Wednesday, February 15, 2017

Occupational therapy history: A lopsided tale told by the 'designated survivors'



Some overtly prejudicial information has been published about George Barton.  In an officially sanctioned history of the occupational therapy profession, Quiroga (1995) wrote that "Barton was undoubtedly an unusual if not eccentric character, who had difficulty knowing his own identity."  She also stated that "some of Barton's writings may have created more foes than allies to the cause" and that "George Edward Barton was an occupational therapy zealot" with a "near-crusade mentality" who "was undoubtedly a difficult person with whom to work in the organizational phase of the national association" who "did not possess the interpersonal skills that he needed" and "simply did not fit the profile of what his contemporaries considered to be a professional leader."

There is very little evidence to support this level of prejudice.  Quiroga misinterprets Barton's claim to being a 'sociologist' - forgetting to consider his training under William Morris.  She fails to understand and correctly interpret Barton's metaphorical style in his paper, "Inoculation of the bacillus of work."  There is no evidence at all that suggests Barton alienated the broad medical profession.  In fact, his minimal involvement in NSPOT following his resignation makes it nearly impossible to have had some negative impact on the developing profession.

As I have been documenting for the last several years, it is probably very fair to state that Barton was eccentric - but the extreme negativity is unwarranted.  Based on a study of correspondence between the Founders it is more accurate to state that the negative feelings towards Barton resulted from his withdrawal of his participation as an officer, the reluctance of and social mores preventing others to assume leadership roles at the time, and slow revisionism and selective 'remembering.'

Within 15 years of the founding meeting in Clifton Springs, five extremely influential individuals passed away: Barton, Herbert Hall, Susan Tracy, Susan Cox Johnson, and Thomas Kidner.  The truth is that Barton was not even alive long after the founding and could not have had much if any negative impact.  This series of deaths essentially left Slagle and Dunton to tell the occupational therapy story, and even though an attempt was made in 1967-8 at the 50th anniversary to obtain a more accurate picture of what happened around the founding, the effort clearly fell short.

Negative attributions of Barton were reinforced over  time.  In her farewell address to the profession, Slagle simultaneously respected and jabbed at George Barton's legacy:

 "In the words of the first President of this Association, Mr. George Barton, who retained the office six months and resigned because we were in debt $150 (lawyer's fee for legal services and organization papers) and because we saw no immediate way of raising the salary of a Secretary.  "I relinquish the honour of being your officer, proud to have been of any assistance to a cause so noble, and I lay down the office content in the knowledge that it can be more ably filled."

In fact, Barton did not relinquish his office because of the debt itself, but only because as President and Secretary he and Isabel could not take on the burden of fronting these fees by themselves.  Barton resigned his office in a letter to Dunton dated July 23, 1917 where he wrote

After very careful consideration, I have decided not to accept the possible renomination as President of the Society, but to withdraw in your favor.  This seems to me to be the eminently proper thing to do, and it will probably redound to the benefit of the Society.  I am not, of course, withdrawing my interest, and hope to be allowed still some word in its councils. 

In response on July 27, 1917 Dunton wrote to Barton, stating

I am extremely sorry that you should have reached the conclusion that you have, but I hope that you will reconsider it.  I am also sorry that you will not be presenting at the New York meeting.  I hope that you can make arrangements to be present as it seems to me that it would create a bad impression if you are not.  However, you are the best judge of your own conduct as I am not familiar with these circumstances which have brought about your decision.  I naturally feel like calling you and Miss Newton slackers, quitters, etc, but my natural politeness restrains me."

On the same day (July 27, 1917) Dunton also wrote to Slagle stating

I presume you have received Mr. Barton's notice.  I do not know what is the trouble, but am inclined to think that he has grown somewhat piqued.  I had written to him on Wednesday asking him to reconsider his decision of which he had written me, but evidently he had already made up his mind and my letter reached him too late to influence him.  He suggested that I be made President.  I do not want the job but at the same time I think it is very essential that our society be continued.

Barton responded to Dunton on August 8, 1917

I am sorry for the tone of your letter of August 6, and feel that your attitude is most unjust.  Also it seems a little strange to me that you are unable to understand that it is impossible for me to pay the salary of the Secretary of the Society.  When I undertook at your request to get things started and get together, I neither undertook to give up all my life to the Society nor to pay its expenses.

There is no record of the "August 6" letter in the AOTF archives that I could locate.  It may be a date error or there may have been an additional letter from Dunton that is not available.  Either way, Barton was quite clear on why he had to relinquish his office.  It is also quite clear that Dunton was irritated by the action and did not understand Barton's concern.

Slagle and Dunton carried their negative perceptions of Barton forward.  Barton's role in the founding was minimized and sometimes even left out of the history altogether.  Dr. Sidney Licht, a student of Dunton, wrote the following in 1948 even though he had no direct knowledge of Barton at all

This brief history comes to an end with the coining of the phrase Occupational Therapy.  Many non-medical persons have made considerable contributions to the field of medicine and it was left to a layman to coin this term.  George E. Barton, an architect by training, was greatly impressed by the type of work accomplished by Grohman and Hall and helped to organize at Clifton Springs, New York, an institution where by means of occupation, people could be retrained or readjusted to gainful living... Mr. Barton was an extremist and although he contributed much in the way of enthusiasm, he retarded the acceptance of occupational therapy by physicians as a result of his unbounded claims concerning the therapeutic value of work... It would be well to forget all but two of George Barton's words - occupational therapy.

Dr. Licht's comments are all the more curious in consideration of his admitted lack of information on Barton and the founding of NSPOT/AOTA.

George Barton published more early literature on occupational therapy than any of the other founders and was instrumental in coordinating and organizing the Consolation House meeting.  He understood the problem of disability from multiple perspectives, had knowledge of how to start and organize groups, and was motivated by his own spiritual and physical reformation.  Perhaps he was zealous and he was probably eccentric, but neither of those characteristics warrant the negative perceptions that have been published.

The evidence is clear and indicates that he is guilty of a simple thing: he could not afford to front the money by himself to support a fledgling Society.

I understand that some narrative approaches include a degree of sanitizing facts related to personal interactions of historical figures.  However, since so much prejudicial information has already been published about Barton it seems reasonable to delve into source documents and letters between the founders to correct the historical record.

The centennial anniversary of the occupational therapy profession offers a good opportunity to reappropriate Barton's contributions and cast them with a more even-handed perspective.

Since there is ample access to source historical documents, it is not correct to have the narrative dictated by the prejudices of the 'designated survivors.'

References:

Correspondence retrieved from Wilma West library, AOTA Archives, and...

Barton, G.E. (1917). Inoculation of the bacillus of work. The Modern Hospital, 8(6), 399-403.

Licht, S. (1948). Occupational therapy source book. Williams & Wilkins: Baltimore.

Slagle, E.C. (1937). Editorial: From the heart. Occupational Therapy and Rehabilitation, 16, 343-345.



Tuesday, February 14, 2017

The use of online journaling as a qualitative methods datasource


Ongoing ideas re: this topic.  Previously posted (in part) - now with edits and with references updated.
+++
      During the Modern period most people achieved a basic level of education, opening up modes of writing including contexts of first person perspectives and autobiographies.  Weintraub (1995) states “the autobiographic genre took on its full dimension and richness when Western Man acquired a thoroughly historical understanding of his existence.”  Once this level of understanding was achieved it was possible for humans to consider their existence within individual contexts.
     Breines (1989) identifies that “human action can be understood only in terms of the relationships that it generates with the world.”  From a pragmatic perspective, Breines states that a person’s ability to ‘connect’ with the world is dependent upon active and meaningful engagement with the environment.  Not only is this a functional outcome for the individual, but it is also a functional outcome for all of society.  Writing provides a means toward both of these ends as it provides a medium for interactivity between the inner world of ideas and the outer world of reality.  Sartre (1949) stated that all good writing is social writing and is illuminated and constructed through the writer-reader ‘relationship.’   By this definition, I can’t write as a lone individual – there must be some ‘Other’ that answers or responds to my assertions.  In this sense, writing becomes an act of witness, and a medium for self-affirmation.  Modern theorists refer to this as a dialogic learning process (Nour, 2014).
     Even the seemingly disconnected medium of diary writing is a connected social discourse.  This is particularly evident in the opening salutation that is so common in journal writing: ‘Dear Diary…’  Anne Frank addressed her diary as “Kitty” which was a personalization of her discourse where she stated:

It’s an odd idea for someone like me to keep a diary; not only because I have never done so before, but because it seems to me that neither I—nor for that matter anyone else—will be interested in the unbosomings of a thirteen-year-old schoolgirl. Still, what does that matter? I want to write, but more than that, I want to bring out all kinds of things that lie buried deep in my heart” (Frank, 1952).

Although Ann did not believe that anyone would be interested in her story, her diary has been translated into nearly every modern language.  
     An appropriate following question would be ‘Why would people be interested in the private writings of another person?’ Bunkers and Huff (1996) explain that "diaries are not so much inclusive because they contain everything from a given day, as they are inclusive in the sense that they do not privilege 'amazing' over 'ordinary' events."   This celebration of the ‘ordinary’ is a longstanding theme in understanding meaningful occupation.  Diary writing and diary reading provides a vehicle of social connectedness through the ordinary.  This is a human need and is the basis of interactivity between the writer and the reader.
     The use of the diary as an interactive tool provides an example of what Rowles (1991) describes as a ‘surveillance zone,’ or an extension of personal space that has multiple uses.  These zones surround individuals and act as an area of potential socialization and contact with others.  Through the use of a diary, a surveillance zone may serve as an extension of a person’s self-definition and identity.   Reflective journaling has been used by educators as a learning tool.  Thomas (2015) used journals to collect qualitative data on the experiences of nursing students.  The widely cited Kolb Model (1974) has reflexivity embedded in the learning cycle; journaling in all of its forms meets the criteria for reflective methodology.  As an additional example, Garrouste-Orgeas, et al (2014) demonstrated the power of journaling in an ICU context and how a collective diary helped to facilitate communication and develop an ongoing narrative about experiences shared between families and staff.
     Online diaries provide a postmodern methodology for studying social spaces and interactions.  The term ‘postmodern’ is appropriate in this instance because it describes a virtual context where local environments and local relationships are no longer the basis of interactivity.  Rather, people congregate online at virtual places (websites) where information is shared and where writing occurs.  The nature of online interactivity includes, or even forces, dependence on the written form for communication.  Some researchers are beginning to explore virtual methods as a good source for narrative data for research studies.  Henker, Whalen, & Jamner (2002) identified anxiety patterns in a population of teenage girls through analysis of online journals and later adapted this virtual  technique to monitor the caregiving stress of parents who have children diagnosed with ADHD (Whalen, Odgers, Reed, & Henker (2011).  
     The proliferation of online writing anecdotally attests to the enjoyment of interactive journaling in a virtual context.  In addition to online diaries there are other ways that writing can act as an extension of Rowles’ ‘surveillance zones.’  For example, Stern (2002, 2004) discussed the opportunity of the Internet home pages as a forum for young women to create a narrative of their experiences.  This narrative becomes a performance of their lived culture and provides a means of self-expression.  Chandler (1998) applies the Levi-Strauss concepts of bricolage in describing the process that people use in construction of their online identities through authorship of their web pages.  The new virtual context, essentially described by its reliance on the interactivity of writing on the Internet, is a powerful and important forum for individual self-expression.  Dillon (2010) expanded on this method by using online journaling in place of interviews for understanding the self-identity construct in adolescents.    It is interesting to note that online journaling was initially studied in context of teenage girls and college student learning; researchers are still developing best methods for advantaging these large datasets for other populations.   
Conclusion
        The Internet will continue to have a significant impact on the occupation of writing in the future.  Hypertext allows people to write in a non-sequential post-structuralist format, such as was advocated for by Derrida; hypertext also meets the demands of multivocality, intertextuality and de-centeredness (Landow, 1992).  Individual self-determinism in narrative construction is important to consider in context of the ethical reading and interacting of such online datasets (Buitelaar, 2014).   
      The occupation of writing has been critical in social and individual development of human beings.    Writing offers a rich source of narrative information for understanding our historicity and for conducting inquiries into other occupations.  The accessible format of online journaling and the associated proliferation of journaling websites are both instant sources of data for qualitative studies. 



References:
Breines, E.B. (1989). Making a difference: A premise of occupation and health, American Journal of Occupational Therapy, 43, 51-52.
Buitelaar, J. C. (2014). Privacy and Narrativity in the Internet Era. Information Society, 30(4), 266-281.
Bunkers, S.L. & Huff, C.A., (Eds.). (1996). Inscribing the Daily: Critical Essays on Women’s Diaries. Amherst: University of Massachusetts Press.
Chandler, Daniel (1998). Personal Home Pages and the Construction of Identities on the Web.  Retrieved on 1/17/17 from http://visual-memory.co.uk/daniel/Documents/short/webident.html
Dillon, L. (2010). Listening for Voices of Self. Qualitative Research Journal, 10(1), 13-27.
Frank, Anne (1952). The diary of a young girl. New York: Bantam Books.
Garrouste-Orgeas, M., Périer, A., Mouricou, P., Grégoire, C., Bruel, C., Brochon, S., & ... Misset, B. (2014). Writing in and reading ICU diaries: qualitative study of families' experience in the ICU. Plos One, 9(10), e110146. doi:10.1371/journal.pone.0110146
Henker, B., Whalen, C.K., & Jamner, L.D. (2002). Anxiety, Affect, and Activity in Teenagers: Monitoring Daily Life With Electronic Diaries.  Journal of the American Academy of Child and Adolescent Psychiatry, 41, 660-670.
Kolb, D. A., & Fry, R. E. (1974). Toward an applied theory of experiential learning. MIT Alfred P. Sloan School of Management.
Landow, G.P. (1992).  Hypertext-The converence of contemporary critical theory and technology.  Maryland: John Hopkins University Press.
Nouri, A. (2014). Dialogic learning: A social cognitive neuroscience view. International Journal of Cognitive Research in Science, Engineering, and Education, 2(2), 87-92.  Retrieved 1/17/17 at  http://ijcrsee.com/index.php/ijcrsee/article/view/119/276
Rowles, G.D. (1991). Beyond performance:  Being in place as a component of occupational therapy,  American Journal of Occupational Therapy, 45, 265-271.
Sartre, J. P. (1949). Literature and existentialism. New York: The Citadel Press.
Stern, S.R. (2002). Virtually speaking: Girls' self-disclosure on the WWW.  Women's Studies in Communication, 25, 223-253.
Stern, S. R. (2004). Expressions of Identity Online: Prominent Features and Gender Differences in Adolescents' World Wide Web Home Pages. Journal Of Broadcasting & Electronic Media, 48(2), 218-243.
Thomas, J. A. (2015). Using unstructured diaries for primary data collection. Nurse Researcher, 22(5), 25-29. doi:10.7748/nr.22.5.25.e1322
Weintraub, K. (1995). Autobiography and historical consciousness.  In R. Smith (Ed.). Derrida and autobiography. Literature, culture, theory #16. Cambridge: Cambridge University Press.
Whalen, C. K., Odgers, C. L., Reed, P. L., & Henker, B. (2011). Dissecting daily distress in mothers of children with ADHD: an electronic diary study. Journal Of Family Psychology: JFP: Journal Of The Division Of Family Psychology Of The American Psychological Association (Division 43), 25(3), 402-411. doi:10.1037/a0023473

Thursday, February 02, 2017

Why occupational therapists need to stop romanticizing about Hull House

The settlement house movement originated in England in the late 1800s and was a mechanism for supporting poor people through social and cultural integration.  The model was translated to the United States by the efforts of social reformers like Jane Addams who founded Hull House in Chicago (later supported by the efforts of future occupational therapist Eleanor Clarke Slagle) and Robert Woods who pioneered the South End House Movement in Boston (supported by the design efforts of future occupational therapist George Barton). 

These efforts were notable for their philanthropic origins; that is, they were primarily funded by the private and charitable efforts of socially-minded people who genuinely wanted to improve the living conditions and outcomes for poor people.  As turn of the century immigration grew the ability of private philanthropists to address urgent needs was strained.  Hull House is a good example of an institution that started off being funded through charity and then later became a focal point for advocacy to the government and eventually a recipient of money spent by the government on social welfare efforts.  Unfortunately, Hull House also became a model for the problems associated with replacing private charity with unreliable and strained government funding.  Hull House 'ran out of other people's money' in 2012.

Occupational therapists have been proud of their historical association with Hull House in particular (and perhaps unaware of even earlier association with the settlement movement in Boston).  On the recent Rose Bowl parade float that was largely sponsored by occupational therapists, Hull House was featured prominently on the design of the float.

Romanticizing refers to a mindset of describing something in an unrealistically inflated manner.  The efforts of the settlement house movement are something to be celebrated, but more importantly they are something to be critically appraised because in some ways our society in the United States again has issues to contend with regarding poverty, immigration, and assimilation - all of which were issues that the settlement house movement were designed to alleviate.

There is a hue and cry from many modern day people who share the spirit of Jane Addams - people are currently concerned about the official stance of the United States related to immigration policy.  However, outside of political theater related to safety and security, there is also the reality of funding - who will pay if the United States continues a trend toward open immigration?

People like Jane Addams and Louise deKoven Bowen poured their family fortunes into their philanthropic efforts - before they turned toward lobbying the government (and other people).  This is a significant disconnect in the argument of current open-immigration supporters.  It 'feels good' to support the ideas of open immigration but there is not a lot of evidence of personal investment other than social media rantings - now popularly referred to as 'hashtag advocacy' or 'elitist slacktivism.'

The issues are very real in some communities - Buffalo's Lafayette High School has been turned into a modern day settlement house community - except that there is a disconnect on philosophy and funding to sustain the effort.  A balanced perspective will identify the good intentions and solid efforts of local folk who are trying to make things work, but critical analysis also indicates the severe strain that is created by elites who would locate these new 'settlement houses' in places where they are not living themselves - burdening the already strained communities that can ill afford the attempt.

What happens to the existing population that was strained at the start of the new settlement house movement?  Occupational therapists should care deeply about this problem.  As an example, children who were already socioeconomically disadvantaged were living in those areas, with corresponding higher rates of learning difficulties and need for educational supports.  Getting services for that population was already difficult - and is now exponentially complicated by introducing a population of distressed refugees.  This is a recipe for social disaster.

Here is a street level perspective of the problem: in a 30 mile radius of my private practice I have wealthy families in suburban districts who seek out occupational therapy services for children who have (relatively) minor incoordination or attention problems - and they are accustomed to their school districts being responsive to their (relatively) minor concerns.  Also in this 30 mile radius are schools that can't cope with the problems associated with immigration efforts. There is very little hope that anyone can receive help in these schools.

There is nothing romantic about a historical connection to a settlement house movement particularly when the modern day incarnation of these efforts is the source of so much human suffering and societal strain.

It is easy to make a float and it is easy for suburban districts that are 90%+ white and middle to upper class say 'We support ALL people.  OUR schools are welcoming to EVERYONE.'  That is the definition of hashtag advocacy and elitist slacktivism.

If the occupational therapy profession wants to celebrate settlement houses and if they want to support open immigration policies then its members should come to Buffalo NY or work in similarly distressed communities.  What is the current reality?  Non profit human service agencies struggle to find people who are even willing to enter these neighborhoods.

That is not a demonstration of values consistent with Hull House.



References:
Please read embedded links - all containing very important context.

Wednesday, February 01, 2017

The problem with a Mad Libs approach to advocacy

 People commonly receive notifications from membership associations or advocacy groups asking for support of a cause. Typically, all that the recipient of such a request needs to do is fill in their name and address. A letter will be auto-generated to some political representative and it is generally the hope of the advocacy group that enough people will behave like lemmings and will answer the call to send in the letters.

I call this ‘Mad Libs’ advocacy because people are expected to look at the blank line in the ‘From:’ category and willingly offer their name and information, much like you had to provide nouns, verbs, adjectives, and adverbs for the popular template-based word game.

Just like Mad Libs, people often don’t deeply study the content that they are signing their names to, or they simply trust the advocacy group to be asking for something that they supposedly would support. Unfortunately, people might often be surprised at what they are signing their names to when they fill in the Mad Libs advocacy forms.  Technically the forms are editable, but how many people really edit these forms?  Most just type in their names and click 'SEND.'

When they do so, the results might not be so humorous.

One example for occupational therapists to be concerned with is the current American Occupational Therapy Association call for advocacy about the Affordable Care Act repeal. Here are some basic concerns with the phrasing of their Mad Libs Advocacy Action:

1. They ask that any repeal and replace approach should not disrupt stability of costs and coverage in the current market. That is impossible, because any change will obviously lead to some degree of disruption – even if it is carefully constructed. What they fail to acknowledge is that the IMPLEMENTATION of the ACA itself caused severe disruption and was clearly based on misinformation – e.g. ‘If you like your doctor you can keep your doctor’ or ‘If you like your plan you can keep your plan’ or ‘Most people will see their insurance premiums decrease by $2500 annually.’ To believe that some basic requirement of repeal and replace plans should be that it will somehow be less painful than the disaster that the law caused upon its construction is ridiculous. Change will be disruptive – and requiring no disruption is naïve and disingenuous.

2. They ask that repeal and replace should assure access to affordable health insurance. That is another impossible requirement. The ACA itself did not assure access to affordable health insurance for many people. In fact, premiums, deductibles, and co-pays went up for many people. There is no way to assure that health insurance will remain affordable for everyone, even in a reasonably constructed plan. It is another impossible requirement that even the original law did not achieve.

3. They ask for meaningful coverage and benefits so that people can receive services and live healthy, independent, fulfilling lives. This is another impossible requirement that the original ACA did not achieve. ACA recipients have a hard time finding MDs and other providers because the reimbursements are so low and the networks are so constricted. It makes no sense to demand that a replacement to the law be able to achieve what the original law could not.

4. They ask for certain protections to be continued, like mental health parity, bans on limits, and other elements. Again, these are all things that were not achieved by the ACA. To ask that they be somehow created in a repeal and replace context is not realistic.

In sum, asking for elements to be assured or required or mandated that were not achieved in the original law is simply a call for obstructionism toward a repeal and replace effort. There are probably elements that are relatively non-controversial that many people would be willing to discuss for inclusion in a letter, for example efforts to promote affordable options for some level of continuing coverage in the event of job loss, options to allow parents to keep children on their plans for specified periods of time, or encouragement for coverage of non-controversial elements like options for children or adults who have disabling conditions. These would all constitute ‘safety net’ elements. Although some people would do away with all governmental assistance it is probably true that most people have some level of tolerance for basic levels of support in some of these instances.

That is very different than asking your members to sign a letter requiring improvements that are impossible.  The AOTA and other advocacy groups would be better off encouraging dialogue about basic elements of our health care system that a plurality of its members could actually support instead of creating a soapbox of obstructionism and saying that any repeal and replace has to do things that the original law couldn’t even accomplish.  This current effort does nothing to educate members on initial problems that the law attempted to solve, the ways in which it succeeded and failed on different levels, and how to responsibly advocate for changes that are aligned with the free thinking of individual members.

I encourage people to study the impacts of the ACA carefully and consider its impact on themselves, their communities, and their patients. Study the possibilities for replacement elements that might help to improve the health care system. Most importantly, people should be FREE THINKERS and consider their own personal belief systems and what role they believe our government should have in health care. Undoubtedly, some will feel differently than others. Individual opinions based on individual study should be the goal, no matter what those opinions are.

Even more importantly, there should be a halt to Mad Libs Advocacy where all you have to do to ‘participate’ is to type in your name and push a button. These issues are more complex than all of that. When advocacy is reduced to the mass mailing of obstructionist pablum that is fed to us from a membership group we don’t demonstrate any respect for our colleagues and we don’t demonstrate any respect for our civics and we most certainly are not trying our best for our patients.


Saturday, January 07, 2017

Deconstructing the myth of clothing sensitivity as a 'sensory processing disorder'


Please note first that there is no formally recognized clinical designation of  'sensory processing disorder.'   It is a term constructed by occupational therapists that has not been formally recognized by the larger medical community.

In our clinic we receive many referrals from local pediatricians when parents have concerns about children being overly sensitive to their clothing.  Most often the children referred are from four to seven years old and the families are severely disrupted by the children's behaviors and responses to clothing issues.  Commonly, children will have severely constricted tolerance for certain outfits, want to wear the same clothes repeatedly, complain that clothing is itchy/scratch/bumpy/wiggly/ouchie, and this all leads to disruption of daily dressing routines.  There is no doubt that the behavioral concerns are very real.

The pediatricians tend to be appropriately conservative and provide families with good behavioral management suggestions before making a referral.  Families are very challenged with managing the problem and often resort to online assistance before being referred to us.  Most parents have already completed sensory questionnaires online, tried seamless socks, and read books on sensory sensitivity in children long before they ever come in for an occupational therapy evaluation.

The pre-conditioning that parents receive online is unfortunate because one of our first objectives in assessment is to inform the parent that it is important that we don't want to fall into the trap of trying to identify the nature of the problem before we even complete any testing. 

For this reason we do not have the parent complete any sensory-based questionnaire in our office as we find that these assessments serve as a point of confirmation bias as soon as parents begin to answer the questions.  Instead, we complete these assessments last - after all other observations are completed and after we have already discussed results of other tests with the families.  We also have the parents complete these assessments remotely via computer administration to encourage as much neutrality into that line of questioning as possible.  Even when we get the results, we tend to give them very little weight given their tendency for confirmation bias.

It is critical to inform parents that most children who have sensitivity to clothing do not have any 'neurological-based sensory processing disorder.'  We carefully educate parents and help them to understand that the presence of a neurological condition would be supported if the child has accompanying deficits in motor skill, motor planning, attending, socialization, and learning.  So, for all children who are referred because of 'clothing sensitivity' we complete a thorough developmental assessment including motor, language, cognitive, social, and adaptive domains.

We are also very careful to educate parents that there are no unique sensory receptors that respond only to clothing, or that only respond to certain kinds of clothing, or that only respond to certain kinds of clothing in the morning when a child is getting ready to avoid missing the bus.  It is also important for occupational therapists to reflect on their training in anatomy and neuroanatomy so that they remember tactile processing pathways, affective limbic connections, and neural regulatory mechanisms.  It is difficult for a therapist to justify calling a clothing sensitivity a 'neurological tactile defensiveness' if they spend any amount of time reflecting on evidence associated with neuroanatomy and behavioral correlates.

There are thankfully only a very few children who, when tested, exhibit concerning delays in these other areas.  Such children sometimes go on to have diagnoses of autism or dyspraxia or attention deficit disorder.  In our experience these constitute an extreme minority of the total population of children who have clothing sensitivity.

The vast majority of children do not have any corresponding developmental delays.  They are sometimes 'slow to warm up,' have some mild socio-emotional delays (people often use the word 'immature' but I am not always happy with the negative connotations of that term), or have some mild degree of anxiety or obsessive tendencies.  Sometimes they have experienced varying degrees of normal developmental trauma that is not handled well - death of family member, divorce, birth of new siblings, family stressors, etc.  Often it is a combination of many different factors.  The fact that most of these children do not have serious developmental conditions is actually a good thing - and that is something that we reinforce to parents.  At the same time, we are always careful to remind parents that the absence of a serious developmental condition does not minimize the functional behavioral problem that they are experiencing at home.

The vast majority of these situations are easily managed with some parental coaching, some developmental support, and some cognitive-behavioral language re-framing for the children - e.g. "These socks are itching me a little, but that's ok!"  Sometimes for older children behavioral contracts and confidence building positive behavioral support models can be very effective.  Most often we need to de-condition the parents from reinforcing the children's behavioral responses.  All of this can be generally accomplished in a few sessions, at most.

The worst thing that occupational therapy professionals can do to families is to reinforce a mythology that the child has some 'sensory processing disorder.'  This is dangerous because it pathologizes a very common early childhood behavioral response pattern to stress.  It also externalizes the nature of the problem in such a way that the family becomes dependent on the occupational therapy 'expert' who alone 'understands' and can 'solve' the problem.  This commonly leads to over-utilization of therapy which is critical to avoid.

I would like to encourage my occupational therapy colleagues to reconsider the way that  they talk to families about these matters.  There are pages and pages of Google search results that point parents to a mythological sensory 'diagnosis' - and this far outstrips the actual incidence of significant developmental problems that may have sensory modulation difficulties as a feature (e.g. autism).  Again, most children who have these atypical behavioral responses do not have significant developmental delays.  The pages and pages of Google search results should reflect positive behavioral supports and cognitive-behavioral reframing and parent training.  Google search results should accurately reflect the actual nature of the problem - which is exaggerated behavioral response to contextual developmental stress.

This post is my effort to change the online narrative that unnecessarily pathologizes this issue as a 'sensory processing disorder.'   This too often unnecessarily sends families down the rabbit hole of a 'diagnosis' that is not accepted by other medical professionals.  Proper framing of the problem leads to appropriate conservative treatment approaches.  This should be the goal for all occupational therapists.

Thursday, December 22, 2016

Isabel Gladwin Barton: Wife, Helpmeet, and Collaborator

According to publicly available records and genealogy databases, Isabel Gladwin Newton was born on July 21, 1891, in Geneva, New York, to Mary Risley Gladwin, age 24, and Frank Ellsworth Newton, age 28.

Isabel Gladwin Newton met George Barton when she was twenty five years old and working as a bookeeper in a preserving and canning plant.  She responded to his contact and offer for work; she reported being particularly motivated by the salary of $15 per week, which was more than her $11 weekly salary at the plant. She began working for him on August 1, 1916. (Barton, 1968).

She reported being "drawn to him from the very first" and immediately began acting as his secretary and helping him with the publication of several articles and books.  She also provided significant material support to Barton in helping to manage his correspondence and organize materials for the First Consolation House Conference and founding of the National Society for the Promotion of Occupational Therapy in March 1917.

Prior to this she did not have experience with occupational therapy.  At the presentation before the Western New York Occupational Therapy Association at the Clifton Springs Sanitarium on May 16, 1947, she stated

To go back to the calling of the conference at Consolation House prior to the formation of the National Society, Mr. Barton had contacted four leaders in their various fields, and so it was that these five zealous workers in the subject, with a very young, most inexperienced though intensely interested sixth, the young secretary, came together at Consolation House in March 1917.

She served aptly as the first secretary of the National Society of the Promotion of Occupational Therapy.  Review of the correspondence between Barton and Dunton at the time indicates that Isabel Newton was able to effectively coordinate the development of mailing and membership lists, dues collection, and many other tasks that were critical for the new profession.  In fact, following her resignation, it is clear that the record keeping associated with the group was a significant challenge for her successors.

Isabel Newton married George Barton on May 6, 1918.  She continued serving as secretary to George Barton and Consolation House.  In Barton's book, Teaching the Sick: A Manual of Occupational Therapy and Re-Education, he dedicates the book to Isabel and writes:

To Isabel Gladwin Barton
My Wife, Helpmeet, and Collaborator

All of this evidence indicates that Isabel Gladwin Barton, although young and inexperienced and certainly not a luminary in any field such as nursing or medicine or social work or teaching or architecture, was still a critical point of support for George Barton.  George had ongoing challenges with disability and there is no doubt that his wife Isabel helped him to achieve the goals that he set out for himself.

The November 2013 AOTF Research Resources has a column entitled Occupational Therapy: History in Focus.  That article includes an inaccurate description of Isabel Barton.  The article states

Every dutiful occupational therapy student is led through the profession's "catechism" of history; typically memorizing the names of the OT founders pictured in the famous photo shown here. Of course, serious students know that some of the key players responsible for occupational therapy's emergence are not even pictured; and one who was pictured (Isabel Newton, secretary and paramour to Mr. Barton) was largely incidental. 

I believe that use of the term 'paramour' trivializes the important work that Isabel did for the National Society for the Promotion of Occupational Therapy in general and for George Barton in particular.  Following her husband's death she withdrew from active participation in occupational therapy, focusing on raising their young child.  She regularly followed the developments in the occupational therapy field and as noted above was called upon to present the history of the occupational therapy founding at several important events (30th anniversary, 50th anniversary).

Isabel was not just a secretary, as her husband George noted in his book dedication.  She was a dedicated parent, an accomplished seamstress, a faithful correspondent, and she loved her parents and other family members.  She was also fiercely independent and took care of Consolation House on her own for many years.  At the end of a long day after her son was asleep she would read books deep into the night and she would also indulge in going to the movies, which she loved.   She also remained deeply in love with George, and celebrated their wedding anniversaries long after his death.  These details were all made available to me as I have had the privilege of reading five years of her personal diaries.

Isabel Gladwin Barton was recently named to the AOTA 'Influential Persons List.'  Her support for George Barton and the skill that she brought to her role as Secretary of NSPOT was certainly not incidental.  Her appearance on this list is an honor that is deserved.


References:

American Occupational Therapy Foundation (2013, November). OT: History in Focus. Downloaded from http://www.aotf.org/Portals/0/documents/News/Research-Resources/November%202013%20Research%20Resources.pdf

Barton, G.E. (1919). Teaching the sick: A manual of occupational therapy and re-education. Philadelphia: WB Saunders, Co.

Barton, I.G. (1968). Consolation House, Fifty Years Ago.  American Journal of Occupational Therapy, 22(4), 340-345.

Newton, I. (1917). Consolation House. The Trained Nurse and Hospital Review, 59, 321-326.

Tuesday, November 29, 2016

Guest entry: Taking a stand for patient safety with the Hospital Readmissions Reduction Program

A number of my students at Keuka College have been working on policy and advocacy projects that I wanted to share.  The students researched a topic of their interest, met with their legislators, and developed a broad action plan to increase awareness of their topics.  

This information in the form of a narrative blog post is provided courtesy of a graduate student who is interested in promoting increased awareness of impacts of the Hospital Readmissions Reduction Program.  Because the author only has fieldwork experience and the facility or patient could be possibly identified, with the student's permission I have conducted my standard 'ABC Therapeutics mash-up' of details and narrative so that the intent of the experience could be expressed while maintaining confidentiality. 

In school occupational therapists learn all about diagnostic conditions.  They also learn about ways that people might have difficulties with their occupations.  Occupational therapists also learn how to assess and treat those people so that their conditions will not limit them in the future.

Occupational therapists also learn that some conditions are acute, that some are chronic, and that some are progressive.  None of that really matters though because the best thing about occupational therapy is that knowledge about disability can be matched to the patient’s need, no matter where they are in this process.

That is how it is supposed to work.

These skills that I learned in occupational therapy school did not prepare me well to respond to the needs of one of my patients on my Level II fieldwork.  I completed my fieldwork at a large hospital and I saw people with common diagnoses including heart and lung diseases, joint replacements, and similar acute conditions.  Unfortunately, I learned that a person's care is not always determined by what I think is most appropriate as a professional.

The pace of work at the hospital was fast and the evaluations were simple, but functional.  One aspect of my experience that I did not expect was my work in the hospital’s emergency department.  When a patient entered the ED, the doctor would write an order for an occupational therapy evaluation. The occupational therapist would ask the patient about their home setup and prior level of function as well as have the patient complete simple ADL tasks and transfers. Throughout the evaluation, the occupational therapist would assess the patient’s cognition and safety awareness as well.  Was the patient able to safely complete essential ADL tasks? If not, the occupational therapist is responsible to document that the patient is functionally unable or unsafe to return home and must document appropriate discharge recommendations.

I learned that in October 2012, Section 3025 of the Affordable Care Act added section 1886(q) to the Social Security Act, which established the Hospital Readmissions Reduction Program. This program was established with the purpose to reduce hospital readmissions – which is defined as an admission to the same or another subsection hospital within thirty days of an initial hospitalization.

The purpose of the program is to improve quality of care and to  reduce Medicare spending. Under this program, Medicare payments to many hospitals across the United States are deducted three percent to hospitals with ‘excess’ readmissions.  The program specifically looks at the kinds of diagnostic categories that I saw on my Level II Fieldwork, namely heart failure, myocardial infarction, pneumonia, COPD, THA/TKA, and CABG.

During my Level II Fieldwork, I evaluated many people; however, there is one person who literally and figuratively 'stands' out.

Mary came to the emergency department with complaints of severe pain in her hip after a recent hospitalization for a total hip arthroplasty. Mary is an active and healthy 66-year-old woman who had a big personality and even bigger life responsibilities.  She is a caregiver for her disabled spouse, watches her grandchildren during the week, volunteers at the local library, and enjoys socializing with her friends. She had a small physique, but her personality was oversized! She was very friendly!

"I have to be independent," Mary told me during the evaluation.  "My husband had a stroke and he needs me - and what would my babies do if I didn't watch them?"   I loved how she called them her babies, even though she was the grandmother!

During the evaluation, she had difficulty with simple dressing tasks using adaptive equipment.  She was also unable to transfer to or from the toilet. In fact, when asked to demonstrate, she unsteadily stood facing the toilet with her hands on the wall as if she was getting arrested and her legs apart straddling the toilet as if she was aiming at a target.

My immediate thought was, "How is this safe?  And if she is this unsteady, how is she able to do all of these other tasks safely?"

In fact it was not safe. I became very anxious thinking of all the things that could go wrong in this situation. Does the walker fit over her toilet at home? If not, does she rely on the wall for support? Where is the toilet paper located? How does she reach the toilet paper if it’s behind her? How does she keep her pants from falling to her ankles? If her pants fall, how does she reach them without breaking her hip precautions or losing her balance?  How is she caring for her husband or her grandchildren when she could not even safely care for herself?

Because of this, I recommended that she receive skilled services at the hospital and then transfer to another facility (SNF) for additional skilled services to maximize functional return and safety.  I based my recommendation on other patients that I saw who were in in the rehab program.  I thought that perhaps Mary just wasn't ready to be home, especially if she was supposed to be the primary caregiver for other people.

However, the hospital disapproved of my recommendation and this caused a lot of tension between the rehabilitation director and my supervisor.  That is not generally a situation that you feel comfortable creating when you are a Level II student!

The rehabilitation director, my supervisor, and myself all met to discuss the issue. It was apparent that the rehabilitation director was using this meeting as a ‘teaching opportunity’ since I was a student, as she stated, “this is the part of healthcare you don’t learn in college.”

This made me feel discouraged and defeated.

Despite my attempts to defend my recommendations, the hospital discharged Mary with a script for more pain medications and outpatient therapy services.

I believe that the hospital's decision to avoid readmission was influenced by the threat of reduced Medicare payments. During the meeting with the rehabilitation director regarding this issue, I was told, “it is cheaper for the patient to receive outpatient services.” I left the conversation feeling frustrated.

Whose needs were met in this situation - the patient or the hospital?

Instead of focusing on the patient and her needs, which we are taught to do in school, the hospital is focused on financial incentives or penalties. This not only affects the patient as it puts her at a higher risk for falls at home or other serious injuries, but this also affects the occupational therapist who is held accountable for discharge recommendations.

Overall, I understand the importance of reducing excessive and preventable healthcare spending, which is the primary goal of the Hospital Readmissions Reduction Program.  However, I believe that hospitals should not solely focus on the financial penalties imposed by the Centers for Medicare and Medicaid Services (CMS) nor that occupational therapists decisions should be influenced by this policy.

Instead, both hospitals and occupational therapists should focus on providing appropriate, quality care to patients in need of skilled services.  Patients like Mary rely on our ability to make decisions and recommendations that are in their best interest, and not that are influenced by the bottom line of some hospital's balance sheet.