Using Applied Behavioral Analysis for Children with Autism:
The Court as Referee Between Parents and School Districts

Written by Cheryl Marcella
May 1998

A Child Named Elly

We start with an image-a tiny, golden child on hands and knees, circling round and round a spot on the floor in mysterious, self-absorbed delight. She does not look up, though she is smiling and laughing . . . She does not see us at all . . . and though she is eighteen months old, an age for touching, tasting, pointing, pushing, exploring, she is doing none of these. . . She doesn't want any objects. Instead, she circles her spot. Or she sits, a long chain in her hand, snaking it up and down, watching it coil and uncoil . . . until someone comes, moves her or feeds her or gives her another toy, or perhaps a book.
Elly seems content. Not impassive-she smiles, even laughs-but content. Only now and then something goes wrong, something trivial in everything, but in its effect on Elly. Maybe her milk was served in a glass perhaps, instead of her silver cup . . . It was difficult to guess what was wrong, since she gave us no clue, but it was important to find out, for she would cry violently until we managed to get things right again. Elly was eventually diagnosed with autism. (Parks, 1982)

A Child Named John

John, who is three years old, will not allow his parents to hold him, shows no change in expression when they approach, and does not make eye contact. For no apparent reason, John will begin to rock and bang his head against the wall. His parents are at a loss as how to comfort him. John is unable to communicate even his most basic needs. John will not play "pretend battles" with his older brother and his toy soldiers; he spends his time lining the soldiers up in the exact order over and over again, with no attention to his older brother's game.
John's parents are embarrassed to take him into a restaurant or to the local mall because his behavior is so unpredictable. The slightest, unusual noise can set him off, and they can no longer stand the tantrums, screams and self-destructive behavior. John has been diagnosed with autism. (Mandlawitz, 1998).

What is Autism?

There are many definitions of autism, too numerous to state here. Some are clinical, some are used for legal or educational purposes, and still others are depressing and confusing. For purposes of this paper, I am using two definitions to describe autism.
The first definition, developed by the National Autism Society of America (ASA), I find to be both comprehensive and easily understood. According to the ASA: Autism is a developmental disability that typically appears during the first 3 years of life - the result of a neurological disorder that affects functioning of the brain. Autism and its associated behaviors occur in approximately 15 of every 10,000 individuals.
Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.
It is conservatively estimated that nearly 400,000 people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability-more common than Down Syndrome. Yet the majority of the public, including many professionals in the medical, educational, (emphasis added) and vocational fields are still un- aware of how autism affects people and how to effectively work with individuals with autism.
The second definition is from Part 200 of the Education Law. Children who are identifed as autistic are considered to be a "student with a disability" under the law. In the New York regulations an autistic student is defined as: a student who manifests a behaviorally defined syndrome which occurs in children of all levels of intelligence. The essential features are typically manifested prior to 30 months of age and include severe disturbances of developmental rate and/or sequences of responses to sensory stimuli of speech, of language, of cognitive capacities and of the ability to relate to people, events and objects. (8 NYCRR 200.1 [mm][1])
Both definitions are accurate, yet different and useful within their own domain.

The Issue

Parents of children like Elly and John, who are devastated by the diagnosis of autism, "a severely incapacitating lifelong developmental disability", want to utilize every strategy they believe will make a difference- a significant difference- in their children's lives. They look to the schools and the protection of the Individuals with Disabilities Education Act (IDEA) to assist them in providing the best possible education, in the "hope" that their children will have as normal a life as possible, with the best quality of life that is attainable to them.
The IDEA is a federal law that provides funding to the states to assist them in providing an appropriate education, consisting of special education and related services to students with disabilites like Elly and John. The primary objective of the law is to ensure that all eligible students with disabiliites receive a free appropriate public education (FAPE) specifically designed to meet their unique needs. The IDEA sets forth a number of principles that states must follow in providing a special education to students with disabilities. After the state plan is approved, the state assumes the responsibility for meeting the provisions of the law. (Yell, 1998)
Many parents of autistic children have requested that schools provide intensive therapy like Applied Behavioral Analysis (ABA) [which is described in detail below] to try to attain that "hope" for their child. However, schools have concerns because of the expense of ABA for individual children and the lawsuits brought by parents if the schools do not provide this intensive therapy. Do the schools have to accommodate parents' requests for ABA under the IDEA and Part 200 of the New York State Education Law? Is ABA programming a "free and appropriate public education (FAPE)" that "affords the child an educational benefit", or do these requests go beyond that to " maximize the child's educational benefit"?

What is Applied Behavioral Analysis (ABA)?

Proponents of the ABA treatment model, sometimes identified as behavioral intervention or behavior treatment, subscribe to the view that the methods are based on scientific principles of behavior. The behavior analytic view is that autism is a syndrome of behavioral deficits and excesses that have a neurological basis, but are nonetheless amenable to change in response to specific, carefully programmed, constructive interactions with the environment.
Treatment focuses on teaching small, measurable units of behavior systematically. Every skill the child with autism does not demonstrate - from relatively simple responses like looking at others, to complex acts like spontaneous communication and social interaction - is broken down into small steps. Each step is taught (often in one-to-one teaching situations, to begin with) by presenting a specific cue or instruction. Sometimes a prompt is added (such as gentle guidance) to get the child started. Appropriate responses are followed by consequences that have been found to function effectively as reinforcers, to encourage the child to respond in the same way again.
Problematic responses (such as tantrums) are explicitly not reinforced, which often requires systematic analyses to determine exactly what events function as reinforcers for those responses.
Teaching trials (also known as discrete trials) are repeated many times, initially in rapid succession, until a child performs a response readily, without adult-delivered prompts. The child's responses are recorded and evaluated according to specific, objective definitions and criteria. Those data are graphed to provide a "picture" of the child's progress, enabling the teacher or parent to adjust the teaching procedures whenever the data show that the child is not making the desired gains. (Maurice et al., 1996) Instruction can be highly personalized and tailored to each child's learning style and pace.
To maximize the child's success, emerging skills are also practiced in less structured situations. Such "incidental" practice opportunities have to be arranged carefully, frequently and consistently. Ideally, there is a natural progression from one-to-one, to small group, to large group instruction. The overall emphasis is on teaching the child to learn from the normal environment, and how to act on that environment to produce positive outcomes for the child.
The effective use of ABA methods requires special training. It is particularly important to have competent, well trained behavior analysts guiding and supervising behavioral treatment for autistic children. If a person is unskilled in the necessary assessment and behavior-change procedures, they might interact in ways with the child that might worsen rather than improve behavior. If behavior change procedures are not carried out consistently across settings, people and time, the thinking is that any gains the child might make could be lost. (Maurice et al., 1996)
Many professionals use the terms "discrete trial training" and "applied behavioral analysis" interchangeably. Others say there are differences between them and still others explain that discrete trial training is a procedure under the ABA umbrella.

The "Lovaas Method"

Discrete trial training was championed by Dr. O. Ivar Lovaas and is often called simply "the Lovaas method". The most thorough studies of home-based behavioral intervention for young children with autism have been conducted by Lovaas and his colleagues at UCLA.
Dr. Lovaas began working with autistic people in the 1960's. At that time, he mostly worked with people in institutions. In his treatment, he used operant conditioning methods and aversive therapy. In the 1970's, he demonstrated the implications of intensive behavior therapy for intervention with autistic children on a one-to-one basis at home and at school; gradually reducing the use of aversives after much criticism from colleagues and the public. The first report of his studies was released in 1987. According to Lovaas, 47% of a group of 19 children with autism could function normally in intellectual and academic areas following therapy. (Pacer Center, 1998)
Typically, the Lovaas method is a 40 hour per week therapy, preferably instituted before the age of 3, however some people claim positive results at any age. The therapy program begins with one-to-one training 5-7 days a week. Parents and "others" are trained to be "teachers" as well, so that therapy continues throughout the entire day and year.
Once the results of the Lovaas studies were made available to the public, parents of autistic children all over the U.S. were setting up and operating ABA programs in their homes and shortly thereafter, they were requesting that schools provide intensive ABA. At first, the requests were for preschool children. More recently, schools are getting requests for school age children as parents see the benefits of the therapy and want to maintain the program for their children.
Some professionals and families say, based on Lovaas's and other's research, that intense behavior therapy is the only effective method of treatment for autism . Some add that the therapy can cure autism. "Applied behavior analysis is a science, a branch of psychology based on empirical data. Its principles and teaching techniques have been validated in more than 250 studies published in peer-reviewed professional journals since 1980 and many others dating back to 1960" . (Pacer Center, 1998)
Other professionals are highly critical of Lovaas's studies, identifying a number of methodological flaws. Others believe that the tests were skewed toward a higher functioning group of children with autism; therefore, not all children with autism will benefit. Still others maintain a neutral silence until more research is available. This year, results of a newly released study by Tristam Smith and colleagues, who evaluated the progress of low functioning autistic children who participated in a Lovaas-type intensive early intervention program conclude that intensive behavior modification resulted in substantial improvements in severely retarded autistic children. The results were however, much more modest than those reported for higher functioning children who received the same treatment. (Autism Research Institute, 1998)

Relevant Legal Cases

The extensive background on autism and ABA was provided to "set the stage" for a better understanding of the issues and controversy surrounding these techniques as the cases are reviewed. To begin to address the questions posed earlier and to see the trends that are developing, it is necessary to examine what hearing officers and judges are deciding. After an exhaustive research of the cases, the following is a list and brief overview of the decisions handed down by courts and state review officers on (what I believe to be), every ABA case that effects our jurisdiction (district and circuit courts, and State Review Officer [SRO] decisions).

Board of Education of the City School District of the City of New York, 24 IDELR 199, (SEA NY February 1996, 95-90).
A parent became dissatisfied with the placement for her 6 year old autistic child in the district's "specialized instructional environment", and at her expense she obtained a home-based program using the ABA methodology. The impatial hearing officer (IHO) found the public school placement appropriate. The parent appealed and requested reimbursement for the cost of her child's tuition in a private school that utilizes the ABA method; in which she unilaterally enrolled her child. The SRO determined that the parent failed to establish that the private school offered an instructional program to meet the child's needs.

Board of Education of the Greenwood Lake Union Free School District, 23 IDELR 1032, (SEA NY March 11, 1996, 96-7).
The district offered the parents of a 6 year old autistic child placement in the Treatment and Education of Autistic and related Communication Handicapped CHildren (TEACCH) program at the BOCES, in a self-contained class. The parents wanted a continuation of an in-home Lovaas program and for the district to pay for their child to attend a private nursery school so that she could acquire social skills. The IHO concluded that the TEACCH program was appropriate, met the least restrictive environment (LRE) requirement, and the parents were not entitled to relief. The IHO also noted that the parents of a disabled child did not have the legal right to require a school district to use a specific teaching methodology. The parents appealed, and the SRO upheld the IHO's decision noting that the recommended BOCES program would be a less restrictive placement than a home-based program.

Board of Education of the City School District of the City of New York, 2 ECLPR {241, (SEA NY July 1996, 96-60).
The district proposed placement in a "therapeutic nursery program" for a preschool child with "autistic tendencies" where the child would receive an ABA program. The parents requested continuation of a home-based ABA program and reimbursement for their expenses. The IHO concurred with the district's proposal, noting that there was no basis to conclude that the child could only achieve the Individualized Education Program (IEP) goals in a home-based program and that the home-based program was not the LRE. Reimbursement was therefore denied. The SRO affirmed, finding that the center-based program was appropriate and it was the LRE.

Board of Education of the Syosset Central School District, 2 ECLPR {257, (SEA NY July 1996, SRO 96-29).
The district provided a placement for a preschool child with multiple disabilities, with "autistic-like" behaviors, in a program that provided ABA, with 30 hours of instruction per week. The parents requested additional ABA services for a total of a 40 hour per week program with reimbursement for an in-home program to supplement the school program. They argued that the additional services were needed to meet the IEP goals. The IHO decided that the district did provide the child with sufficient services to enable the child to attain educational benefit and the request for additional services and reimbursement for an in-home program were denied. The SRO affirmed the decision.

Board of Education of the City School District of Troy, 2 ECPLR{280, (SEA NY September 1996, 96-60).
The district offered 30 hours per week of ABA therapy to a 5 year old child with autism. However, the parents requested 40 hours per week. The IHO remanded the case back to the Committee on Preschool Education (CPSE). The parents appealed, challenging the authority of the IHO. The SRO concluded that the IHO had been improperly selected and remanded the case back to the Committee on Special Education (CSE), since the child had aged out of the preschool system at the time of the determination.

Board of Education of the Lawrence Union Free School District, 2 ECPLR {281, (SEA NY October 1996, 96-58).
The district provided a 5 year old boy with pervasive developmental disorder (PDD) a 30 hour a week ABA program in the BOCES. The parents requested an additional 25 hours a week of home-based ABA therapy. The IHO concluded that the district program was appropriate and denied the parents request that they be reimbursed for providing their son a home-based instructional program. The SRO upheld the decision concluding that the child was meeting his IEP goals while in the BOCES program, and that it would be speculation to conclude that he must have the home-based program to continue to make progress in the BOCES program.

Malkentzos v. DeBuono, 923 F.Supp. 505 (S.D.N.Y. 1996), 3 ECPLR {2, (2d. Cir. 1996), 25 IDELR 36 (2d. Cir. December 5, 1996)
and
Still v. DeBuono, 24 IDELR 334 (S.D.N.Y. May 30, 1996), 927 F.Supp. 125 (S.D.N.Y. 1996), 25 IDELR 32 (2d. Cir. December 5, 1996).
Parents requested ABA therapy for their autistic son, who was under 3 years of age, from the New York City Department of Health (DOH). That request was denied because the New York City Early Intervention program did not provide ABA therapy to autistic children under the age of 3 and there was a shortage of qualified providers. The parents then arranged and paid for their son to receive in-home ABA therapy up to 20 hours a week under the direction of a certified social worker and six college students that were not licensed professionals, nor were they designated as early intervention service providers by the State Commissioner of Health. At a State Administrative proceeding before the DOH the parents sought reimbursement for those costs, claiming that the DOH denied their son an appropriate education. The parents prevailed and the city appealed.
The district court found, in Malkentzos, that the state was unable to show appropriateness of its early intervention program, and the unavailability of trained personnel did not excuse statutory obligation to provide an appropriate education. The court granted the parents' request for injunctive relief and compensation for expenses incurred.
When the Still case was before the district court, it consolidated both Malkentzos and Still due to the similarity of the facts. Thus the holding in Malkentzos, was incorporated in its entirety to the Still case. The case was then dismissed for failure to state a claim. The City and the State appealed the preliminary injunction.
The circuit court, in Still, affirmed the district court's dismissal of the claim. In Malkentzos, the court concluded that the injunctive order for retrospective relief was improper and remanded the claim to the district court for a decision as to whether the parents were entitled to reimbursement for uncertified ABA therapy. The court vacated the order for prospective injunctive relief due to mootness, since the child had aged out of eligibility under Part H by the time of the hearing.

Board of Education of the North Rose-Wolcott Central School District, 26 IDELR 325, (SEA NY March 18, 1997, 97-1).
A school district proposed an out-of-district placement for a 7 year old with autism. The parents requested a home-based ABA program. The IHO ruled that the district committed procedural violations during the IEP process and as a remedy ordered an in-home ABA program. The SRO also found procedural violations and concluded the IEP was invalid. The district was ordered to continue in-home instruction, however, the choice of methodology was left to the district.

Board of Education of the City School District of White Plains, 3 ECPLR {35, 25 IDELR 872, (SEA NY February 21, 1997, 96-81).
The district proposed a program for a 4 year old boy with autism which included 26 hours of ABA. The parents challenged the number of hours and requested reimbursement for the cost of additional ABA therapy they had provided. The IHO ordered the district to provide 40 hours a week of ABA. The district appealed, and the SRO concluded that the student did not require 40 hours of therapy in order to make educational progress, and that it would be speculative to assume that he would not have achieved satisfactory progress without the extra services the parents provided. The parents were therefore denied reimbursement because the district program was determined to be appropriate.

Mr. X v. New York State Education Department, 26 IDELR 854, 975 F. Supp. 546 (S.D.N.Y. September 4, 1997).
The CPSE proposed a center-based program for a 3 year old child with autistic symptoms, including 25 hours a week of ABA instruction. The parents rejected the proposed IEP and requested continuation of a 40 hour a week in-home ABA program. The HRO ruled for the district. The parents appealed the decision to the SRO who dismissed the appeal. The district court reversed the decision, stating that the IEP did not provide a FAPE that would render some educational benefit to the child, which is in violation of the IDEA. In addition, the court determined that the IEP failed to make recommendations based on the child's individual diagnosis and unique needs.

Board of Education of the South Huntington Union Free School District (SEA NY November 1997, 97-30).
Parents of a preschool child with autism, with relatively severe educational deficits, requested that the school district assume the cost of 15 hours of home instruction using ABA in addition to the 30 hour educational program the district provided. The IHO concluded that the district was not obligated to assume the cost of providing the additional home instruction; the parents appealed. The SRO concluded that the child made significant educational progress while participating in both the school's program and the home-based program. The SRO ordered the reimbursement of one hour of instruction after school on weekdays and 5 hours of instruction on Saturdays and Sundays.

Analysis of the Case Decisions

In order to analyze the ABA cases described in this paper, it is important to understand the meaning of a free and appropriate public education and it's correlation to the issue posed earlier. Is ABA methodology a free and appropriate public education, or is ABA above and beyond what should be expected of the school districts?

What is a Free and Appropriate Public Education (FAPE)?

Congress did not provide a substantive definition of FAPE in the IDEA. This appears to be fitting, because an appropriate education must take into account the individual needs of each child. Therefore, an appropriate education will vary from child to child.
In Board of Education of the Hendrick Hudson School District v. Rowley (1982) [hereafter Rowley], the Supreme Court considered the meaning of FAPE. The Supreme Court developed a two-part test to be used by courts in determining if a school has met its obligations under the IDEA to provide a FAPE. First, has the school complied with the procedures of the Act? And second, is the IEP developed through the Act's procedures reasonably calculated to enable the child to receive educational benefits? (Rowley,206-207) The Court stated that the FAPE standard can only be arrived at through a multifactorial evaluation conducted on a case- by- case basis. In special education cases involving FAPE, the courts role is to (1) determine if procedural requirements are being met; (2) to examine the substantive requirements of FAPE; and (3) to determine if the special education is providing educational benefit. In making this determination, courts should give deference to educational determinations made by school officials. Educational procedures and methodology, therefore are the responsibility of the schools. It is the responsibility of the courts to determine compliance with IDEA. (Yell, 1998)
FAPE is realized through the development of an IEP. A team of people formulate the IEP. The composition of the team is mandated by the IDEA. The IEP delineates the special education and related services to to be provided by the school. Once the IEP is developed, decisions concerning students placements are made. Placement decisions must be in conformity with the LRE rules of the IDEA, which requires placement in general education settings when appropriate, in order for children with disabilities to have opportunities to be integrated with their non-disabled peers.
The Supreme Court Court ruled in Rowley that students with disabilities do not have an enforceable right to the "best posssible education" or an education that allows them to " achieve their maximum potential". Rather, they are entitled to an education that is reasonably calculated to confer educational benefit. Therefore, the purpose of FAPE was to provide students with disabilities a " basic floor of opportunity".

Rulings on the Cited ABA Cases

When the ABA programming prevailed in the decisions reviewed, it was because the ABA or Lovaas programming was appropriate while the school's and the DOH's programming was inappropriate. Often, programming was found to be inappropriate due to the lack of intensity, the focus of the program offered and the lack of individualization. The rulings indicate that when a school district's programming does not show results and is compared to the Lovaas or the ABA methods, which does collect data and can provide evidence of progress, it is likely that judges and review officers will favor the ABA programming. However, when parents request an ABA program and/or reimbursemnt for an ABA program when it was determined that the school offered appropriate programming that results in educational benefits, the parents request is denied. This seems to indicate that in a contest of two appropriate programs, the school district will prevail.

Questions and Recurring Issues Regarding ABA Cases

Home-based programming: Is it the least restrictive environment?

In three cases, the Board of Education of the Greenwood Lake Union Free School District, 96-7 (hereafter Greenwood); Mr. X v. New York State Education Department (hereafter Mr. X); and the Board of Education of the City School District of the City of New York, 96-25 (hereafter City of New York, 96-25), consideration was given to the question: Is home-based programming the LRE?. In Greenwood, the court explains that each board of education is required to ensure that a continuum of alternative placements is available to meet the needs of children with disabilities. Within that continuum, a program of individual instruction at home, is one of the most restrictive placements. The recommended BOCES class was determined to be a less restrictive placement than a home-based program. (Greenwood, p.10) In Mr. X, an evaluator was under the mistaken understanding that state education law did not fund home-based programs, therefore, a center-based program was recommended. The decision was made based on that misunderstanding, not because it was the most appropriate setting. The New York statute that was read into the record to clarify the issue states that " nothing herein shall preclude an approved program from providing services in a preschool child's home" in order to clarify that issue. (N.Y. Education Law {4410[9][e]) Also in Mr. X, the Second Circuit noted that the presumption in favor of mainstreaming must be weighed against the importance of providing an appropriate education to disabled children. Although home-based ABA instruction may seem contrary to the mainstreaming objective, the court notes that none of the expert evaluations recommended complete mainstreaming as appropriate or beneficial, but most concluded that the home-based program supplemented with the child's three classes with his non-disabled peers was appropriate and beneficial. (Mr X, pp.558 and 561). In the City of New York, 96-7, the SRO disagrees with the parents that the center-based program the district provided is more restrictive than the home-based program. She maintains that the child needs to be educated with other children to improve social and communication skills.

Methodology: Do parents have the right to demand a specific methodology be used with their child?

Based on the cases cited above, it is clear that parents can not demand that a particular method be used with their child for special education programming. A few years ago, there were so many requests for ABA, the school districts needed guidance. Parents were demanding that the use of ABA be included on their child's IEP; many still do make that demand. The NYSED distributed a memo to clarify this issue. It states, "Educators use a variety of approaches to meet the special education needs of individual students, including approaches based on behavioral modification/applied behavioral analysis. While it is recognized that a particular approach may be useful to meet a child's needs in a number of areas . . . the State Education Department has never endorsed any one approach as preferable. Furthermore, decisions of the SRO and the Commissioner have upheld the CSEs/CPSEs right to determine an appropriate educational placement for a student with a disability without r ecommending any particular methodology." (SED Memo, August 1995) However, again, if the parents can prove the success of their child, using data gathered from the use of ABA, and the school district can not prove they have provided an appropriate program, the parents will probably prevail.

What are the protections for children who qualify for Part C of the IDEA?

With the higher incidence rate of autism and children being diagnosed at an earlier age, along with the feeling of urgency by parents to get help immediately and intensively for their children, the courts will be seeing many more cases for children under the age of three. They are protected under Part C of the IDEA and under the Early Intervention system in New York State. In the Still and Malkentzos cases, the Second Circuit noted that the basic structure and purpose of Part C was similar to Part B - to provide FAPE to children based on their individual needs. (Still v. DeBuono, 25 IDELR 32)
The Circuit Court decision in Malkentzos demonstrated a problem with Part C. Because Part C covers such a short span in a child's life, by the time the case is litigated, a child will often have "aged out" and no longer be eligible for services. In such cases, courts will declare such claims moot.

What is the " traditional school year " and how does it effect home-based ABA programs?

Neither the IDEA nor regulations implementing the law specifically address the provision of special education programs that extend beyond the traditional school year of approximately 180 school days. Parents and advocates have contended, however, that extended breaks in educational programming (i.e.. school year and summer vacations) can result in severe regression of skills and subsequent failure to recoup lost skills within a reasonable period of time. (Yell, 1998) Extended school year (ESY) services may be needed to provide FAPE. When this is necessary, there must be no cost to the parents. The determination of whether a student with disabilities needs ESY must be made on an individual basis.
Because the law and regulations are silent on ESY, courts have been called on to address the issue. The courts have clearly stated that if ESY services are required to ensure the provision of a FAPE, they must be provided. (Yell, 1998)
Children who are autistic typically receive ESY services due to the nature of the disability and the potential to regress. However, many of these children receive 40 hours a week of ABA therapy either in school and/or at home, which is or could be part of their ESY services. This translates to not only ESY services, but to extended school days and potentially extended school weeks.
In the Board of Education of the South Huntington Union Free School District, SRO 97-50 (hereafter South Huntington UFSD, 97-50), the review officer considered whether the child could achieve his IEP goals with the amount of education that the CPSE had offered him. He felt that neither party exclusively addressed that question in the hearing, and was not persuaded that he could achieve the goals without the additional programming the parents provided at home for 15 hours per week, for a total of 45 hours a week of programming. He ordered that the child should have one hour of instruction after school on weekdays and 5 hours a day on Saturday and Sunday, at no expense to the parents. (South Huntington UFSD, 97-50, pp.9 and 10)
In Mr. X, the District Court notes that the CPSE did not submit evidence at the hearing showing that 25 hours a week was appropriate or provided a benefit. The court made reference to the Report on Preschool Education Issues in New York State published by SED dated September 1995, which addressed parental requests for extensions of special education services beyond 25 hours a week. The report stated that " there is currently no maximum level established for preschool education programs and services . . our Office of Counsel advised that it is inconsistent with Federal Law to establish an absolute maximum for the provision of FAPE". (Mr. X, p.560)
In the Board of Education of the Syosset Central School District, SRO 96-29 (hereafter Syosset CSD, 96-29), referred to the State Education Department Memo, August 1995, setting forth guidelines for a FAPE for children with disabilities. The parent objected because the Nassau County Commissioner of Mental Health sent a letter to the local school districts enclosing the memo named above. The Commissioner stated that the county would "not approve optimal services which are far beyond the guidelines", pointing out that the memo indicates that a "typical" school day for a preschool child with a disability would be the same as provisions for elementary school children, i.e.. five hours a day for 5 days a week. (Syosset CSD, 96-29) (However, the memo also states that CSEs and CPSEs should consider a half-day program or service for preschool or kindergarten level students as an appropriate level of service.) In addition, the memo declares that school districts are not required to provide a school day for most students with a disability in excess of the school day established for all students, and need do so only in those extreme circumstances where the extraordinary needs of the child, as determined by the CSE/CPSE require more special education services. The memo notes that parent training may also be included on the child's IEP and if it is not feasible to provide parent training during the day, the training may be delivered outside of the school day. It stresses that it is "important for preschool students with disabilities that parent training be so designed to assist parents in extending elements of the special education program beyond the school day, e.g. behavior modification activiies". (SED Memo, August 1995)
The SRO ruled for the school district, taking into consideration the SED Memo and citing Rowley. She determined that the school district did recommend an appropriate education for the child that had meaningful benefit.

Can parents be reimbursed for providing an appropriate education to their child if the school district does not provide one?

Parents of autistic children all over this country are paying college students and sometimes high school students to come into their homes to provide one-to-one ABA instruction. If a parent wants to provide their child with more ABA training then the school district will provide, this is the route many parents take. The cost of providing this program at home has been estimated to be from $5,000 to $20,000 a year. The cost would be even more prohibitive if they were only to pay for certified or licensed providers. It is also difficult to find qualified providers, for the state and school districts, and for the parents.
In Malkentzos, the court ordered that the parents be reimbursed for the ABA programming they provided in their home (which was determined to provide a FAPE) by a certified social worker and six uncertified college students. In addition, the court concluded , following Carter, that the "promise of the IDEA would be defeated if reimbursement were barred because the privately obtained ABA providers were unqualified, when the very reason ABA was not provided by the state was a shortage of such qualified individuals."

In Closing

Catherine Maurice is a strong advocate of ABA, a supporter of Dr. Lovaas and believes her two children were "saved" by ABA. In her book, Let Me Hear Your Voice, she concludes with these sentiments: Recently, a friend of mine heard a psychologist expressing the fervent wish that "parents wouldn't start demanding this 'thirty-to-forty-hours-a-week therapy business'. Why not? he was asked. How can they pay for that? he fumed. I don't want to see parents having to take out a second mortgage on their homes!"
I reflected on that comment for a long time. It is true that money is a very real issue, and poses a significant problem for many parents of autistic children. There are ways of funding the therapy, as I have tried to indicate, but even so, the struggle to obtain these funds can be very difficult. Nevertheless, I would respectfully submit to that psychologist that it is not his responsibility or right to make that decision for parents. I would ask that psychologist to reflect on one question only . . . Would he want someone protecting him in such a fashion if this were his own child?
. . . Stories and comments from parents reflect the difficulties people often face in obtaining appropriate interventions for their autistic children. It takes organization, commitment, courage, time, money. And over and over again, the point must be made that, though powerful and effective, behavioral therapy is not a panacea, not a miracle cure.
But difficult as the current state of affairs may be, it is still better than the universal hopelessness or the inflated promises that held sway just a few years ago. Whether the result is full recovery or slow and steady progress, intensive behavioral therapy begun as early as possible can offer parents today a means of fighting autism and teaching their children. Let us work to provide this educational service to all autistic children, regardless of age or severity of condition, and to all families, regardless of income. (Maurice, 1993)

References

Autism Research Institute (1998). UCLA Findings: Intensive Intervention Helps Even Low-Functioning Children. Autism Research Review International, 12 (1), 1-2.

Autism Society of America (1998). What is Autism? Advocate, 30 (2), 3.

Board of Education of the City School District of the City of New York, 24 IDELR 199, (SEA NY February 1996, 95-80).

Board of Education of the City School District of the City of New York, 2 ECLPR {241, (SEA NY July 1996, 96-25).

Board of Education of the City School District of the City of Troy, 2 ECLPR {280, (SEA NY September 1996, 96-60).

Board of Education of the City School District of the City of White Plains, 3 ECLPR {35, 25 IDELR 872, (SEA NY February 21, 1997, 96-81).

Board of Education of the Greenwood Lake Union Free School District, 23 IDELR 1032, (SEA NY March 11, 1996, 96-7).

Board of Education of the Hendrick Hudson School District v. Rowley, 458 U.S. 176 (1982).

Board of Education of the Lawrence Union Free School District, 2 ECLPR {281, (SEA NY October 1996, 96-58).

Board of Education of the North Rose-Wolcott Central School District, 26 IDELR 325, (SEA NY March 18 1997, 97-1).

Board of Education of the South Huntington Union Free School District (SEA NY November 1997, 97-30).

Board of Education of the Syosset Central School District, 2 ECLPR {257, (SEA NY July 1996, SRO 96-29).

Burlington School Committee of the Town of Burlington v. Department of Education of Massachusetts, 471 U.S. 359 (1985).

Florence County School District Four v. Carter, 114 S.Ct. 361 (1993).

Hart, Charles A. (1993). A Parents Guide to Autism. New York, NY: Simon & Schuster, 87-88, 194-195. Individuals with Disabilities Education Act Amendments of 1997.

Malkentzos v. DeBuono, 923 F.Supp. 505 (S.D.N.Y. 1996), 3 ECLPR {2, (2d. Cir. 1996), 25 IDELR 36 (2d Cir. December 5, 1996).

Mandlawitz, Myrna (1998). Young Children with Autism: Navigating the Legal System. National Association of State Directors of Special Education, Inc., Alexandria, VA.

Maurice, Catherine (1993). Let Me Hear Your Voice: A Family's Triumph Over Autism. New York, NY: Ballantine Books, 323.

Maurice, Catherine, ed. (1996). Behavioral Interventions for Young Children with Autism. Austin, TX: Pro-Ed, Inc., 29-44.

Mr. X v. New York State Education Department, 26 IDELR 854, 975 F. Supp. 546 (S.D.N.Y. September 4, 1997).

New York State Education Department Memorandum (January 1998). Guidance on Implementation of the Reauthorization of the Individuals with Disabilites Education Act. Office of Vocational and Educational Services for Individuals with Disabilities. Albany, NY.

New York State Education Department Memorandum (August 1995). Guidelines for the Provision of a Free Appropriate Public Education to Students with Disabilities. Office of Vocational and Educational Services for Individuals with Disabilites. Albany, NY.

New York State Education Department (January 1998). Updated Regulations of the Commissioner of Education -Subchapter P of the Education Law, Part 200 - Students with Disabilities.

Pacer Center (1998). Autism: Even the Experts Debate Treatment. The Pacesetter, 21 (1), 9-11.

Park, Clara Claiborne (1982). The Siege: The First Eight Years of an Autistic Child. Toronto, Canada: Little, Brown & Company. 3-12.

Schopler, Eric and Mesibov, Gary B. (1994). Behavioral Issues in Autism. New York, NY: Plenum Press. 62-63.

Still v. DeBuono, 24 IDELR 334 (S.D.N.Y. May 30, 1996), 927 F. Supp. 125 (S.D.N.Y. 1996), 25 IDELR 32 (2d. Cir. December 5, 1996).

Yell, Mitchell L. (1998). The Law and Special Education. Upper Saddle River, NJ: Prentice-Hall Inc, 72-92, 145-166.