Thursday, August 30, 2012

More discussion re: the AAP Policy Statement on sensory integration

This was written in response to Dr. Clark's letter to Pediatrics regarding the AAP Policy Statement: Sensory Integration Therapies for Children With Developmental and Behavioral Disorders.  

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Dr. Clark's response included some important points which were good to read, including recognition that single modality interventions tend to be ineffective; I am hopeful that her statements will help to move occupational therapy practice away from these interventions.

I was also glad to see mention of the neurobiological literature as theoretical backing for some interventions.  This is important literature that we should all keep in mind when trying to understand apparent processing difficulties.

Finally I was glad to see mention that occupational therapists use a wide variety of interventions with sensory processing interventions among them but not representing them solely.  I think we need to remind or medical colleagues of this fact lest we become associated with only a single intervention strategy.

I would like to encourage AOTA leaders and my occupational therapy colleagues to carefully consider the comments of Dr. William Carey, located online at http://pediatrics.aappublications.org/content/129/6/1186/reply#pediatrics_el_54252

I believe that Dr. Carey expresses an important point when he states

"Where normal variations leave off and abnormal degrees supposedly begin has not been clearly defined. Clinical problems probably occur most often when the particular level of sensitivity or reactivity makes a poor fit with the demands and expectations of the environment. That dissonance may lead to stress and to some form of dysfunction in the child. In these cases it is helpful to assist the child and parents in finding ways to get along better and reduce the impact of the mismatch. But this does not mean that the child has a disorder." 

I think that occupational therapists have done an incomplete job of making distinctions between truly pathological levels of dysfunction vs. identifying traits and tendencies regarding processing differences.  In part this has been facilitated by over-reliance on parental report measures and the an apparent desire to get this labeled as a disorder first and to develop valid and reliable client factor assessments second.

Occupational therapists remain well positioned, and I would even argue best positioned, to still provide important interventions to children and families where sensory processing differences are causing stress, anxiety, and even performance difficulties.  However, when we take the opportunity to consider that this is not always a primary disorder but sometimes a complex and dynamic relational point of dysfunction between the child and their contextual environment, then suddenly we have a whole different set of tools available to us in addition to the process and structural components that are currently being suggested as preconditions for any kind of effective intervention.

So why do we need to re-frame this so that we are not restricted to calling it a disorder and thinking that we need special equipment and 6 months of therapy (ideally)????  Because of pragmatics and the real world.

Dr. Clark talks about real world applications and so here we need to acknowledge the real world.  Insurance companies do not pay for months and months of therapy - nor should we expect that in this current health care environment.  What good do we do when we state that the only proper studies to consider are those that include a frequency and intensity of therapy that is not reimbursed?  Do we restrict this intervention only to the wealthy who are able to go to private clinics and pay these fees out of pocket?

Ultimately, I believe that the model of sensory integration therapy that calls for specific structural and process elements that are not found in the majority of intervention settings will not serve the public and will be discarded.  The model of sensory integration therapy that calls for high dosage requirements that are not reimbursed anywhere in the country will not serve the public and will also be discarded.  This high intensity and high dose strategy is not a model that will position us to help children and families who experience these difficulties.  

We need to consider the words of Dr. Carey carefully.  His words do not de-legitimize the role of occupational therapy; rather, his words are a clarion call to provide occupational therapy in a way that is more congruent with actual child/family needs and more congruent with a responsible and conservative intervention strategy.

Wednesday, August 29, 2012

How to solve children's complex feeding difficulties.

Physics tells us that energy and mass can't be created or destroyed; rather they are transformed from one form to another, at least in closed systems.  My brain can't handle much past Minkowski space so I get a little fuzzy if I try to understand conservation principles in expanding space-time volumes, but then again I am no physicist and I am certainly no mathematician.

I've been thinking a lot lately about energy and where it goes when variables are introduced into a system.  A parent began presenting me with a complex pathway of what-if scenarios regarding her child's eating skills - what would happen if this occurred, and what would happen if that occurred - and she had the entire child's trajectory imagined before a single bite of food made it past the child's lips.  There was no pause along the trajectory to map out the potential energy within the system (that might subsequently be transformed to a different kinetic pathway) because the parent already had the whole sequence pre-mapped.

I attempted to introduce some brakes into the parent's thinking system, and as her what-ifs were removed the kinetic energy of her perception of the child's trajectory got transformed into stress.  So, the parent became upset, the child stopped eating, and progress stopped.  Energy was definitely conserved within the system, but definitely not into a direction that was going to serve the child's needs.

So what do you do when the energy within a system can only be expressed in a variable that is negative, and if you try to change the negative energy it just gets transformed into a deeper but different expression of negativity?  That's a real problem.

Feeding difficulties are very challenging and some days I have no answers.

In my last blog post I talked a little about caring for caregivers.  This is all just an extension of that same conversation.

Anyway, the question of the evening is "Where can you find the energy within a closed system to move an object off of its seemingly predetermined path?"

The ancient Greeks solved these dilemmas by introducing a deus ex machina into the plot of their tragedies.  I don't have these mechanisms at my disposal.  I can't be certain that people really like those solutions anyway.

Martha Graham said "There is a vitality, a life force, a quickening that is translated through you into action, and there is only one of you in all time, this expression is unique, and if you block it, it will never exist through any other medium; and be lost."  I wish it was so easy - that you could just direct families to tap into that energy somehow and find ways to make changes.

I think that Martha Graham has an interesting perspective on potential energy but it isn't entirely consistent with the conservation theory.  Can it really become lost?

On Facebook today one of my relatives posted a picture of my grandmother who died seven years ago.  When people are alive they are an expressed vector of directed energy - but where does it go when they die?  Does that energy get lost?  I think that I can tap into my grandmother's energy at any time, invoking her memory to move my children into action.  It is a highly effective technique.  So maybe there is energy out there to be grabbed and directed - but we just have to find it.

As I sit here and think about it I am moved to consider that my grandmother could probably solve any child's eating difficulties.  Boy could she cook, and she loved to nurture other people with her cooking.  She also didn't suffer any nonsense.  She would have done well as an occupational therapist working with feeding difficulties.

If you knew my grandmother you would understand how true this is.  Maybe I can find a way to tap into this somehow.

Tuesday, August 21, 2012

I have no title for this

I was reading the Medscape Oncology pages today.  I received an email notification about a series of articles on palliative care and most of them were quite good.  There was a particularly interesting perspective on DNR choices and showing patients (who have terminal disease) CPR videos and how this impacted their choices for end of life care.

I started thinking that this was good information.  Then I started thinking that it is information that could be bureaucratically abused.  It worries me when I start seeing people use the word 'economics' next to 'end of life care.'  I think if we focus on quality issues and as long as we are honestly looking at quality issues then it is all ok.

Anyway, I started clicking around and then I stumbled across an older article and video about how doctors need to understand the needs of care providers.    I thought that it was a kind message and in watching the video portion I was thinking that Dr. Marshall seemed like a very kind doctor. 

He talked about how some care providers might secretly wish that they could just move forward and perhaps that is true.  I think that when a patient has been very sick for very long that this could be a very common feeling that a caregiver could have, even though it might be a conflicted and complicated and very painful feeling.  So I think he is correct in saying that medical people need to care for the caregivers.

I personally never had the kind of feeling that Dr. Marshall was referring to.  When my Dad died it was a process that took maybe a year and a half from diagnosis to his death.  I remember reading journal articles about his particular type of cancer, the relatively grim prognosis, the conversations I had with my Dad about the prognosis, the discussions that we had with his oncologist and how she told us not to read articles (!!) and on and on.  I think his oncologist also had a good heart.  Her card is still in my wallet, next to my Dad's funeral card.  I haven't quite figured out how to move either out of my wallet yet.

So I am not in the 'let's get by this process' camp.  I am more in the 'how in the world do I get by this' camp.  It has been two plus years now and when I saw Dr. Marshall's article it kind of came rushing back.  Grief is like that, I guess.  You never really can understand the pull of that riptide until you stop and understand how big that ocean is.  Oh well.

So the message from Dr. Marshall is correct.  Medical folk (and I am one) have to care for the care providers.  Everyone processes this stuff a little different.  Everyone will need a different kind of care.  Boy is this a tough issue.  Even when you are a medical person.

Friday, August 10, 2012

I believe that small things matter

I've been reflecting today on my belief that small things matter.

This first came to mind when our current OT student intern jokingly commented that we almost lost another puzzle piece - which is justification for disaster alert at ABC Therapeutics because I kind of have an unhealthy obsession a value for keeping puzzles complete... We recently had a celebration when we finally found the beloved monkey that was missing from a puzzle for so many months.

So anyway I am glad that we don't have that many missing puzzle pieces because even though it is a small thing I have the belief that it matters. 


The concept was reinforced when our OT student intern was able to open the door today - she has struggled with the 'child safety cover' on the door handle for her entire fieldwork experience.  This afternoon she opened up the door on the first try and at the same time we both cheered, "HOORAY!"  Again, it is a small thing that matters.



I have also been thinking about one of my little friends who while swinging upside down made the side comment that the swing 'made his pee pee hurt.'  Well that was an odd thing for a child to say, but it was a single small comment that I thought mattered.  So, I replicated the condition when he made the statement so that he was hanging upside down from the bolster and I watched him frown and wince slightly while he struggled to maintain the supine flexion position.  I told the mom to have the MD check for an inguinal hernia and sure enough he will have that repaired in a couple weeks.

My point is that small things matter and I think we do our best jobs when we are tuned in to those details.

So then I was walking outside to get my mail and one part of the black-eyed susans were leaning horizontal to the rest of the group of flowers.  It was different, I thought, and perhaps warranted rearranging.  The difference was small.  If I 'fixed' it then that might be representational of what we try to accomplish here on a daily basis.  If I left it alone then even though it was growing horizontally it was still just fine the way it was and could be celebrated.  So I thought better of it and decided to let the difference remain the way it was. It was a small thing, but it made me feel ready to start the weekend.

So off I now go...

Wednesday, August 08, 2012

Occupational therapy private practice: A day in the life


I received an email yesterday from an anonymous commenter who wanted to know what one of my actual days looked like as a private practitioner.  So here goes a listing of what happened today, which seems as representative as any other day :D :

4:30am Wake up.  Read email, respond to email.  Check local and national headlines, reading 1-2 articles of interest.  Check Internet forums, respond to messages.  Look at clock and sigh.

5:15am Go back to sleep. 

7:15am Wake up, again.  While having breakfast read email, respond to email.  Complete a journal and focused medical news scan, reading 1-2 articles of interest. Check Internet forums, respond to messages.  Look at clock and sigh.

8:30am  Wonder why children are still sleeping, pay attention to the cat and dog, leave for the office.

8:50am Arrive at office.  Meet with parents in the waiting room while their children are in for therapy.  Banter, advise, support.  Repeat as needed.  Schedule meetings to resolve lingering issues with marketing consultant and accountant.

9:30am Sit at office computer, load up email program, Twitter, Facebook, and news readers.  They are now prepared for scanning throughout the day.

Write reports.  Schedule incoming appointments with new families.  See children.  Talk to more parents.  Supervise and monitor Level II student.  Meet with staff.  See more children.  Talk to even more parents.  Respond to emails.  Ruminate, generate questions, and research morning issues including:

1. What are all the possible reasons why a child who has dual diagnosis of Down Syndrome and Autism would have neurodegenerative regression during the preschool years.

2. What are appropriate (sensory tolerable) calorie enhancers to suggest to a parent whose child has a constricted diet.

3. Is inappropriate use of social media a problem in itself or does it represent a foundational ethical problem with maintaining appropriate professional boundaries.

Act on information obtained following rumination and research.  Direct staff, advise parents, rant on professional forums.

12:45pm Look at clock and sigh.  Eat lunch rabidly.

1:00pm Complete evaluation of a new child with Level II student.  Make decisions.  Consult with family.

3:30pm Read email, respond to email.  Check Internet forums, respond to messages.  Look at clock and sigh.  Consult with COTA about caseload issues.  Try to return phone calls and wish that more people worked later in the afternoon. Start some letters, but only finish the marketing one to the cardiologist about the recent study in Circulation re: neurodevelopmental problems in children following complex cardiac procedures. 

4:30pm Worry about personnel shortages in rural areas.  Commiserate with colleagues about shortages.  Call another colleague and commiserate about the child/family who is having feeding difficulties.  Ruminate, plan, coordinate.

5:00pm Tell student to go home.  Tell staff to go home.  See more children with COTA.  Meet with parents to discuss MD plans to add Metformin to an Abilify regimen.  Discuss activity level, changes in routine, and difficulty with measuring behavioral effects when overall routine is disrupted by summer schedule.  Worry about how to give MD the best information to understand effects.

5:30pm Worry more.  Research cardioprotective value of Metformin.  Try to find articles related to use in children who have autism.  Tell COTA to go home.  Look at clock and sigh.

6:00pm Look at what didn't get done today.  Didn't address billing today.  Didn't pay bills today.  Didn't finish letter thanking someone for interviewing.  Didn't receive payment from  some vendors that owe some money.  Be thankful that payroll is NEXT week.

6:15pm  Write pointless blog post outlining my day.

6:30pm Leave office.

Monday, August 06, 2012

Special interests drive language changes to OT Assistant laws in NY State

As I blogged about earlier this year, there were some problems with the changes to the NY State occupational therapy law that placed significant barriers to non traditional fieldwork settings.  OTA fieldwork educators in New York State and NYSOTA saw these problems and there was a last minute rush to file a technical amendment to the law so that they would not have to operate under such restrictive conditions.

It is true that the way the law was written could have contributed to a decreased pool of practitioners able to accept fieldwork students; OTA students would have had to compete with OT students for licensed occupational therapy supervisors.  Fieldwork educators already struggle to find 'slots' for their students and the law certainly did not help by imposing restrictive limits on WHO could supervise a student.

However, restrictions are in place for a reason - namely to protect the public - and both Medicare and Medicaid have rather severe restrictions that functionally supersede the State law because if an agency wants to get reimbursed then they will have to be rather cautious with the way that students are involved in their agencies.

So now the law has been amended so that OTA students can be supervised by OTAs, as long as the OTA is in turn supervised by an OT.  However, the requirement is no longer for "direct supervision" but it calls for "direction and supervision."  I find this to be a wordsmithing change that completely alters the intent of the original legislation - and the educators who met in a private pow-wow with NYSOTA representatives at the national conference to come up with changes have to know that they fundamentally altered the original intent.

I understand that the original language was less than optimal.  Actually it might have been detrimental.  I also understand that there was a time crunch to get the technical amendment introduced.  Still, the idea that such a dramatic turnaround in intent and language could be engineered by such a small contingent of people that represents a focal point of interest in extraordinarily unhealthy for our profession.

What are we left with?  Well OTA students still can't operate in schools or nursing homes (that are seeking Medicare and Medicaid reimbursement) unless they are under the direct line of sight or continuous attendance of the licensed professional.  However, with the way that the law is now written fieldwork educators can place students in non-traditional placements (in other words, places that are not so tightly regulated) and provide them with this generic level of "direction and supervision."

Now that is a win for the fieldwork educators who suddenly have a lot more latitude for student placements.  But there is a problem:  According to Practice Analysis studies nearly 80% of all COTAs work in skilled nursing facilities, rehabilitation facilities, or schools - all of which function under those more restrictive Medicare and Medicaid guidelines that actually require direct supervision.  Since NY State law also now mandates that OTAs pass a certification examination (which by the way happens to be based on a practice analysis and not on impromptu pow-wows) that means that OTA students may be legally placed in these non-traditional settings where they will receive "direction and supervision" but they sure will have a difficult time passing the certification examination that asks questions about the traditional work settings.

Here are the takeaways for all this:

1. If you are an OTA student in NY State, just because you are legally allowed to complete fieldwork in non-traditional settings under "direction and supervision" that does not mean that those experiences will necessarily prepare you adequately for passing the certification examination and subsequent entry level practice.  So being an OTA for the soup kitchen or domestic violence shelter might be cool, or being an OTA for the private community agency that provides dance and karate lessons to children who have disabilities might sound like fun - but just be ready to know that most entry level practice does not occur in these settings.

2. If you are an employer who is now hiring OTAs who are operating under limited permits (until they pass their exam) then you might want to screen a little closer to make sure that the students had adequate fieldwork experience.  There are a lot of employers out there (myself included) who had to struggle with students/new therapists who previously were not required to pass a certification examination.  Have these changes really ensured that these students will be prepared for the new requirement of examination and for practice?

Alternately, if you are an employer who operates under the fast food industry's theory of a never ending supply of unskilled labor you might like hiring these marginally prepared students and just dumping them after a year when it is apparent that they won't be passing their certification examination.  NY State allows nursing homes and hospitals and schools to do this with impunity, but you won't find these candidates operating anywhere near a private practice because the law doesn't allow it. 

3. If you are a health care consumer in NY State you should be aware that this is the way that practice laws are getting written.  That should concern you.

3. If you are a NY State politician then you might want to drink an extra cup of coffee during these last minute legislative marathons so you can notice that there is a world of difference between "direct supervision" and "direction and supervision."

4.  If you are a blogger (like me), make sure you write enough disclaimers so that people know you are not anti-progress, or anti-non traditional fieldwork.  Instead, make a lot of statements so that people reading this will know that these concerns are generated based on the belief that achieving expansion into emerging areas should not come by potentially sacrificing the quality in our educational programs.  It should also not come at the price of public safety and by negligence of our duty to prepare students appropriately to serve the public.

Thursday, August 02, 2012

Challenges with the care of people who have developmental disabilities: A case study of recycled history in Western New York

Over the last month there have been several stories in the news about the shared 'decision' to close down the Ridge Road Intermediate Care Facility that is operated by Baker Victory Services.  The 'decision' was actually prompted by conversations between the NY State Office for People with Developmental Disabilities (OPWDD) and Baker Victory administrators.  In the recent past there have been reports of problems at the Ridge Road site including failures in quality of care.

New York State monitors performance on quality indicators of these facilities.  In June 2011 Baker Victory Services was placed on Early Alert Status for deficiencies in care and this was followed by imposition of a $2000 fine in January 2012 due to ongoing concerns.

It is difficult to assess how serious the violations are without more direct knowledge of the findings.  Of course any dereliction of responsibility to provide proper care is a concern, but family members of those housed in the facility are expressing their belief that the care is appropriate and of generally high quality.  From superficial appearances, although there may have been concerns, these do not seem to be of Willowbrook proportion.

Any time that there are alleged failures in the quality of our care for people who have developmental disabilities we have an opportunity and in fact an obligation to fully investigate those failures.  However, in this instance I have some questions because of the apparent disconnect between the concerns of OPWDD and the general support and concern of families who are generally satisfied with the care that is being provided.

What is the truth?  It could be that the parents are misinformed or not fully informed and that the care at this facility is poor.  That is a possibility that must be considered.  Or it could be that the care is good and that the dizzying complexity of these people's needs combined with the dizzying complexity of the bureaucratic system in which it all operates is making it difficult and perhaps impossible to provide appropriate care.

I don't know what is true - like I said I am only some guy in the community who cares about the issue and reads articles and attempts to get to some source documents.  Here is what is written in the OPWDD fine letter:

A 60-day letter was issued on September 26, 2011, for seven incidents where individuals did not receive oxygen per physicians’ orders. The Plan of Corrective Action (hereinafter POCA), dated November 4, 2011, provides that there will be a “check of the oxygen tank and oxygen tubing throughout each day, by all staff, after any oxygen source transfer is completed and/or any hands on activity is completed, which is documented on the Medical Monitoring Oxygen Equipment Check Form and which includes a verification sign off by second staff.” The failure to follow this measure detailed in the POCA resulted in a 60-day letter, dated December 23, 2011, when an outside vendor was allowed into the home to refill the liquid oxygen tanks without the assistance or involvement of a staff member. A fine in the amount of $1000.00 is imposed for the failure to follow your POCA with regard to oxygen administration.

So when I read this I am a little unsure if people who needed oxygen did not get it - and they were gasping for air and great harm and discomfort was caused.  Or maybe someone didn't get a second signature on verification form. There is kind of a big difference between these scenarios and that is why it is difficult to ascertain the severity of the violation.  Of course all violations have a degree of severity because obviously we have regulations in place for a purpose.

An important consideration that we must not ignore is history.  In 2005, almost exactly seven years ago, ANOTHER local human services agency was having a difficult time with meeting established care standards.  The Cantalician Center for Learning, which is a similarly structured organization, transferred seven group homes over to Baker Victory Services. 

People outside of Western New York need to know that both agencies have deep roots in the Catholic Church and the local diocese.  Both agencies have similar missions regarding charitable works and how they hope to serve the community.  These are not profit motivated institutions that can legitimately be criticized for providing poor care.  Being a religious-based institution certainly doesn't inoculate you against anything but when you start tossing around Father Baker's name in this community it still resonates with people and it still MEANS something culturally.  People trust these agencies, and for the most part I have no reason to believe that the trust has been violated when it comes to the work of these agencies.  That contributes to the difficulty in being able to understand why there are repeated concerns about meeting performance standards.

So if Cantalician had difficulty meeting the standards seven years ago and transferred some responsibilities to Baker Victory, and then if Baker Victory has difficulty meeting the standards and is going to transfer some responsibilities to someone else - I think we need to ask some questions.

Of course the immediate questions have to do with the performance itself within these agencies.  But then we need to balance that against the support that is verbalized from the family members.  How does this square???  Or is there something more inherently incorrect about the way that these services are structured within a larger context?  Are the requirements and regulations too burdensome?  If our culturally iconic institutions fail at providing care within these systems does that mean that we should consider looking also at the systems and whether or not ANYONE will be able to provide "proper" care?

Big questions - I have no answers - but I think we need to do more than just spin the wheels of history and watch this repeat again in another seven years.  That would be the biggest disservice to the people who have developmental disabilities and receive services from these agencies, and indirectly, from us all.