Tuesday, April 5, 2005

Good Guys and Bad Guys?

Most people understand why Autism Partnership would testify on behalf of a family seeking services from a school District. But why on earth would AP ever consider giving testimony on behalf of a school district?

This has caused some people to question our motives in taking such action and even led some to accuse us of being “anti-child”. We would like to give some perspective on what we see as our role in providing services to children with Autism Spectrum Disorder (ASD).

“Good Guys” vs. “Bad Guys”
We have heard some professionals say they would “never testify against a family” and some would go even further, arguing that, “anyone who takes a position that is different from what the family believes is unethical and mercenary”. There appears to be a perspective amongst SOME people in our field, that educational legal matters are ALWAYS about families making the right choices for their children, and fighting against cold, monolithic and powerful school districts who always make the wrong choices, usually because all the district cares about is saving money. Making such sweeping categorizations exemplifies the same kind of stereotyping that parents are so quick to accuse school districts of committing. Parents know all too well what it is like to be on the receiving end of such prejudice, (i.e., the belief on the part of SOME school personnel that families are “uninformed, impossible to please, and over-empowered”). We believe such stereotyping, whether committed by parents or by school districts, is unfair, inaccurate, unproductive and potentially harms children.

Educating children with ASD is a complicated matter. Both family members and professional educators have something important to contribute to the effort. It clearly works best when the process is collaborative. And when it turns to dispute, as with anything in life, it is not as simple as figuring out who are “the good guys” and who are the “ the bad guys”. In fact, we know there are instructors and others involved in educating students with ASD who have dedicated themselves to providing necessary, quality, and comprehensive services. Yet, despite their dedication these same educators have sometimes found themselves involved in legal disputes. SOMETIMES this happens merely because they are educators, and parents have been led to believe that educators are automatically the “bad guys” without objective and level-headed consideration of what the school staff are actually accomplishing. SOMETIMES the dissatisfaction occurs merely because a child is not achieving “best outcome” status and it is assumed that this must be due to inadequacies of the school district’s program.

Of course, SOMETIMES district staff fail to provide an appropriate education and in such cases parental dissatisfaction is well justified and calls for action. However, there seems to be an automatic belief that school districts are incapable of providing quality intervention and that private agencies are ALWAYS far superior. This simply has not been our experience over the past 25 years. SOME districts actually provide quality educational programs. SOME of these are not just “adequate”, but truly effective. And for those districts that do not currently provide meaningful educational benefit, there is still the possibility that they can significantly improve their programs with in-depth long-term training. As for the private agencies, there are SOME who provide very poor, and even detrimental services. The point is that we cannot make generalizations about who are the “good guys” and who are the “bad guys”.

Changing the Behavior of School Districts.
EVEN IF it were true that 99% of the time parents make reasonable demands on school districts, it still CAN happen that what a parent is asking for in a particular case is not reasonable or would not be in the best interests of a child. EVEN IF it has been the experience of parents that the vast majority of programs offered by school districts are very poor quality, it CAN happen that a school district has worked hard to put in place an excellent program. Parents expect professionals to step up and advocate for their child when the school district does not do its job. At Autism Partnership we do this all the time. But let’s consider the opposite scenario, EVEN IF it rarely occurs. What should happen if the school district really does have an excellent program or the parents are asking for something that does not make sense for the child? We believe that effective and appropriate programs should be acknowledged and defended. In fact, when such desired behavior occurs infrequently, it is even more important for that behavior to be reinforced when it does occur. It follows that if there is ever to be hope of changing the way school districts operate, laudable and sincere efforts must be supported. In such cases, it is our belief that to remain silent and not acknowledge what is in the best interest of the child would be irresponsible, unprofessional, and just plain wrong.

We are willing to work with school districts so that school personnel (e.g., teachers, aides, speech pathologist, occupational therapists, etc.) can be trained to provide quality educational programs. Our experience has been that with comprehensive and ongoing training, and when the motivations of the district are sincere, it is possible for school personnel to provide quality services that are at least at the same level as those provided by private agencies (and in some cases, better). The advantage of working with schools is that services can be provided to a far greater number of children and it can be done more cost-effectively. Quite simply, there are not enough professionals who can provide quality programs to children with ASD. Realistically, there will not be sufficient funds to provide the services that are required unless it can be done in more efficient ways. The majority of children receiving high quality intensive behavioral intervention are those who are lucky enough to have parents with the resources, knowledge and emotional stamina to fight to obtain services. These children represent a minuscule percentage of children with ASD. This leaves the vast majority of students with ASD receiving services that are considerably lower in quality or even non-existent. By training school staff, our goal is to minimize this disparity.

When we consult to a school district, we insist on a comprehensive approach. We help set up ABA classrooms and direct instruction programs; develop curriculum and data collection systems; provide guidance toward successful inclusion; help develop effective behavior intervention programs; and conduct extensive ongoing staff training. Additionally, we assist districts in building capacity by helping them develop their own in-house experts. We also conduct research to determine the effectiveness of ABA strategies and methods that can be used in schools. We show them how services in school can be supplemented with services at home to ensure that children receive the necessary level of intensity to meet their needs.

To Testify or Not to Testify?
We have consistently been informed by all parties involved that support of the educational interests of children with special needs constitutes the essence of IDEA and its protections. Most parents and advocates within the ASD community expect us to be willing to testify, when necessary, on behalf of a child who is not receiving necessary services. We are willing to do this, have done this, and will continue to do this. Ironically, it is often these same people who would like us to never to testify for a school district even if the services being provided are excellent services. Failure or refusal to testify on behalf of good services when they do occur in a school district, would only perpetuate the severe shortage of well-trained and highly experienced professionals who can help meet the needs of children with ASD.

When we have made the decision to testify as experts for a school district, it is has been based upon our strong belief that the district was providing quality services. After careful and extensive analysis of data; reviewing reports, assessments and evaluations; multiple observations; conducting extensive interviews; and implementing intervention probes we then form an opinion taking into account what we have learned from our many years of experience. When we STRONGLY believe that children are being provided quality educational services, AND that these services are equal to if not better than those being received privately, AND MOST IMPORTANTLY that it is in the best interests of the child, THEN AND ONLY THEN would we be willing to testify. Otherwise we would not support the school district’s case; we would recommend that the district should improve its in-house services and agree to support and fund the family’s requested services from an outside provider. In a number of such cases, we have not only refused to testify on behalf of the district but have been prepared to support the family’s case against the district. Furthermore we have severed our relationship with a district if they do not follow through on the commitment to providing quality services so as not to collude in creating a facade that quality services were being provided.

When we do testify for a School District, we are often asked on cross examination if we are being paid for our work. The answer is “yes”. When we are expert witnesses there is a tremendous amount of time spent in preparation. We do not see the need to apologize for receiving remuneration for this level of professional effort and commitment. More importantly the fees we receive as expert witnesses enable Autism Partnership to provide much needed treatment for children. We are able to provide services to families who do not receive proper funding. We are able to conduct workshops at no charge to families. We are able to conduct research which is not otherwise funded and we are able to provide pro bono expert witness work to families in legal disputes.

We fully appreciate the concern of families that some of our work could be misconstrued as “giving comfort to the enemy”, especially when taken out of context. We wish that such litigation never had to happen. Unfortunately, litigation is at times necessary to ensure that children receive the services they need. Our legal efforts, no matter which “side” we appear to be on, are necessary extensions of our clinical endeavors and professional commitment. Our desire to positively impact the lives and serve the best interests of children with ASD needs to be backed up with willingness to defend quality services wherever they occur, regardless of whether it is in a home-based program or in a school district classroom. As distasteful as it may be, we believe that we must be willing to fight when it is the right thing to do for the child. -RL/JM/MT/Tracee Parker/Andi Waks

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