We understand the negative reactions being voiced over CNN’s reported cost of $20,000 for RES-Q (Autism 911), but there is more to the story. In fact, the cost is $2500 per day and is usually completed in five days (which was the length of time for Marissa's intervention).
RES-Q is actually a very tiny part of the work we do. Out of more than 300 children we see yearly, an average of only 5 will need the intensive in-home intervention. The families who have participated in RES-Q have been able to obtain funding for the intervention through a variety of means. One of the reasons why funding agencies recognize the value of and need for this intervention is that it often means the difference between continuing to live at home vs. requiring residential placement.
We work diligently to keep costs as low as possible, but we are not willing to sacrifice the quality of services. To develop staff with the level of expertise and training that Rick has is costly. Although it might seem as simple as sending a therapist out for a few hours, there is extensive support and time behind the scenes to ensure a successful outcome for treatment. The intervention is a team effort which includes psychologists with more than 30 years of experience working with children, adolescents and adults with ASD.
Those of us who founded Autism Partnership and all of our staff members did not enter this field out of a desire to get rich. If that was the goal, we would have chosen other fields. We take seriously our commitment to helping parents and their children. We provide a variety of services including direct intervention, parent support, and consultations in schools to help teachers and school districts provide effective education. We work collaboratively with funding agencies so that parents get financial support and can afford the intervention that is so vital to their child. We also conduct low fee and free workshops, as well as writing books to help families.
Our goal in participating in the CNN report was for parents to see that there is hope, that children can change. As Marissa’s mom said, she didn’t realize that Marissa could be capable of accomplishing so much. We are thrilled that Autism Partnership was able to help Marissa and her family. It is gratifying that they are able to enjoy life in ways they thought were not possible. Children with Autism have amazing potential. Our job is showing parents and teachers how to help them achieve the high quality of life they deserve.
JM/RL/MT
Wednesday, February 4, 2009
Friday, January 2, 2009
ABA: Neanderthal or Evolved?
Ron Leaf’s recent experience with a panel of experts discussing autism treatment brought up again the problem of people having a far outdated view of ABA. We have often taken up the cause of myth busting about ABA. It is viewed as rigid, mechanistic, superficial and short-lived in its effects. The fact is that ABA is a tool that can be used in many ways, some good, some bad, some artful and some uninspired. And it is being used much more skillfully in 2009 than it was in the 1970's because we have learned better ways to impact behavior as well as what behaviors make the biggest difference. Imagine someone making judgements about automobiles based on the models from 30 years ago? They guzzled gas, required constant tuning, spewed pollution, did not have seat belts, and, can you imagine, you hand to crank the window open by hand!
We have posted a video clip of ABA therapy that is taken from a documentary about the UCLA Young Autism Project nearly 30 years ago. We have shown this clip to workshop participants and invariably the reaction approaches horror. We do not use this clip to denigrate the work that was done in the early days of autism therapy. In fact we trained the therapist and he implemented the therapy exactly as we intended him to do it. It represented state of the art at the time. Even as crude as the approach may seem today, it still was more effective than anything else that has come along in the last 30 years.
When you watch this clip you will probably be struck with how harsh the therapist was, the use of food reinforcement and how strongly controlling the therapist was. This is how many people think ABA looks today. What people fail to appreciate is the use of prompts and fading, differential reinforcement, controlling random variables to maximize discrimination of the concept, and genuine praise for making good behavioral choices.
The essence of ABA is its structure, and its intensity, designed to maximize learning gains and close the developmental gap in a short period of time, along with its constant reliance on evaluating outcomes and revising interventions to achieve the best results. But this can be done in a fun, motivating and engaging manner, respecting the child’s preferences when possible, and using natural language and natural environments. We have posted a second clip which illustrates how you can be natural and fun, while still maintaining the integrity and discipline of systematic teaching.
If your idea of ABA is what you saw in the first clip, please remember, ABA has evolved over the past 30 years. -JM
We have posted a video clip of ABA therapy that is taken from a documentary about the UCLA Young Autism Project nearly 30 years ago. We have shown this clip to workshop participants and invariably the reaction approaches horror. We do not use this clip to denigrate the work that was done in the early days of autism therapy. In fact we trained the therapist and he implemented the therapy exactly as we intended him to do it. It represented state of the art at the time. Even as crude as the approach may seem today, it still was more effective than anything else that has come along in the last 30 years.
When you watch this clip you will probably be struck with how harsh the therapist was, the use of food reinforcement and how strongly controlling the therapist was. This is how many people think ABA looks today. What people fail to appreciate is the use of prompts and fading, differential reinforcement, controlling random variables to maximize discrimination of the concept, and genuine praise for making good behavioral choices.
The essence of ABA is its structure, and its intensity, designed to maximize learning gains and close the developmental gap in a short period of time, along with its constant reliance on evaluating outcomes and revising interventions to achieve the best results. But this can be done in a fun, motivating and engaging manner, respecting the child’s preferences when possible, and using natural language and natural environments. We have posted a second clip which illustrates how you can be natural and fun, while still maintaining the integrity and discipline of systematic teaching.
If your idea of ABA is what you saw in the first clip, please remember, ABA has evolved over the past 30 years. -JM
Tuesday, December 16, 2008
Couldn't Sleep Last Night
The Airtalk (KPCC 89.3 FM) panel on Autism Treatment hosted by Larry Mantle was recorded last night and I had a hard time sleeping afterward. Larry was a very gracious host and certainly knowledgeable about the subject. He seemed quite interested in letting the audience know about ABA and how it works and how it is different from other treatments.
I must say it was upsetting to hear some of the information being presented by panelists. It was unfortunate that the first speaker who discussed ABA presented it in such a narrow way (e.g., done primarily at a table, not involving parents, working on limited skills, etc.). As I said, it is unfortunate that rigid and poor quality ABA does exist but good ABA can be both systematic and implemented in a natural and child-friendly way.
I was even more disturbed regarding the panelists’ continual discounting of solid research and the promoting of interventions that have limited to no data and in some cases has even been shown to be ineffective or harmful. For example, there is only one study on Floor Time. This study is riddled with fatal methodological flaws (e.g., published in Dr. Greenspan’s own journal, no experimental design--simply case reviews, no independent evaluations--the reviews were conducted by his own graduate student, no identification of the outcome criteria, etc.). The discussion regarding Gluten/Casein free diets could have sent parents on the wrong track. There is actually no research showing that children with Autism have a higher rate of gastro-intestinal problems. The only quasi research study shows actually that the rate of this problem is actually less than the general population. Additionally, the only experimental study conducted shows that the diet was no more effective than a placebo. Furthermore, there is a total lack of understanding that perhaps those children that do have such problems perhaps it is a result of their very unusual eating patterns. In other words the G.I. difficulties might be the result of autism rather than the cause of it.
A pediatrician on the panel asserted that one does not need to rely on research because one can be guided by one’s personal clinical experience. I find this an extremely dangerous position. As I commented, this is why parents have all too often subjected their children to an array of intervention, some benign and some dangerous, but almost all wasting the precious time children have. Some of these interventions (e.g., music and dance therapy) may not be “dangerous” but they can take away time from the intervention that is effective. Others are even more problematic (e.g., Sensory Integration) because they undermine the effectiveness of proven intervention.
I fear parents who listened will be swayed by the charisma and passion of the panel members, will not recognize the misinformation, and ultimately their children will suffer. The bottom line is that children can make amazing progress as long as they receive the correct intervention. We are gratified that yearly we can graduate children from our program because they have become indistinguishable from their peers and most importantly are fully on the road to enjoying a high quality of life!
All that being said, we think people should listen to the podcast from the show which aired on Dec. 18, but we urge listeners to carefully and critically evaluate what is being said. Interventions can be appealing but lack substance and without being scientifically minded it is easy to be fooled into thinking that something makes a difference, when it is mostly an illusion. You can find the podcast (Real Player format) at KPCC’s website, but it is divided into three parts and the first hour has about 20 mins. on a different topic. We converted the podcast into a single MP3 file which contains only the Autism discussion. Both downloads are available at: autismpartnership.com/ap_media.html
RL
I must say it was upsetting to hear some of the information being presented by panelists. It was unfortunate that the first speaker who discussed ABA presented it in such a narrow way (e.g., done primarily at a table, not involving parents, working on limited skills, etc.). As I said, it is unfortunate that rigid and poor quality ABA does exist but good ABA can be both systematic and implemented in a natural and child-friendly way.
I was even more disturbed regarding the panelists’ continual discounting of solid research and the promoting of interventions that have limited to no data and in some cases has even been shown to be ineffective or harmful. For example, there is only one study on Floor Time. This study is riddled with fatal methodological flaws (e.g., published in Dr. Greenspan’s own journal, no experimental design--simply case reviews, no independent evaluations--the reviews were conducted by his own graduate student, no identification of the outcome criteria, etc.). The discussion regarding Gluten/Casein free diets could have sent parents on the wrong track. There is actually no research showing that children with Autism have a higher rate of gastro-intestinal problems. The only quasi research study shows actually that the rate of this problem is actually less than the general population. Additionally, the only experimental study conducted shows that the diet was no more effective than a placebo. Furthermore, there is a total lack of understanding that perhaps those children that do have such problems perhaps it is a result of their very unusual eating patterns. In other words the G.I. difficulties might be the result of autism rather than the cause of it.
A pediatrician on the panel asserted that one does not need to rely on research because one can be guided by one’s personal clinical experience. I find this an extremely dangerous position. As I commented, this is why parents have all too often subjected their children to an array of intervention, some benign and some dangerous, but almost all wasting the precious time children have. Some of these interventions (e.g., music and dance therapy) may not be “dangerous” but they can take away time from the intervention that is effective. Others are even more problematic (e.g., Sensory Integration) because they undermine the effectiveness of proven intervention.
I fear parents who listened will be swayed by the charisma and passion of the panel members, will not recognize the misinformation, and ultimately their children will suffer. The bottom line is that children can make amazing progress as long as they receive the correct intervention. We are gratified that yearly we can graduate children from our program because they have become indistinguishable from their peers and most importantly are fully on the road to enjoying a high quality of life!
All that being said, we think people should listen to the podcast from the show which aired on Dec. 18, but we urge listeners to carefully and critically evaluate what is being said. Interventions can be appealing but lack substance and without being scientifically minded it is easy to be fooled into thinking that something makes a difference, when it is mostly an illusion. You can find the podcast (Real Player format) at KPCC’s website, but it is divided into three parts and the first hour has about 20 mins. on a different topic. We converted the podcast into a single MP3 file which contains only the Autism discussion. Both downloads are available at: autismpartnership.com/ap_media.html
RL
Sunday, November 23, 2008
A debate about ABA in the UK
We recently were asked to assist in rebutting the arguments of a Local Education Authority (LEA) against the use of Applied Behavior Analysis (ABA) in the education of children with autism. An LEA is the U.K. equivalent of a U.S. school district. The original critique of ABA appears in the left column below and our response to each section appears in the right column. As you will see, the arguments made are based on misunderstanding of ABA and behavioral theory. According to the theories they cite, ABA should not work. But numerous controlled studies with autistic children clearly show that ABA does work. If one follows the scientific method, the only possible conclusion is that their theories are incorrect. After all, theories are just hypotheses that must be tested before they can be considered valid and when the evidence contradicts a theory, it should be revised or discarded. -JM
| LEA Critique of ABA | Response from AP |
Here are the full references for citations listed above:
Anderson, S.R., Avery, D.L., DiPietro, E.K., Edwards, G.L., & Christian, W.P. (1987). Intensive home-based intervention with autistic children. Education and Treatment of Children, 10, 352-366.
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91-97
Birnbrauer, J.S., & Leach, D.J. (1993). The Murdoch early intervention program after two years. Behaviour Change, 10, 63-74.
Cohen, H., Amerine-Dickens, M., & Smith, T. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.
Eikeseth, S., Smith, T., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7- year old children with autism. Behavior Modification, 26, 49-68.
Fenske, E.C., Zalenski, S., Krantz, P.J., McClannahan, L.E. (1985). Age at intervention and treatment outcome for autistic children in a comprehensive intervention program. Analysis and Intervention in Developmental Disabilities, 5, 49-58.
Handleman, J.S., Harris, S.L., Cebiberti, D., Lilleht, E., & Tomcheck, L. (1991). Developmental changes of preschool children with autism and normally developing peers. Infant-Toddler Intervention, 1, 137-143.
Handleman, J.S., Harris, S.L., Kristoff, B., Fuentes, F., & Alessandri, M. (1991). A specialized program for preschool children with autism. Language, Speech and Hearing Services in Schools, 22, 107-110.
Harris, S.L., & Handleman, J.S., (1994). Preschool education programs for children with autism. Austin, TX: Pro-Ed.
Harris, S.L., Handleman, J.S., Gordon, R, Kristoff, B., Fuentes, F. (1991). Changes in cognitive and language functioning of preschool children with autism. Journal of Autism and Developmental Disabilities, 21, 181-290.
Harris, S., Handleman, J.S., Kristoff, B., Bass, L., & Gordon, R. (1990). Changes in language development among autistic and peer children in segregated and integrated preschool settings. Journal of Autism and Developmental Disabilities, 20, 23-31.
Howard, J.S., Sparkman, C.R., Cohen, H.G., Green, G., Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359-383.
Leaf, R, & McEachin, J. (1999). A Work in Progress: Behavior Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism. NY: DRL Books
Leaf, R.B., Taubman, M, & McEachin, J.J. (2008) It’s Time For School: Building Quality ABA Educational Programs. New York, NY: DRL Books.
Leaf, R.B., McEachin, J.J., & Taubman, M. (2008). Sense and Nonsense in the Behavioral Treatment of Autism: It Has to be Said. New York, NY: DRL Books.
Lovaas, O.I. (1987). Behavioral Treatment and normal educational and intellectual functioning in young autistic children. Journal of Clinical and Consulting Psychology, 55(1), 3-9.
Lovaas, O.I., Koegel, R. L., Simmons, J. Q., & Long, J. (1973). Some Generalization and Follow-up Measures on Autistic Children in Behavior Therapy. Journal of Applied Behavior Analysis, 6. 131-166.
Matson, J., Benavidez, D., Compton, L., Paclawskyj, T., & Baglio, C., 1996. Behavioral Treatment of Autistic Persons: A Review of Research From 1980 to the Present. Research in Developmental Disabilities, 17-6, 433-465
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-Term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97(4), 359-372.
Mental Health: A Report of the Surgeon General. (2000). Chapter 3.
National Research Council. (2001). Educating Children with Autism. National Academy Press: Washington, DC.
New York State Department of Health. (1999). Clinical practice guideline: Report of the recommendations autism/pervasive developmental disorders. Assessment and intervention for young children (ages 0-3). Albany: Author.
Perry, R., Cohen, I., & DeCarlo R. (1995). Case study: Deterioration, autism, and recovery in two siblings. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 232-237.
Sallows, G.O, and Graupner, T. D. (2005). Intensive Behavioral Treatment for Children With Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110, 417-438.
Sheinkopf, S. J. & Siegel, B. (1998). Home-based behavioral treatment of young children with autism. Journal of Autism and Developmental Disorders, 28 (1), 15-23.
Smith, T., Groen., A., & Wynn, J.W. (2000). Randomized Trial of Intensive Early Intervention for Children with Pervasive Developmental Disorder. American Journal on Mental Retardation, 105, 269-285.
Weiss, M. J. (1999). Differential Rates of Skill Acquisition and Outcomes of Early Intensive Behavioral Intervention for Autism. Behavior Interventions, 14 (1), 3-22.
For more references on behavioral treatment and education of children with autism click here
Tuesday, October 9, 2007
Mike's 16th Brings a Turn in the Driver's Seat
One of our students, Mike, turned 16 last week. On Sunday he got to participate in a time-honored tradition of taking the wheel with dad in an empty parking lot. Mike has previously taken command of the the golf cart, but this was a whole new experience. Not just any car--it was his late grandfather’s classic Corvette. As you can see in this video taken by mom, he is thoroughly enjoying himself and we hope this becomes a tradition for Mike. It is unlikely that Mike will ever be able to get a driver’s license, but as long as there are empty parking lots on Sunday afternoons, who cares?
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
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
Thursday, September 5, 2002
A Tribute to Alecia Ellis
We were deeply saddened to learn of the death of Alecia Ellis, an extraordinary teacher who worked closely with us in Clark County, NV. Alecia possessed an extraordinary blend of talents, having a broad background in Speech and Language and superior skills in Applied Behavior Analysis. Exceptional with children, she also excelled at training and supervising educational staff and intervention service providers. A testament to her impact on the lives of students is this feature which appeared in Speech and Language Forum.
Alecia was always a pleasure to work with; as amiable as she was inquisitive and sharp. Her love for her work was only exceeded by the size of her heart. Those of us who knew her are better at what we do, and as individuals, because she touched our lives. -MT
Alecia was always a pleasure to work with; as amiable as she was inquisitive and sharp. Her love for her work was only exceeded by the size of her heart. Those of us who knew her are better at what we do, and as individuals, because she touched our lives. -MT
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