Tuesday, October 29, 2013

Reasons to pause when discussing a "sensory processing disorder" construct.


The Sensory Profile is an assessment tool that purports to measure sensory processing abilities (Pearson Education Inc., 2008); there are versions for infant/toddlers, school aged children, and adolescent/adult populations.  The tool has been used to document the incidence of a "sensory processing disorder" construct (Ahn, et. al., 2004; Ben-Sasson, et. al., 2009).  To date, although many scientists recognize that children can have difficulties with processing sensory information, this diagnostic construct has been rejected and is not considered as a distinct clinical entity (AAP, 2012).   For more in depth reading, please reference previous blog posts here.

I was interested to see an article in a recent OT Practice magazine regarding sensory processing abilities of children involved in the justice system (Shea and Wu, 2013).  The article presents an interesting test case for use of the Sensory Profile to help understand the nature of some difficulties that these adolescents may have.

Face validity is a construct that relates to whether or not an assessment measures what it is supposed to measure.  The question we can ask about this study is: Does the Sensory Profile measure what it is supposed to measure?  A statement in the article that caught my attention was
The occupational therapists were particularly surprised by the low score in sensation seeking, because they had hypothesized that these youths would have higher sensation-seeking tendencies, and their need to seek sensory stimulation may have led them to delinquent behaviors...The combination of high-sensation-avoiding and low-sensation-seeking profiles implies that the youth participants would be less likely to seek sensory stimuli and more likely to avoid stimuli than we had expected.

I had a similar experience with the Adolescent Adult Sensory Profile as documented here.  In my doctoral study, I hypothesized that people with Complex Regional Pain Syndrome would have heightened scores on Sensory Sensitivity scales.  Just as the authors in the present study, I was surprised that Sensory Profile Scores were quite different from what I expected.

Still, in both instances, the scores were atypical - they were just atypical in directions other than what was hypothesized.  This leads to a concern that I have with face validity of the tool.  It is certainly measuring something, but is it measuring sensory processing?  Is it measuring it the way that we think it is measuring things?  When a tool ends up giving us information that is diametrically opposed to what we believe we are going to get out of it then I think we need to start asking some serious questions about what it is exactly that we are measuring, and whether or not our theoretical construct and understanding  is correct.

Other questions seem rather pertinent:

1. Do the high numbers of atypical scores really indicate that 40-45% of this juvenile justice population has a 'disorder.'  That level of identification, if sensory processing difficulties as measured really are a disorder, would be rather stunning.

2. Do people who have atypical scores on the Sensory Profile truly represent a subset of the population that could also be more prone to violence or asocial behavior?  The Sensory Processing Disorder Foundation was quick to jump on the Sandy Hook massacre and describe Adam Lanza's behavior as a sensory 'diagnosis,' much to the outrage of families who made their opinions on the matter quite clear on the SPD website.

3. A fact not mentioned in the article is that in the past a small study was done on sensory profiles of people who have mental illness, and the distribution of scores as described for people who have schizophrenia was identical to the pattern of scores reported in this study - low sensory seeking and high sensory avoiding (Brown, et.al., 2002).  Other scientists have more recently supported the notion that the population of people who have schizophrenia also have sensory processing difficulties (Javitt, 2009).  It has been widely quoted that the incidence of mental health diagnoses in the justice system is 16% (Ditton, 1999). Since so many people in the current study scored atypically, is the Sensory Profile just measuring a "sensory processing disorder" construct, or is it measuring something else?

This analysis should help us to more deeply understand that our current assessment tools, which are apparently measuring something, may not just be measuring a sensory processing construct.  In my opinion, the assessment tool also includes many questions that are broad and general and could represent a number of behavioral phenomenon, primarily dependent on the interpretation or labeling of the examiner.

I believe that we should consider pausing when we use tools like the Sensory Profile to report an incidence of "sensory processing disorder."   It is apparent that atypical scores on this assessment may indicate co-morbid issues that are interwoven with a number of other behavioral and social and psychiatric diagnostic constructs.




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

American Academy of Pediatrics (2012). Policy Statement: Sensory Integration Therapies for Children With Developmental and Behavioral Disorders. Pediatrics, 129(6), 1186-1189.

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.

Brown, C., Cromwell, R., Filion, D., Dunn, W., and Tollefson, N. (2002). Sensory processing in schizophrenia: missing and avoiding information. Schizophrenia Research, 55(1-2):187-95.

Ditton, P.M. (1999). Mental Health Treatment of Inmates and Probationers, Washington, DC: US Department of Justice, Office of Justice Programs, Bureau of Justice Statistics.

Javitt, D.C. (2009). Sensory processing in schizophrenia: Neither simple nor intact. Schizophrenia Bulletin, 35(6), 1059-1064.

Pearson Education, Inc. (2008).  The Sensory Profile Technical Report.  Retrieved 10/29/13 from http://www.pearsonassessments.com/NR/rdonlyres/6AB47882-1271-4D6A-BB3D-1AF8692D67B9/0/SP_TR_Web.pdf

Shea, C. and Wu, R. (2013). Finding the Key: Sensory Profiles of Youths Involved in the Justice System. OT Practice 18(18),  9–13.

Friday, October 18, 2013

Written testimony for public hearing on EI fiscal agent implementation

Although I was initially planning to present oral testimony for the upcoming public hearing on EI fiscal agent implementation I have decided to present written testimony.  My ideas on this differ a little from other providers who very understandably are stressed by the notion of billing because of how difficult this process has been.  I think that a correctly implemented plan as outlined here would be the best solution. Here is what I have submitted:

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My name is Christopher Alterio and I am an occupational therapist and private practice (small business) owner in Western New York. Thank you for the opportunity to submit this written testimony. In my practice I see children through the early intervention program and I also see children whose families choose to be seen privately outside of that system. I have been involved with the early intervention system since its inception in the early 1990s and have been working as a pediatric occupational therapist since I was initially licensed in 1987.

Children who have developmental delays or disabilities represent a problem and the early intervention program was designed to represent a solution. In very simple terms, alignment between problems and solutions is an objective for a municipality that provides services based on the shared cultural values of the populace. That is why it was easy for New York State to create a robust early intervention program, because people know that when we provide therapies and other help to children and families that it is a known investment with a very measurable and positive outcome in the future.

We know that early intervention outcomes are not always immediately evident because we have to wait many years in order to realize savings from decreased special education enrollment or decreased engagement in other social support programs. As we live in an environment and culture that is clearly oriented toward immediate gratification there are risks to any programs and policies that promote this kind of long term investment.

The New York State Early Intervention Program is at risk.

For many years there has been a 'chipping away' of our early intervention program investment. It is politically painful and perhaps culturally inappropriate for a politician to announce opposition to programs that are designed to support babies so our elected representatives find alternate strategies for controlling our spending. I call this 'peripheral policy making' because it is easier to control costs through administrative hurdle creation than it is to have a real policy debate on what the parameters and structure of a program should be. In recent years the State has created administrative hurdles by introducing regulations that change documentation requirements, decreasing payments made to providers, and introducing revised billing and payment mechanisms. All of these actions reduce the 'attraction' for providers working within the system and in the more recent examples with billing changes it actually drives providers directly out of business.  This is an indirect and inappropriate method of cost control.

The population's desire for what is popularly referred to as mandate relief, as expressed through the Counties, is absolutely appropriate. Similarly, the State's intentions of cost sharing by asking providers to interact with the private insurance system are appropriate. The problem is that there is a disconnect between intention and result when the municipality takes action. Counties were only collecting pennies on the dollar from private insurance companies for early intervention services, and in fact they were only moderately successful in reaching into their own proverbial Medicaid pockets. Imagine that our municipalities could not even competently bill our own Medicaid program and get reimbursed!

The municipalities' inability to collect revenues should be held in sharp contrast to what private practice small business owners must do on a daily basis. People come into my private clinic daily and I bill private insurance and Medicaid regularly. I am able to collect 95% of my claims within 60 days of service delivery. Why can a very small business private practice be able to do what a multimillion dollar early intervention system cannot do?

The answer is rather simple and has everything to do with competence and appropriate planning. My small business private practice holds no special level of competence; this competence of medical billing is shared by thousands of other health care entities around the State. Unfortunately, rather than harnessing the power of this competence the State has simply created more administrative hurdles by using a State Fiscal Agent - and the very predictable result has been a rapid decline in the Early Intervention Program. Payments have been very slow, providers have limited their participation in the program, and in some cases businesses have been shuttered because they no longer have the cash flow support to make their payrolls and continue to function.

The ultimate cost is not to providers, of course - even though jobs are lost and businesses are closed. The ultimate cost falls to the children and families who have their services interrupted or even discontinued.

So how can a system with good intentions carry over those intentions into results? The most common sense answer to that would be to create a mechanism that harnesses a system that is already known to work. Current evidence indicates that providers all over NY State regularly submit claims to private insurance and Medicaid and are able to get paid. We need to re-create and re-apply that successful model.

Up until this point in time providers were able to effectively ignore the insurance payment system and simply submit vouchers to their Counties. Billing happened unsuccessfully and behind the scenes as the municipalities struggled with medical billing functions that they had no competence in. Having providers interact with the insurance industry is not an ill-conceived intention. The problem is that the implementation of this system has been absolutely incompetent.

I hold a perspective that is very different from other providers, but that is because of my own successful experience with billing as a private practice. I know that the intention of direct provider-insurance interaction is correct. I also know that there would need to be a planned and piloted transition to a new system in order for us to achieve a result that was correctly aligned with our intentions.

These providers who previously have not interacted with the insurance industry directly will now require training and support so that they can take over billing functions and do so effectively. Providers also need to have a system in place whereby they could submit residual bills to a State or County escrow system after attempts were made to bill the private insurance. I estimate that it would take twelve months of planned effort and training to prepare providers to take over these functions directly.

The current system has the State Fiscal Agent performing this billing function, and it is akin to inserting an ill-fitting cog between two gears that could perform more effectively if they interacted directly. No one will care more about having claims adjudicated efficiently than the providers themselves who are awaiting payments. There is no need to have a proverbial third wheel, the State Fiscal Agent, in this system.

The need for provider training in order to support such a process cannot be underestimated. Training in interacting with the private insurance industry would be required. Additionally, it must be noted that the State previously afforded compensation to Counties for assuming the billing duties. As billing duties represent a significant administrative burden, provider rates would need to be accordingly adjusted. Even with a rate that included compensation for taking on the additional administrative burden, the likely cost savings and improved revenue collection would more than make up for expenses that are currently being paid to support the very broken State Fiscal Agent system and its record of abysmal municipal collections.

At this point in time providers will likely fear taking on this billing burden, but that is mostly because of the very poor experience that the State has just dragged them all through. If the State were to operate in good faith by providing training support and revenue enhancement to take on this billing function, providers would be well positioned to not only participate in the program but also help insure its longer term fiscal viability through improved interaction and improved revenue collection from the insurance industry. Again, this will all constitute a 'hard sell' to a provider group that already has legitimate feelings of distrust - but had such a plan been instituted from the outset most if not all of these difficulties could have been easily averted.

This brings me to my final point. The citizens of this State make substantial contributions to these systems through their taxes and when the State is entrusted with this kind of investment there is a concomitant expectation that there will be appropriate stewardship of these programs. The citizens of this State, which in fact also includes all of the providers and service recipients in this program, have a reasonable expectation for forward planning, efficiency, and effectiveness. In this regard the system has measurably failed. We should not be spending this kind of money to achieve such a pitiful result. There should be some accountability for the damage caused to this program.

In addition to the fiduciary responsibility that we reasonably expect we also have a moral responsibility to fulfill. Culturally, our State has valued reasonable social safety nets. Our shared sense of responsibility for our vulnerable citizenry was borne out of Willowbrook and translated into our special education and early intervention programs. New York has a storied history about its sense of responsibility for these programs. Good intentions are not adequate, and we need to measure our success by actual outcomes. The current administration of our Early Intervention Program is an embarrassment. We are not meeting our responsibilities with our current systems - and meaningful adjustments and reforms like those that I have outlined must be started immediately.