Wednesday, September 28, 2011

"Adult Sensory Processing Disorder:" What greed hath wrought

I am writing this entry in the hope that it will be referenced as well as my other pages on "Adult Sensory Processing Disorder." Look here for more information.

As I have discussed in the past, I advocate a conservative approach to understanding these difficulties that people report. Unfortunately, there are some rather unscrupulous people in the world who have set up websites where you pay money to take a test and then they will tell you if you have "Sensory Processing Disorder." I won't link to those sites because I don't want to drive any traffic to them.

People who are having difficulties may be easily fooled by this kind of scam. It is a free world and if people want to pay money for Internet tests then I suppose that is their business - but I am also free to state that in my opinion sending money to get this "diagnosis" is a colossal waste of money and may actually divert people from seeking appropriate care from their doctors. If the people who made these online tests are therapists, and there is no evidence actually that they are, then they are also extraordinarily unethical.

That leaves you with some unknown people capitalizing off of the needs of others. To me, it is abhorrent behavior. Here is an email that someone just sent to me:


I am "losing my mind" so to speak and think I may have sensory disorder.

I took a test online and had a high score on most items... what do you recommend as the next step for actual diagnosis?

Which type of doctor do I make appointment with? Or can OT administer testing without a doctor?

I am scared and confused and looking for help to point me in the right direction so I can get some relief. I currently see a family doctor for ADD and take meds but it's not helping...

Thank you for your time,

I am sorry that people like this are wasting money on these unknown and online "Sensory Processing Diagnosticians." People who are experiencing difficulties should speak directly with their MD if they think that their current intervention plan and medications are not effective.

There are NO valid online tests for sensory processing difficulties. If people believe that they are having difficulties that interfere with daily life functioning they should speak to their MD who can refer them to an OT who will collaborate with the MD to develop an appropriate and evidence-based intervention plan.

For whoever is posting and profiteering from these online "tests" - you should be ashamed.

Thursday, September 22, 2011

Federal education policy: A Shakespearean tragedy

The players:

Yorick: The No Child Left Behind Act (NCLB)
Horatio: Education Secretary Arne Duncan
Hamlet: President Obama

The plot: After overwhelming bipartisan support for education reform and an honest but failed attempt at tackling a problem, partisan hacks run for the hills and blame a former President for his education policy. Background reading here.


Alas, poor NCLB! I knew him, Arnie Duncan; a policy
of infinite bipartisan support, of most excellent intentions: it hath
borne us on its back a thousand times, and now, how
abhorred in my imagination it is.
Here hung those standards of which I have praised I know
not how oft. Where be your requirements now? Your
purpose? Your promise of school choice? Your flashes of expectations,
that were wont to set the teacher's unions on a roar? Not one,
now, to praise your own objectives. Quite chap-fallen?
Now get you to my Cabinet's chambers, free from Congressional oversight,
and have them paint an inch thick, to this favor they must
come; make them laugh at that. Prithee, Arne Duncan, tell
me one thing.

Arne Duncan:
What's that, my lord.

Dost though think my plans to close Gitmo looked o' this fashion, i'
the earth?

Arne Duncan:
E'en so.

And smelt so? pah!

Arne Duncan:
E'en so, my lord.

To what base uses we may return, Arne Duncan. There
may still be jobs for us in Chicago when we are done.

Tuesday, September 20, 2011

Occupational therapy interventions to prevent bullying: Second in a series

Bullying is not just a part of growing up. Just because something happens does not mean that it is normal or should be tolerated. I am aware that many people 'live through' their bullying and think that it is enculturated into childhood - but that opinion only holds up in the mind of someone who was victimized and then grows past the problem.

Not all children are so resilient - particularly those who already have differences from the 'social norm' that are causing them to be targeted.

The need for a different level of bullying intervention is brought to a tragic light for us locally in Western NY because of the apparent suicide of a high school student over this weekend.

Perhaps I don't have much to say, or maybe I just feel like anything I was going to say feels like it rings a little hollow in context of the real story. Please go read about Jamey Rodemeyer. He perceived himself as different and perhaps was victimized because of these differences. Sometimes these differences are in disability status, or in physical appearance, or in sexual orientation, or anything. The differences themselves serve as the catalyst for negative behaviors from others who often are having their own differences or difficulties.

What I was going to present (and now sounds too academic when I read what I wrote) is that bullying is a mental health problem. It is a mental health problem for the person subject to bullying, and it is a mental health problem for the bully.

The details of this particular situation are still unknown so I hope that my comments are not interpreted in the context of anything that parents or schools or professionals or kids themselves in WNY should have done. Rather, I think that if we take the opportunity to frame the problem as a mental health issue we will be in the best position to leverage all possible resources to help prevent these tragedies.

Not everything in the world is preventable, even if we want it to be. Still, we have the opportunity to ask ourselves some questions:

1. What was the culture in the school? What rules or systems were in place to promote respectful social interactions?
2. What was the point of intervention? Was it just the child or was it the bully too?
3. Did the parents have access to all the resources they needed? Could anything have been done to give them access to even more information/resources? Could that have helped?

For the near term, at least locally, we will have many more questions than answers. Still, I hope that we can take this tragedy and change some things.

I suspect that this community is not alone in its need to change some things.

Friday, September 09, 2011

You know those EI cuts? OH NEVER MIND!

Proposed changes to early intervention reimbursements have been temporarily shelved. Today Brad Hutton, Director of the NY State Early Intervention Program, sent out an email stating:

The Department has removed from this regulatory package the changes to the payment of home and community-based and facility-based visits. The Department remains committed to continued examination of the EIP reimbursement methodology and intends to have more discussion about this and other proposals with its Reimbursement Advisory Panel in the coming months.

I know that a lot of people are very happy about this, but it is important that we consider all of the events that led up to this recent decision.

As I have discussed here frequently in the past there is no question that there is need to revamp billing for this program to help support collection of payments from insurance plans. The problem is that we just witnessed and experienced an extraordinarily irresponsible and haphazard attempt to fix the problem. In fact, in attempting to 'fix' the problem, the direct actions of the Early Intervention Program administrators have reduced the numbers of providers who are still willing to work with the program and there have been program closings based in part on uncertainty that was created because of real and proposed cuts.

I know many therapists who left pediatric positions, I watched programs close, and I have listened to and participated in the worried conversations of therapists who were left wondering if they would even have a program to work in. I have directly observed the creation of waiting lists for services and watched families opt for private therapy because they didn't want to wait for the EIP or they were unhappy with the fact that experienced therapists were leaving the EIP. There has been significant damage already done - and NOTHING has been done to fix the underlying administrative problems with insurance billing. Instead, we have seen the NYS government legislate looser standards so that the EIP has a better opportunity to collect payments. In other words, the government has been unable to manage with efficient operations so they changed the billing rules for themselves.


How will this irresponsible email promote a sense of stability in the program? Based on past history, why would anyone trust the EIP? This will not cause agencies to have confidence to hire therapists and the waiting lists will likely continue.

I strongly encourage Governor Cuomo to appoint EIP administrators who have experience in the real world of EIP service provision. There are many private EIP agency directors who would have a better grip on the problems facing the program and how to introduce reform in a responsible manner. No one is served by whimsical flip-flopping, publication and retraction of proposed industry-changing regs, and an apparent inability to understand the impacts that these actions have on the program and most importantly on the families who depend on the program.

Also, our Governor needs to develop an improved system of regulatory reform review. NY State had this in concept with the Governor's Office of Regulatory Reform that was established under Pataki and subsequently dismantled under Patterson and Cuomo. Although not all aspects of this program were as successful as others, in concept it provided a mechanism of regulatory review that may have prevented the Early Intervention Program regulatory debacle. These governmental entities need to engage in real outreach to the constituents BEFORE regulations are proposed. That would go a long way to promoting a reality check when new regulations are considered.

Regulations have an impact on families and children who receive services from these programs, and they have an impact on the businesses in this state that are set up to deliver these services. Someone seems to have forgotten this fact.

We had a program that had funding challenges, and now we have a program that has funding challenges and a seriously demoralized workforce that has no sense of stability. It is shameful stewardship of this very important program, and New York citizens deserve much better.

Friday, September 02, 2011

Occupational therapy interventions to prevent bullying: First in a series

One of the biggest concerns that we hear about from parents relates to how their children are functioning socially in their schools. Most schools have 'anti-bullying' or 'bullying prevention' programs in place. Recently, there is a lot more talk about bullying in school environments but that hasn't seemed to stop the behaviors much in the perspective of many families whose children still struggle with the problem.

It is important for parents to know that there are different kinds of bullying - and just because a program is established or policies are in place in a school that doesn't mean that bullying will cease to occur. Broad programmatic anti-bullying efforts like those listed on the OSEP website tend to speak to the whole school population and attempt to create a culture of respect that works on a very broad level. As a result, most kids understand that peer exclusion, relational aggression, and even direct bullying is not acceptable.

However, these programs seem to work best when the differences between children are least notable. In other words, these bullying programs don't work as well to address problems related to helping children tolerate broader differences - so the more overweight, or the more short, or the more learning disabled, or the more speech-impaired a child is then the more difficult it is for kids to act and react appropriately to those differences.

Some of this is a function of normal social development - children struggle with understanding the complexities of social group norms and at the same time develop tolerance for differences from those norms. We have an opportunity to intervene when children react negatively to their peers because of perceived differences that really should NOT be a threat to the establishment of their social order.

I don't mean to imply that peer on peer bullying between relatively 'equal' kids is not a concern because in fact it is - but that we need to develop different interventions for kids when those differences are more magnified. This is difficult for adults to do, probably because most adults are not particularly adroit with tolerating differences themselves. In that sense, the behavior of children is not terribly different than the behavior of many of the adults in the room - but we need to start intervening somewhere.

Sometimes I think that the reasons why some forms of bullying persist is because it is what I call a 'Low-N' problem. That means that it is generally only impacting a very small number of children -those who are falling most far from the 'acceptable' ranges of the social order.

So, the first thing for parents and OTs to do when they want to understand how to address bullying behavior is to understand bullying in its various forms - and then think about what is driving that bullying behavior. I encourage both parents and OT practitioners to study bullying laws in their states and the programs in their local districts and understand how those programs are most directly effective in tamping down negative social behaviors for the broad population. This is a great place to start and will lay a good foundation for being able to intervene with persistent problems at the individual level.

My next blog post will talk more about what steps to take to address bullying problems on the individual level for those students who are still often subject to bullying despite the presence of school-wide prevention efforts.