Saturday, May 30, 2015

Problems about the perception of 'advocacy' for parents in special education contexts


I went to an IEP meeting with a parent the other day and was greeted with hesitance by the occupational therapist on the educational team.

"Why are you here?" asked the therapist.  "Are you here because you are actually treating the child or are you here as an advocate?"

Neither characterization seemed correct.  I paused and thought for a few seconds as I was not sure why it mattered.  I also was not sure if I was free to divulge the information.  I ran for the safest middle ground I could find and responded, "I know the child and I am helping the family."  Both were true.

I know that the word "advocate" is often perceived negatively by school based practitioners.  I have been attending IEP meetings as an 'outside' therapist for over 20 years and I tend to avoid the term 'advocate' because it engenders a lot of negativity.  I see a lot of reactivity in educational teams when an 'advocate' is involved.

Bruce and Christiansen (1988) first promoted the notion of OT as advocate in context of increased sensitivity about word usage and awareness of environmental barriers.  That value was subsumed into the thinking of most OT practitioners over time, but the word "advocacy" made a re-appearance in the second edition of the Occupational Therapy Practice Framework (2007) with a new definition.  In the OTPF 2nd edition advocacy is defined as "The “pursuit of influencing outcomes—including public policy and resource allocation decisions within political, economic, and social systems and institutions—that directly affect people’s lives.”  That is an unfortunate change because without an anchoring notion of what constitutes fair or reasonable allocation it is a little difficult to know where this begins and ends.

The OTPF 3rd edition (2014) redefines advocacy again stating that it includes "Efforts directed toward promoting occupational justice and empowering clients to seek and obtain resources to fully participate in their daily life occupations. Efforts undertaken by the practitioner are considered advocacy, and those undertaken by the client are considered self-advocacy and can be promoted and supported by the practitioner."  This is also an unfortunate definition because of a similar lack of boundary around the limits of seeking and obtaining resources.  These more recent definitions redefine our domain of concern from the needs of an individual to the social justice needs of a population, which is also paradigmatically troublesome for the OT profession.

I avoid the 'advocacy' term because I prefer to understand my role in meetings with parents as one of support and skill-building.  That way I am meeting the needs of parents and children - and I am not caught up in some undefined notion of 'rights' that doesn't really seem to have any boundary.

I don't know if the seemingly unbounded notion of 'occupational justice' is why many education professionals don't like 'advocates.'  A lot of the dislike that I witness has to do with the fact that parents are often asking for 'too much' for their children.  If you pause and think about objecting that parents are asking 'too much' for their children enough you begin to understand that it is a silly objection.  By my thinking this doesn't mean that people should be entitled to anything - but that it is understandable when parents want 'what is best' - again a very difficult standard to put into operation.

These are my ongoing concerns about the 'advocacy' word - it is misunderstood and sometimes maligned by educational staff, and the definitions themselves are not logically compatible with the traditional OT Scope of Practice.

So when I go to IEP meetings I go because parents ask me to go.  I formally evaluate the children so I understand their needs.  I also assess the parent's coping ability and their communication skill - sometimes formally and sometimes informally - and make sure that I am directing all of my efforts in ways that support their interests and objectives.  I also assess the school district and educate myself on the procedural systems related to nuanced delivery of special education within each location.  Then I stand in the middle of all these concerns as they orbit around and do my best to help.

I blogged about the need to support the mental wellness of parents over eight years ago.  Not much has really changed in eight years and I believe that my observations about these needs are as valid today as they were then.  I stated "It is now evident that parents need more directed efforts to support their mental wellness. All occupational therapists who work with children should look for ways to support the mental health of parents."

I think that is why I bristled a little when the therapist asked me, ""Are you here because you are actually treating the child or are you here as an advocate?"  I guess that the therapist hasn't really been tuned in to the needs of parents and couldn't understand why I was involved.

I find that parents are often very anxious about their children's special education programs.  Burke and Hodapp (2014) listed several factors that are present in parents with higher anxiety about school related concerns: autism diagnosis, engagement of procedural safeguards, and increased levels of self-advocacy.  These research findings support my observations.  Harper et al (2013) discussed the value of respite care in decreasing stress and promoting marriage quality for families who have a child with autism.  There is an abundance of literature on the topic of family stress and special education, and that is why it is surprising to have an occupational therapy colleague openly question why I would be at a meeting to help support the efforts of parents.

The idea of an occupational therapist supporting a parent's mental health is often misunderstood by school personnel.  Attending an IEP meeting is the ultimate occupation-based intervention.  The occupational therapist is working in context with the parent to help them develop skills in navigating a very confusing special education system.  Concurrently, that same therapist understands the needs of the child and understands the system in place that has to be accessed to support that child.

School-based occupational therapists, perhaps more than anyone else, should understand and appreciate the efforts of a colleague who is helping a family with the special education process.  The value of doing so from outside of the system-in-place is that I am not 'bounded' by only addressing the educationally relevant needs of the child.  That actually is a very constricted rule-set when you are trying to practice occupational therapy.

Occupational therapists should carefully reconsider the definitions of 'advocacy' as outlined in the Practice Framework.  Those definitions are really not helpful and don't reflect the patient-centered objectives of a therapy process that is oriented to meeting occupational needs.  Perhaps if we defined this term better there might be a little less confusion.

I hope for a day when I walk into a meeting with a family and am not questioned about my intentions and motives and qualifications.  I also hope for a day when the OT profession develops supporting literature that does not confuse meeting the needs of families with driving an advocacy and 'justice' agenda.



References:

American Occupational Therapy Association. (2008). Occupational therapy practice framework: Domain and process (2nd ed.). American Journal of Occupational Therapy, 62,625–683.

American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1–S48

Bruce, M.A. and Christiansen, C.H. (1988). The issue is...advocacy in word as well as deed.  American Journal of Occupational Therapy, 42, 189-191.



Burke, M.M. and Hodapp R.M. (2014) Relating Stress of Mothers of Children With Developmental Disabilities to Family–School Partnerships. Intellectual and Developmental Disabilities, 52(1), 13-23.
 
Harper, et al (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders.  Journal of Autism and Developmental Disorders, 43, 2604–2616.

Thursday, May 14, 2015

A critical juncture for the New York State Occupational Therapy Association

The New York State Occupational Therapy Association is planning to make significant changes to its bylaws and governance in the very near future.  Since so little information has been available on these changes I took the initiative to gather data so that occupational therapists in NY would have more information to assess these proposals.

I will begin my analysis with an apology, because it is my longstanding belief that to be an appropriate critic one needs to be a member of the group that is being held to scrutiny.  For purposes of transparency I will divulge that I ceased my NYSOTA membership approximately ten years ago in protest of inappropriate accounting practices.  However, I remained in close contact with many therapists around the State who continued their participation with the membership association.  Many of these members are currently upset about the proposed changes to governance.  Some don't want to make their protest public and have given me copious information to analyze about this topic.  I believe in transparency and openness that can lead to improvement, and that is why I am sharing the information that was given to me.

To begin with, it is important to know background demographics about occupational therapists in NY State.  According to the New York State Office of the Professions as of January 1, 2015 there were 12,254 occupational therapists and 3,912 occupational therapy assistants.  That is a total of 16,166 occupational therapy practitioners in NY State.

According to NYSOTA documents that I have reviewed, there are 548 occupational therapist members (4.5% of all NY OTs), 168 occupational therapy assistant members (4.3% of all NY OTAs), 1,308 student members, and 19 'other' members.  As students are not practicing professionals they should be excluded from any calculations.  So, there is a total of 716 practicing OT/OTA members (4.4% of all NY practitioners).

Social disengagement in traditional membership structures was brought to the forefront of attention in Putnam's classic work Bowling Alone.  The occupational therapy profession in NY State reflects this trend.  During the period of time from  2006 through 2014 NYSOTA OT/OTA membership declined 24%.  Most of that loss is declining OT membership; in fact, OTA membership increased over that time period.

The challenges associated with diminishing membership caused the American Occupational Therapy Association to attempt governance restructuring several years ago.  Those efforts failed when they were voted down by the Representative Assembly.  Unfortunately, records of those discussions have been purged from the AOTA website and can no longer be viewed there.  My recollection of those conversations are that many people were concerned that elimination of the RA and replacing it with another structure was considered inadequately 'representative' for members.  I always considered it unfortunate that AOTA leaders were not able to successfully explain to members why a different structure was needed, or to present a structure that was palatable.

Based on an analysis of the proposed changes to the NYSOTA bylaws it appears that a similar proposal for governance restructuring is being attempted.  Below are some highlighted and important changes:

Districts are being eliminated.  NYSOTA will be governed by 9 people.  Four will be officers elected by the members, four will be members-at-large elected by the members, and one will be appointed by the elected Board members.

This is a very unusual configuration because the distributed membership around the State is very uneven.  Additionally, allowing the vote of students who represent the largest membership block sets a problematic scenario where academics who know those students and are responsible for giving them grades have a lopsided advantage in elections.  Having one person randomly appointed to the Board is also unusual and leads to questions about why such a configuration would be suggested. Aside from geographic concerns, OTAs are also notably absent from Board representation.

2. Another immediate concern is a proposed change in the stated purpose of the association.  The current bylaws state that NYSOTA is "dedicated to the advancement of the occupational therapy profession and to the improvement of the quality of occupational therapy services."  The PROPOSED bylaws state that NYSOTA will be to "promote the OT profession within the State of NY, to promote and advance education, training, and research in the profession, and to engage in any other such activities determined to be advantageous to the Association and its members."  This is a dramatic and different role for the membership association and completely steers away from the previous purpose that explicitly sought to improve the quality of OT services.

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There are additional troubling elements to this restructuring plan given the historical financial context of the membership association.  There were longstanding accounting difficulties dating back many years and at one point prior to 2006 caused the resignation of the NYSOTA attorney and several members of the Executive Board because of non-compliance with standard accounting practices.  Those concerns were never really explained to the membership and to my knowledge the resignation letters of the attorney and some members of the Executive Board were never shared with the membership.  This was a troubling lack of transparency.

I have been informed by several members that those accounting concerns were remedied by a consolidation of finances that now allows centralized auditing.  That consolidation has not gone without criticism from some districts and members.  A look at the recent balance sheet indicates some concerns.  According to available documents, net income has been in the red for seven of the last nine years.  In the last two years, net income has been near a $60,000 loss each year.  Expenses averaged approximately $100,000 per year from 2006 through 2012, but jumped up above $150,000 for each of the last two years.  Clearly, something is dramatically changing to cause such an increase in expenses in the last two years.  This significant increase is financially unhealthy, particularly given the historical instability of conference revenue which is being relied upon more and more on recent balance sheets.

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The sum of this analysis is that NYSOTA is at a critical juncture.  A governance change that appears to be less representative than before is being proposed, but the previous structure was admittedly unwieldy.  The Board seems to be at war with some of its own districts, stating that at least three districts should have been dissolved according to provision of current bylaws.  That may be true (details are unknown to me at this time), but this is not a healthy situation.

Expenses are rapidly increasing, dues paying membership is rapidly decreasing, and (free) student members inflate the membership rolls.  The very purpose of the association is being re-defined.

My recommendation to the NYSOTA BoD is to slow track their proposed changes and explore new methodologies for inclusive planning to meet this acute crisis.  The fact that several sources from different districts are leaking out documents to me should be an indicator of the heightened dissatisfaction from the dwindling membership that remains.  I expect some criticism for putting this information out for people to see, but my motivation is to create a context where members will be involved, represented, and able to participate in some consensus decision making.  NYSOTA has not been healthy for many years, and a change is needed that will involve a much greater level of participation from ALL OTs in NY State - members or not.

Right now, that is apparently not happening.

As I have previously done, I willingly offer my time and abilities to help solve these very challenging problems.

Friday, May 08, 2015

Social justice in occupational therapy: Where to from here?

After a multi-year debate there was some small capitulation regarding the social justice language in the AOTA Code of Ethics.  The previous section labeled 'Principle 4: Social Justice' was removed and replaced with a more generic section on 'Justice' that focuses on procedural aspects of the Justice construct.  A passing reference to a social justice construct was included in the Preamble.

It is difficult to know if it is even fair to say 'capitulation' because we have not had precise commentary from the Ethics Commission on those changes.  What we have are the comments of the EC Chair Dr. Lea Brandt who stated

It is correct that in the section on Core Values there is still terminology referring to social injustice.   This reflects the membership feedback which called for inclusion of the concept of social justice while tempering that perspective with a group of members who requested to have the term removed.  The term “Social Justice” was removed from the Principles and Standards of Conduct section which outlines the enforceable areas of practice, but was retained in the aspiration section of the Code.  
 In short, standards which contained language that could appear ambiguous to some or more challenging to enforce were removed or modified; however aspirational language related to social justice concepts was relocated to the Preamble section accommodating the large number of requests to strengthen and include this language consistent with the profession’s Centennial Vision.  The intent in doing this was to develop a Code which includes further clarification of the potential interface between the professional Code of Ethics and state licensure laws and the roles and responsibilities of each.

One of the primary arguments about a social justice requirement was that it could not be enforced.  The EC attempted to separate enforceable principles from non-enforceable values but actually created an illogical division that has concepts listed in both.  Obviously, enforceable and non-enforceable are mutually exclusive divisions and that makes the current Code very confusing.

For example, Justice is listed in both divisions.  How can Justice be both an enforceable principle and a non-enforceable Core Value?  An excellent analysis of this illogical classification scheme was posted by Alex Duran and can be viewed here.

I understand the intent to separate Non-Enforceable (aspirational) v. Enforceable ethics, but it appears to have been done poorly.  Perhaps a model that attempts a more clear distinction between the two categories would be the APA Code of Ethics.  The APA Code does not seem to re-label and confuse the two categories.  Rather, the Enforceable Ethics (Standards) are rather specific and relate to very concrete practice and research oriented concerns.

The APA Ethics Director stated "The distinction between aspirational and enforceable is central to the code's structure and differentiates between the ideals and goals to which psychologists aspire and the rules by which psychologists must abide. When adjudicatory bodies blur this distinction, psychologists may inappropriately be held responsible and possibly disciplined for not fulfilling the profession's ideals and striving toward its highest goals."

As the AOTA Code of Ethics is unfortunately embedded in the license law of several states by reference, it is critical that the Code is clear and coherent.  In this there has been a clear failure.

So although there have been improvements with the removal of some of the Social Justice language, large problems have been created with an illogical division of enforceable principles and non-enforceable values.  With functional classification schemes readily available (APA), it is disappointing that this kind of error was made.

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What remains problematic in this entire ethical debate is that there continues to be a disconnect for many American therapists about what the social justice construct actually represents and what it means when it is adopted as a value.  There are some agenda-driven therapists who are fully aware of the implications of their advocacy for a social justice concept but there are also large numbers of people who go along with it because it 'sounds' good.  I am not certain that much has changed since 2011 when the debate started on OT Connections - at that time many people were arguing that social justice was not a political construct and they thought it just meant that we should try to help poor people.  Of course the issue is not the objective (trying to improve the lives of people) but the problem is with the methodology (redistribution and governmental control).

It is my wish that American therapists would watch or read the news of the 2015 British elections and see the unfortunate result of a health system that has become hopelessly intertwined with politics.  The commentary from UK colleagues and even the COT is telling and demonstrates the angst and concern that is created because the conservative party performed much better in elections than was initially predicted.

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As an interesting and related point of reading, I encourage occupational therapists who are still confused about what the social justice construct represents to read Adam Swift and David Brighouse's recent 'scholarship' on the topic.  They are promoting the concept that "familial relationship goods" are unfairly distributed because some families are able to confer advantages based on values, relationships, opportunities, etc.  This hit the lay press last week associated with Swift's appearance on a radio show where he was discussing the 'unfair advantage' that was conferred by some families reading bedtime stories to their children - so of course the extension of this bizarre thinking is that reading bedtime stories should not be allowed.  It is fortunate that the lay press grabbed a hold of the odd 'ban on bedtime stories' because sometimes it takes just such a soundbite to bring the agenda and dangerous thinking to the fore.

I don't expect that Swift and Brighouse actually want to control people's bedtime story routines with their children, but this type of thinking and 'moralizing' helps to prop up the notion that the State has to be an arbiter of fairness and distribution because there is no other mechanism to ensure equal distribution of "familial relationship goods."

I wish that this soundbite was available during the debates on social justice in the Code of Ethics.  I would love occupational therapists to explain how they are supposed to "abide by the highest standards of Social Justice" (as was required in the 2010 Code of Ethics) when Social Justice crusaders state that we need to make the distribution of familial relationship goods "fair" for everyone.

I already blogged about this in context of Melissa Harris Perry's objectionable statement that children don't belong to their parents and need to be raised by a collective community.  This remains an issue for the Ethics Commission to address, because it is very difficult to understand how Dr. Brandt can continue to state that such collectivism is a Core Value of the occupational therapy profession when so much evidence points to the contrary notion that the profession has always emphasized autonomy and individual responsibility.

My opinion is that this Social Justice conversation should continue as long as there are elements in the (USA) profession who mistakenly believe that it is a Core Value.

And now we have the introduction of a new unfortunate confusion about what is an enforceable principle and what is a non-enforceable Core Value.  There is work still to be done.