Autism intensive treatment insurance mandates will ultimately result in lack of inclusion, segregation, and more institutionalization of autism affected individuals.
New Jersey may illustrate this concept best of all. As it has created charter schools with tuition requirements thus privatizing autism education and providing that education aside of typical peers.
If health insurance takes over responsibility for funding earliest intervention, the schools will draw back from participation in what has been decades' long involvement with evolving understandings and implementation of autism interventions that involve inclusion. Look forward to a major step backward in our public schools; to the segregation of our younger autism affected children. To charter schools being presented as the alternative and tuition required at those schools being funded by insurance mandates.
No longer will the public schools be compelled to include the autism affected child with their typically developing peers; or at least have them placed in a regular education school with supports. Now, the schools will have every reason to defer the autism affected child to a different wing, an alternate setting - and to an ultimate future of life in an institution. All because the autism mandate lobby has deceived newly involved parents who will - in an ongoing fashion, insist upon making normal, children who in many cases, will never be normal. The best analogy I can give is that the new generation of autism affected children are going to be stressed to the point of breaking by good intentions that are based on fiction.
In New Jersy they are even starting charter schools and eliminating the public school onus of providing a least restrictive environment - an inclusive ideal that allows for as much integration as possible with typical peers.
From Specialization or Segregation comes praise and critiques with regard to the new charter schools...The praise has come from some advocates who cite the need for quality programs to serve what is the largest concentration of children with autism in the country. The school would start with 50 students, from kindergarten to seventh grade, and grow within three years to 80 students. It would serve Newark students first, and surrounding cities after that.
The critics have contended the exclusive setting created in the separate school only adds to New Jersey’s black mark as one of the nation’s most segregated states for special needs children. (link)
The philosophy of intense earliest autism intervention as cure for autism or even prognosticater of better outcome, will create lack of tolerance when things don't pan out. Better said, it presents a lack of acceptance with regard to limits that those who are less than perfect possess. Our typical children may now, never learn how to learn, walk with, and live alongside - the autistic individual.
No proof exists with regard to the long term outcome forecasted by mandate lobbyists - who push for intense autism treatments: Intense earliest autism intervention has not been proven to provide sustained or substantial benefit over long term, even shorter term presents many questions. Most recently, mandates for insuring autism treatments have been instated, state by state. The main goal of these mandates is to fund intense and early autism intervention. Intense earliest intervention has not been proven to change the neurology behind autism, however - families will do whatever they can if there is even an unproven chance for better outcome. The question remains, while families are willing to go the extra in order to fund unproven therapies - should communities have to share the burden?
One mom in Virginia shares a little about costs for funding an intense program:
"We've had to invest a lot of money in to Aden's treatments and therapies because we want him to have a chance at an independent life", said Kashinejad.
They've spent over $150 thousand to fight the disorder. Treatments for speech, occupational and physical therapy can be extremely expensive, which is why some lawmakers voted against the bill. Some call the legislation a healthcare mandate." (link)
How much is true and how much is false in the autism insurance mandate debate; will the mandates really alter outcome in a positive way for the autism affected among us? Can a lie result in truth?
False conclusions from AAP: "There is an increasing concern that in modern research, false findings may be in the majority or even the vast majority of published research claims...A new claim about a research finding is more likely to be false than true." (link)
"The sins of science" tells us:
...everything from data fabrication, plagiarism to fraud to embezzlement is on the roster of rotten scientific behavior. It is a high stakes game where pressure is frenzied to publish positive results. (link)
A list from "The sins of science" gives multiple examples of researchers and their famous, faked, scientific results.
What about articles in well respected research journals; ones that are cited as sources for upholding important policy making decisions?
The American Academy of Pediatrics (AAP) is quite respected and yet the group has presented conclusions that have not yet been validated. In its 2007, Management of Children With Autism Spectrum Disorders the AAP gave a stamp of approval in recommendations for intense earliest autism intervention. The AAP made claims that earliest intense autism intervention is shown to: "...make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior - and their outcomes have been significantly better than those of children in control groups." (31-40) The above claims have yet to be validated by any hard data in the scientific community.
AAP's own sources defy the lone empirically represented statement: The result of looking through the sources (31-40) provided in support of the representation that substantial and sustained gains are realized via intense earliest intervention - is that the very source experts themselves defy the AAP stated conclusion that substantial, sustained gains have even been realized from intense earliest intervention. The experts' own contributions in the cited papers, state that more research is required to settle what type of benefit earliest intense intervention provides over both the shorter and longer term. The one study (Lovaas) that might support the AAP conclusion in a small way - has yet to be replicated since the decades' old results.
From the cited data provided for the recommendation given by AAP, one finds lack of support for conclusive findings on intensive earliest autism intervention outcome:
31) Cohen, H, Amerine-Dickens M, Smith T. (Early intensive behavioral treatment; replication of the UCLA model in a community setting) J Dev Behav Pediatr
- A three year study in which involved no longer term follow up after initial gains.
32) Eikeseth s, Smith T, Jahr E, Eldevik S. Intensive behavioral treatment at school for 4- to 7- year - old children with autism: a 1- year comparison controlled study. Behav Modif
- No follow up after initial study.
33) Eldevik S, Eikeseth S, Jahr E, Smith T (Effects of low- intensity behavioral treatment for children with autism and mental retardation) J Autism Dev Disord
- After two years the behavioral group made gains as compared to the control group - but they were not significant.
- No long term follow up.
34) Howard JS, Sparkman CR, Cohen HG, Green G, Stanislaw H (A comparison of intensive behavioral analytic and eclectic treatments for young children with autism) Res Dev Disabil
- A comparison between intensity and type of programming. No long term follow up.
35) Lovaas OI (Behavioral treatment and normal education and intellectual functioning in young autistic children) J Consult Clin Psychol
- No long term follow up.
36) McEachin JJ, Smith T, Lovaas OI (Long term outcome for children with autism who recieved early intensive behavioral treatment) Am J Ment Retar
- Outcomes to the initial study of this group are questioned. A follow when the study group subjects were older indicated that they had become worse. The term recovered was used to describe children whose measured ability fell into the average range (upon initiation of programming) and (also to those) who were being educated within mainstream schools. Children with higher functioning autism could well achieve such outcomes via other interventions, and (furthermore) a follow-up of some of the recovered children at age 13 revealed a continuation of significant behavioral issues. (link)
- This initial study group result has not been replicated - to this day. (link)
37) Sallows GO, Graupner TD, (Intensive behavioral treatment for children with autism; four- year outcome and predictors) Am J Ment Retar
- Hours of treatment for the study were the closest replication as far as intensity of hours utilized in UCLA study (Lovaas).
- While results were comparable, high hours of intense supervision were not sufficient to make up for low levels of pretreatment skills.
- ...Consistent with previous study, low IQ and absence of language predicts limited progress. All this is according to the researchers.
38) Smith T, (Outcome of early intervention for children with autism) Clin Psychol Sci Pract
In part, this source presents the following: A number of investigators have reported that children with autism make major gains with early intervention. The present review included nine such reports on behavior analytic treatment (and other treatments)...
- ...Unfortunately, close inspection of these reports reveals that the results have been less favorable than reviewer have claimed (Dawson & Osterling)
- ...Of great concern, is that most studies have lacked even the most basic features fo scientifically sound studies.
- ...11 of 12 studies did not provide data on childrens' progress following the termination of treatment, a crucial omission because initial acquisition of some skills does not guarantee continuation of betterment or long term benefit.
39) Smith T, Groen AD, Wynne JW (Randomized trial of intensive early intervention for children with pervasive developmental disorder) Am J Ment Retar
- The study had no follow up.
40) Weiss M. (Differential rates of skill acquisition and outcomes of early intensive behavioral intervention for autism) Behav Interv
- Early learning rates may predict outcome, but more research needs to be done.
- The answers may be gleaned from future research.
41) Lovaas (Teaching Individuals with Developmental Delays)
- I have this book. From when we utilized earliest intervention in our home. It says was Lovaas usually says.
The autism intervention community has become an industry, and seems to be - becoming somewhat of a shameful one; creating emergency in the minds of parents wille stating cure exists when it does not. Way to take advantage of families who only want to do what is good and right for their child.
The irony, when insurance begins to settle claims on intervention therapies and segregated settings, I hope all you experts have fun with the agreed upon price, which will be way less than you are making now for your services rendered. Way to go.