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 Welcome!
This site is dedicated to families of children throughout the world struggling daily, to do the best they can, with what they have, where they are. We wish to acknowledge the courage of all the kids out there who do their best, on a daily basis, carrying baggage we can never fully understand, in the form of a syndrome called Autism. The Verbal Behavior Institute (VBI) was created by working with some of the best and the brightest in the field of Verbal Behavior method of Applied Behavior Analysis. more | |
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| The Disgrace of Early Intervention for children with Autism in New Jersey |
AN OPEN LETTER TO PARENTS
Early Intervention Services available to parents of children with Autistic Spectrum Disorders in the State of New Jersey, through the laughable “system of care” known as EI is an insult. This letter outlines challenges with the system, and represents personal experience, as a parent, an educator and as CEO of an Early Intervention program operating in N.Y. State. Opinions expressed, are that – opinions. There may be exceptions to the fiasco we encounter on a regular basis here in NJ known as EI. We recognize there are good people well intentioned, but need to advise parents who must access care - you are living in a state that provides substantially inferior care for children with autism (opinion) and provides less than 1/4th of the standing recommendations children in adjacent states receive.
QUALIFIED STAFF About a year ago, we (VBI) attempted to negotiate the Early Intervention System here in NJ. We thought we might want to become providers of Applied Behavior Analysis –Verbal Behavior services to children with ASD (Autistic Spectrum Disorder). What we found regarding the qualifications of staff, were and remain an appalling statement. We did not enter the Early Intervention System of New Jersey, as there is a “moratorium” on services. We did however find this: in New Jersey an ABA “therapist” can be a person with a high school diploma who attended two ungraded seminars on autism. In New York state (and I would add in most states), the BASIC qualification for staff is a Masters in Special Ed or above. In our New York firm, many staff are Board Certified Behavior Analysts. (Which is 2+ years of practice and study beyond the master’s level). There are families paying hundreds of dollars each week to unqualified staff, who are hurting kids with Autism, simply because they have no idea what they are doing. (e.g., one mother was taught to pick up and hug her child when she was scratching herself. This reinforced the behavior and became a severe self injurious behavior that required intensive BCBA/BCaBA level staff many weeks of work to reverse!)
LACK OF QUALITY ASSURANCE As a professional courtesy I will leave out the name of the person I spoke to about situations like the above. Suffice it to note she is a high level administrator who ought to do something with her pay to administer a quality assurance oversight on this disaster of a program that really has no right being called Early Intervention. Having recently gone through a grueling audit in New York State by the Department of Health’s independent Early Intervention Quality Assurance teams, I asked, “How do you audit EI for quality here in New Jersey?” I was stunned at the response, “Oh we pretty much leave that up to the providers of services to do themselves.” Ouch, if you read our Caveat Emptor link, you know that phrase applies certainly applies to this practice. What we’ve encountered in New Jersey as “EI” is an insult to states such as New York who really do the right thing by kids to the best of their ability. I was at a family/parent function for children with ASD when then Senator Corzine was stumping for Governor. I said something to the effect of “NJ Is 25 years behind NY in programs for children with special needs.” To his credit he found me later on and asked why I would make a statement like that? I responded, “Mr. Corzine, In NY State, then Governor Mario Coumo asked a question when the IDEA law came into effect. He asked, ‘Where do we end up when all the lawsuits are done? – And then he said, ‘Then let’s begin there - because it is the right thing to do.’ In New Jersey, we ask a different question, we ask, “What do you think we can get away with and not get sued”. Fast Forward and that makes all the difference in the mess you call Early Childhood services in NJ today”.
LACK OF COMPASSION AND CARE
The thing that really blows my mind is that the typical recommendation for children we run into in NJ is 4 – 6 hours of in-home ABA per week. Now remember, that is from a non-Board Certified person, predominantly someone who doesn’t even have a teaching degree - who may or may not know what that are doing, predominantly functioning without any supervision. The most important years of a child’s treatment life, wasted! For what? To save a few dollars? At what cost? In NY the recommendations vary, but I would point out an EXCELLENT resource, called Clinical Practice Guideline: Report of the Recommendations Autism and PDD from the New York State Department of Health EI Program (518) 473-7016. I have not run into a child with ASD that did not get at LEAST 10 hours per week of MASTER’s LEVEL Special Ed, and related services such as were required, at no out of pocket cost to the parent. The link for those of you who would like to look up this resource and use it to enlighten your service coordinators is http://www.health.state.ny.us/community/infants_children/early_intervention/autism/index.htm
There are in the past year, three separate cases where I’ve listened to parents call their regional EI service coordinator supervisors and beg for clinically appropriate services. In one case the supervisor responded to the mother’s admonition that she was going to sue, by saying (on speaker phone no less) “Go ahead, by the time your lawsuit gets to court, your son will age out anyway and then what will you get”.
LAST – MY SINCERE SYMPATHY to the SCHOOL DISTRICTS… I recently sat in on two IEP transition meetings. Here is the game I found. The Service Coordinators come to the meeting and prepare the parent to “bash the district” as not having an appropriate program for their child. The Service Coordinators essentially encourage the parents in these instances to “go to an attorney” to get an “out of district placement”. Now I know my sampling is a small one, and some Directors of Special Ed here in Central NJ advise me this is not the standard practice of their service coordinators, but other superintendents tell me it is a regular feature of the “Advocacy Role” the Service Coordinator serves. It is in the latter instance I address the following comments. Suffice it to note that in the first meeting where this happened, I didn’t believe what I was hearing. In 25 years in the field I’ve not encountered such unprofessional behavior. By the time it occurred the second time – I advocated for the district simply by asking the Service Coordinator two questions that follow: a) You’ve had this child for a year; and the Plan says you were doing ABA. Can you show me some data of baseline, treatment and outcome effect? b) When the service coordinator admitted they had only anecdotal notes I explained that is not ABA. Then I asked the second question that gave the district a little breathing room to speak with the parent. “Since you have no data after a year of treatment, how are you as a Service Coordinator able to recommend a program you yourself admit you have not run for this child, though you were paid to do so?” Got a bit quieter after that one. In closing, what to do if you are a parent of an EI child in NJ. Stick close to the Pediatric Hospitals. Here in Central NJ places like St. Peter’s in New Brunswick or Mountainside in Somerset have good reputations. Other places that are clinic based are likely also good resources. Our comments here address the disaster of HOME BASED ABA services. Go get your own independent evaluation and recommendation from a physician (M.D.) who is experienced with AUTISM and Autistic Spectrum Disorders. Read that book above, and get a good lawyer so you can get what your child needs. What is being given may be somewhere an appropriate ABA program, let alone a true ABA Verbal Behavior program, we’ve just not seen it. In 1991, our son Chris was born through challenging circumstances. At the time, I ran several early childhood programs in Staten Island the Bronx. In 1996, one of these programs was recognized by the NY State Legislature as one of the five “best of the best in the state of NY”. (and it was in a tough neighborhood, right near Yankee Stadium). When our son was diagnosed with a hole in his heart, no lining in his lungs and oxygen deprivation at birth, we got an off centered, carbon copied letter to “male infant Blackwell” – which I framed and put over my desk at work. I used to point to that letter and tell the principals I worked with if they thought there were challenges in NY, they ought to try NJ. I see from the continuing total lack of quality in services offered through NJ Early Intervention program not much has changed in 16 years. Terence Blackwell, Jr.,
Parent, Advocate,
BCBA,
Licensed School Principal (NY),
CAS |
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