Wednesday, January 29, 2014

The Blue Blood of George Barton: An Introduction

My next several posts will cover the issue of social class and Gilded Age Society.  I am hopeful that these posts will provide a rich background to help in more fully understanding George Barton's interests and interactions regarding occupational therapy. 

Introducing the concept in short form is intended to set the stage for the next several posts.

I previously wrote about the early life experience of George Barton and how his father was a banker and that he was raised among the social elites in Boston.  We know that he traveled to England and was trained under William Morris - certainly not an experience that was available to most people.  Social standing is a significant point of analysis that has not been previously documented about George Barton.

Quiroga was unsure of how to assess Barton's nature (p. 124).  It may very well be accurate to state that he was truly eccentric - but the larger context of social class can not be ignored in this analysis because this may provide some needed context about his interactions.

As historical background for the upcoming analysis, the Gilded Age covers the approximate date range of 1870 through the turn of the century.  Industrialization was fundamentally transforming people's work, the United States was experiencing unprecedented population growth, electricity and telecommunications were being introduced into cities, railroads were built that connected the country and all of these events represented the dramatic change and progress in society.

Technological changes were not the only changes.  A new wave of European immigration was occurring, bringing with it a steady supply of labor.  The American melting pot was becoming more ingrained in the country's collective self-identity.

There was unfettered accumulation of wealth in the early stages of industrialization, but there was also a very deep level of poverty that was concerning.   Medicine was crude and unsophisticated in its methods - and chronic illness presented major social problems.

Everything was changing radically, and all at the same time.

Coming from wealth, George Barton had access to education and apprenticeship.  He was an architect, but he was also a man of means and privilege.   He was in the social class of the elite aristocracy.  The following entries will document some of his relationships within the aristocracy and the activities that he engaged in.  This will all set the stage to better analyze his illness experience because we will see how tuberculosis, amputation, and stroke do not know boundaries of social class.

I am hopeful that all of this will provide some previously undisclosed context so that we can understand his 'eccentricities' in a different light.

Reference:

Quiroga, Virginia A.M. (1995). Occupational therapy: The first 30 years 1900-1930.  Bethesda: AOTA Press.




Saturday, January 25, 2014

An analysis of the American Occupational Therapy Association's narrative on sensory integration


New day.  New information.  Same narrative.

The January 20, 2014 OT Practice publication has a brief article under the 'Industry News' section on page 2.  The article is entitled Study Finds SI Improves Function in Children With Autism and it links to the recent Schaaf, et al (2013) article that I posted about two months ago.

What has happened in the last two months?  Well, there was a lot of social media conversation about that article.  On December 4th Diana Henry posted a link to the article on the OT Connections site and entitled her message thread "OT/SI: Finally recognized for treating autism!"  Some very beginning conversation occurred, which was very encouraging, but there is not nearly enough interest in discussing the way that we herald these studies when they are released.  My post in this thread encapsulates some concerns about designs that are reliant only on parent report:

When the results of complex studies get reduced to soundbites I think that bad things can happen.  An example of this is the Ben-Sasson et al. (2009) study that reported that 16% of 7 to 11 year old children had symptoms of SPD-SOR.  This statistic is widely repeated, but what is not widely repeated are the investigators' other statements in that article including "Nonetheless there are limitations to relying on parent report, as parents may employ varying thresholds for rating similar behaviors due to differences in memory and emotional biases."

Similarly, an earlier study in younger children (Ahn et al., 2004) conservatively calculated a prevalence of 5% which increased to almost 14% if they included non-responders in the calculations.  This is another study and another statistic that is widely repeated, but what is not widely repeated is "These estimates must be validated with a future rigorous epidemiologic study."  That statement is rather clear in the article, but we have not acted upon this call to action.

Well ten years have passed by and there have not been rigorous epidemiologic studies, but that doesn't stop anyone from quoting the statistic even when trying to make persuasive arguments about SPD's inclusion in the DSM.  I never understood that.

In fact, rather than having any kind of corroborating and rigorous confirmation of these findings, we simply have accepted preliminary information based on parent report as 'fact' and we have moved on to more parent reporting of progress that now perches atop the parent reporting of the 'diagnosis.'

I am vocal about these issues because they hit at the very core of how we are perceived by other colleagues.  Even if we triangulate our data, and I agree that multiple informants are helpful when dealing with reporting instruments, how do we even know what the data is that we are collecting?  In simple terms, if the bus driver, teacher, and art teacher all report something to us, how are we to be sure what that problem is and what its root cause is?

If we are unsure about the root cause, on what basis are we forming our treatment?  The recent article (Schaaf, et al, 2013) makes every assumption that the cause of the problems are sensory, and the only validation of progress is the report of the parent on the very specific GAS statement which may have been worded or explained in sensory terms (e.g. Toothbrushing is unpleasant...).  Parents, unable to consistently separate their own bias and then heavily influenced by the 'framing' of the problem by the GAS statement, report progress during the sensory-based GAS conversations.  However, when we ask the same set of toothbrushing and other ADL skill questions in a neutral way on the Vineland then suddenly the children have not made so much progress?  It just doesn't add up.

The only possible conclusion is that some form of bias is influencing the parent reporting on the GAS goals, and that the most likely cause in my opinion is the 'framing' of the problem by the therapists as well as their own expectations and manner in which they have come to define the problems based on this feedback.

None of this means that there are not sensory components in some or even many of these issues.  What this means is that we are still at square one with our assessments and research designs.

Christopher J. Alterio, Dr.OT, OTR

References:
Ahn, R. R., Miller, L. J., Milberger, S., and McIntosh, D. N. (2004). Prevalence of parents’ perceptions of sensory processing disorders among kindergarten children. American Journal of Occupational Therapy, 58, 287–293

Ben-Sasson, A., Carter, A.S., and Briggs Gowan, M.J. (2009). Sensory over-responsivity in elementary school: prevalence and social-emotional correlates. Journal of Abnormal Child Psychology, 37, 705-716.

Schaaf, R. et al (2013). An intervention for sensory difficulties in children with autism: A randomized trial. Journal of Autism and Developmental Disabilities, published online at link.springer.com/.../fulltext.html


 After this conversation on the OT Connections site, Susan Lin (who is the Director of Research at AOTA) sent out this Tweet:

I invited her to join the conversation on OT Connections to discuss the rigor of the study's methodology but she has not yet joined.

This is an important issue.  The tweet states that this study finds that sensory integration improves daily function.  Actually, the study finds that the sensory integration group did better on parent report of goal achievement but there was NOT any improvement on adaptive behavior as measured by a gold standard standardized test (the Vineland).

There is a big difference - and the truth gets lost in the soundbite of Twitter.

Two more things happened since that time, however.

First, the National Professional Development Center on Autism Spectrum Disorders located at University of North Carolina Chapel Hill released its update on evidence-based practices for children who have autism. This group screened 29,000 articles about autism and made recommendations about evidence based practices.  In many ways this study replicated the National Autism Center's report.  This new study also listed sensory integration approaches as having 'Insufficient Evidence.'  I am sure that there can be criticisms about what articles they did and did not include, or that they ignored evidence, or that they did not address fidelity issues, or that it is a vast conspiracy, but at the absolute core of all this there has to be some admission that this is the second major national study of evidence based practices that states we still need better research on sensory integration.

We also have to remember that between these two national studies there was the American Academy of Pediatrics position paper that recommends a 'careful' approach to using sensory integration as a treatment model. 

But back to the present - and the article appearing in OT Practice that seems to be absolutely oblivious to the conversations occurring on AOTA's own website, oblivious to two national studies that state sensory integration has insufficient evidence, and oblivious to the recommendations from the American Academic of Pediatrics.

Not paying attention to the feedback from the outside world is DANGEROUS to the occupational therapy profession.

I believe that most people would agree that most people who have autism have sensory processing problems.  It is right in the DSM-V criteria.  However, there is disagreement about the best ways to treat those problems.  Occupational therapists have a lot to contribute to the treatment team about these issues.  However, when the professional association continues to focus on promoting a treatment approach that is not supported by the evidence it causes damage to our professional standing and the way that others view the legitimacy of occupational therapy.

We should not stop our research about sensory integration but we should hear the feedback and label this approach as 'experimental.'  We should stop trying to push for reimbursement on experimental treatments until we have evidence that begins to satisfy the external community.  By pushing for reimbursement before the external community is satisfied we jeopardize reimbursement for many other occupational therapy treatments.

The occupational therapy community needs to ask the question "what is it that is causing us to ignore the feedback of respected professional colleagues and what do we need to do to ensure our professional standing for the future."

If we believe that occupational therapy has "distinct value" then we will take the appropriate steps to make sure we are not alienating ourselves.

Friday, January 17, 2014

Governor Andrew Cuomo's infamous legacy with the New York State Early Intervention Program

The New York State Association of County Health Officials (NYSACHO) finds itself in an awkward position these days.  As a primer, you should be aware that County Health Officials are charged with administrating the Early Intervention Program in their respective jurisdictions.  They hire Early Intervention Officials and are responsible for directing the implementation of the programs.

In bygone days, the mechanisms in place for funding the Early Intervention Program were 'pay then chase' methods.  In simple terms, the County would pay the provider to see the child  for services and then the County would be responsible for chasing after the insurance companies and NY State to recover their costs.

County officials have been complaining for years that unfunded mandates, like the Early Intervention Program, are stressing their budgets severely. Residents of counties who pay property taxes don't want the County officials to raise property taxes any higher than they already are. Last year Governor Cuomo signed the historic property tax cap into law that requires local governments and school districts to raise taxes no more than 2 percent or the rate of inflation, whichever is less. Each community has the choice to  raise or lower property taxes according to the needs of the community. If the taxpayers want to pay more taxes they can, and they can override the cap with a 60 percent vote for schools and by a 60 percent vote of the governing body for local governments.

Most communities these days are not exactly rushing to raise their property taxes.

When property taxes are capped, it stresses County budgets - that is the point actually - these caps cause communities to start having conversations about the costs of the programs.  This is the problem in NYS: people want programs like Early Intervention, but don't necessarily want to pay the costs.

So as Counties are stressed they began clamoring for what they call 'mandate relief.'  In simple terms, they want someone else to pay for the mandated programs like Early Intervention.  The State responded by taking over the billing and payment system for Early Intervention and inserting a State Fiscal Agent that would act as an intermediary between the State's payment and the providers who are submitting claims.  Instead of 'pay then chase' the State started a 'chase then pay' system.  In other words, they would try to get the money from the insurance companies FIRST and then pay the providers after those attempts.

Insurance companies were very happy under the old system because County governments were hardly proficient with collecting claims.  Because the County was unable to collect money, the State would have to pitch in to cover the balance.  In order to make their State Fiscal Agent system work NYS got the Department of Financial Services involved and they heavy handed the commercial insurance programs to try to get them to share some of the burden for the costs of the program.

Now in theory that all sounds great.  Cost sharing with insurance makes sense, but obviously insurance companies are not in the business to pay claims; they are in the business to make money.  So, they do everything they can to avoid paying.  This is the standard dance between a health care provider and an insurance company.

The problem with the State Fiscal Agent system though is that the provider has no control over what the intermediary State Fiscal Agent is doing.  So, payments have been slow, incomplete, and completely confused.  That is a topic for another whole post, but suffice it to say that despite all of their good intentions the State Fiscal Agent was not adequately prepared to take over the Early Intervention billing system.  The system has imploded.

It has been my long held belief that if the State had simply given billing responsibility directly to Providers that the ability to implement cost sharing through commercial insurance would have been more efficiently achieved.  Instead, the State has imposed their Fiscal Agent, a company known as Public Consulting Group.  This company has done a poor job in its contracted functions.

Providers have had payments delayed for months, have had to hire administrative staff just to deal with the new State Fiscal Agent and the convoluted system that they put in place, and because the system has been so challenging agencies have closed, providers have left the early intervention system.  Now there are waiting lists all over the state because there are not enough professionals who are willing to work in this system.

Families and providers complained loudly about this throughout last Fall and they were actually heard by State legislators.  Companion bills were introduced in the Senate and Assembly that would return to a 'pay then chase' system so that there would be enough providers willing to work in this system and so families and children could receive their Early Intervention services.

To return to the original point of this post, this leaves the County Health Officials in a rather precarious position.  They can see with their own eyes that the Early Intervention systems they are in charge of are imploding.  At the same time, they receive marching orders from County Officials that they have to control costs and under no circumstance can they return to the old 'pay then chase' systems.


The New York State Association of County Health Officials released a memo in opposition of  the Senate and Assembly bills.

Summary of the attached Memo in Opposition to S. 6002/A. 8315: 
  
The New York State Association of County Health Officials (NYSACHO) opposes the above-referenced legislation which would weaken the ongoing transition of the Early Intervention (EI) payment model, a transition that is less than a year into implementation. NYSACHO strongly believes that the State must move forward with this transition under the existing statute to fully realize fiscal and administrative reforms that can ensure the continued viability and quality of the EI system for children between the ages of 0-3 years. 
  
Although a segment of EI service providers reported experiencing serious payment delays during the early months of the transition to a state fiscal agent, NYSDOH now reports significant and continued improvements in payment processing. NYSACHO believes the state must continue to pressure commercial insurance plans to pay for covered EI services. NYSACHO also believes that providers of EI services should legally be the providers of record for insurance claiming purposes and must continue learning effective claiming procedures as is done in all other sectors of the health care system. 
  
County governments cannot afford to return, in any way, to the system that was in place prior to April 1, 2013. 
  
Rather than implementing the changes proposed in this legislation, NYSACHO recommends that the Executive and Legislative Branches ensure that the NYSDOH is provided adequate resources to complete the transition and sustain its fiscal and administrative infrastructure as the lead agency providing families in our state with the EI services that they need. In particular, NYSACHO believes that NYSDOH must focus resources on continued improvements to, or replacements for, the NYEIS claiming, reporting and monitoring tool – improvements that are essential to all parties involved in EI. 
  
If this legislation moves forward, then the state, not localities, must bear 100% of the administrative and fiscal burden of a return to a "pay then chase" model. 

This is a disturbing development because Governor Cuomo listens closely to the Counties and has obviously been quite sympathetic to calls for mandate relief.  It seems that we have a situation where there is notable bipartisan support in the Senate and Assembly to fix this problem but the Counties and the Governor may be the highest hurdles to overcome.

Early Intervention Providers around NY State are expressing that they were just tossed under the bus by the Counties that they work for.  I can't find any reason for them to feel otherwise.

What happens next?  It is difficult to know.  The Department of Health is going full steam ahead with all of the development of systems for the State Fiscal Agent to interact with Providers.  They are reporting data that minimizes the appearance of any problems, and as Early Intervention Providers are a disparate and disconnected group of individuals as well as small and large agency groups there is no real coordinated method for them to counteract the Department of Health's information spin machine.

Mention of the Early Intervention Program was notably absent from the Governor's State of the State address.  As I have alluded to in previous posts, this is an election year and it is not likely that Governor Cuomo wants to have a lot of chatter about how utterly incompetent his team was with the administration of such a program.  The problems that have been seen in the Early Intervention Program don't fit the narrative of how great an Executive he is - and so it is all being ignored and swept under the rug and the best possible face is being placed on the data that spins its way into the newspapers.  The Albany Times Union today mentioned that providers were 'grumbling' and that there were just some 'initial snags.'  To state that there were only 'initial snags' is akin to saying that the Affordable Care Act rollout had a few 'glitches.'  Seems like a familiar cover story.

The issue has gotten an extraordinary amount of press despite the disconnected constituency of Early Intervention Providers and the families that they provide services to.  The two aforementioned bills are zipping through the legislative process but if County Health Officials get their way this will all get squashed.  It will be squashed because no one wants to pay for the therapy that a small child might need.  The insurance company doesn't want to pay for it.  The County doesn't want to pay for it.  The State doesn't want to pay for it.  And so the best outcome from their perspective is to create a morass of bureaucracy so thick that it will shield them from incurring the costs of this program.  According to Assemblyman Tom Abinanti, D-Mount Pleasant,

“The state is burying providers in an avalanche of red tape and paper work – forcing many small businesses to close and chasing speech, occupational and physical therapists to abandon Early Intervention services,” said Abinanti. “The state is hurting defenseless babies and toddlers and blaming everyone but themselves.”
This is your County Health Official throwing Early Intervention Providers and children receiving services under the bus.

This is Governor Andrew Cuomo's infamous legacy with the New York State Early Intervention Program. 

Monday, January 13, 2014

Things Jeremy wanted me to remember.

“You know this sucks,” Jeremy scowled. “You know it, and I know that you know it.”

At first I wasn’t sure if this was intended to bridge some gap between us, or if I was just a convenient target for some anger. I was only a couple years older than Jeremy and still trying to understand what it meant to be an occupational therapist. I barely had the corners of my own life tucked in properly, and here I was needing to find some headspace to help Jeremy.

 Every day he made it a point to tell me that his life sucked, and that I knew it more than anyone else.

Jeremy had been riding dirt bikes since he was 5 years old. His Dad was a sprint car driver and speed was a part of his everyday existence. He outgrew his little z50 Honda minibike and for several years tooled around the back woods near his house on a bunch of other nondescript bikes that were constantly breaking down. But then he got his hands on a Bultaco 175 Lobito and it was a love affair that he kept going all through his middle and high school years.

The Bultaco was fast and it was like strapping a rocket to an already adrenaline charged teenage existence. The bike was never street legal so the only action it ever saw was the bumpy dirt trails leading deep back into the town park that very few people ever explored.

Jeremy had no recollection of what happened – he just had the story that people were looking for him for nearly two days and he vaguely recalls the barking of a search dog, a sea of orange vested rescue workers, and the vertigo-spin and rush of air while being airlifted out of the deep woods to the regional trauma center.

Everything after that was pain and blur. Jeremy had a burst fracture at T7 and the Bultaco was a hopeless wreck of twisted metal. Neither would ever see those trails again.

And then there was the anger, and I was on the receiving end of it for almost three months. I wrote most of it down, chronicling and channeling the vitriol onto a page, where I hoped it might lose some of its power and where maybe I could find a way to control it. Or just to cope with it.

There was no easy cutting and pasting or rearranging and editing of words at that time. I had my word processor – a primitive version that required its own programming language to even function. The words could not be tamed. They could not be changed. They were just raw and they were recorded and they were there.

This hospital room is not like my room at home. This room is stark and bare. You could turn up the heat, but there is nowhere for the heat to go. It can't nestle into carpeting. It can't settle into the furniture. There just is not enough here to keep the warmth in.

Now I lie here every day. I hear voices. Everyone does. Most people don't pay attention to them because they are drowned out by the company around them.

But I sit in cold empty rooms for hours and listen to the internal monologue in my head. When I go to sleep at night I hold onto nothing. I let myself fall into an abyss of unknown proportion. When I see you walk into the room I get glimpse of what life might have been like if this didn’t happen. I look at you and I see a perspective other than the minimalism that I exist in.

And you know what?

None of it matters anyway.

Because even if I am fetally contorted and huddling against the cold – nothing is going to change. You know this sucks. You know it, and I know that you know it. 

They just don’t teach you what to say to that in school.

Jeremy’s rehab was rather un-notable. There was not much question about what the outcome would be. Fragments of bone transected his spinal cord almost completely. We introduced Jeremy to his wheelchair, helped him strengthen his upper body, and taught him how to care for himself given his new motor limitations.

This wheelchair is not my Bultaco. 

He actually said something worse. It sucked, and I knew it. He continued:

I have been sitting in this chair, and I can’t move my feet, even though I can see them touching the footplates. My legs are just dead. Dead like leprosy. I use my eyes to try and guide my action because I can’t feel anything.

Nothing happens.

When you tell me to take a break in therapy I pretend that I can see a creeping numbness in my legs work back into my heart.

 If I could walk away from this problem, I would.

 I can’t walk away though.

You taught me that I don’t have a kinesthetic sense. If you didn’t teach me the word kinesthesia I would just say that I have a hanging numbness. After the end of the day, when all the rehab people go home, I look outside the window and I can see that it is gently snowing. The whole hospital gets quiet. Or numb like my legs. It should be peaceful to me.

But all I want is for it to be Autumn again. 

Jeremy liked to talk to me. Talk at me. Mostly I listened. But then one day he called me out.

 I know you write down the things we talk about. I know because I saw you writing. Just so you know, I don’t really mind.

You probably think I’m mad all the time but really I’m not. Sometimes I just feel like I need a little space to sort things out.

 I'm having a hard time finding that space now.

 I figured that is what you do when I saw you writing.

If you figure it out for me, will you let me know?

When I was eight or so, I used to climb up a mulberry tree in my backyard and sit on top of the roof of the shed. The tree was so leafy that no one could ever find me up there. I kept a diary in an old bird feeder on top of that roof. I would go there when I needed some space. Write a couple sentences. Eat mulberries.

That’s not happening again.

Maybe that’s ok.

You know this sucks. You know it, and I know that you know it.

I don’t know what I am going to do but I know you are just starting with all this therapy stuff. You wrote it down, and you are going to do something with it. That’s what I just want to make sure you remember. 

If I had the opportunity to tell Jeremy directly, I really would love to let him know that I remembered, and that I have used every little bit of it.