AUTISM                                  

 on the topics below to go directly to the information.

  
Autism: Was it the Vaccines?
Latest Research
Recommendations Based on 25 Years of Research Experience
Autism is Treatable!
Report on Autism
A Landmark Court Case

Two New Books:

                order: http://www.laboshpublishing.com/tipbook.html

Web Links:

Autism Coalition

ABA Resources for Recovery from Autism/PDD/Hyperlexia- Helpful advice from a father of a child recovering from autism.

Autism Research Institute- Devoted to conducting research, and to disseminating the results of research, on the causes of autism and on methods of preventing, diagnosing and treating autism and other severe behavioral disorders of childhood.
 

Autism Society of America

Autism WebCenter- Autism through an 11 years olds eyes.
 

Center for the Study of Autism- A huge vault of useful links.

CDC

Cure Autism Now

Families for Early Autism Treatment- a nonprofit organization dedicated to providing world class Education, Advocacy, and Support for the Northern California Autism Community.

First Signs

Geneva Centre for Autism- Offers useful articles for the treatment of autism.

"Learning Styles and Autism"- Discusses successful classroom strategies.

National Alliance for Autism Research

NIMH

Teaching Tips for Children and Adults with Autism- An autistic adult shares how teachers helped him.

The Autism Research Foundation- Keeps you up on the latest research.

The Center for the Study of Autism (CSA)- Provides original content about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions.

The National Autistic Society Surrey Branch- Supports families and professionals involved in the care of children and adults with Autistic Spectrum Disorders in Surrey and the U.K.

The Use of Secretin for the Treatment of Autism- From the University of Sunderland.

Tunnel Vision in Autism- Discusses stimulus over-selectivity.

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Latest Research-Newsweek February 28, 2005

A typical baby-Children develop at their own pace, so it's hard to know when an individual will learn a given skill. Here are some general guidelines to help mark your baby's progress.

Many children are able to:

at 7 months
*turn head when name is called
*smile back at another person
*respond to sounds with sounds
*enjoy social play (such as peekaboo)

at 1 year
*use simple gestures (wave 'bye-bye')
*make sounds such as 'ma' and 'da'
*imitate actions in play (clap when you clap)
*respond when told 'no'

at 18 months
*do simple pretend play (e.g., 'talk' on a toy phone)
*point to interesting objects
*look at objects that you point out
*use several individual words unprompted

at 2 years
say two-to four- word phrases
*follow simple instructions
*demonstrate interest in other children
*point to an object or picture when named

at 3 years
*show affection for playmates
*use four-to five-word sentences
*imitate adults and playmates
*play make-believe with dolls, animals, people

at 4 years
* use five-to six-word sentences
*follow three-step commands ('get dressed, comb your hair and wash your face')
*cooperate with other children

Studies show that children with autism undergo abnormal brain development from early infancy. Researchers found that affected kids start out with slightly smaller heads than average., then undergo explosive brain growth, with severe cases growing the fastest.

Treatments

Therapy: a child may receive more than one type at a time, along with speech and occupational therapy.

*Applied Behavioral Analysis: Intensive one-on-one drills instill social/language skills through positive reinforcement.

*Floortime: This child-directed approach stresses personal interactions.

*TEACCH: Uses children's individual interests to motivate them to learn in a structured environment.

*Social Stories: Uses stories to teach social skills and give insight into others' perspectives.

*PECS: Helps build communication skills through the use of pictures.

*RDI: Encourages experience sharing and emphasizes parental involvement.


At the forefront of ATN is Massachusetts General's Ladders program, where Dr. Margaret Bauman is using a multi-disciplinary approach. In addition to offering standard regimens like physical therapy and behavioral interventions, Bauman assesses overall health.

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Autism: Was it the Vaccines?

Click on this link to read the article. Autism: Was it the Vaccines?

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What I Would Do If I Were a Parent of An Autistic Child:
Recommendations Based on 25 Years of Research Experience

Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon

Over the past 25 years I have been fortunate to conduct research in several areas of autism and to collaborate with many of the leading pioneers, including biomedical (Bernard Rimland), behavior/education (Ivar Lovaas), and sensory (Temple Grandin, Guy Berard, Lorna Jean King, Melvin Kaplan, Helen Irlen). These experiences have helped me broaden my understanding of what can be
done to help these individuals.

One of the most difficult and stressful times for a family is when they first learn that their child has autism. Parents are then faced with a critical and life-determining question: What should I do to help my child? The decision on which treatments to implement (and not to implement) will likely determine the child's prognosis. I have outlined the steps that I would take if I were a parent of an autistic child.


Action Plan

First, I would write to the Autism Research Institute (ARI, 4182 Adams Ave., San Diego, CA 92116; fax: 619-563-6840) and request their free parent packet. Much on this information is on their website:  www.AutismResearchInstitute.com.The packet contains a wealth of information that describes ways to understand and to treat many problems associated with autism. It includes a sample issue of the quarterly ARI newsletter, the Autism Research Review International (ARRI). Subscribing to the ARRI is the best way to
keep informed ($18/year).

I would also contact the local chapter of the Autism Society of America (ASA) in my area. The autism chapter will likely provide valuable resources and contact numbers in the community and throughout the state. In addition, I would attend at
least one parent support group to see what they have to offer. ASA maintains a listing of most autism chapters throughout the country (toll-free: 800-3-AUTISM).

Important note: Before contacting my health insurance carrier, I would first read the policy. Many policies do not cover treatment services for autistic individuals. These insurance companies may reimburse therapies if the therapy is not specifically aimed at treating autism and if the insurance company is not aware that the child has autism. For example, if the child has a speech problem, the insurance company may pay for speech therapy.

Intervention

There are two major approaches that I would pursue simultaneously; and the earlier these interventions are started, the better the child's prognosis.

The first approach involves determining whether the child has health problems. These problems may include a critical need for essential vitamins and minerals (e.g., vitamin B6 with magnesium, DMG, vitamins A and C), gastrointestinal problems (e.g., leaky gut, yeast overgrowth, viral infection), high levels of heavy metals and other toxins (e.g., mercury, lead), food sensitivities and allergies, and more. The majority of autistic individuals have one or more of these problems.

The Defeat Autism Now! (DAN!) approach to autism addresses these biomedical issues. ARI distributes a diagnostic and treatment protocol titled Biomedical Assessment Options for Children with Autism and Related Problems. A list of practitioners who understand and know how to treat such medical conditions can be obtained by writing to ARI or visiting their website:
 www.AutismResearchInstitute.com Of the many treatments described in the protocol, I would first give the child vitamin B6 with magnesium, then dimethylglycine (DMG), and then the gluten-/casein-free diet.

Comment on drugs. Some pediatricians prescribe drugs to autistic children even though the Food and Drug Administration has not approved any drugs for treating autism. Additionally, almost every drug has harmful side effects. I sometimes hear reports of some benefit with Risperidal, Prozac, and Ritalin. However, it is very likely that even greater improvements will occur following other, non-drug, biomedical treatments (see ARI's publication: 34Q).

If the child talks very little or not at all, I would have the child tested to see if he/she has seizures. Seizure activity may affect speech production. An electroencephalogram (EEG) measures brain wave activity, and it may be able to detect seizure activity. If the child does have seizures, I would use non-toxic nutritional supplements to treat the seizures, such as vitamin B6 and DMG.

The second approach is behavior/education. Applied behavior analysis (ABA) is a well-documented and effective teaching method for many autistic children. This method involves 1-on-1 instructional sessions and utilizes educational tasks that have been developed specifically for autism. Teaching Individuals with Developmental Delays: Basic Intervention Techniques, written by O. Ivar Lovaas, is an excellent resource and describes, in detail, how to implement this method.

After the biomedical and behavior/education interventions are well underway, I would direct my attention to the child's sensory problems. Many autistic individuals suffer from a hypersensitive or hyposensitive sensory system. These problems may involve hearing (e.g., sound sensitivity, appears to be deaf), vision (e.g., light sensitivity, visual attention problems), tactile (e.g., sensitivity to touch, insensitivity to pain), vestibular (e.g., craves or resists certain movements, such as swinging), proprioceptive (e.g., excessive jumping), smell (e.g., sensitivity or insensitivity to odors), and taste (e.g., picky eater, pica behavior). There are
several interventions that can reduce or eliminate many of these problems, such as Auditory Integration Training (hearing), vision training and the Irlen lenses (vision), and sensory integration (vestibular/tactile/proprioceptive).

The three treatment approaches outlined above complement one another. Autistic individuals often become more attentive and more motivated to learn soon after treating their biomedical and sensory problems. A child may do well with only one these approaches, but the combination can lead to amazing results, and even recovery for some children.

The next step. It is also worth looking into other effective interventions for autism, such as structured teaching, social stories, the Greenspan method, Picture Exchange Communication System (PECS), and Grodin's relaxation/visual imagery techniques.

Family issues. Raising an autistic child can be very stressful to the entire family. Siblings sometime feel ignored because so much of the parents' attention is directed toward the autistic child. Divorce is quite common among families with an autistic child. Additionally, relatives and close friends may distance themselves. It is important to be aware of these dangers and address them if they should occur.

Finally, it is important to be a strong advocate for the child. Many professionals are aware of the symptoms associated with autism. However, they do not know how to treat them. Information is a powerful tool. I would keep all of the child's documents and diagnostic test results in one well-organized folder. Whenever possible, I would provide relevant articles and other informational materials to
therapists and other professionals who work with the child. Like many other parents of autistic children, I would likely wind up teaching professionals how to work with the child.

It is important to realize that autism is treatable, and there are many resources available, such as books, newsletters, Internet websites, and conferences. I would start with the following resources:

Books                                       Return to Top         

General Resource

Autism Research Review International newsletter (quarterly). San Diego: Autism Research Institute

Gerlach, E.K. (2000). Autism Treatment Guide. Second Edition. Arlington, TX: Future Horizons.
 

Hamilton, L.M. (2000). Facing Autism. Colorado Springs, CO: Waterbrook Press.
 

Biomedical Approach

McCandless, J. (2002). Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder. Paterson, NJ: Bramble Books.
 

Pangborn, J.P., & Baker, S. (2002). Biomedical Assessment Options for Children with Autism and Related Problems. San Diego: Autism Research Institute.
 

Seroussi, K. (2000). Unraveling the Mystery of Autism and Pervasive Develop-
mental Disorder. New York: Simon & Schuster.

Behavior/Education
 

Leaf, R., & McEachin, R. (1999). A Work in Progress: Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism. New York: DRL Books.
 

Lovaas, O.I. (2002). Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro Ed.
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Congressional Testimony of Bernard Rimland Ph.D.

November 19, 2003.
AUTISM IS TREATABLE!

Thank you for inviting me to participate in these important hearings on the crucial need for more effective treatments for autistic children. I am Bernard Rimland, Ph.D. My Ph.D. is in experimental psychology and research design. My specialty is research methodology. I have been a full-time research scientist for over 50 years, 45 of those years having been devoted to a 7-day-a-week search for effective treatments for autistic children.

My autistic son Mark was born in 1956. At age 5 we were told that he was hopeless and untreatable and that we should institutionalize him. We did not. He was still in diapers at age 7 and did not ask or answer a question until age 8. Today, at age 47, he is an internationally recognized artist who has been interviewed on national TV, including the CBS, CNN and PBS networks as well as a Japanese television network.

My 1964 book, Infantile Autism, destroyed the prevailing belief that autism was a psychological disorder, caused by bad mothering, which could be treated with psychotherapy for both mother and child. My book also demolished the myth that mainstream professionals could be counted upon to base their practices on objective, scientific evidence, rather than dogma. Even today dogmatic, rather than pragmatic, beliefs prevail. (See, for example, the FDA policy on the non-treatability of autism, which follows.) Frustrated by the apathy and indifference of the status quo, I founded the Autism Society of America in 1965, and the Autism
Research Institute in 1967, to help bring about needed change. I founded the Autism Research Institute for the explicit purpose of determining the cause of and identifying effective treatments for autism. I thank you for holding these hearings, which are 40 years overdue.

Today, for the first time in history, there are successfully treated autistic children — living, breathing, speaking autistic children — living among us and enjoying their lives. These mainstreamed children, who no longer carry the dread label
“autistic,” owe their liberation from autism to treatment modalities which were, and still are, ridiculed, reviled and rejected by most of the recognized authorities in the educational and medical autism establishments. Nevertheless, the new treatment approaches are rapidly convincing many of the most skeptical critics. Many of these recovered autistic children are the sons and daughters of physicians, conventionally trained M.D.s who looked at and wisely rejected the sparse and faulty options offered by conventional medicine. You can see and hear eight of these enlightened doctors tell their own stories on videotapes available from the Autism Research Institute: “Physicians who have successfully treated their own autistic children.” These videotapes were made at panel
presentations at the 2001 and 2002 conferences of the Autism Society of America. The research program of the Autism Research Institute devotes serious consideration to all forms of treatment for which there is significant evidence of benefit to autistic children, including both behavioral and biomedical approaches.

A major reason for my founding the Autism Society of America in 1965 was to advance the cause of early behavioral intervention, commonly known today as “ABA.” I was firmly convinced by my research that this form of treatment could bring about remarkable improvement in many autistic children, despite its rejection by most professionals who were considered authorities on autism. Today the mainstream community fully accepts the value of ABA, although it took well over 20 years for ABA to receive mainstream acceptance. Now that the behavioral approach is widely accepted and has reached the mainstream, we are devoting most of our efforts to advanced and effective biomedical treatments. We feel that drugs are not the answer—no child is autistic because of a deficiency of Ritalin or Risperdal. All drugs confer significant adverse side effects.

By 1995, the beginnings of what is now widely recognized as an epidemic of autism were clearly evident. Also clearly evident was the fact that a great many autistic children were showing remarkable improvement that could be attributed to treatments that did not involve the use of drugs—treatments that were commonly regarded as “alternative medicine.” (Much of alternative medicine is better described as “intelligent medicine.”) In January, 1995, together with two esteemed colleagues, pediatrician Sidney M. Baker, M.D., and chemist Jon Pangborn, Ph.D., whom I regard as the world’s most knowledgeable experts in the metabolism of autistic children, I convened the first Defeat Autism Now! Think-Tank, comprised of approximately 30 carefully- selected physicians and scientists on the cutting edge.

AUTISM RESEARCH INSTITUTE • 4182 Adams Avenue, San Diego, CA 92116 edge of autism research. The title, Defeat Autism Now! (DAN!), was a response to the complacency and lack of urgency that were so evident at NIH, and at the medical schools, where research on the treatment of autism was virtually non-existent, except for experimental trials of various drugs designed for use on
adults.

The Defeat Autism Now! movement has proven extremely successful. We have recently completed our 12th DAN! Conference in Portland Oregon, and the next
DAN! Conference is scheduled for the Washington, DC area April 16-18, 2004. We also have held a series of mini-DAN! conferences for the training of physicians and other healthcare practitioners, and are developing a curriculum for teaching nurses how to implement the DAN! approaches to diagnosis and successful treatment of autism.
www.AutismResearchInstitute.com   or www.DefeatAutismNow.com. 

There are at present several hundred DAN! physicians in the U.S. and some overseas. Most important, there are thousands of children, many, as noted above, the sons and daughters of DAN! physicians, who are no longer diagnosed as autistic and who have been mainstreamed in their school systems.

The DAN! program is having excellent success! Despite the obviously good results we are achieving, there are a great many obstacles to overcome. Onemajor obstacle is the obstinate insistence by the Food and Drug Administration that there is no effective treatment for autism, and that it is quackery to claim otherwise. I would like to submit as part of my testimony the following letter
written by myself and Jon Pangborn, Ph.D. (also the father of an adult autistic son) to Mark McClelland, M.D., Commissioner of the FDA. Note that the FDA claims on its website that autism is hopeless and untreatable, despite a great deal of scientifically documented evidence to the contrary. In our letter of May 8, 2003 to Dr. McClelland, which has yet to receive a satisfactory reply, I cite some of the evidence which disproves the contentions of the FDA policy statement. For example, I cite, and placed into evidence, 22 published studies, based on research conducted by scientists in 6 countries, demonstrating that vitamin B6 (usually in combination with the mineral magnesium) brings about highly significant improvement in autistic children and adults. Eleven of these studies have been double-blind, placebo-controlled experiments, and many have used objective physiological measures, such as improvement of various electrophysiological indices of brain function, and the reduction or removal of abnormal substances in the blood or urine of autistic children. (My son Mark has been taking 1,000 mg/day of vitamin B6 [along with 400 mg of magnesium] each day for 40 years. I doubt that there is a healthier person on this continent.)

Action is needed!

Let me close with a concrete proposal and a challenge:I urge that the Federal Government undertake the evaluation of autistic children who have been treated by the doctors in our Defeat Autism Now! (DAN!) movement, as compared to children treated by physicians who adhere to the conventional, much less effective treatment modalities. I propose that the NIH fund immediately, on a high-priority basis, a low-cost telephone or mail questionnaire survey of 1,000 parents of autistic children, divided into two groups: Group A. Parents whose autistic children have been patients, for one year or longer, of 25 DAN! doctors selected by the Autism Research Institute. Twenty patients would be selected randomly from the pool of autistic patients treated by each of the 25 DAN! doctors. Group B. Similar to Group A, except that the children would be from the practices of 25 pediatricians selected by NIH or
the American Academy of Pediatrics.

The survey would ask for such information as:

1. The child’s symptoms, pre- and post-treatment.
2. Any objective criteria of improvement (e.g.,mainstreamed? IQ improvement? Speaking? Number ofwords/sentences? etc.).
3. The parents’ rating of improvement (10-point scale).
4. Which treatments were provided?
5. Which treatment modalities have helped the child most?

The parent responses to questions 1, 2, and 3 wouldbe analyzed by judges who are blind to whether the patientswere in Group A or Group B. This would be an excellent launching pad for a long-neglected and long needed federal program of research on effectiveautism treatments. The hour is late — let’s move ahead! There are at present several hundred DAN! physicians in the U.S. and some overseas. Most important, there are thousands of children, many, as noted above, the sons and daughters of DAN! physicians, who are no longer diagnosed as autistic and who have been mainstreamed in their school systems. The DAN! program is having excellent success!

General Resources - Autism Society of America - www.autism-society.org Biomedical Approach - Defeat Autism Now! (DAN!) -  www.AutismResearchInstitute.com
Behavior/Education - Families for Early Autism Treatment -  www.feat.org/ Congressional Testimony of Bernard Rimland, Ph.D., November 19, 2003

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REPORT ON AUTISM 2003

Reprinted in part from:

California Health and Human Services * Agency State Of California

Autism is a lifelong neurological disorder that primarily strikes males. Communication and social interactions are severely impaired for persons with autism. Unable to learn from the natural environment as most children do, the child with autism generally shows little interest in the world or people around him. Although some children with autism develop normal and even advanced skills, most exhibit a wide range of behavioral problems. Autism, in reality, is a lifelong developmental disability that profoundly affects the way a person comprehends, communicates and relates to others. Since the 1980s, California has experienced dramatic increases in the number of children diagnosed with autism.

Autism, once a rare disorder, is now more prevalent than childhood cancer, diabetes and Down Syndrome. The sustained increase in the population of persons with autism, compared to other developmental disabilities, is causing fundamental changes in the Developmental Services System. The information contained in this report, along with other formal epidemiological studies, confirms that the increase in prevalence of autism in California is real and requires special attention. From December 1998 to December 2002, the population of persons with autism in California’s Developmental Services System nearly doubled. This unprecedented 97 percent increase in four years did not include children less than three years of age, persons classified with less common forms of autism, or persons who are suspected of having autism but are not yet diagnosed. The total number of persons with autism served statewide
increased from 10,360 in December 1998 to 20,377 in December 2002. Between 1987 and December 2002, the population of persons with autism (Codes 1 & 2) increased by 634 percent. The average age of persons with autism entering the system has shifted toward much younger children in recent years. The increase in the number of younger children diagnosed with autism means that entitlement services required by each individual with autism would occur for a significantly longer duration. Primarily two age groups will drive the fiscal impact on the State’s budget - very young children and young adults. For very young children, the
national emphasis on early intervention delivered to the young child in the natural environment has created increased demand for earlier and more intensive behavioral and educational interventions. As more young children with autism reach late adolescence and adulthood, the need for out-of-home residential services will increase and have a substantial impact on the Department’s budget. By December 2002, 84 percent of the entire population of persons with autism was under 25 years of age, with 70 percent of the population under 14 years old. The increase in the autism caseload has continued to accelerate in recent years with no sign of lessening. If this trend continues, in approximately four years the number of person with autism in the Developmental Services system will equal each population of persons with cerebral palsy and epilepsy in the system. Even after the number of persons with autism entering the system is adjusted for an increasing California population, the prevalence of persons with autism continues to accelerate.

The long-range implication of this sustained increase in the number of persons with autism is a profound and enduring impact on the affected children, their families, public services, the state budget and the overall health status of California citizens.

AUTISTIC SPECTRUM DISORDERS DEPARTMENT OF DEVELOPMENTAL
SERVICES

The California regional center system consists of 21 nonprofit and independent agencies, which are under contract with the Department of Developmental Servicesto provide services to persons with developmental disabilities. California’s Developmental Services System was created in 1969. Originally, autism was not included in the Lanterman Developmental Disabilities Services Act that established the statewide system of services. Autism, a low incidence disorder in 1969, was added to the Lanterman Act in 1971 largely because the impact of autism on children was substantially disabling and expected to be a lifelong condition. California’s Developmental Services System recognizes only professionally diagnosed individuals with mental retardation, autism, epilepsy,
cerebral palsy and conditions similar to mental retardation as conditions eligible for services. Persons diagnosed with one of the other Pervasive Developmental Disorders (PDD) including Pervasive Developmental Disorder, Not Otherwise Specified (PDD, NOS), Asperger’s Disorder, Rett’s Disorder and Childhood Disintegrative Disorder are not eligible for regional center services unless they
have impairments that constitute a substantial handicap as defined by California Code of Regulations Title 17. Eligibility for PDD, NOS and Asperger’s is determined on a case-by-case basis according to each individual’s functional ability. As the caseload of persons with autistic spectrum disorder (ASD) has increased in California, services have expanded, along with a growing interest in
and demand for objective measures that describe the population of persons with ASD served by the regional center system. Requests for data on autism from the Department of Developmental Services (Department) range from simple counts of persons with ASD to annual purchase of service figures. Data requests come from families, regional centers, the Association of Regional Center Agencies,
allied agencies, universities, and individual scientists researching the phenomena related to ASD.In response to increased demands for information on the population of persons with ASD in California, the Department is publishing this four-year report entitled Autistic Spectrum Disorders - Changes in the California Caseload, An Update: 1999 through 2002 (Update Report) to update its last report released in 19991. The 1999 Report documented that beginning in the early 1980s California began to see an increasing and dramatic rise in the number of persons with ASD. The number of persons with autism increased 273 percent from 1987 through 1998compared to increases ranging from 35 and 49 percent over the same time period for other eligible conditions including mental
retardation, cerebral palsy, and epilepsy.

This Update Report presents information on selected characteristics of the population of persons with ASD that are of greatest interest to families, regional center staff, legislators, health professionals, vendors, service agencies and research scientists. In some cases, selected population characteristics are compared to population characteristics in prior years to highlight the scope of
change. It is the intent of the Department to make fundamental information about California citizens with ASD available to all groups that need the information to plan and develop resources and to ascertain a better understanding of ASD in California. It is the Department’s hope that this report will encourage the scientific community to further pursue the investigation of autism epidemiology, i.e., to subject the numbers reported in this document to scientific scrutiny in order to establish the highest level of certainty regarding changes in the population of persons with autism in California.PrefaceNote to Readers1 The 1999 Report, Changes in the Population of Persons with Autism and Pervasive Developmental Disorders in California’s Developmental Services System can be downloaded at http://www.dds.ca gov/autism/pdf/autism_report_1999.pdf The information presented in this report is purely descriptive in nature and standing alone, should not be used to draw scientifically valid conclusions about the incidence or prevalence of ASD in California. The numbers of persons with ASD described in this report reflect point-in-time counts and do not constitute formal epidemiological measures of incidence or prevalence. The information contained in this report is limited by factors such as case finding, accuracy of diagnosis and the recording, on an individual basis, of a large array of information contained in the records of persons comprising California’s Developmental Services System. Finally, it is important to note that entry into the California DevelopmentalServices System is voluntary. This may further alter the data presented herein relative to the actual population of persons with autism in California.

AUTISTIC SPECTRUM DISORDERS DEPARTMENT OF DEVELOPMENTAL SERVICES 1

Background

In 1999, the Department reported a rapidly growing and unexplained substantial increase in the number of persons with autism entering California’s 21 regional centers statewide. The 1999 report, Changes in the Population of Persons with Autism and Pervasive Developmental Disorders in California’s Developmental Services System, tracked figures throughout the state between 1987 and 1998. This Update Report includes counts of persons with autism previously reported, i.e. from 1987 to 1998, and brings up to date the number of persons with autism in the past four years 1999 through December 2002. At the same time the Department was reporting an unexpected and unexplained rise in the number of persons with autism in California, other states were reporting substantial increases in the number of new cases as well. Concomitantly, beginning in the late 1990s, formal studies of incidence and prevalence 2 were initiated both within the United States and in countries around the world including the United Kingdom, Ireland, Australia, Japan and Israel. At the time of this report, other reports on populations within the United States and from other countries have documented consistent increases in the prevalence of autism and other spectrum disorders, causing some scientists and others in the United States and around the world to describe the reported increases in autism as an “epidemic.” Reports of higher prevalence rates of autism and the broader ASD spectrum including PDD, NOS and Asperger’s Disorder have stirred controversy and
debate about what is causing the increase, e.g., Wing & Potter, 2002. The controversy about the cause(s) of the increase in prevalence not withstanding, it is now generally accepted by the scientific community that the prevalence ofASD is much higher than previously thought (Charman, 2002). An international discussion is underway regarding the significance of the changes in measured rates, introduction of incidence and prevalence of persons with ASD. The outcome of that discussion will depend on the results of more carefully controlled long-range studies.

In the meantime, there is growing worldwide concern over the rising number of persons who require and expect services to better manage the effects of ASD. The long-term fiscal impact of an increasing caseload on the healthcare delivery system has not yet been determined. Importantly, there is more funding for basic research into finding the cause(s) of ASD. Concerned about the
increase in the number of persons with ASD, the California Legislature and Governor in 1998 created and funded the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California, Davis Medical Center.

To read this complete report go to:

 www.dds.cahwnet.gov/autism/autism_main.cfm

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BEFORE THE TENNESSEE STATE DEPARTMENT OF EDUCATION

A Landmark Case:

A remarkable Opinion and Final Order has been issued in an administrative "IDEA Due Process Hearing" in a Tennessee case a few days ago. Congratulations are in order for the parents' and child's attorneys Gary Mayerson of New York and Theodore Kern of Knoxville who were the winning attorneys in this case. The case is Zachary Deal v. Hamilton County Dept. of Education (SEA TN 2001). The citation to the case indicates this was a State Hearing Officer decision pursuant to the State Education Agency in Tennessee.

We ordinarily do not cover Hearing Officer decisions because they do not have the value as "precedent" that one might look to in cases at the level of the U.S. Circuit Courts of Appeals, or the U.S. Supreme Court.

But this case was obviously so well prepared and argued that it stands as a text book example of how to do it.


ZACHARY DEAL, Petitioner, No. 99-59

vs.

HAMILTON COUNTY DEPARTMENT OF EDUCATION, Respondent.

A. JAMES ANDREWS Administrative Law Judge

MEMORANDUM OPINION AND FINAL ORDER


INTRODUCTION


Zachary Deal is a seven-year-old boy with highly motivated college educated parents. Zachary’s parents became concerned when he appeared slow in developing speech at eighteen months of age. At his two-year checkup, Zachary’s pediatrician reassured his parents and suggested they revisit the issue if he had not begun speaking within the next six months. Around this time, a relative suggested the possibility that Zachary might be autistic and Mr. and Ms. Deal began to research the subject of autism on their own.

A colleague of Mr. Deal’s referred them to both a Chattanooga child psychologist, Dr. Susan Speraw, and to the Chattanooga Speech and Hearing Center. Zachary was tested and found to be significantly delayed in speech and language development. Because Zachary had not yet reached his third birthday, the Deals were referred to the Tennessee Early Intervention System (“TEIS”) for
early childhood services. Under a TEIS developed plan, Zachary received speech and language therapy as well as some in-home services.

Ms. Deal agreed to a referral to the Hamilton County Department of Education (“HCDE”) in February, 1997, and first met with a HCDE representative in May of 1997. The HCDE and the parents developed the first Individualized Educational Plan (IEP) for Zachary right after his third birthday. Under the terms of Zachary’s initial IEP, and a second one prepared in October, 1997, Zachary attended the Ooltewah Elementary School (OES) where he was assigned to a class with other developmentally delayed children.

It was during this initial assignment to OES that the Deals learned about the Lovaas style applied behavioral analysis (“ABA”) intervention and its purported extraordinary results for young children afflicted with autism. On their own, they began implementing a Lovaas style program to teach Zachary at home. They selected a program developed by the Center for Autism and Related Disorders (“CARD”). The CARD program is patterned after a methodology developed and tested with autistic children by Dr. Ivar Lovaas at the University of California at Los Angeles. The methodology employs intensive one-on-one instruction in a format known as mass discreet trials ABA. It relies heavily on extremely structured teaching and comprehensive data collection and analysis.

Dr. Lovaas tested this approach to teaching autistic children in the 1980’s and evaluated the results by comparing the gains in IQ and performance of the children who received this intensive one-on-one ABA instruction with a control group of children who received the normal interventions offered by their local school systems. Dr. Lovaas published the results of his experiment in 1987 and, for the best outcome students, he reported dramatic gains in IQ and in their ability to function within the regular education setting.

Virtually all students in the Lovaas study group showed significant improvement in their disabling condition. A follow up study published by another researcher in 1993 found that 47% of the students who had received the ABA intervention went on to become “indistinguishable” in their regular education classrooms.

The Deals and Dr Speraw were convinced that Zachary was making exceptional progress because of the ABA program they were funding in their home. In a May, 1998 IEP meeting, the Deals asked that the Lovaas style ABA be included in Zachary’s summer services program and that HCDE pay for those services. This request for payment came after Mr. and Mrs. Deal had observed Zachary’s progress in the system they were funding and providing in their home. When HCDE refused the request for Lovaas style ABA for Zachary, the Deals asked for data supporting the efficacy of the HCDE approach to teaching autistic children. These types of data were never provided to the Deals.

The HCDE has never funded an intensive Lovaas style ABA program and the HCDE had no evaluation data, self-generated or otherwise, on the effectiveness of its preferred approach for teaching autistic children. Notwithstanding the fact that it had virtually no scientific data to support the services it offered the Deals for Zachary, HCDE, rejected the Lovaas based methodology in large part
because HCDE believed there was insufficient scientific proof for that particular methodology.

The Lovaas style ABA also contradicts, at least in its initial application, twenty-five years of special education philosophy and experience by eschewing the mainstream/inclusion goal for the young autistic child in favor of intensive one-on-one learning in a non-distracting environment. It is also more expensive than traditional and more widely used approaches for teaching autistic children.

The Deals rejected the IEP for 1999-2000 because it did not offer Lovaas style ABA services and because they felt it did not provide sufficient opportunity for Zachary to be educated with typically developing peers. After rejecting the 1999-2000 IEP, the Deals enrolled Zachary in a private preschool, the Primrose School, and on September 16, 1999 requested this due process hearing.

Zachary performed well at the Primrose School and continued to make significant progress in his ABA sessions. During the course of this hearing, the Deals amended their original request and added complaints alleging the HCDE violated the IDEA by denying Zachary related services and his ABA program over the course of the summer.

The due process hearing in this matter was initiated by an eighteen page request following, among other things, the HCDE’s refusal to include intensive Lovaas style ABA program in Zachary’s IEP for the 1999-2000 school year. After extensive pretrial discovery, litigation, and procedural wrangling, the hearing began on March 15, 2000. Zachary’s attorneys presented a comprehensive and detailed argument for the Lovaas style ABA methodology and its positive impact on Zachary Deal. The HCDE presented an equally thorough case in defense of the interventions it offered for Zachary. Neither side left a stone unturned or un-thrown in attacking the efficacy of the educational approach advocated by the other side.

The hearing began on March 15, 2000 and concluded on February 13, 2001. Because of the voluminous record, the court allowed counsel ample time to prepare their lengthy post- trial briefs and reply briefs. During the twenty seven full days of testimony, the court heard twenty different fact and expert witnesses testify on virtually all aspects of Zachary Deal’s disability, his various educational placements, the progress he has or has not made, and the efficacy of the educational methodologies and related services he has and has not received or accessed.

In addition to observing witnesses and listening to testimony, the court has reviewed tens of thousands of pages of exhibits and several video tapes. Finally, the court, at the insistence of the HCDE and after the testimony was concluded, personally observed Zachary (1) in his regular education class, (2) at a “pull out” speech therapy session at his school, (3) at a recess session playing with his classmates, (4) at a second speech therapy session with his private speech therapist, and (5) participating in a Lovaas style ABA therapy session in his home.

The court cannot imagine a more complete record upon which to base its findings.

I. WITNESS CREDIBILITY

Often the finder of fact, be it a jury or an administrative law judge, has to form opinions as to credibility on precious little information. examinations and cross examinations by opposing counsel, however, the court had an opportunity to observe the important witnesses at great length and is quite confident in assigning weight to their testimony.

After viewing their demeanor, responsiveness, and whether or not witnesses were forthright in their answers as opposed to evasive or combative, the court makes the following findings as to witness credibility and the weight to be given to particular testimony:

The court finds Dr. Susan Speraw credible.

The court finds Dr. James A.. Mulick credible and well versed by virtue of botheducation and experience in the various methodologies available to address the needs of autistic children.

The court finds Irise Chapman, the Director of Exceptional Education for the HCDE, credible.

The court finds Dr. Ilene Schwartz, an expert on autism and methodologies applicable to the treatment of autism, to be credible and gives great weight to her testimony. Although Dr. Schwartz was produced as an expert on behalf of the HCDE, her testimony was balanced and well supported by her education and experience and rang true in all respects. Dr. Schwartz testified knowingly about the history, theory, and current practice in Lovaas style ABA. Tr. 6650-53. Her open mind and obvious commitment to furthering the knowledge base for educating autistic children made her a compelling witness.

The court finds Mr. Keith Amerson, an employee of and advocate for the Center for Autism and Related Disorders, credible.

The court finds Ms. Julie Reyes, a pre-school teacher in the private Primrose School credible.

The court gave reduced weight to Ms. Jane Dixon’s testimony. In part, this is becauseMs. Dixon steadfastly maintained she had an open mind when it came to considering which methodology would be appropriate for Zachary when the record clearly demonstrated she had a preconceived and unwavering position as someone opposed to Lovaas style ABA in any form. See, e.g., Davenport at
Tr. 1008-12. Ms. Dixon also maintained that she had never told the Deals that cost was a factor involved in HCDE’s decision to deny Lovaas style ABA to Zachary even though the Deals produced a tape recording of a meeting they had with Ms. Dixon in which Ms. Dixon clearly announces that cost is a factor. Tr. 2436-37.

The court finds Lisa Steele, an experienced special education teacher with HCDE, a credible witness.

The court does not credit the testimony of Paula Wiesen, an experienced speech and language pathologist and preschool CDC teacher with HCDE. See e.g., Tr. 1557, wherein Ms. Wiessen equates sitting in the vicinity of typically developing children with interaction and Tr. 1558, 1787, 1791 wherein she evades straightforward questions. In particular, the court finds that when she stated that she could not possibly have said whether or not Zachary needed summer services it was an untruthful answer. Tr. 1569-70. The record demonstrates clearly that she had sufficient training, education, and first hand experience with Zachary to have made a recommendation one way or the other.

The court gives little weight to the testimony of Ann Kennedy, a specialist in special education with HCDE who became an educational diagnostician and consultant for autism for the HCDE during the course of the hearing. In part, this is because Ms. Kennedy demonstrated a closed mind and steadfast adherence to preconceived notions. See, e.g., Tr. 1811, wherein she testifies that she believes intense instruction is itself aversive for autistic children and Tr. 1821-25 and Tr. 1884-1889, wherein she constructed her own “experiment” to evaluate Lovaas style ABA. The experiment consisted of two hours per week of what she believed ABA therapy would look like despite the fact that the Lovaas report found anything less that ten hours per week showed no effects whatsoever. Also, during her testimony in November of 2000, Ms. Kennedy, testifying as a HCDE autism expert, showed an appalling lack of knowledge or interest in the results of the Lovaas replication studies. Tr. 5492.

The court finds Sandra Jerardi, a lead teacher for HCDE, to have been both evasive and confrontational in her answers. See, e.g. Tr. 2249, 2165, 2349, 2350, 2574. In addition, many of her answers lacked credibility. See, e.g., Tr. 2352, 2611, and 2168, wherein her answer as to why she referred to this matter as a sensitive case lacked credibility and Tr. 2176-81, wherein she excuses obvious flaws in a study which purports to validate methods of which she approves. Additionally, Ms. Jerardi testified that Zachary did not need a twelve month IEP because he was making such good progress (Tr. 2917) and then contradicted herself a few moments later when she testified that she had not seen any results that would cause her to seriously consider Lovaas style ABA services for Zachary (Tr. 2943). She also testified that once a methodology is working for a child it would be inappropriate to change methodologies, yet, she continues to refuse even to consider Lovaas style ABA for Zachary despite the fact that it has been demonstrated to be effective for him. Id.

The court finds Lisa Holder credible.

The court finds Tamilla Burt credible.

The court finds Philip Deal credible.

The court finds Maureen Deal credible.

The court finds Donna Palmer, a HCDE school psychologist, credible.

The court finds Judy Bailey, a behavior analyst and the Associate Director of Professional Support Services with the TEAM Evaluation Center, credible.

The court finds Tracey Lynn Ford, the mother of an autistic child who had received HCDE services, credible.

The court finds Jan Marie Lewis, a speech and language service provider for HCDE, to be credible.

The court finds Scott Hooper a school psychologist with HCDE not credible When he testified, Mr. Hooper demonstrated that he would go to any length to testify favorably for HCDE. He often took very strong positions favorable to the HCDE in areas and on subjects where he had little or no knowledge or expertise. For example, he enthusiastically criticized the Lovaas style ABA even though he had never taken the time to observe a complete session Tr. 5851; and significant parts of the record in this case before he testified. Tr. 6024, Tr. 6034, Tr. 6040-41. See also, Tr. 5860, wherein Mr. Hooper touts an alternative to Lovaas style ABA when the alternative had no research foundation or support whatsoever. He did this while simultaneously criticizing the Lovaas methodology because of perceived flaws in the research study design.

II. FINDINGS OF FACT

Having weighed the credibility of witnesses and based on the record in this case, the court finds the following facts:

1. Zachary Deal was born on July 19, 1994 and moved to Tennessee with his parents when he was 18 months old. Tr. 1247-48.

2. At 2 years of age his parents, Philip and Maureen Deal discussed their concern that Zachary could not speak with their pediatrician. Tr. 1247-48.

3. At this same period of time, his mother became concerned that he might be autistic and began seeking out information on that condition. Tr. 1249.

4. Mr. Deal also sought help and was referred to Dr. Susan Speraw. Tr. 1252

Dr. Speraw has a Ph.D. in Clinical Psychology and has taught developmental psychology at the University of Tennessee College of Medicine. Tr. 42, 46.

Dr. Speraw was qualified and accepted by the Hamilton County Department of Education (HCDE) as an expert in developmental pediatrics, psycho-educational testing, autism, and appropriate intervention for autistic children. Tr. 75.

Autism is a neurological disorder that impacts a child’s ability to communicate, to process information, to form~ social relationships; and to interact with the world. Tr. 54.

Autistic children need intensive instruction to learn things that for most people seem to be second nature. Tr. 57.

Until the last ten to fifteen years, the traditional view of autism had been that, barring mis-diagnosis or unknown factors, an autistic child would remain mentally retarded or cognitively limited for life. Tr. 436.

Zachary’s parents had Zachary evaluated at the Chattanooga Speech and Hearing Center on February 4, 1997. T. 1252; Ex. 2.

The Chattanooga Speech and Hearing Center found Zachary to be delayed from 22-25 months in developing his speech and language and referred the Deals to the Tennessee Early Intervention System (TEIS). Tr. 1252-54.

TEIS provides services for special needs children who have not yet reached the age of eligibility for services from their local public school system. Id.

Although the Deals do not remember receiving a copy, Zachary was also the subject of a physical therapy evaluation during this same period of time. Tr. 1254-55, 3917.

The physical therapy evaluation noted “toe walking” but was otherwise unremarkable. Tr. 1255.

The Deals also had Dr. Speraw complete a psychological evaluation of Zachary. Tr. 118, 1256.

Dr. Speraw could not test Zachary’s intelligence because he had not developed to the two year level. Tr. 115.

Mr. Jason Palmer of TEIS then prepared an initial plan for dealing with Zachary’s deficits. Ex. 3.

Based on Mr. Palmer’s recommendation, the Deals toured the Siskin Center, a facility serving special needs children. Tr. 1257-58.

Mrs. Deal found the Siskin Center to be chaotic and devoid of typically developed preschool children. Tr. 1258-59.

The Deals decided on an Individualized Family Service Plan prepared in consultation with TEIS. Tr. 1259-60.

The in-home teacher provided by TEIS, made 35 visits to the Deal’s home prior to Zachary’s third birthday. Tr. 4255-56; Ex. 300.

The IFSP prepared by TEIS did not recommend a formal occupational or physical therapy assessment. Ex. 7; Tr. 4255.

On February 20, 1997, Mrs. Deal gave TEIS permission to refer Zachary to HCDE. Tr. 1264-65; Ex. 300.

Ms. Jane Dixon, an HCDE Special Education Supervisor, met with Mrs. Deal on May 19, 1997 and at the meeting she discussed programs available for autistic children without mentioning the Lovaas style ABA as a methodology for the parents to explore. Tr. 3444.

At the time of the May 19, 1997 meeting, TEIS had not forwarded its information to HCDE nor’ had HCDE taken affirmative steps to obtain it. Tr. 1269.

HCDE arranged for an initial assessment of Zachary in June, 1997. Tr. 1272.

A number of assessment input documents were prepared in June, 1997. Exs. 15-19, Exs. 21-22.

HCDE scheduled an Individualized Education Plan (IEP) Team meeting for July 30, 1997. Ex. 24.

HCDE and Zachary’s parents completed an initial IEP for Zachary on July 30, 1997. Tr. 1276; Ex. 29.

A regular education teacher did not participate in the July 30, 1997 IEP Team meeting. Tr. 3464.

Zachary Deal presented as essentially nonverbal in August of 1997, Tr. 3530.

Zachary Deal presented with some self stimulation behaviors routinely observed in autistic children such as hand flapping and toe walking.

The initial IEP was approved by the Deals and called for a thirty day assessment of Zachary at Ooltewah Elementary School (OES) and called for Zachary to receive two

forty-five minute sessions of individual speech therapy per week during the thirty day assessment period. Ex. 29; Tr. 1271, 1277.

During the 30 day assessment period, Zachary attended school from 8:30 a.m. until 3:00 p.m. five days a week. Ex. 29.

On October 24, 1997 the IEP was revised to include three fifteen minute sessions each day of speech therapy. Exs. 35-38.

Ms. Wiessen, the speech therapist provided by HCDE for the 1997-98 school year, kept poor records and lost many of the records she did make in a move. Tr. 1506-07.

In August, 1997, Zachary was placed in a Comprehensive Development Class (CDC) at OES. Tr. 1292-93.

In August of 1997 the Deals learned about and began exploring Lovaas style ABA as an appropriate methodology for addressing Zachary’s special needs. Tr. 3453.

Dr. Speraw wrote a letter on October 13, 1997, recommending that Zachary receive intensive one-on-one Applied Behavior Analysis (ABA) training. Ex. 34.

Lisa Steele was Zachary’s teacher in the CDC class at OES for the 1997-98 school year and Zachary’s parents had great confidence in Ms. Steele.. Tr. 1293, 3447.

The IEP Team felt that Zachary would receive additional support in a CDC class. Ex. 29.

The CDC class contained only special needs children and did not include any typically developing children/peers. Tr. 1292-93.

The CDC class included children who were developmentally delayed, mentally retarded, language impaired, health impaired, and autistic. Ex. 483; Tr. 3629.

Zachary was the least verbal child in the CDC class at OES. Tr. 1323.

Lisa Steele communicated with Zachary’s parents through daily notes. Ex. 448.

Zachary routinely joined in the activities with the other children in the CDC class. Tr. 1428-35.

Zachary attended the CDC class five days a week until March when an M-Team reduced his program to three days a week and his parents expanded his Lovaas style ABA program at home. Tr. 1337-38, 1438-41; Ex. 42.

Zachary Deal had no significant interaction with typically developing peers while he was assigned to the CDC class at OES. Tr. 1311.

A significant percentage of the children in the CDC class modeled inappropriate behaviors. Tr. 1548-50.

On March 18, 1998, an M-Team recommended reducing Zachary’s hours of attendance at OES to Monday and Wednesday for half of a day and on Friday so
that Zachary could devote time to his home Lovaas style ABA program. Tr. 1337-
3 8; Ex. 42.

The Deals had Dr. Speraw conduct a second psychological evaluation of Zachary in April, 1998. Ex. 130.

On April 28, 1998, an M-Team reviewed Zachary’s program and began preparing the IEP for the 1998-99 school year. Tr. 1403; Exs. 48, 50.

On May 11, 1998, an M-Team meeting was convened which considered Extended School Year Services for Zachary. Tr. 1403-04; Ex. 56.

Parent and HCDE fact and expert witnesses agreed that Zachary is likely to regress over the summer months if he does not continue to receive special education services. Tr. 516-17; Tr. 1001; Tr. 5758-59; Tr. 2823; Tr. 6808. The court finds that Zachary is likely to regress during the summer months unless he receives special education services.

At the May 11, 1998 meeting Zachary’s parents presented the results of their home based ABA program to HCDE personnel and asked that HCDE fund the program. Tr. 1457; Ex. 56.

At the May 11, 1998 IEP meeting, Sandra Jerardi told the Deals that there were certain things she would like to give (Zachary) but that she could not because she could not give the same service to everybody. Tr. 2951.

The Deals agreed with the ESY program for the summer of 1998. Ex. 66.

In May of 1998, Zachary’s parents requested data on the efficacy of the HCDE program for autistic children but were never provided with any such data. Tr. 3803.

The summer program for Zachary for the summer of 1998 did not include Lovaas style ABA services. Ex. 66.

Prior to the Deal’s request that HCDE pay for Zachary’s ABA program, HCDE personnel were complimentary of Zachary’s progress with ABA. Tr. 3681.

61. No HCDE personnel ever discussed with Lisa Steele, Zachary being assigned to a regular education classroom. Tr. 1485.

62. Summer services were appropriate for Zachary for the summer of 1998. Tr. 1344-45.

63. The HCDE has consistently rejected providing Lovaas style ABA services to Zachary or any other student in their system. The school system primarily hinges its steadfast refusal to even consider this methodology on its belief that Lovaas style ABA has not been scientifically proven to be effective. Tr. 1271;

64. Lovaas style ABA is an organized systematic approach to teaching based on operant conditioning and requires the systematic collection of data on the child’s acquisition of discreet skills. Speraw at Tr. 235.

65. Lovaas style ABA seeks to understand behavior, predict behavior and the direction it will change, and control the change in behavior. Tr. 436.

66. Lovaas style ABA teaches autistic children how to organize information in their environment. Speraw at 236.

67. Dr. Ivar Lovaas of UCLA conducted an intervention in the 1980’s that included intensive, one-on-one discreet trials in an ABA format for an experimental group of preschool children diagnosed with autism and compared the results to a control group which did not receive the intensive ABA intervention. Ex. 63.

68. Virtually all children made significant progressed within Lovaas’ experimental group and recorded IQ gains. The 47 percent termed “best outcome” achieved dramatic IQ gains and were later described in a follow-up report done in 1993 as “indistinguishable” in the regular education setting. Ex. 63.

69. The Lovaas style ABA methodology relies on intensive one-on-one early intervention, and the earlier the better. Tr. 410.

70. Children with testable IQs below 35 and children with multiple handicapping conditions are much less likely to achieve positive outcomes from a Lovaas style ABA intervention. Tr. 532.

71. The Surgeon General of the United States has endorsed the Lovaas style ABA methodology as a promising intervention for autistic children. Ex. 473.

72. There are no similar studies or even outcome reports for any other methodology including the “eclectic” model employed by HCDE. Tr. 456.

73. There are no studies that indicate that school systems can blend various methodologies or approaches to teaching autistic children and achieve the same kind of results reported by Dr. Lovaas in his 1987 publication. Speraw at Tr. 114-15.

74. Dr. Speraw had seen significant progress in children with autism who had received an intensive ABA intervention. Tr. 120.

75. The evidence shows that Lovaas style interventions of ten hours per week or less have no effect. Tr. 520;

76. Following the 1987 publication of the Lovaas program and results, the same type of progress was observed for children in Northern California who had received Lovaas style ABA versus little or no progress in children who had received more standard interventions. Tr. 473.

77. Similar results were also reported by Dr. Sven Eikeseth. Ex. 317.

78. The federal government has funded replication sites to test the validity of Lovaas reported results. Tr. 460-61; Tr. 643-44; Ex. 316.

79. The results from one such site, the Wisconsin Young Autism Project, appear to replicate the original Lovaas findings. Ex. 316, Tr. 642.

80. There is no study in the field of autism more reliable than the Lovaas study and its progeny. Tr. 5121.

81. Dr. Lovaas’ study is the most rigorous study in the field of autism interventions to date. See, e.g., testimony of Dr. Ilene Schwartz, a HCDE expert witness on methodologies for treating autism at Tr. 6693-94.

82. The data to date indicate that a Lovaas program of between 20-40 hours per week is required to produce meaningful IQ boosts for autistic children. Tr. 471.

83. In May of 1999, the New York State Early Intervention Committee, after reviewing biological treatments and available educational methodologies for addressing the needs of autistic children, recommended Lovaas style ABA for young children diagnosed with autism. Tr. 644-47; Tr. 884-85; Ex. 324.

84. Lovaas style ABA is among the best practices available to teach children with autism. Tr. 6713, testimony of HCDE expert, Dr. Ilene Schwartz.

85. HCDE rejects the validity of the Lovaas study and its results and embraces the position of the professionals in the field who have published articles critical of the Lovaas style ABA approach to treating children with autism. See, e.g., Exs. 433, 435, 438, 439.

86. Autistic children who are placed in special education classrooms as opposed to being placed in classrooms with typically developing peers can learn unwanted behaviors from the other and sometimes more challenged special education students. Tr. 750.

87. The Deals decided to fund a Lovaas style ABA home based program provided by the Center for Autistic and related disorders (CARD).

88. A system for teaching autistic children called TEACCH is a major methodology employed by school systems. Tr. 437.

89. TEACCH was developed at the University of North Carolina and is currently a statewide program within North Carolina. Tr. 437.

90. TEACCH is a cradle to grave support system based on the assumption that the core clinical problems in autism are lifelong. Tr. 439.

91. TEACCH or major components of TEACCH are much more prevalent in HCDE and institutions with which it contracts (e.g., Signal Center, Siskin Center, TEAM Evaluation Center) than Lovaas Style ABA. Tr. 3434; 4957-58.

92. The HCDE does not have a methodology as such and instead relies on assembling components of other strategies/methodologies for educating autistic children.

93. TEACCH is a humane and effective methodology for addressing the needs of older autistic children and younger autistic children who have not shown or who are incapable of making the progress and IQ gains demonstrated by Lovaas style ABA. Tr. 649.

94. TEACCH is a less expensive methodology for a school system to implement than Lovaas style ABA. Tr. 4976.

95. TEACCH does not address some of the primary deficits of children with autism. Schwartz at Tr. 6707.

96. Dr. Mulick, who has seen and evaluated almost 2,000 children with autism, has only seen children who received intensive Lovaas style ABA become “indistinguishable” in the regular education setting. Tr. 657.

97. Dr. Speraw tested Zachary again on April 27, 1998 after he had received services from HCDE at OES and intensive ABA therapy provided by his parents. Tr. 122-23.

98. Although he became frustrated at times with the test, Zachary’s IQ now tested at 93 which is in the average range. Tr. 126-27.

99. The HCDE held an IEP meeting on October 9, 1998 to continue developing an IEP for Zachary for the 1998-99 school year. Tr. 3656; Ex. 102.

100. The October 9, 1998 IEP meeting focused on creating an IEP for the 1998-99 school year. Zachary’s parents suggested approximately 600 goals for Zachary and HCDE suggested 78 goals. Tr. 5150.

101. Another IEP meeting was held on October 15, 1998 to finalize an IEP for the 1998-99 school year. Exs. 99, 102, 105, 106.

102. The Deals did not agree with the IEP approved by the IEP team for the 1998-99 school year and filed a minority report. Ex. 113.

103. There was eventual agreement between the HCDE and the Deals on the goals and objectives for 1998-99 but disagreement on Zachary’s need for intensive one-on-one ABA instruction. Tr. 4617; Ex. 113.

104. No regular education teacher attended the February 19, 1999 IEP meeting. Ex. 172.

105. Jane Dixon told the Deals that they could not ask questions during the March 3, 1999 IEP meeting. Tr. 3766-68.

106. An M-Team considered the Deals’ request for summer services for Zachary for the summer of 1999 and denied any services. Ex. 211.

107. Zachary’s parents also requested home based Lovaas style ABA for Zachary’s summer program for the summer of 1999. Tr. 146 1-62.

108. The HCDE suggested 78 goals for Zachary’s 1998-99 IEP. Tr. 5150.

109. Of the 600 goals suggested by Zachary’s parents for the 1998-99 school year, 137 were incorporated into the IEP and Zachary accomplished 99 of them. Tr. 5150.

110. Zachary also accomplished 130 of the goals HCDE refused to put into his 1998-99 IEP. Tr. 5150.

111. Ms. Dixon investigated Zachary’s parents’ dispute with the IEP and interviewed various teachers and providers without interviewing any of the ABA providers even though Lovaas style ABA formed the bulk of Zachary’s educational program at that time. Tr. 2414-17.

112. HCDE denied the Deal’s request for Lovaas style ABA for Zachary in part because HCDE believes it is more expensive than HCDE’s current approach. Tr. 2435-3 7.

113. Dr. Speraw again tested Zachary on June 2, 1999. Zachary had been receiving 28 hours of intensive one-on-one Lovaas style ABA intervention, two hours a week of speech therapy provided by his parents, and occupational therapy and other services at OES. Tr. 130-132.

114. Dr. Speraw observed a “joy of living” in Zachary in June of 1999 that had not been seen before. Tr. 313.

115. In June, 1999, Zachary was ready to go into a classroom with typically developing peers. Tr. 313.

116. On the June 2, 1999 evaluation Zachary’s IQ was recorded at 105, 12 points higher that the previous year. Tr. 134.

117. Dr. Speraw also noted “tremendous progress” in Zachary’s interpersonal skills and ability to reason. Tr. 138.

118. Dr. Speraw observed Zachary on March 9, 2000 at the Primrose School and found him to have made significant progress since her evaluation the previous June and saw him interacting appropriately with the non-disabled children in his 4K class environment. Tr. 176-180.

119. Dr. Speraw has observed at least 50 children who have received a variety of therapies/interventions, including children receiving only HCDE interventions, and has found the ABA approach to be the most effective. Tr. 314.

120. Lovaas style ABA may be cost effective over time by allowing a higher percentage of autistic children to become normal functioning productive adults. E. 311.

121. In addition to the challenge of autism, Zachary suffers from a physical condition known as verbal dyspraxia (sometimes called apraxia) which makes it difficult for him to vocalize. Tr. 98384.

122. CARD employs various sub-strategies for addressing autistic behavior, including discreet trials, prompting, shaping behaviors and responses, reinforcement, differential reinforcement, sequencing of events, and chaining. Tr. 771, 783.

123. CARD encourages socialization by focusing on increasing imitative skills, increasing the ability to follow instructions, and increasing play skills. Tr. 781.

124. The CARD ABA program is a complex, orderly, structured program and Zachary responds well to it. Tr. 3 164-73.

125. When the Deals were organizing and funding Zachary’s Lovaas style ABA program during the 1997-98 regular school year, HCDE personnel had only positive things to say about the intensive ABA methodology. E.51, pp. 43, 45, 52, 53; E.58, p.61.

126. Prior to the Deals requesting funding for Zachary’s ABA program from the HCDE, Ms. Sandra Jerardi authored an internal memo in which she described Zachary’s program under IDEA as a “sensitive case with regards to school program and/or Lovaas.”

127. Based on other testimony in the record supporting the proposition that the HCDE rejects meaningful consideration of the Lovaas style ABA intervention at least in large part because of its perceived cost, the court finds that Ms. Jerardi was flagging Zachary Deal’s education program as sensitive because of its probable cost and adverse impact on the HCDE policy of rejecting any and all requests for Lovaas style ABA for young autistic children.

128. At the May 11, 1998 IEP meeting, the Deals outlined the impressive results Zachary had achieved with the Lovaas style ABA methodology and asked the HCDE to fund a continuation of the program over the summer. E.57; E.58, pp. 15, 29.

129. HCDE personnel informed the Deals that “the powers that be” were not implementing ABA programs. E. 58, p. 36.

130. Ms. Jerardi, an HCDE representative and IEP team member in the May 11, 1998 IEP team meeting told the Deals that she wished people would pay their taxes so that HCDE could provide ABA for Zachary. E. 58, p. 79.

131. Jane Dixon told the Deals that the cost of the ABA program is important and that cost was a factor in denying it. E. 150 at p. 21.

132. There was no regular education teacher of Zachary’s at the October 15, 1998 IEP team meeting even though it was clear that whether or not it would be appropriate for Zachary to participate in the regular education setting would be a subject of the meeting.

133. Zachary Deal progressed in his ability to function and socialize with other children while at the Primrose School. Tr. 902-925.

134. Zachary Deal was academically one of the better students in Ms. Reyes
preschool class at Primrose School Tr. 908.

135. Anna Davenport, a licensed speech and language pathologist, provides speech therapy to autistic students whose deficits are being addressed by either Lovaas style ABA or TEACCH methodologies. Tr. 1027.

136. Anna Davenport finds that the autistic children who have been receiving Lovaas style ABA intervention have better attention and compliance skills and that they learn better and faster than those receiving the TEACCH program. Tr. 1028.

137. Anna Davenport also has provided speech and language services to autistic children being served with the HCDE program and has found them to have slower progress than those receiving the Lovaas style ABA methodology. Tr. 1030.

138. The regular education teacher who attended the August 25, 1999, meeting left before the 1999-2000 goals and objectives were developed and before the issue of placement was decided. Exs. 253, 256, 259, 260, 265.

139. Zachary responds well to computerized speech augmentation devices. Tr. 1091.

140. Zachary also learns to communicate from other children who are in his environment. Tr. 1129-30.

141. A CARD trained tutor/aide, April Brewer, accompanied Zachary while he was at Primrose School. Tr. 1139-44.

142. The aide/tutor who accompanied him at Primrose School also provided Zachary with some of his home based Lovaas style ABA. Tr. 1144.

143. Tamilla Burt, one of Zachary’s ABA tutors, had previously worked at a facility serving autistic children in Missouri. While at that facility, she noted that the children receiving Lovaas style ABA services were able to grasp material much more quickly that those who were not receiving those services Tr. 3383-84

144 Over the course of Zachary’s program with home based ABA and attending school with typically developing peers at Primrose School, Zachary became less prompt dependent. Tr. 1148.

145. Zachary also fit in well socially with his peers at Primrose School, tried to imitate their behaviors, and, as of April, 2000, some of the children at Primrose School worked to get Zachary to speak. Tr. 1152, 1158-60.

146. As of April, 2000 Ms. Brewer found that Zachary was “learning to learn” at a faster rate. Tr. 1257.

147. Zachary acquired new skills in proportion to the number of Lovaas style ABA hours he received. Tr. 3079.

148. Numerous HCDE witnesses accepted the accuracy of the data maintained by the parents and acknowledged that the Deals never refused a request by HCDE for information about Zachary or his program. See, e.g., e. 108, p. 41 and E-103, p.26. The Court finds these data to be accurate.

149. HCDE personnel believe that, if the purported results of the initial Lovaas study could be proven and replicated, that Lovaas style ABA would be the appropriate methodology for preschool autistic children. See e.g., Dixon at Tr. 2379, 2385.

150. Ms. Jane Dixon, a supervisor of special education for HCDE, has, as part of her job, a duty to identify better methodologies for teaching autistic children. Tr. 2524.

151. Ms. Dixon acknowledged that the initial results of the Wisconsin Early Autism Project were surprisingly good. Tr. 252 1-23.

152. Despite the excellent reported results from the Wisconsin Project, Ms. Dixon has made no effort whatsoever to contact personnel administering that program. Tr. 2525.

153. If an autistic child has a chance of becoming indistinguishable, it would be inappropriate to set a lesser goal for that child. Dixon at Tr. 2555.

154. As of June, 2000, Sandra Jerardi was making educational decisions and recommendations for autistic children even though she had not read the report of the Wisconsin Early Autism Project which had been made public in 1999 and had been a subject of this hearing for many months. Tr. 2602.

155. Twenty years ago there was no strategy available which educators thought would allow autistic children to function in the normal range or become indistinguishable from typically developed peers. Dixon at Tr. 2713

156. Jane Dixon believes that the parents’ proposed goal to make Zachary independent in society with as normal a life as possible is unrealistic. Tr. 2716.

157. HCDE has a policy of not considering Lovaas style ABA for autistic children. Tr. 2941 and Tr. 2958-59 wherein Sandra Jerardi admits to being impressed by Zachary’s present levels of performance yet steadfastly refuses to give any credit to Zachary’s intensive Lovaas style ABA program for these achievements. See, also, Tr. 2966, wherein Ms. Jerardi refuses to concede that any progress is attributable to the ABA program even when the progress was obtained over the course of a summer in which the school system provided no services.

158. In October, 1998, HCDE denied the parents’ request for an assistive technology evaluation aimed at determining whether or not Zachary would benefit from an augmentative speech device. Tr. 2980-81.

159. At the May 24, 1999 IEP meeting, Ms. Wiessen, a HCDE speech and language pathologist, acknowledged that Zachary had emerging skills in speech and language. Tr. 3819. Nonetheless, Ms. Wiessen agreed with the decision to deny Zachary speech therapy during the summer of 1999. Id.

160. There was no regular education teacher in attendance at the August 20, 1999 IEP Team meeting. Tr. 3821.

161. In March of 2000, Zachary was doing very well with the ABA and classroom exposure he was receiving at that time. Tr. 889.

162. In March of 2000, Zachary had begun to make sounds on a regular basis and attempt to verbalize. Tr. 958.

163. In June of 2000, Zachary’s IQ had increased by 26 points over his previous test score. E. 487.

164. The rate at which Zachary has been able to acquire new skills has improved greatly between 1997 and 2000. Tr. 4211-14.

165. The complexity of the skills being acquired has also increased. Tr. 4225.

166. In August of 2000, an IEP was developed providing services for Zachary at Westview Elementary School. Exs. 501 505.

167. On May 17, 2000 an assessment team convened by HCDE recommended certain assessments/evaluations for Zachary Deal. Exs. 494, 510.

168. On August 11,2000 an IEP team developed an extensive IEP for Zachary which called for him, among other things, to attend school at Westview Elementary School and to be assigned to a regular education class. Exs. 501 and 502.

169. While the Deals agreed with the placement at Westview, they continued to maintain that in order for Zachary to receive a FAPE, the school system would have to offer Zachary a Lovaas style ABA program. Ex. 504.

170. Zachary attended Westview Elementary School in the morning on a part-time basis during the 2000-0 1 school year and participated in a home based Lovaas style ABA program and parent provided speech therapy in the afternoons.

171. Between when Zachary first began ABA in 1997 and the end of 2000, Zachary averaged 24-26 hours per week of Lovaas style ABA interventions.

172. Zachary seems to do best at around 30 hours of ABA per week. Tr. 4227.

173. Zachary’s greatest gains occurred during periods when he received no services from HCDE. Tr. 3877; Ex. 487. In fact it occurred over a summer when he attended neither the private Primrose School nor a HCDE facility. Tr. 4636.

174. HCDE refused the Deal’s offer to help train HCDE personnel on Zachary’s ABA program and protocols. Tr. 4193.

175. As a result of HCDE’s refusal to cooperate with the Deal’s in learning how to interact with Zachary, the aid assigned to Zachary’s class was less prepared than he could have been. Tr. 420 1-03.

176. As of September 7, 2000, Zachary had become much more vocal and often was attempting to speak. Tr. 3794.

177. The CARD program, while based on Lovaas style ABA, is not supervised by Dr. Lovaas nor is it a Lovaas replication site.

178. Judy Bailey, the Associate Director of Professional Support Services with the TEAM Evaluation Center, believes it would be extraordinary if the Lovaas results are found to apply to a randomly selected population of autistic preschool children. Tr. 4964.

179. Sandra Jerardi reported that five of the thirty five autistic children with whom she had used the HCDE program became what she termed “indistinguishable, Tr. 5253-55.

180. Irise Chapman, Director of Exceptional Education for HCDE, testified that, if the results reported by Lovaas are valid, a FAPE for autistic children should include such a component. Tr. 6454-55.

181. Given the state of knowledge today about autism and its treatment, a well constituted IEP team must have someone on it who is knowledgeable about Lovaas style ABA and who has an open mind about whether or not to recommend ABA for autistic preschool children. Schwartz at Tr. 6902.

182. Dr. Ilene Schwartz, the HCDE expert on interventions for autistic children, testified and the court finds that, given the state of the evidence today, an intensive ABA program should be a component of Zachary’s educational program. Tr. 6902-04.

183. Zachary enjoys and benefits educationally from his placement in the regular education classroom at Westview Elementary. Observation of the court.

184. Zachary benefits from the related service of speech therapy as provided by the HCDE at Westview Elementary. Observation of the court.

185. Zachary interacts well with his classmates at Westview at recess and in the classroom. Observation of the court.

186. Zachary benefits from his privately funded speech therapy with Anna Davenport. Observation of the court.

187. Zachary is more engaged in learning during his Lovaas style ABA drills than in any other activity observed by the court. Observation of the court.

188. Zachary was more motivated to speak and demonstrated more ability to speak during his Lovaas style ABA session than he did in either of the two formal speech therapy sessions. Personal observation of the court.

189. Zachary’s preferred learning style is one-on-one Lovaas style ABA. Personal observation of the court supported by several witnesses during the trial.

190. Intensive one-on-one ABA “needs to be a component of a program [for autistic children].” Schwartz at Tr. 6908.

191. Dr. Ilene Schwartz, the HCDE expert on interventions for autistic children, believes that eighteen hours a week of intensive discreet trial ABA interventions should be a minimum level for a program for an autistic child similar to Zachary Deal. Tr. At 6923-24.


III. CONCLUSIONS OF LAW

Congress intended for the Individuals with Disabilities Education Act (“IDEA”) (20 U.S.C.A. 1400 et seq.) to guaranty children with disabilities a free appropriate public education (“FAPE”). Renner v. Board of Educ., 185 F.3d 635, 644 (6th Cir. 1999). In determining whether or not a public school system has offered a disabled child FAPE, a court must first determine whether the school system has
complied with the procedures mandated by the IDEA. See, Board of Educ. V Rowley, 458 U.S. 176,206, 102 S.Ct. 3034, 73 L.Ed.3d 690 (1982). In return for accepting federal monies, the IDEA requires states to identify, locate, and evaluate all disabled children residing in the state who are in need of special education and related services. 20 U.S.C.A. § 1412(2)(C).

School districts receiving federal funding under IDEA must establish an individualized educational plan (“IEP”) for each child with a disability. 20 U.S.C.A. § 1414(a)(5). Congress further defined an IEP as a written statement developed by a professional qualified to deliver the specially designed instruction, the child’s teacher, and the parents of the child. See, 20 U.S.C.A. 1401 § 1401 (a)(20).

Placement decisions must be based on the IEP which must contain a statement of measurable annual goals, including benchmarks or short term objectives. 20 U.S.C.A. § 1400. A legally sufficient IEP must also describe the educational and other services to be provided, and criteria for evaluating the child’s progress. Id.; see also, Knable ex rel. Knable v. Bexley City School Dist., 238 F.3d 755, 763 (6th Cir. 2001).

The Rowley Court stressed that Congress had emphasized that full participation by concerned parties in the IEP process would, in most cases, ensure that much if’ not all of what Congress wanted in the way of substantive content would make its way into an IEP. Rowley, 458 U.S. at 206. Congress did not, however, define “appropriate education” and instead, left it to the courts and the hearing officers to give content to the requirements of an appropriate education. Id. at 458 U.S. 187. The Rowley Court acknowledged the difficulty (if not impossibility) of defining an “appropriate” education for all learning disabled children. For all such children it set a standard requiring all IEPs to provide at least “educational benefit.” Rowley at 458 U.S. 20 1-202.

It did, however, define what constituted a FAPE for children capable of functioning academically within the regular education classroom and able to perform on grade level:

[T]he IEP and, therefore the personalized instruction, should be formulated

in accordance with the requirements of the Act and, if the child is being

educated in the regular classrooms of the public education system, should be

reasonably calculated to enable the child to achieve passing marks and

advance from grade to grade.

Rowley at 458 U.S. 203-204.

The implementing regulations for IDEA lend further support to the proposition that minimal educational benefit for a child who is capable of much more does not meet IDEA’s requirement of a FAPE:

Specially designed instruction means adapting, as appropriate to the needs of an eligible child... the content, methodology, or delivery of instruction- -

(i) To address the unique needs of the child that result from the child’s disability;

To ensure access of the child to the general curriculum, so that he or she can meet the educational standards within the jurisdiction of the public agency that apply to all children.... 34 C.F.R. Sec. 300.26(b)(3).

Although technical violations will not automatically invalidate an IEP, this circuit requires administrative law judges and hearing officers to strictly review an IEP for procedural compliance. Dong v. Board of Educ., 197 F.3rd 793, 800 (6th Cir. 1999); see also, Doe v. Defendant I, 898 F.2d 1186, 1190-91 (6th Cir. 1990) and Burilovich v. Board of Educ. Of Lincoln, 208 F.3d 560, 567 (6th Cir. 2000). Having assured itself that the process met the requirements of IDEA, a reviewing court or hearing officer must then determine whether the IEP developed by the school system in accordance with the mandated procedures is reasonably calculated to enable the child to receive educational benefits. Id. At 206-207. There is no violation of IDEA if the school system has satisfied both requirements. Rowley 458 U.S. at 206-207.

Courts are not permitted to substitute their own notions of sound educational policy for those of the school officials. Thomas v. Cincinnati Bd. Of Educ., 918 F.2d 618, 624 (6th Cir. 1990). Instead, courts are to give deference to state and local agencies in choosing the educational methodology most suitable to the child’s needs. Rowley at 458 U.S. 207. Courts should only intervene where a preponderance of the evidence weighs against the local education agencys’decision. Id. at 206.

Finally, the instant case involves, in part, the parents’ request for reimbursement for private placement, and for provision of related services at their own expense. In order for parents to unilaterally alter their child’s placement or program and then be entitled to relief under the IDEA, they must establish that the public placement or services offered by the school district violated IDEA and that the
private placement or service was proper under the act. Florence Co. School Dist. Four v. Carter, 510 U.S. 7, 114 S.Ct. 361, 366, 126 F.Ed.2d 284 (1993); Wise v. Ohio Dept. Of Educ., 80 F.3rd 177, 184 (6th Cir. 1996).

The court will first address the procedural violations alleged by the Deals and then take up the substantive allegations.

A. PROCEDURAL VIOLATIONS

Under the first prong of Rowley, the Court must first determine whether the HCDE complied with the procedural requirements of the IDEA. The procedural requirements are particularly important because the development and implementation of the IEP are the cornerstones of the IDEA. Honig v. Doe, 484 U.S. 305, 311, 108 S.Ct. 592, 597-97, 98 F.Ed.2d 686 (1988). The strict procedural requirements help assure the quality of the resulting IEP.

Under the Act, the IEP must contain a specific statement of the child’s current performance levels, the child’s short-term and long-term goals, the educational and other services to be provided, and criteria for evaluating the child’s progress. 20 U.S.C. § 140 1(a)(20). These are requirements by which the adequacy of the IEP is to be judged. Cleveland Heights- University Heights City School District v. Boss, 144 F.3d 391 (6th Cir. 1998). Minor technical violations which do not affect the adequacy of the IEP may be excused. Id.

If the HCDE violated the IDEA’s procedural requirements and if those procedural violations caused substantive harm to Zachary Deal, there has been a denial of a FAPE. See, Metro. Bd. Of Pub. Educ. V Guest, 193 F.3d 457,464-65 (6th Cir. 1999); Daugherty v. Hamilton County Schools, 21 F.Supp.2d 765, 772 (E.D.Tenn. 1998). Assuming the court finds a denial of a FAPE, the court may grant such relief as the court determines is appropriate. 20 U.S.C.A. § 1415(e)(2).

The record in this case establishes significant procedural violations of the IEP process as required by the IDEA. Even if the Court were to view the testimony and the evidence in the light most favorable to HCDE, the record clearly establishes that HCDE, in large part because of cost considerations, embraced an unofficial policy of refusing to consider Lovaas style ABA for children who
presented with autism as their disabling condition.

The HCDE M-Team personnel consistently went into IEP meetings, where they were legally bound to assess Zachary’s disabilities and individual needs before selecting a methodology, with a predetermination to deny Zachary’s request for a Lovaas style ABA program. In so doing, the HCDE personnel on the M-Team had “pre-selected” the extant HCDE program regardless of Zachary’s demonstrated individual needs. This bias on the part of the HCDE stemmed in large part from concerns about the perceived cost of Lovaas style ABA.

The result was a kind of “virtual” IEP team meeting where the two parties talked past one another rather than cooperating to Zachary’s benefit. The court notes that Mr. and Mrs. Deal did request data from HCDE on the HCDE methodology at the meeting where they were first denied the ABA services for Zachary. The court finds that even had the HCDE produced the data on its success rate with autistic children it would have not changed the outcome. The data produced for the hearing indicate that approximately 14% of autistic children receiving only the HCDE program went on to become “indistinguishable” from the children in regular education classrooms. This does not compare favorably to the 47% rate reported by Dr. Lovaas and apparently being achieved at the replication sites.

The failure of the HCDE to have regular education teachers attend the IEP team meetings is also a troubling procedural violation. The absence of a regular education teacher provides strong evidence that the decision to place Zachary in a special education classroom for the 1999-2000 school year had been made before the IEP team convened.

Zachary’s parents had every right to expect and were entitled to a full and fair assessment of Zachary’s needs and then an unbiased decision making process within the IEP format to address Zachary’s individual needs. This did not happen in this case and the procedural violations themselves amount to a denial of FAPE.

II. SUBSTANTIVE VIOLATIONS

Science and innovation have warred with orthodoxy at least since Galileo was forced to recant in the shadow of the rack. In defending its less expensive and more orthodox choice of services for Zachary, the HCDE cites to the oft quoted Doe v. Bd of Educ. of Tullahoma City Schools where the Sixth Circuit held that schools have complied with the IDEA’s requirements if they offer the educational equivalent of a serviceable Chevrolet to a handicapped student rather than a Cadillac.3 9 F.3d 455, 459 (6th Cir. 1993). The IDEA may not mandate a Cadillac for Zachary Deal. It does, however, require the HCDE to make sure whichever vehicle they propose, is fully gassed and capable of arriving at an appropriate destination.

The appropriateness of the destination for a particular disabled child is dependent to a large extent on the child’s abilities and potential. In reversing a District Court finding that a school system had provided FAPE by providing more than a “trivial” benefit, the Third Circuit noted:

The [special] education must be tailored to the unique needs of the disabled student through an [IEP]. IDEA leaves to the courts the task of interpreting “free appropriate education.” The Supreme Court began this task in Board of Education v. Rowley, holding that while an IEP need not maximize the potential of a disabled student, it must provide “meaningful” access to education and confer “some educational benefit” upon the child for whom it is designed.... In determining quantum of educational benefit necessary to satisfy IDEA, the [Supreme] Court explicitly rejected a bright line rule. Noting that children of different abilities are capable of greatly different achievements, the Court instead adopted an approach that requires a court to consider the potential of the particular disabled student. [The Third Circuit has] rejected the notion that the provision of any educational benefit satisfies IDEA, holding that IDEA “clearly imposed a higher standard.” IDEA calls for more than a trivial educational benefit and requires a satisfactory IEP to provide significant learning and confer “meaningful benefit.” We also reject the notion that what was “appropriate” could be reduced to a single standard, holding that benefit “must be gauged in relation to the child’s potential.” When students display considerable intellectual potential IDEA requires “a great deal more than negligible [benefit].

Ridgewood Board of Educ. v. NE., 172 F.3D 238 (3’~ Cir. 1999) (other citations omitted).

A. The school system did not offer a “methodology.” The HCDE did not offer to provide Zachary Deal with a proven or even describable methodology for educating autistic children because they had no such methodology to offer. In pre-hearing discovery and in the first days of the hearing, the HCDE termed their methodology the “eclectic” methodology or approach. During the course of the
hearing, however, the HCDE witnesses distanced themselves from this label when it became clear that it was indefinable and virtually meaningless as a descriptor for an organized methodology.

The evidence showed that the HCDE actually cobbled together various components from other methodologies, primarily TEACCH4. They did so intuitively based on the experience and preferences of individual IEP team members. When forced to produce historical data to demonstrate the efficacy of these past choices, the HCDE could only claim a best outcome success rate one third that of the reported best outcome children in the Lovaas study group.

If their intuition and experience were telling them that their choices for autistic children were as good as or better than the Lovaas style ABA, they were misleading themselves.

Surprisingly, neither these data comparisons, the reported favorable results from the Lovaas replication sites, nor Dr. Schwartz’s testimony that all educational methodologies for autistic children should include one-on-one discreet trial training, moved the HCDE in its opposition to intensive one-on-one discreet trial training. This steadfast resistance to one-one-one ABA in the face of the mounting favorable evidence for Lovaas style ABA provided further evidence that the HCDE’s insistence on rejecting Lovaas style ABA for Zachary is based primarily on its perceived cost.

The record, as developed by both the parents’ and the school system’s witnesses, showed the most widespread methodology, TEACCH, is gradually losing ground in the special education community more effective methodologies, such as Dr. Schwartz’s program, which employ one-on-one ABA as a chief component. There was no evidence whatsoever produced to indicate that intensive one-on-one discreet trial training was somehow less effective than more orthodox methodologies. The HCDE also failed to produce convincing evidence that their methodology for young children with autism was equal to or better than a program based primarily on an intensive ABA intervention. The preponderance of the evidence weighed heavily in favor of Lovaas style ABA as the appropriate methodology for educating Zachary Deal.

B. The home based Lovaas style ABA program is a recognized methodology. The Deals learned of the Lovaas style ABA program on their own. The court finds this significant because, given its demonstrated effectiveness and the widespread knowledge within the HCDE of its spreading use with autistic children, it is difficult to explain how a school system, which claims to have been open to any methodology which would address Zachary’s unique needs, would dismiss this approach outright without even discussing its perceived advantages and disadvantages with the Deals. Given the state of knowledge about methodologies appropriate for educating autistic children, the HCDE school system representatives should have at least informed the parents about the Lovaas style of ABA and explained why they would recommend against it.

Having learned of the Lovaas style ABA methodology on their own and having funded the initial months of Zachary’s program, the Deals were convinced by Zachary’s progress that this was the appropriate methodology for Zachary. When the Deals met with HCDE to develop Zachary’s 1999-2000 IEP, the school system was confronted with the parents’ reports of Zachary’s remarkable
progress utilizing the Lovaas style ABA with Zachary as well as Dr. Speraw’ s letter of October, 1997 recommending an ABA approachfor him. It was during this meeting that the HCDE’s representative told the Deals that there were things she wished she could recommend for Zachary but then she would have to give them to everybody.

HCDE’s refusal to consider Lovaas style ABA for Zachary for the 1999-2000 school year is even more inexplicable. Zachary’s parents had fought to have 600 goals included in Zachary’s IEP for the previous school year, 1998-99. The HCDE had suggested 78 goals and the parties eventually agreed to include 137 of goals on the 1998-99 IEP. When the parties sat down to develop the IEP for 1999-2000, they knew that the primary teaching methodology for Zachary had been a home based intensive Lovaas style ABA program and that Zachary had accomplished 99 of the 137 goals on his previous IEP and an additional 130 of the goals HCDE had rejected for his 1998-99 program.

The HCDE had its program in mind when it suggested 78 goals for 1998-99. Zachary had actually accomplished 229 of the 600 goals his parents had set for him and had clearly succeeded beyond HCDE’s expectations for him by accessing CARD’s Lovaas style ABA program. There is no case law which stands for the proposition that the term “appropriate” as it pertains to FAPE sanctions a program which would actually retard a special needs child’s education or development.

The court finds that an appropriate educational methodology for Zachary Deal must include an intensive Lovaas style ABA component. The evidence at trial, however, did not demonstrate that a 40 hour per week ABA program is required in order for Zachary to succeed. In fact, the testimony indicated that Zachary does best on a 30 hour per week program.

C. Extended school year services are needed. The amount of regression suffered by a child during the summer months, considered together with the time required to recoup lost skills when school resumes in the fall, is an important consideration in assessing an individual disabled child’s need for a structured educational program in the summer months. Johnson v. Independent’ School Dist. No. 4 of Bixby, 921 F.2d 1022 (10th Cir. 1990). Demonstrated regression, however, is not the only criterion. The school officials must also consider predictive data based on the opinion of professionals in consultation with the child’s parents. Id. at p. 1028.

The IDEA’s implementing regulations specifically state that:

A public agency may not use a parent’s refusal to consent to one service or activity.., to deny the parent or child any other service, benefit, or activity of the public agency....34 C.F.R. Sec. 300.505(3)(e).

The HCDE apparently believed Zachary might suffer regression when they approved extended school year (“ESY”) services for him in 1998. There is no evidence in the record whatsoever to indicate that this threat of regression has abated. Why then has the HCDE steadfastly denied ESY services to Zachary since the summer of 1999?

The HCDE personnel testified that the denial was because there was no program to extend. In denying ESY related speech therapy services for the summer of 1999, Ms. Dixon noted that any lack of progress on Zachary’s part was due to his not having accessed the full HCDE program. His classroom teacher, Ms. Wiessen, tried to justify the denial on the basis that she could not document regression and the fact that he was making progress accessing HCDE services on a part-time basis.

The expert and fact witness testimony in this case was unequivocally consistent: Zachary Deal would have regressed without summer services. The threat of regression did not change between the summer of 1998 and the summer of 1999. What changed was the relationship between the parents and the HCDE once the dispute began over Zachary’s need for Lovaas style ABA, The school system had no quibble with related speech therapy during the summer of 1998 when Zachary’s parents were paying for his ABA program. The problems arose when the Deals asked the HCDE to fund not only related services during the summer of 1999 and 2000, but, when they demanded that the school system also fund a Lovaas style ABA program for him.

Summer services, like services during the regular school year, are intended to address the child’s needs. The concept is even labeled “extended school year” not “extended school program.” A summer IEP, like any other IEP, should address the individual and unique needs of the eligible child. The HCDE is in error when it maintains that the purpose of ESY is to continue an existing IEP and that, if there is no agreed upon IEP, there is nothing to continue. The purpose of ESY, like the rest of the IDEA and its implementing regulations, is to educate disabled children. The need for and design of an ESY program begins
with an assessment of the child’s needs, not the level of cooperation between the school system and the child’s parents.

III. REIMBURSEMENT

The IDEA’s grant of equitable authority empowers an administrative law judge or hearing officer to order school authorities to reimburse parents for their expenditures on private special education for a child if the administrative law judge or hearing officer determines that such placement, rather than a proposed IEP, is proper under the Act. School Comm. of Burlington v. Department of Ed Of Mass., 471 U.S. 359, 369, 102 S.Ct. 1996,2002,85 F.Ed.2d 385 (1985). Congress intended that disabled children’s needs would be met either in public or private institutions through cooperation between the parents and school officials within the IEP process. Florence County School Dist. Four v. Carter, 510 U.S. 7, 12, 114 S.Ct. 361, 364, 126 F.Ed.2d 284 (1993). In cases where cooperation fails, however:


[P]arents who disagree with the proposed IEP are faced with a choice: go along with the IEP to the detriment of their child if it turns out to be inappropriate or pay for what they consider to be the appropriate placement. For parents willing and able to make the latter choice, it would be an empty victory to have a court tell them several years later that they were right but these expenditures could not in a proper case be reimbursed by the school officials. Because such a result would be contrary to IDEA’s guarantee of a “free appropriate public education” we [hold] that Congress meant to include retroactive reimbursement to parents as an available remedy in a proper case.

Florence County School Dist. Four v. Carter, at 510 U.S. 12, quoting, School Comm. of Burlington v. Department of Ed Of Mass., supra.

Parents who make this choice do so, however, at their own financial risk. Id. at 471 U.S. at 374. The Deals took a considerable financial risk when they embarked upon Zachary’s home based ABA program. Early on in their dispute with the HCDE they asked for outcome data to support the program HCDE was offering Zachary. None were produced until this hearing and the ones that were
produced offer little comfort to a parent of a child who falls on the autism spectrum where Zachary falls. Experts on both sides testified that selecting the wrong methodology for an autistic child can mean the difference between an independent adult life and a lifetime of dependency and support.

The Deals made a correct and legally defensible choice when, in the thee of the school systems unbending intransigence, they opted to continue the successful ABA program Zachary had been receiving. The Deal’s are entitled to reimbursement for some, but not all, of their expenses in providing direct and related educational services for their son. The court will address reimbursement issue by issue within this order.

IV. THE SPECIFIC ALLEGED VIOLATIONS

The court has already addressed the major issues in the case and the facts and law surrounding each issue. Some of the many violations alleged by the Deals were either disposed of by interlocutory orders of the court or by agreement of the parties during the hearing. We now turn to the specific alleged violations remaining for adjudication.

COUNT 1. The county failed to timely and properly evaluate Zachary ‘s individual needs requiring the Deals to obtain the evaluations at their own expense.

The record supports a finding that any alleged delays in evaluating Zachary for occupational services were excusable given the information supplied to the school system by the Deals and Zachary’s levels of performance in that area. Exs. 16, 17, 21. In addition, the Deals had already obtained a private occupational therapy evaluation which did not recommend any one on one occupational therapy. Ex. 298. Furthermore, the Deals and the HCDE worked together to accomplish a series of evaluations, some of which were delayed because of difficulty obtaining a neurological evaluation. Finally, there is little evidence of any significant adverse impact on Zachary from these alleged delays. The court therefore DENIES the parents’ request for reimbursement for evaluations.

2. Even though it was Zachary ‘s proven learning style, the county refused to consider any one-on-one ABA therapy. The court has already addressed this issue at length.

Zachary’s parents presented detailed evidence documenting the fact that Zachary had already made remarkable progress in the CARD program when they first asked the HCDE to consider it for

Zachary’s summer 1999 program. The court FINDS that on a procedural basis the HCDE’s refusal to even consider Lovaas style ABA for Zachary during this and subsequent IEP meetings denied Zachary Deal a FAPE. The court also FINDS that even had the HCDE given full and fair consideration to Zachary’s proven learning style, denying Zachary Lovaas style ABA at the point in which it was requested would have been a substantive denial of FAPE. Accordingly, the court FINDS that a free appropriate public education for Zachary Deal should have included at least 30 hours of intensive Lovaas style ABA and must include at least the same level of ABA instruction until such time as there is demonstrable evidence, including present levels of performance and expert opinion by proponents of the Lovaas approach, that the intensity level should be reduced or eliminated. The court ORDERS the HCDE to reimburse Zachary’s parents for the weekly costs of his home based ABA program up to and including thirty hours of service for each week he received such services after May 11, 1998. This requirement remains in effect until such time as the HCDE has convened a properly constituted IEP team, which shall include at least one expert in and advocate for Lovaas style ABA, and produced an IEP for Zachary Deal which shall include at least 30 hours of Lovaas style ABA for Zachary per week to be provided either at home or in a suitable, non-distracting environment in his assigned school.

COUNT 3. The goals and objectives proposed by the county are uniformly vague and are not objectively measurable to be able to ascertain progress. The goals and objectives proposed by the Deals were watered down to fit the county’s administrative needs, i.e. to fit the existing classrooms the county has available rather than to fit Zachary’s individual needs.

The HCDE witnesses testified that they had been criticized by state auditors for putting too many goals on an IEP. There is no legal support for assigning an arbitrary limit to the appropriate number of goals for Zachary. Because the real issue was between the detailed goals and objectives that were part of his ABA program and the more general goals traditionally used by the HCDE, this, issue should resolve itself with the inclusion of Lovaas style ABA in his IEP’s. The county’s resistance to goals based on the number of them is farther evidence, however, of procedural violations in the IEP process.

COUNT 4. The county failed to offer Zachary a full continuum of options and what few prepackaged options have been presented are “offered” by the county on a take it or leave it basis.

This issue is subsumed in and has been addressed in other counts.

COUNT 5. Did the county fail to provide Zachary with meaningful and appropriate opportunities for inclusion to the maximum extent appropriate.

Congress intended that disabled students be educated in the least restrictive environment. The IDEA explicitly requires:

To the maximum extent appropriate, children with disabilities, including children in public and private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

20 U.S.C.A. §1412(a)(5)(A).

The parents agreed to the placement in the 1997-98 school year and in fact wanted Lisa Steele as Zachary’s teacher. The real contention arose for the 1998-99 school year when the parents wanted significantly more inclusion for Zachary with typically developing peers. The HCDE did not discuss options that would have provided more exposure with typically developing peers with the Deals and the record indicates a policy of indifference to this legal requirement. At this point, however, there is no remedy for Zachary having missed opportunities to interact with typically developing peers in the 1998-99 school year.

By the time of the August, 1999, IEP meeting, however, there was no evidence that Zachary could not tolerate and benefit from significant exposure and interaction with typically developing peers. The fifteen minutes three times a week of inclusion offered as a starting point by the HCDE for the 1999-2000 school year appeared to be based on a policy of starting at the low end of the scale and working up. Ex. 265. The stated goal in the IEP discussion of perhaps reaching an hour a day of inclusion by the end of the year further supports evidence of a policy of gradualism.

The law clearly requires the school system to educate Zachary with typically developing peers to the maximum extent possible. The HCDE did not develop his 1999-2000 IEP with this in mind. It offered, basically, a year of education in a CDC classroom where every single child was disabled.

The parents unilaterally removed Zachary from the HCDE system and placed him in a regular education 4-K class at the private Primrose School. The court reviewed video tapes of Zachary at the Primrose School and, notwithstanding the quibbles and hyper-criticism of the tapes by HCDE witnesses, found Zachary to be well integrated into his class and learning to interact with his regular education classmates. His classmates had obviously accepted him and everyone seemed to benefit from having Zachary in the classroom.

The benefits of the Primrose School experience were even more apparent when the court visited Zachary at the HCDE Westview Elementary School at the conclusion of this hearing. His level of participation and involvement had continued to increase to the mutual benefit of all the children in his class.

That said, the parents are not entitled to reimbursement for the costs of the Primrose School. The Deals removed Zachary without giving the HCDE the required statutory notice. 20U.S.C.A. § 1412(a)(10)(C)(ii). There is no way of knowing whether or not the HCDE would have modified the inclusion component of Zachary’s IEP in the face of the Deals’ decision to place him in a private school Having denied the HCDE the opportunity to modify that part of the IEP, the Deals are not now entitled to reimbursement. The claim for
reimbursement for the cost of the Primrose School is DENIED.

COUNT 6. The county failed to even provide services it expressly agreed to provide to Zachary and the county used certain service providers without the appropriate knowledge of expertise in, and experience with Zachary’s educational needs.

The HCDE’s performance in evaluating Zachary for and providing related services in occupational therapy and speech therapy is disappointing. For the 1997-1998 school year some of the HCDE records have apparently been lost in a move. However, the testimony at trial and the records that do exist, indicate that while some speech therapy was provided, it was neither in the amounts required by the IEP nor was it always the one-on-one speech therapy the parents had a right to expect. Exs. 29, 35, 37, 51, Tr. 2217.

The occupational therapy agreed to for the 1998-99 school year was to have been for one hour every other week. Ex. 105. The record shows that Zachary received only five thirty-minute sessions between October 15, 1998 and the end of the school year. Exs. 206, 265.

Speech therapy for 1998-99 was to have been one-on-one twice a week for thirty minutes and group therapy each day. The record at trial showed that these services did not actually begin until over four months into the school year. Exs. 289, 454, 453, 150, 181. The HCDE again agreed to provide occupational therapy, physical therapy, and speech therapy for Zachary for the 1999-2000 school year. Exs. 260, , 265,270. The HCDE then withdrew its agreement to provide the services because the Deals refused to accept the entire IEP the HCDE offered. The court has already held that the IEP produced by HCDE for the 1999-2000 school year was both procedurally and substantively defective and denied Zachary Deal a FAPE. As the IEP denied FAPE, the Deals were under no obligation to accept it in its entirety. The court FINDS that the HCDE mishandled its obligation to provide the related services of physical therapy, occupational therapy, and speech therapy to Zachary Deal. The court ORDERS the HCDE to reimburse Zachary’s parents for any out of pocket costs they have incurred in providing any such related services for Zachary. This includes services currently being provided and extends until such time as a properly constituted IEP team produces an IEP which conforms to this order. The court finds, however, that the HCDE is not responsible for reimbursing the Deals for the costs of the following examinations/evaluations: (1) the neurological evaluation by Dr. Miller, which was in the nature of a medical examination and not part of the IEP process, (2) the speech and hearing evaluation of February 4, 1997 which was done before Zachary’s third birthday. (3) The October 2, 1999, occupational therapy evaluation by Karan Wilson, for which the Deals had never asked for reimbursement. The report by Dr. Mulick dated June 2, 1999 is in the nature of costs for this hearing and should be addressed in that forum.

COUNT 7. Are Zachary’s parents entitled to reimbursement for the cost of Zachary’s tuition and related expenses for attendance at the Primrose School in the 1999-2000 school year and for the costs of related services including ABA therapy from July, 1997 through May 31, 2001?

This issue has already been addressed in findings related to other counts.

COUNT 8. The county failed to provide ESY services for 1999 and 2000.

This issue has already been addressed by the court.

COUNT 9. Does the IEP of August 11, 2000 offer a free appropriate public education to Zachary, subject to the addition of assistive technology goals and objectives, and, if not, is petitioner entitled to reimbursement for the cost of one-on-one applied behavior analysis services and one-on-one occupational therapy services that the parents have purchased and continue to purchase during the 2000-2001 school year?

This count as already been addressed by the court.

COUNT 10. Do petitioner’s parents have the right to select or veto the selection of providers of special education and related services by HCDE as the public agency responsible for implementation of the petitioner’s IEPs?

The Deals have no right to veto competent providers of services called for in a properly constituted IEP.

COUNT 11. To what extent must HCDE allow the participation of petitioner in the public education program offered by HCDE under the circumstances that his parents are unwilling to accept the entire IEP of August 11, 2000?

This count has already been addressed by the court.

The court FINDS that ZACHARY DEAL is the prevailing party.

This decision is binding on both parties unless the decision is appealed. Any party aggrieved by this decision may appeal to the Chancery Court for Davidson County, Tennessee, or may seek review in the United States District Court for the district in which the school system is located. Such appeal or review must be sought within sixty days of entry of a final order in a non-reimbursement case or three years in cases involving educational cost and expenses. In appropriate cases the reviewing court may stay this final order.

IT IS SO ORDERED THIS 20th DAY OF AUGUST, 2001

A. JAMES ANDREWS

Administrative Law Judge

CERTIFICATE OF SERVICE

I hereby certify that a copy of the foregoing FINAL ORDER has been sent be first class mail this 20th day of August, 2001 to the following:


ATTORNEYS FOR ZACHARY DEAL: Gary S. Mayerson, 250 West 57th Street,
Suite 624, New York, NY 10107 and Theodore R. Kern, 602 South Gay Street, Suite 800, Knoxville, TN 37902


ATTORNEY FOR HAMILTON COUNTY DEPARTMENT OF EDUCATION: Gary D.
Lander, Chambliss, Bahner & Stophel, P.C., 1000 Tallan Building, Two Union Square, Chattanooga, TN 37402-2502.


DIVISION OF SPECIAL EDUCATION, Tennessee Department of Education, 8th Floor, Gateway Plaza, 710 James Robertson Parkway, Nashville, TN 37243-0380.

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