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.