Wednesday, January 27, 2016

On retained primitive reflexes

Each year I receive several emails from colleagues about 'retained primitive reflexes.'  I am also seeing an increased number of reports from local 'health care' providers who are documenting these alleged problems so I thought I would write a summary of my opinion on this topic.  

Predatory 'health care' providers including some OTs, PTs, chiropractors, and behavioral optometrists are creating a new 'market' for treating this alleged 'problem.'  Parents should be very wary of these practitioners and other professionals should challenge these practices whenever they are seen.

The following is the kind of information that causes concern and was provided to me by a colleague as a sample from a student's IEP:
The student continues to demonstrate the following retained primitive reflexes that at times interfere with his ability to demonstrate appropriate adaptive responses: Fear Paralysis Reflex, Moro Reflex, Palmer Reflex, Tonic Labyrinthine Reflex, Asymmetrical Tonic Neck Reflex (ATNR) and Symmetrical Tonic Neck Reflex (STNR). If the primitive reflexes are retained past the first year of life (at the very latest) they can interfere with social, academic and motor learning. Basically, the perception of our inner and outer environment and our response to it may be disturbed; that is, conscious life may be disturbed. Each reflex is associated with one or more of the Sensory Processing Systems: Auditory, Taste, Tactile, Smell, Visual, Vestibular, Proprioceptive and/or Interoceptive (automatic “gut” responses related to emotions). Therefore, if retained, a child may experience dysfunction within one or several of the sensory processing systems. This can lead to what is known as Sensory Processing Disorder.

This is the kind of hokum that is being placed in the IEPs of our children and is being subsidized by taxpayers.  This will ultimately lead to the demise of related services in schools if our tax-supported colleagues who work in educational programs don't get on board with science-based and evidence-based practices.

 Reflexes are normal motor patterns that are developmentally specific and they tend to become 'integrated' as motor skill increases.  In simple terms, a baby's initial movements will be reflex-based and those movements are predictable, repetitive, and subject to specific incoming stimulus.  If a newborn baby is on its belly then it will tend to curl up into a ball.  That reflex is integrated as the child learns to crawl and sit and walk.

In children who have nervous system damage, like cerebral palsy, some of those reflexes never go away.  You can see them long after the child should have 'integrated' that reflex and those reflexes are often associated with motor delay.

There have been some observations over time that some children with mild learning problems have some small evidence of those reflexes. These children don't have the same motor deficits as a child who has cerebral palsy, but they may have some mild or even moderate motor incoordination even if they can walk and talk and keep up with their peers (to varying degrees). 

There is great variability in whether or not there is any residual evidence of those reflexes in children with mild learning problems, and even more problematically, there has never been any research that indicates that 'integrating' those reflexes does anything to help the children!  There is also no standard or recognized protocol for evaluating, quantifying, or even treating the problem - although the Internet is full of snake oil about this topic.

So what do we know:

1. Children who have severe nervous system damage (like cerebral palsy) don't develop their motor skills and primitive reflexes persist.  We know that motor learning, normal practice, constraint-induced practice, and similar techniques help some children with these problems learn how to move with more skill.  For many years therapists used techniques based around those reflexes and their was very little evidence that those techniques were helpful.  Most therapists have largely abandoned those practices.

2. Children who have mild neurological or behavioral problems sometimes have very slight evidence of those residual reflexes.  No one knows if that is significant, and in fact it likely is NOT significant because it is so variable and there is no evidence to support the premise.  At best, there is a weak CORRELATION between those reflexes and some learning problems.  We also know that CORRELATION DOES NOT INDICATE CAUSATION.

3. We know that there are no studies that indicate that any protocol to 'integrate' anything that is being called a 'retained primitive reflex' is effective for any child.  Since there are many evidence-based methods which are KNOWN to help children who have specific motor or learning problems, it is UNETHICAL to subject children to experimental theories.

4. Practitioners who are not influenced by evidence, science, and standards of acceptable practice should be avoided.  Seeing statements in an IEP that  'retained reflexes' and 'sensory processing disorder' causes 'conscious life to be disturbed' is an embarrassment to any thinking person who is actually trying to help children.

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If parents see statements on their child's IEP about retained primitive reflexes they should immediately complain to their CSE and school board.  Therapists or other practitioners have no right experimenting with outdated and largely discredited theories on children.  Parents should demand that evidence-based methods are used to educate their children in public schools.

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Tuesday, January 26, 2016

Early intervention providers: Stop demanding more payment. Demand more freedom.


It is budget negotiation season in New York State, and you can tell this by the long line of elected municipal leaders and other special interests who get invited into budget hearings to beg for more funding.

People who watch the process closely call this the 'tin cup brigade' and that is an apt description of the process even if it does ruffle the feathers of those in line.  Leading the line are the Counties and other municipalities who are forced to endure the unfunded mandates passed onto them by the State.  A prime example is the New York State Early Intervention Program.

Funding the early intervention program has been a nightmare for many years.  As the program has grown the costs were shifted around - most recently this involved a complex payment scheme that used an intermediary acting as a fiscal agent that billed the private insurance companies.  The idea behind that was to create a cost sharing context with the private insurance sector, but all that was accomplished was that the program lost participating providers, small women-owned early intervention businesses were decimated, disabled children were placed on waiting lists, and an out of state fiscal agent contractually skimmed millions of dollars out of the woeful trickle of payments that made it into state coffers.  To top it all off, the Counties remained the payer of last resort anyway as only a fraction of payments were processed and collected.

 There are a number of legislative proposals made last year and this year that intend to 'solve' the funding problems with this program.  Legislation has been (re)introduced that creates large grant funding mechanisms so that payments flow directly from the State to the Counties for administration of the program (S4372/A6517); there are proposals that involve 'refund payments' made from the State to the Counties for purposes of property tax relief (S6486); and there are proposed mandates on insurance companies to pay claims (A135).

It is difficult to know which, if any, of these will gain any traction - but the takeaway is that the creation of the intermediary system has failed and Counties are still bearing large amounts of unfunded costs.

The screams from within the Counties are not 'PLEASE TAKE CARE OF OUR CHILDREN.'  The screams are 'STOP TAXING US SO MUCH.'

It is important to understand why the screams are what they are.  If you ask people individually you will not find many who would oppose funding programs that provide care for disabled children.  That is particularly true if we are in a good economy.  However we are not in a bountiful economy and everyday people are struggling to meet their basic expenses.  That is why the voices that scream 'STOP TAXING US SO MUCH' are so notable.

Don't believe politicians who are telling you how great our economy is.  The fact that no one wants to pay for funding programs for disabled children is direct evidence that the economy is a mess.

Ironically, many of the people who would hold out their tin cups and beg for political largesse are also those who believe that they are being taxed too much.   Not only is the economy a mess but our population is currently unable to understand the dynamics of WHY it is a mess.

Government solutions are almost always re-distributional in nature and that is why we see such boondoggles for payment schemes because all of them ultimately fail and all of them ultimately create undue burden on taxpayers.  Unfortunately, providers do not clearly understand the complexities of reimbursement and funding so they end up joining the end of the Tin Cup Brigade Line and joining the chorus of demands for more payment.

Since it is budget time I remind my colleagues of the importance of studying basic economics and of becoming proficient in understanding the complex web of social services funding.

I also encourage them to put down their tin cups and to try another tactic.

Stop demanding more payment.  Demand more freedom.

If the State got out of the way, providers could interact with families and their insurance companies directly - and I assure everyone that any provider could do better with getting claims reimbursed than the State Fiscal Agent.   Local providers could become in-network providers with their local insurers.  They would know and apply the local rules for coding and reimbursement.  The money would flow in a cost-sharing fashion from the private sector just as it properly should.

Private practice providers successfully bill private insurance.  EVERY. DAY.  Why can't we model the early intervention program after a model that we know already works?

The State could then resume its proper role as Payer of Last Resort and those funds could be funneled to Counties in the form of much smaller grants.  Municipalities could contract with those providers who are most efficient in their service provision and billing.  The system would be functionally privatized but would include a safety net as appropriate.  Quality in the program would be ensured by monitoring the outcomes and billing performance of the providers.

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I have virtually no expectation that the State would ever implement a functionally privatized model of care that involves cost sharing and has built in quality drivers.  But I can dream.

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Consider demanding more freedom.  You might be surprised at what that freedom gives you.