A reminder about human agency and self reliance

There has been some noise and distress in social media circles with the recent advertisement run by MSNBC regarding 'who should be responsible for raising children.'  Here is the video:

This academic/pundit has since walked back some of her comments, stating that people just didn't understand the nuanced nature of what she was saying about 'collective' efforts in raising children.

I suppose that if she wanted her message to be that we need to 'build a world together' that she should have said that in the original message instead of a bizarre statement that we need to 'break through our kind of private idea that kids belong to their parents.'   Most parents I have spoken to about this weren't impressed with being informed that they just weren't nuanced enough to  understand the original message.

This is an issue that directly relates to therapy services for children because we are at a point in time where it is becoming increasingly evident that we don't have resources to support all of the social programs that (as a society) we want to support.  People have values to provide social safety nets, but all the recent posts about the early intervention program in NY State should provide ample evidence that the government just can't support what it has promised.

People don't seem to like that.  I have seen anger and lots of blame being tossed about - and none of it seems to be particularly constructive.

Very liberal voices, represented by this MSNBC pundit, seem to argue that the solution will be to tax people more and to grow our programs more and place more responsibility on the State for providing these services.

But the State can't do this any longer.  And getting angry about that fact is not constructive.

Also, we have to consider what the State's record is in taking care of people who have disabilities.  We need to remember our history.

That does not mean that we eliminate social safety nets.  It certainly does not mean that we don't expect help from each other.  However, we need to rethink our model because although 'It might take a village' in some cases, that doesn't mean this will be the de facto methodology for handling every situation because that philosophy is no longer sustainable and even more importantly that philosophy robs people of the opportunity for dignity through self-reliance.

Dignity through self-reliance is actually important when it comes to occupational therapy theories.  Fifty years ago (!) Mary Reilly asked us if America was the place and if the 20th century was the time to determine if our profession was going to serve what she called 'society's need for action.'  Mary Reilly  believed that our service was meeting needs and facilitating action, productivity, and human agency.  She did not suggest that meaning was arrived at through collectivism, but rather as a result of a person's need to master their environment - to alter and improve it.

Is it not curious that we are so willing to abandon that philosophy now when we are structuring care delivery systems and making recommendations for services?

 We have arrived at a pragmatic point of decision and we have to decide what our care systems will look like and how they will be structured and delivered.  It is a good time to reflect on Mary Reilly's wisdom and to remind ourselves of our philosophical core.

As a start, we need to reject the expectation that our municipalities will be able to be the never-ending source of programming effort and resources.  The pragmatic barrier has been reached and the evidence is that we can't afford that model.

We need a re-designed service delivery model that has at its core a requirement for family investment and that promotes action, productivity, and human agency.

I define investment as requirement for time, energy, interest, participation, and cost-sharing.

In my opinion, entitlement programs as currently constituted do not mandate parental investment.  As such they rob families of agency.  It is common for children to receive OT services in the schools and for therapists to have only nominal contact with the family.  That is not a recipe for shared responsibility for outcomes and it is not a recipe for promoting human agency.  Therapy provided in a 1-2x per week model with little or constricted opportunity for classroom and home carryover is a poor model.

Of course some therapists have release time or make extraordinary efforts to communicate with families but as a whole these are the exceptions and not the rules.  This is not so much the fault of the therapists who I am sure would LIKE to communicate more with families; rather it is the fault of a system that is poorly constructed and does not promote this communication.

As for early intervention and home-based CPSE services, I believe that we should stop perpetuating the mythology that providing a service in the 'natural environment' is the de facto best model.  Last week I did a home visit for a baby who has torticollis - and the condition is complicated by the fact that the child is restricted to a 6x8 carpeted area bounded by a sectional couch, a 55 gallon aquarium, and a 60" TV.  The child sits with a kyphotic posture and head laterally tilted from floor level all day long so he can see the TV and aquarium.  The parent has been instructed in modifying the environment but has been unable to make changes for a variety of reasons including inertia, lack of interest, and blaming the spouse.  For another child, the tiny trailer that the family lived in had clothing, garbage, toys, and Kix cereal strewn all over the play area and there was literally no where to even sit on the floor.  The parent takes the time that the therapist is present to attend to Facebook and cell phone texting.  Both families do not carryover, obtain little to no benefit from the 'natural environment,' and receive their services for free and are clearly not invested in any way.  They have been robbed of human agency through models of collectivism and entitlements that are delivered for free directly to their front doors.

There are some families where the old EI/CPSE models work well but that is not a function of the natural environment; it is a function of the family's investment in spite of the entitlement culture.

I see children and families in my private clinic also.  The children and families that I see come from an extraordinarily diverse socioeconomic and cultural background.  Some receive public assistance and have Medicaid; others have private insurance or have the financial resources to private pay.  No matter what their culture or socioeconomic differences are they all share a common core trait: they WANT their child to receive therapy, they WANT to listen to therapist recommendations, they TAKE THE TIME to make appointments and keep appointments at a community-based private clinic, and most importantly they all FOLLOW THROUGH on recommendations and are highly invested in what I call a 'parental empowerment' model of service.  That model of service is oriented toward LOW FREQUENCY consultation (often only once a week) and HIGH INTENSITY parental consultation and home programs.  This model of service promotes agency and self reliance.

The services that children receive in my clinic are extraordinarily less expensive than home based or school based models.  Additionally, the families who are invested have significantly better outcomes.  THEY set the goals and then THEY invest the time to make them happen.

Because there is no 'investment metric' for families entering into entitlement programs that is why I would not mind if those systems imploded.  That would leave families who really wanted the services to find ways to pursue and obtain the services.  Providing services, or anything for that matter, with no requirement for investment only serves to reinforce ongoing dependency and lack of progress.

Because families may be at many different phases of understanding the criticality of their investment and participation, traditional services (as currently constituted) should be provided on a time limited basis with the primary goal of education regarding the importance of parental investment.  Then it should be up to them to follow-through - and obtain those services under a different model that mandates their participation and promotes their human agency.

I suspect this would be considered radical - but that is only because we have loud voices in our public discourse that state that parents don't need to be responsible and that the village will take care of any concerns.

We need to counter those voices by reminding ourselves of the power of human action and agency - and of the power of self-reliance 

I believe in social safety nets and I believe that we need to help families find ways to become more invested.  To become more self-reliant.

I DON'T believe that we are doing much to  empower families using our current models - and in that sense we are really only serving ourselves by chasing the unsuccessful notion that the village is somehow better positioned to solve problems of individual human agency.

It is time that we all read that Slagle lecture again.


 Reilly, M. (1962). Occupational therapy can be one of the great ideas of 20th century medicine. American Journal of Occupational Therapy, 16, 300–308.


Dr. Alterio
Thank you for your commentary on the need for improved intervention models. I appreciate that you made reference to Dr. Reilly's oft cited Slagle Lecture and agree with your inference that her advice, which had little impact on practice in that era, should be reconsidered in these times.
As a student of the profession's history, I would argue that during its first century, OT's directions have been influenced greatly by policy makers who, though well intentioned, were often reacting to events and situations rather than devising proactive strategies in anticipation of known trends. The signature quotation from Reilly's lecture, "that [humans] through the use of [their] hands as energized by mind and will, can influence the state of their own health" —inspiring as it is— is too often misunderstood when viewed outside the context of her central thesis.
Perhaps, to your point, in a world of occupational therapy designed by Dr. Reilly, there would be far more attention given to practice models and settings that prepared people to assume productive and self-reliant roles than is presently the case.
One can certainly argue that because of her uncompromising focus on occupational behavior, her insistence on academic rigor by her graduate students, and her own belief in the importance of practice based on sound theory driven by research, she was a notable force in the evolution of theory. But, alas, she was ahead of her time.
History has now caught up with her, and it is clearer than ever that 21st century practice will need to be more evidence-based and tightly driven by science than is presently the case. Constrained resources will demand public accountability for outcomes, forcing changes in practice models and elevating the importance of effectiveness research. Ironically, research is one endeavor that does "take a village." Thirty years ago I argued that research would eventually become an economic imperative for occupational therapy. That time has arrived. The question is, are we ready to collectively address the need?
Thanks for your blog and opportunity to respond!
Charles Christiansen
The American Occupational Therapy Foundation
Cheryl said…
Hey Chris,
I want to comment but have been a little intimidated by the original post quality and now by the other comment's quality! Also, I currently have no brain and have just decided to make my peace with that.
anyway, I was going to say that though we have differing years in practice, I have not seen the correlation of service cost to engagement. Oh, it happens occasionally, to be sure. But many of my EI parents, because they self-referred to the program, are extremely involved and take measures to really work on the things that we discuss and value our time together (I see most kids between 2x/month and 1x/2 months). Whereas I have had scads of parents who bring their kids to outpatient therapy every week, and will not come back to observe because they want that time to read a book or play on their devices. Ultimately in my mind, I'd rather have a system that allows people to freely seek assistance (especially EI) even if many are not fully engaged because I'd hate to have kids who slip through the cracks due to finances or poor parent education of the system.
Thanks for your comments Cheryl. Perhaps we have different experiences - I wonder if population demographics can have a large impact on all this as well - not sure what your demographics are but mine are rural and rather poor or (small) urban and rather poor. Additionally, I am interested that your EI model of service is more consultative in nature - I understand that many municipalities have adopted those models but that has not happened yet in NY. I think that consultative models (by their design) tend to be more oriented toward family agency. It is hard to propose a consultative model alongside your PT or Speech or SEIT colleagues who are scheduling the same kids 2-3x/week. It's a problem. Still, once you find your brain and want to travel you should bring your family up to NY for a visit - you can go to Niagara Falls and Caroline and I will watch the baby for you! I can also drag you around for a tour of the infamous ABC Therapeutics practice so you can see first hand all the issues that I blog about! LOL!!

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