Thursday, June 22, 2017

Case study: Demise of a professional membership organization

Unless there are dramatic changes in statistical trends, the New York State Occupational Therapy Association may face insolvency and may be forced into dissolution in the very near future.

Two years ago I reported that the NY State OT Association was at a critical juncture. At that time, only 4.4% of all NY practitioners were members of the group.  During the period of time from 2006 through 2014 NYSOTA OT/OTA membership declined 24%.   The decreasing trend of participation is continuing.

According to statistics published by NYSOTA, now there are only 379 OT members and 120 OTA members.  In consideration of the total of OT practitioners in NY State (17,318 total) that is a membership participation rate of 2.9%.  This is decreased from the rate two years ago of 4.4%

According to publicly available financial information (Form 990), NYSOTA's net assets are in free fall.

2012        $180,045
2013        $135,154
2014        $107,234
2015        $  88,333

Percentage change over this period of time: 51% decrease

Additionally, management fees, NYSOTA's largest expenditure, are increasing dramatically:

2013: $56,000
2014: $74,980
2015: $75,000

Percentage change over this period of time: 34% increase

Membership revenues are flat.  NYSOTA is currently relying on revenues from its annual conference in order to sustain itself.


1. Convene the NYSOTA Board and create a dissolution review committee that can begin to evaluate the potential to sustain the organization.

 2. The current governance structure is failing.  Consider changes to the Bylaws to re-create a representative structure. Organize the structure around schools that are geographically distributed throughout the State. Have each school comprise a council that can be no more than 49% academicians. The other 51% of each local council can be public members, clinicians, or other stakeholders.

3. Create a new NYSOTA Board structure that is strategic (not operational) in its purpose and has representation from each local council. Again, limit academic power on the executive board, no more than 49% composition.

4.  Immediately engage an efficiency and ethics review process for all contracts within the organization - particularly the management contract. Establish a timeline for re-negotiating contracts as possible with approval of a newly constructed Board that is operating under newly constructed bylaws.

5. Offer free membership to every OT practitioner in NY.  Invite donations to help during the transition period.   Open up all processes for full transparency.

6. Focus short term efforts on the annual conference because of its historic revenue generation.


This information is all cited from publicly available documents and represents a cautionary case study for anyone interested in the challenges of operating a professional membership association.  OT practitioners in New York State and elsewhere require robust organization in order to address legislative and policy issues that will impact practice.  The current member organization is failing and this places all practitioners at risk in New York State.  The significance of this problem can not be overstated.

Saturday, June 03, 2017

OT History in Clifton Springs!

A group of people made OT History today - pulling off an amazing day of celebration in Clifton Springs that was enjoyed by so many attendees.

Eighteen months ago I started corresponding with Steve Egidi, an occupational therapist and Vice President of the Clifton Springs Chamber of Commerce.  He invited me to join a working group that was forming to help make plans for  the 100th OT Anniversary Celebration in Clifton Springs.  Steve was a steady organizing force for the group and it was a real pleasure getting to work with him.

Also from the Chamber was Jeff Criblear, President of the Clifton Springs Chamber of Commerce.  Jeff did amazing work with restoring the 50th anniversary plaque and also helping to coordinate so many of the Centennial celebration activities with the Clifton Springs community.

The glue behind the entire project was undoubtedly Jamie Noga, Coordinator from the Clifton Springs Chamber of Commerce.  Jamie did it all - she kept us all organized and on track, managing all of the details behind the scenes.  Jamie was fantastic!

Jim Conners, Clifton Springs Village Historian was also a pleasure to work with - and his work in creating the occupational therapy exhibits at the museum with the staff there was fantastic.

Les Moore, from the Clifton Springs Historical Society, also made many valuable contributions to the group - most memorable to me was delivering the graveside memorial service that we held with the Barton family the morning of the event.  It was such a moving service and it was a memory that I will cherish.

Corky Glantz, also an occupational therapist and former AOTA Board member, joined our group and was very helpful in communicating with AOTA.  We have Corky to thank for helping to initiate contacts and coordinate those efforts.

Linda Shriber, occupational therapy program director from Nazareth College, also provided invaluable guidance and support for the entire project.

Rochelle Marx-Asher, occupational therapy fieldwork coordinator at Bryant and Stratton College was critical in helping to organize student volunteers for floats and also for helping to coordinate entertainment for the event (by volunteering her husband!)  The music was fantastic!

My own part was small, but I got lopsided media face time for the project since I was the one who did the presentation during our ceremony today and did a few interviews with local media outlets.


There are so many others - the Keuka College students who 'ran security' in front of Consolation House, the Nazareth and Bryant and Stratton students who ran the 'kids tent,' the Utica College students who marched in the parade, the Orange Community College program that made a float, the SUNY at Buffalo students who made a float, representative from NYSOTA that marched in the parade, and representatives from AOTA who served as Grand Marshals and who also gifted the community with a 100th anniversary plaque, donated the 'Flat' Founders and banner, and also gifted the community with a new seal (that is another story!).


Thanks also to the OT community who came and celebrated, and especially to the Barton family who came and shared stories and fellowship.  I also want to thank Karen and Patrick Boland who were so gracious in allowing us to visit their home (former Consolation House).


I hope I have not forgotten anyone.  I will certainly edit this if I have made any accidental oversight.  We made OT History today!  Thanks to all!

Saturday, April 15, 2017

Re-post: The Passion from a kid's perspective

A story worth re-posting:

A fairly standard component of my pediatric occupational therapy evaluations is to ask the child to draw a picture of themselves. This assessment technique provides an opportunity to evaluate the child's skill with writing and also is a functional assessment of their cognitive and perceptual ability.

Sometimes kids draw things that just beg to be probed and questioned - as was the case recently. I watched intently as 6 year old Patrick drew a representation of himself, but then he began adding odd details to his picture. First he colored dark spots on his figure's hands and feet, and then added a row of X's across the forehead.

I leaned forward and quizzically asked, "Patrick, what are these marks here?"

He looked at me for a moment and then responded: "Jesus died for you, you know. He got nailed to a cross, in his hands and his feet. My Dad said that he had to wear prickers on his head and it made him bleed."

"Oh," I replied, not knowing what else to say. I figured he was hearing about the Lenten season and Easter. "Keep drawing, Patrick," I added. I was curious about what else he would add to his picture.

I wasn't disappointed. Patrick added a few more shapes to his drawing. The first looked like a cross, so I asked him "And what is this?"

Patrick didn't disappoint my curiosity. "It's the cross, Dr. Chris. That is where Jesus died. And this is all the people that wanted him to die, but now they are really sad." He added a few sad faces to the drawing, around the base of the cross.

At this point I wasn't really looking at his drawing ability; I was just interested in how much this very young child knew about the Passion. These are the kinds of things that can add a lot of texture to an assessment.

I pointed to the next shape, expecting him to tell me that it was where Jesus was buried, and where he rose from the dead. "Tell me, Patrick, what is this over here?"

Patrick looked at me as if I flew in from another planet, and with a look of disbelief on his face he said, "Dr. Chris... That's a square. Don't you even know that?"

These are the things I learn from the children I work with.

Wednesday, April 05, 2017

The meaning of a word cloud

This image caught my attention when I attended the Presidential Address at the AOTA national conference in Philadelphia last week, and it has been tweeted around in occupational therapy circles since that time.

The question is - what does it mean?

The AOTA president discussed population health as a concept that she believes will be integral to occupational therapy's future vision.  Unfortunately, this vision has more to do with a misguided alignment with payment models (Triple Aim) than anything to do with patient care.

This unusual vision has been promoted by other occupational therapists and also discussed extensively in this blog here and here and here and here, to link a few.

What exactly is the meaning of this word cloud?  The initial intent of word clouds was to provide a base narrative analysis of content within written text.  Even at their best they are crude, because the words are presented in a decontextualized format.

In this example the word cloud is a manipulative message driving tool that is mis-used to promote certain ideas over other ideas.  In this particular representation we are led to thinking that 'Population Health" is an important concept and related critically to other concepts including "Care Coordination" and "Triple Aim" and "Outcomes" and "Patient Centered."

The words are neatly arranged in appealing colors and in various sizes so that certain messages will catch our attention.

But what is the source of the data that is used to populate the word cloud?  Are we supposed to believe that these words represent occupational therapy practice?  Or occupational therapy values?  Or something that some academic dreamed up after nodding off during a Donald Berwick lecture?

We are never given that information.   We are simply presented with words, and led to believe that they are important.  We are led into a state of obsequity, and it is assumed that we should just trust the messenger.

In a presentation at the 2015 OT24VX online conference I stated that some occupational therapists are promoting a Fourth Paradigm concept focusing on population health and its relation to the "rights" and "justice" framework.  The occupational justice paradigm, represented in a General Systems Theory framework, looks quite different from the contemporary paradigm that focuses on occupation.  Instead of intervening at the level of the individual the new model suggests intervention at higher levels of social and cultural complexity.  These new models all emerged out of the mid-1990s, a time where we have to consider the impact of the Internet and subsequent globalization of the profession.   Through the proliferation of journals and the increased international communication, occupational science became a world-wide academic discipline.  Suddenly we were contending with concepts of occupational justice, sustainability, climate change, and broad public health - ideas that were very new to an occupational therapy context and that don't always have social and political fit across international contexts. Many people question whether these ideas even fit into occupational therapy practice at all.

There is still little agreement among proponents of these models what all of the ideas actually mean or how they are translated into practice to help people and reimbursed by third parties.  In fact the academics are still writing word cloud articles and admitting that their concepts have no logical coherence or systematization for practice (Hammell, 2017).

That does not seem to dissuade the motivated messengers.

edit: (added) Social media chatter apparently precedes action.  I just learned that a group has created a new forum on OT Connections where they can congregate and discuss their ideas.  The group, predictably, is comprised of almost all academicians and will be functionally sequestered and insulated from feedback from the profession at large via the protective membership paywall of AOTA.  During the business meeting at conference we learned that half of all AOTA members are students who are frequently mandated to join by their academic programs, and a sizable but undisclosed number of other members are their professors.  This creates a questionable context to hold a conversation about practice.  Would the group be willing to move their conversation to a place where more practitioners would be more able to participate?

I encourage population health or public health or occupational justice or social justice proponents to stop feeding the profession these word clouds (whether presented at a conference or in an academic journal) and instead try linking these ideas to real practice where they can be tested against reality of specific care contexts.

The proponents of these ideas should also specifically address the many questions that have already been raised.  Practitioners in the US see that social justice was taken out as an enforceable principle in the Code of Ethics.  They have seen a statement on sustainability go up in flames in the RA.  But they still see leaders promoting these same ideas in context of poorly defined population health models.

Proponents of these ideas need to explain the justification for continued adherence to poorly defined ideas that have been the source of significant professional disagreement.


Hammell, K.R. (2017). Critical reflections on occupational justice: Towards a rights-based approach to occupational opportunities. Canadian Journal of Occupational Therapy, 84(1), 47-57. doi: 10.1177/0008417416654501

Tuesday, April 04, 2017

The danger of assuming universal and singular narrative explanations of disability

In a recent article appearing on the CNN website, author Wayne Drash reviews the concept of 'wrongful birth' in context of Lesli, a person who has developmental disabilities.  Drash's profile states that he "specializes in stories off the radar" and that "his passion is to tell narratives about life and the unfolding drama of the world we live in."

It would be more accurate to state that Drash cherry picked one person's perspective and advanced a fiction that serves one ideological perspective.

His initial description of Lesli in his opening sentence tells us everything he believes about her person-hood.  He immediately goes to the 'fetal position' trope that promotes his message of Lesli's helplessness and haplessness.

For just a moment the reader is led to believe that there may be another side of the story to be told as he describes Lesli's joy at having her mother hold her hand - but the author quickly reverts to reporting the pain that Lesli's mother experiences, how she has cried more than anyone how she could barely sleep given the severity of her daughter's condition.  Then we are provided the quote that the mother does not know if her daughter even knows who she is.

The story of Lesli and her mother is framed in context of proposed legislation in Texas that would reverse the decision that allows 'wrongful birth' lawsuits.  Apparently, Lesli's mother won such a suit many years ago based on an argument that the doctor failed to tell her that she had rubella.  The mother states that she would have chosen an abortion rather than "watch her daughter suffer pain."

The testimony in this particular case is that the doctor states he did not think that the mother ever had rubella.  So, there was no 'choice' to offer her.  She won a lawsuit against that doctor for his missed diagnosis.  The money remains in a trust fund for the care of Lesli.

The mother advocated strongly for Lesli over the years, pursuing education related to rubella and its impact on pregnancy, and working to improve the special education curriculum in Dallas and Wichita Falls.

That might have been the narrative for the mother to hold - but her narrative instead is that she wishes that she was never born so that her child would have never been born.

That particular narrative is unquestionably hers to have, but Drash's error is in elevating that narrative without telling any other side of the story.

There is little doubt that this is a story where the mother experiences pain and there is little doubt that she has come to the narrative conclusions that she has come to.  They are as real as the situation that she experiences.  However, that narrative conclusion is not the same narrative conclusion reached by all people.  That is a primary error in this story.  That is also a reflection of the immoral choice  by Drash that cherry picks a single narrative.

What is the alternative narrative?

Lesli's mother might have defined her experiences in terms of selfless love given to a child.  Or of how a single person can take on an entire system and improve education for thousands of other children.  Or of the quality of life that Lesli experiences, exemplified by the simple act of human connection - of holding hands.

We are not given any of that possible narrative because even though these things happened it is not the expressed narrative of Lesli's mother.  Does that mean that the narrative does not exist for others?

All that we are given by the author is that when there is a meaningful interaction with Lesli, she moans.  [emphasis mine.]

"Mom and daughter now hold hands.  Lesli moans."
"Lesli moans through much of the session..."

Lesli's mother has a right to form whatever narrative she chooses.  But there are others.  Not everyone defines their lives in the same way.  Not everyone looks at their child who has a disability and would have chosen elective abortion to pre-empt their perspective on suffering and pain.

If we accept the narrative of Lesli's mother, where are we left?  Would we abort all children who might experience suffering and pain?  Would we eliminate that same pain from our lives?

When we advance a single narrative to the exclusion of others we risk misrepresenting the story.  It is not true, as Lesli's mother states, that people don't care about her daughter.  The article itself reports that Medicare and Medicaid will pay about $200,000.00 for the cost of Lesli's care for the next year.  That policy is an expression of a social value.  That social value is rather clear that many people are caring.

I don't doubt the pain that Lesli's mother perceives, and I am not judging her perspective.  I am just pointing out that it just happens to be a single narrative.  And there are others.

Some parents experience the same pain that Lesli's mother experiences but they do not frame their perspectives in the same way.  In fact, some parents frame their experiences in the exact opposite way and the idea of aborting their child, even though their is suffering and pain, is unthinkable.

The alternate narrative, one that I have had a lot of experience with, reads differently.  The alternate narrative focuses on the love expressed by holding hands.  The alternate narrative focuses on the quality that the child can experience, or the meaning that the parent created out of what seemed like a senseless event.  The alternate narrative sometimes turns the concept of disability on its head and forces everyone else to examine their values!  The alternate narrative does not involve descriptions of fetal positions and moaning.  It is best expressed in the words one parent told me that I will never forget:

So though there were tears, there was laughter more.  
And though there was pain, there was joy more.
And when things seemed bleakest, go... feed the birds.
And the world will right itself.

That is another narrative that exists in the world.  There are undoubtedly even more.  It is good for us to be reminded of this fact when we are reporting on "narratives about life and the unfolding drama of the world we live in."

Monday, March 27, 2017

The Barton Project: AOTA 2017 Conference Handouts

Hi and thank you for stopping here to look at the poster handouts that are being distributed at the 2017 AOTA conference!

If you were unable to get a copy of the handout of the poster presentation, the files below are hi-res JPG scans that you can download and view in a larger format.

This version of the timeline is one small step of a multi-year project attempting to document George Barton's life.  I was always struck by the fact that his life story was documented in such a limited way as compared to other occupational therapy founders.  The lack of previously published information on Barton motivated my effort.

Having personal geographic proximity to Clifton Springs made the project interesting from that perspective as well.

This effort started by happenstance and with a meeting my wife Caroline had with George Barton Jr.'s wife Barbara.  She was kind enough to supply materials to us that started this inquiry.  A visit to Consolation House also yielded results with the owners (at that time) looking to have the occupational therapy community have possession of some additional ephemera.

We accepted these materials with the promise to use them for study and for advancing the biography of George Barton which has previously not been fully highlighted.

Over the last several years I have combined those materials with other biographical research and  began constructing blog posts that are now catalogued under the site.

Over the last year it has been my pleasure to find new friends in Clifton Springs who were planning a 100th anniversary celebration of the occupational therapy founding that occurred in their community.  I am especially indebted to the kind folk associated with the Clifton Springs Chamber of Commerce, the Clifton Springs Historical Society, various community members who are participating on their planning committee, and also some local educators who represent regional occupational therapy programs.  Some of the information obtained through this ongoing project will also be presented on June 3rd, 2017 during the Sulphur Springs Festival that will feature an occupational therapy centennial celebration.

I hope occupational therapists enjoy looking at these pictures and also enjoy looking through the blog and learning more about the history of their profession.  Use the address to navigate to the site, and use the 'Barton' and 'History' links on the blog to find more information.  Many more detailed references can be found at the end of each blog post.

Governor Cuomo and the Early Intervention State Fiscal Agent boondoggle

Another update in the ongoing saga of the failing New York State Early Intervention program:

The Governor's 2018 budget proposal adds new requirements on insurance companies and providers.  Under other circumstances, a provider or fiscal intermediary would simply operate within the available rules that exist in the private marketplace, but since the State has designated a fiscal agent that is unable to compete in the free market, the Governor is forced to rewrite insurance laws in order to facilitate payment.

 In FY 2016, nearly 85% of claims submitted by the Early Intervention State Fiscal Agent to private insurers were denied.  The idea of cost sharing with private insurance has been a failure because the State botched the implementation and has contracted with an incompetent fiscal agent.  The breakdown of payment of Early Intervention costs has been as follows:

Private insurance: 2%
Medicaid: 41%
NY State: 27%
Counties: 30%

This is AFTER the State invested millions of dollars into a private contract for a State Fiscal Agent.  Providers went out of business in this transition and services to families have been compromised because of the ineptitude of the process - and now new laws are being proposed in order to address the obvious failure.

The following new proposals are included in the Governor's budget:

1. Placing new requirements on service coordinators and providers to obtain insurance information and signed IFSPs from referring doctors (attesting to medical necessity).

2.  Requiring providers to exhaust appeals before unpaid balances hit County books.

3. New mandates for payment on insurance companies.

Having a requirement for a doctor to certify that an IFSP is medically necessary is unrealistic.  Additionally, not all early intervention services will fall within the strict guidelines of 'medical necessity' because the program is not only a 'medical program.'  This issue hits at the heart of what happens when States get into the habit of using Medicaid funds for non-Medicaid activities.

These kinds of reforms also become unwieldy and complicated simply because of the existence of the failed State Fiscal Agent.  So as an example, a provider must now exhaust appeals which seems reasonable - but if an insurer is denying payment because the fiscal agent has improper coding procedures or if they are billing under a non-participating provider - it only serves to slow payments to providers even more.

As I have advocated from the beginning of all this, releasing providers to compete directly in the private market and having them bill insurance companies directly would immediately solve all problems with participating provider denials and it would solve issues of odd local coding anachronisms.  The State could be free to negotiate whatever cost-sharing agreement with the insurers, probably through the creation of regional service level caps, at which point the balances would be billed or waterfalled to a centralized New York State reserve fund.  That would remove the Counties and the designated fiscal agent from the equation altogether, saving millions of dollars in program costs and in shifted Medicaid responsibility.

As it now stands, the NYS Senate rejects the Governor's proposals, the Assembly partially accepts them, and the Counties support the proposals but want even more protections in place so that these costs never hit their balance sheets.

What does that mean?  The proposal will be worked out in backroom deals in Albany, and the provider community and families will not have much voice in the process.  The system will continue to fail.

As I have indicated in the past, savvy providers will learn to participate in insurance networks privately (including Medicaid) and will learn to bypass this failed system by seeing families on a private basis.

Read more at these links - and contact your representatives if you want, but the real solution of eliminating the failed State Fiscal Agent and adopting a modified model of privatization as outlined above is not even on the table.

Read the FY 2018 Article VII Bill Health and Mental Hygiene (HMH):

Read the FY 2018 Memoranda in Support, Health and Mental Hygiene (HMH) Memo:

Read the NYSAC Budget Comparison Fact Sheet on Early Intervention:

Saturday, March 25, 2017

Reasons to yawn: Wrap up analysis of two recent SCOTUS cases involving IDEA

On 11/8/16 I wrote

In both of these cases it is important to carefully analyze the details of what is actually being litigated.  So often the truth of what is being discussed gets lost in poor reporting about the topics.  For example, many news outlets focus on the 'evil school district vs. the child in the wheelchair with Wonder the GoldenDoodle' meme instead of focusing on the decidedly less appealing 'what is the importance of due process' angle.

As OTs become more savvy with policy analysis they will avoid the bias-trap of media reporting and try to approach a more 'rational comprehensive' method of considering the actual facts.  They will also become more savvy by dropping the naive notion that just because an issue might have the superficial appearance of something that should be supported, it is important to dive deeply into the actual policy to make sure we are promoting what is best for the people who seek our services.

Turns out that this analysis was essentially correct regarding the separate cases of Endrew and Fry.

In the Fry case the issue at hand turned out to hinge on the concept of 'administrative exhaustion' or whether or not a family had to satisfy IDEA due process rules before bringing an ADA lawsuit.  According to the decision, if the issue is not related to IDEA, there is no such requirement.  In this case the Fry family was not arguing about educational rights - they were arguing about wanting a monetary award for emotional distress.  Since the 'gravamen' of the concern was not IDEA the Court ruled that there was no need to exhaust IDEA due process.

This will have little to no impact on service delivery in school systems.  Over time we may see more lawsuits filed against schools earlier in the process, with savvy lawyers parsing out IDEA concerns and other non-IDEA concerns like 'emotional distress.'  Schools will have to respond differently to the possibility of dual-process complaints.

Bottom line: this was not an IDEA case.  It was a case that outlined rules for lawsuits under the ADA, wrapped in poor reporting and media obsession with the click-bait of little disabled children and their cute dogs.  The media got their clicks, the family got to sue under the ADA, lawyers have new strategies for making money, and the rest of us can go about our work.


The Endrew case was specifically related to IDEA as it wrestled with the central question of FAPE and what was considered 'appropriate.'  There have been a number of interpretations about FAPE criteria - most of the criteria discussed openly in courts but not openly in IEP meetings.  At issue was whether or not a de minimus standard could be considered 'appropriate' and the Court ruled that it was not.

That won't do many families much good because I don't  believe that most IEP teams sit around the table and design plans aimed at that low bar - and even if that is the end result of their efforts you would be hard pressed to ever find that recorded.  Schools will always believe that they are reaching for the stars.  An analysis of the mission statement of any school district shows the public proclamation that the goal is to create exemplary world citizens blah blah blah.

So even if the issue of FAPE came up in meetings before it was generally answered with 'We don't have to provide the BEST program; we have to provide a program they can BENEFIT from.'  In simple terms that is known as the Rowley standard, related to a previous SCOTUS decision.  Again, most school districts do not openly publicize that their definition of benefit is a de minimus standard.

The Endrew case is interesting in that it shuffles the words on FAPE, now indicating that a school has to provide an individualized education program that is reasonably calculated to enable a child to make progress appropriate in light of the child's circumstances.  That is a rejection of the de minimus standard - something that a word-parsing lawyer might argue in court but that I have never heard as a guiding policy around an IEP table.

Unfortunately, from the perspective of real world guidance, now you will hear schools say that their IEPs are designed in light of the child's circumstances and that they are reasonable.  The Court affirmed the role of schools acting in a good faith effort based upon local professional judgement - and specifically stated that they have no interest in developing a "bright-line" standard for schools to follow.  Deference is based on the expertise and judgement of the schools.  Plain and simple.

If you want to understand what the SCOTUS did with this case, look at this video, and imagine the bullets as 'the definition of FAPE'

As such, this decision also will not amount to much.  The definition of FAPE is no more clear today than it was under Rowley.  Perhaps the only thing that changed is that some lawyers will no longer make the de minimus argument.


Neither of these cases will have much lasting impact on everyday work in school systems.  They only clarify strategies to be used and avoided by lawyers when the rare case actually gets into a court.