be happening.

This stream of consciousness is starting to run dry. I really need to get back to work - I have many things to do. None are particularly motivating me, so if anyone knows of a job posting for a physical anthropologist intern in the jungles of Borneo, please send it my way.

Top 10 ways to identify that it is May!

Usually sometime around April I stop looking at the calendar because I no longer have time to look at calendars. Life in April and May is generally spent running from one responsibility to the next, non-stop. Then something strange tends to happen at the end of May, and I begin to realize that Spring is in full bloom and that there is indeed a light at the end of the tunnel that all pediatric therapists are running through this time of year. Here are some common experience-markers that are making me believe I will soon have a life again...

10. The semester is over for most college students - and my son completed his undergraduate career!
9. Robins have nested in all of their favorite spots around our building and the baby bird chirping is louder each day!
8. Memorial Day Weekend!
7. Pediatric OTs are beginning to look for jobs! (the better ones always finish out the school year first).
6. My landscaping contractor has repaired the lawn damage from winter plowing and has cut the grass at least 2 times!
5. The furnace doesn't seem to be going on any more!
4. Requests for services are up up up! There is a mad scramble to take care of all the issues that SHOULD have been taken care of earlier in the school year!
3. The amount of paperwork from completed annual reviews, early intervention to preschool transitions, and preschool to school transitions is overflowing my office! I think I need to hire another full time person just to keep up with the filing this time of year!
2. Staff is talking to me about summer schedules, and information is trickling in about summer needs at various locations around the community!

And the top way I can identify that it is May...

1. I look at the blog history and realize that despite the richness of my experiences recently I haven't written anything in over a month because I have been TOO BUSY!

(hope to be back soon...)

Twenty years of SIPT - where do we go next?

Standardized tests are periodically discarded or updated because the normative group that the test was developed around may have changed characteristics. I am unaware of any 'industry standards' regarding the life expectancy of standardized tests; rather, professionals in a field tend to come to consensus about the relative usefulness of tests on their own. I would be interested in knowing what other therapists think about the Sensory Integration and Praxis Tests - which were published in 1989.

I became certified in the administration of these tests seventeen years ago. At first I found them highly useful but the more I gave the tests the more I understood the limitations. Now it has gotten to a point where I do my best to discourage people when they ask for this test - not just because of the inherent weaknesses of the test construction but also because of how old the norms are.

There have been some legitimate concerns with the tests including extremely poor test-retest reliability for several of the subtests - most notably included postrotary nystagmus, kinesthesia, location of tactile stimulation, and figure-ground perception. The statistical data for these tests is published in the test manual (Ayres, 1989).

Additionally, a complex set of cluster and factor analysis studies include this data that has unacceptable reliability - and 'diagnostic groupings' were developed on a inconsistent data set that included these measures. Mulligan (1998) conducted a very interesting confirmatory factor analysis on the original groupings and found that there was not good fit between Ayres' original groupings and the data of over 10,000 cases in the WPS database. She completed a new exploratory factor analysis and proposed a new model of diagnostic groupings but I am uncertain if anything ever came of her suggestions.

Research is best when it builds upon previous research. Asher, Parham, & Knox (2008) completed a study ten years after Mulligan's analysis. They looked at validity of Ayres original diagnostic groupings as measured on two test cases. When I read this last year I remember thinking that the LACK of reference to Mulligan's work was really odd.

One interesting comment made in the Asher, Parham, & Knox article was that they used a convenience sample of therapists in the Los Angeles area. The significance of this could be lost on people who don't understand the geographic distribution of the SI research knowledge base - which is largely concentrated in a handful of areas around the country. The study made me wonder - would the results have been different if you asked therapists OUTSIDE of Los Angeles area? If anyone asked a certain therapist in Western New York to participate in a validity study on SIPT diagnostic groupings there would have been a loud question about the Mulligan study. It is a pertinent issue - you can't talk about broad validity when you only include people who are all drinking the same Kool Aid, so to speak.

All of this is lost on parents, who read things on the Internet and want their child tested using the SIPT. Sometimes parents come to me for therapy after someone else has tested their child on the SIPT. Many of those parents are confused when I suggest re-assessment using current tools - they already paid hundreds or thousands of dollars for some assessment that their insurance company didn't reimburse - and then I tell them that they need updated assessment that their insurance company WILL reimburse. It is hard to have a good conversation about test reliability and validity with parents who just invested a lot of money out of pocket - so I lose some of those patients to be sure and the parents go off looking for someone who will validate their SIPT investment. That is kind of unfortunate, and I think we are doing parents a disservice by setting them up for this kind of conflict.

Occupational therapists have a lot to offer children regarding assessment of practic, visual perceptual, and sensory motor functions that were measured in the original SIPT. We just need an updated test. This matters especially because there are statements about the SIPT being the gold standard of tests for sensory integration - and if we are relying on a twenty year old test with questionable reliability that failed a confirmatory factor analysis then we are in trouble.

This is all also related to the push for SPD to be included in the new DSM. I think it is inadequate to rely on parent or teacher reports of processing problems as the primary form of diagnostics. The information from these parent or teacher reports is informative but it is not diagnostic. We need an updated or reworked SIPT - and in my opinion we need to shelve this current test. We should all agree that it was an amazing first step - but the second step is long overdue.



References:

Asher, A.V., Parham, L.D., & Knox, S. (2008). Interrater reliability of Sensory Integration and Praxis Tests (SIPT) score interpretation. American Journal of Occupational Therapy, 62, 308-319.

Ayres, A. J. (1989). Sensory Integration and Praxis Tests. Los Angeles: Western Psychological Services.

Mulligan, S. (1998). Patterns of sensory dusfunction: A confirmatory factor analysis. American Journal of Occupational Therapy, 52, 819-828.

Monday morning spaghetti

In 11th grade I took a computer programming class - computers were brand new technology at the time and the teacher knew little more than the students so it was definitely a wide open frontier. The computer was an excellent tool in that programming forced my adolescent brain into a type of linear and logical thinking pattern that I still find useful today.

The teacher often had us work in pairs on larger projects and I had an excellent programming partner. We regularly challenged ourselves with writing complex programs and we were sometimes over-ambitious. One particularly complex program we attempted was to write a 'Blackjack" program. I remember how excited we were when we got the cards to print correctly on the screen. This was high-end stuff for a couple of high school kids hacking away on a TRS-80 Model III computer!

Our Blackjack program became increasingly complex, and as we attempted to make accommodation for ever increasing complexities the programming code became more and more jumbled. What began as a linear progression of thought devolved into endless subroutines of special-case if-then propositions. It became classic "spaghetti programming" and it was a mess.

Eventually the project became so large and so confusing that it couldn't hold the interest of our adolescent minds - and so we moved on to easier programs.

I re-experienced all of these frustrations this morning when a parent walked into my office with her 7 year old child and asked, "Do you think that my child has a sensory integration problem?"

In my linear programming-oriented mind I have learned not to bias myself when I hear this kind of question. Sometimes when you are posed with a clinical problem you can start off by taking the individual strands of uncooked spaghetti and neatly ordering them as you tick off questions and answers. Eventually, you can sometimes reach a perfunctory conclusion based upon the obvious pattern that is evident on the differently ordered and arranged piles of uncooked spaghetti. AHA!! The problem is XXX! I like when the world is ordered and things make easy sense.

I was not so lucky today because I heard the parent say, "My child has congenital adrenal hyperplasia." My hope of neatly ordered piles of uncooked spaghetti disappeared as I imagined the water boiling and having to dump all that pasta into the pot for cooking.

Congenital adrenal hyperplasia, in general, is a condition where there is a problem with the body not producing enough corticosteroids. As a result, many children with this condition have to take replacement hormones. Additionally, there is the issue of impact from long term increased exposure to higher levels of androgens.

The parent described auditory defensiveness problems, difficulties with high activity level, and some behavioral rigidity. His 'symptoms' reportedly vary in intensity and are intermittently problematic. Here is where I felt stuck with the parent's report - is it possible, or even likely that the symptoms are nothing more than a reflection of his fluctuating ability to maintain a functional physiologic coping mechanism because of a complex psychoneuroendocrine disorder? I know enough about cortisol and stress responses to understand that this child has no physiologic basis for stability - and indeed is dependent on Cortef and Fludrocortisone to maintain as much of a steady state as possible. At the same time, I am also aware that most research says that although young girls with this disorder demonstrate more 'masculine' play behaviors and agression that this is not the case for young boys.

Now - does this represent a fundamental gender difference between the way that adrenal hyperplasia can be phenotypically or behaviorally expressed??? Or does this represent something odd about our cultural tolerance for varying levels of so-called 'agresssive' or 'hyperactive' behaviors in boys?

The reason why these questions matter is because we can then have a context for developing some kind of intervention plan. Certainly, if a child has an underlying endocrine problem it is not likely that we will fundamentally alter that condition with external stimuli. However, we might introduce calming activities for parents or teachers to try in case they see that behaviorally things are 'ramping up.' Listening to calm music, petting your cat, etc. all can contribute to lower cortisol levels - these are activities to consider because cortisol level may not be optimal at any time for someone who has adrenal hyperplasia. Conversely, caregivers (including teachers) need to understand what the behavioral markers are for impending adrenal crisis and how to obtain medical intervention when needed. The problems can be bidirectional, and the response from caregivers has to be dependent on the fluctuating signs.

What complicates this is that psychoneuroendocrine responses don't occur in a vacuum - they are also influenced by behavioral patterns and habits that are established following a lifetime of sucessive responses and reinforcers. And sometimes - kids are just kids and don't listen to adults.

Now we have fully-cooked spaghetti, ready to be heaped in a mass onto a plate for consumption. I couldn't even try to answer this parent's question about whether or not the child had a sensory integration problem. That is frustrating.

In the end, I am able to recommend a home program of calming activities and signs to watch for that are indicative of arousal and fight-or-flight responses that are out of balance. I am able to provide some common sense suggestions for activity pacing - and considering ways to make environmental and contextual modifications to limit sensory overload. I am able to encourage an activity configuration that balances structure, goal-setting, and positive socialization in addition to allowing for pedal-to-the-metal raw energy release. I am able to promote what I call high-intensity parenting because their need for educating other caregivers is critical. I am able to express that behavioral expectations can't be tossed out of the window and it is STILL important to maintain some measure of expectation and standard for appropriate contextual behavior. Also, in the long run we need to provide a cognitive-behavioral program where the child is able to increasingly learn how to attune to their own regulatory state and make activity choices to address changing needs.

I am not sure where this spaghetti mess begins or ends, and I do not know that it is a sensory integration problem - whatever that is - but whatever it is the child and family clearly needs some help. From a programming and logical-order perspective the problem represents an epic failure in our ability to 'name' and 'plan' interventions.

I am hopeful, at the least, that understanding the complexity will prevent me from introducing special-case if-then propositions. I learned in 11th grade that these methods don't contribute to a good final product.

NY Governor Paterson plans to re-institutionalize people who have developmental disabilities?

Is this about saving money on facilities with empty beds? Or is it the confused problem solving coming from politicians who have empty heads?

In a Rochester, NY Town Hall Meeting on March 11th, Governor Paterson was asked about his plans for adults who have developmental disabilities who are on long waiting lists for residential programs. Currently, many are living with their families because NY State lacks housing options for this population.

Politicians should know that this is not a new problem - New York has a long and storied history of problems in providing residential services to people who have developmental disabilities. I blogged about the history of the Willowbrook State School several years ago; I encourage you to click this link for a background study of the situation http://abctherapeutics.blogspot.com/2005/11/new-yorks-disgrace-30-years-later.html

Certainly options are different since Willowbrook was closed. Residential treatment programs in the years following 1987 changed from large institutional facilities into smaller Intermediate Care Facilities (which are still quasi-institutional), Individual Residential Alternatives, and even Supported Housing. The much heralded NYS-CARES program was supposed to finally end the residential housing shortage, but it has been a disappointment. On August 19, 1998 Governor George Pataki announced NYS-CARES; this program reportedly met and exceeded goals but the long term problem remains, despite the implementation of NYS-CARES II. Families are still experiencing long delays for residential placement options.

NY State faces unrelated problems with UNDERutilized juvenile youth facilities - there have been some rather infamous arguments and examples regarding the Auburn Residential Center and other facilities that are being kept open and staffed for virtually no one's benefit except the Union jobs that are being maintained for members of the Public Employees Federation. The union argues that NY State is trying to 'privatize' residential programs (same argument they used against NYS-CARES, incidentally) but the reality is that local community-based initiatives for the juvenile population are more effective and less expensive than maintaining these residential centers. OCFS now places most children in programs that are less expensive and more local, but the unions won't let go of the older and more expensive institutional/residential models.

This is where bureaucratic and political cowardice comes roaring forward. These two problems remain intractable unless two things happen: first, NY State would have to honor its commitment made to a vulnerable population because of the historic Willowbrook atrocities, and second, NY State would have to take on the AFL-CIO/PEF and tell them to take a very long walk off of a short pier. In a world that makes sense, we would provide appropriate housing opportunities to adults who have developmental disabilities and we would provide similarly appropriate intervention and care models for children who are skirting around the justice system. This is not an issue about Union jobs - it HAS to be an issue about what is best for these populations who require services and programs.

In NY State things rarely make sense though. Instead, Governor Paterson recently let it slip that he would convert the existing facilities, retrain the staff (in other words he will suck up to the Unions and let them keep their jobs), and use the institutions to warehouse adults who have developmental disabilities and have been waiting for community placement. If you can't believe it, go to this audio recording of the Rochester, NY Town Hall Meeting on March 11th and listen for yourself. The Governor's comments can be found at 37 minutes into the recording.

So Governor Paterson proposes to send the adults who have developmental disabilities back into the antiquated institutional residential options of the Snake Pit - a reversal of nearly thirty years of progressive NY State policy. And like a coward he will do it with a smile while he maintains his good favor with PEF.

According to the Governor, those workers (who previously worked with children who have social, emotional, and conduct disorders) just need 'a little retraining' - as if this would then qualify them to provide safe and competent care for adults who have developmental disabilities.

When we see politicians engaging in conduct that is potentially harmful to vulnerable citizens they must be stopped. Write a letter to Governor Paterson, include a copy of this blog post if you want, and tell him that he needs to come up with better informed solutions. Our most vulnerable citizens deserve better plans than this.