The opinion of the court was delivered by: MOTLEY
Plaintiff in Malkentzos v. DeBuono, 95 Civ. 5569, Nicholas Malkentzos, proceeds individually in this action and on behalf of his autistic three-year old son, "MM," against defendants Barbara A. DeBuono, the Commissioner of the New York State Department of Health, the New York State Department of Health, and the New York City Department of Mental Health, Mental Retardation and Alcoholism Services, for violations of the Individuals with Disabilities Education Act, 20 U.S.C. sec 1471 et seq., ("IDEA").
Plaintiff now moves for a preliminary injunction compelling defendants to provide MM with 40 hours per week of applied behavioral analysis ("ABA") services or, alternatively, compelling defendants to reimburse plaintiff for providing these services and, in addition, reimbursing plaintiff for his out-of-pocket expenses incurred in providing these services to date. For the reasons set forth below, plaintiff's motion is granted in its entirety.
A. New York's Implementation Of IDEA
Autism is a neurological disorder that prevents the afflicted individual from processing thought, and usually manifests in self-directed, self-stimulatory behaviors such as avoidance of human contact. Tr. 74-82.
It is also a relatively rare disability, affecting approximately "a handful per 100,000 [disabled] children." H. 59. Autistic individuals are unlike other developmentally disabled individuals in that they lack the skills to begin rudimentary forms of learning. H. 23-24, 94-95. However, with intensive one-on-one early intervention, autistic children are educable. Tr. 71. It is therefore essential that autistic children receive appropriate education as soon as possible, ideally, upon diagnosis as infants.
There are several educational modalities for autistic children, but ABA therapy is the only one that enjoys any quantifiable success.
Tr. 73; H. 15-16, 83; Affidavit of Mary Ellen Herzog, dated November 19, 1995 ("Herzog Aff") at 3. In recognition of the autistic child's inability to learn as others do, ABA breaks down activities into discreet individual tasks, and rewards accomplishment. Eventually, the child learns to integrate information and associate instruction with a given activity. Tr. 70-71, 75-80, 93, 96-97, 100-101. ABA is not administered indefinitely; usually after two or three years the child acquires learning skills and can proceed to more traditional education. H. 14-16. Studies have shown that 47% of autistic children who receive 40 hours per week of this therapy no longer need any special education at all by the time they are of school age. No other form of education enjoys an equivalent record with autistic children. H. 15-16, 83. In fact, ABA is the only program for autistic children with any demonstrated success rate at all. H. 16, 23-25; Herzog Aff 3.
New York City currently has no early intervention program specifically designed to help autistic children. Rather, the only services available to them are those created for otherwise developmentally disabled children. H. 59-61. Clearly, such an arrangement is expedient for the City. However, serious questions exist about whether any benefit whatsoever is derived from placing autistic children in the sort of structured-play environment routinely used with disabled children.
H. 24. Such placement ignores the special difficulties of autistic infants and children and can harm their development. H. 23-24; Tr. 58-59.
New York State, on the other hand, does offer some ABA programs to autistic children. The Stepping Stones School in Westchester County, run by the Union Child Daycare Center, provides in-home ABA services on a first-come, first-served basis to autistic children ages 0 to 5. This program is certified by the state i.e. by defendants, and is fully funded by IDEA. H. 14. At least two other facilities in Westchester also provide ABA to autistic infants pursuant to a contract with the State: Baby's Prep and Home Program, Inc. H. 73-80. These programs (together, the "Westchester programs") provide up to 40 hours per week of in-home ABA services to autistic children, using both state-certified and uncertified trained personnel. H. 17. A child's acceptance into these programs depends on the availability of spots -- not on the child's age. H. 27. New York State and New York City pay certified providers of both ABA and other early intervention services about $ 50 per hour. H. 22.
In the fall of 1994, when MM was eighteen months old, he exhibited unusual behavior. Tr. 21-22. On the recommendation of his pediatrician, plaintiff requested EIP services from New York City's regional director in Staten Island, Judith Davison.
Id. Ms. Davison provided plaintiff with a list of approved EIP service providers. MM was then evaluated at Children At Play ("CAP"), a structured-play special education facility. Tr. 22-23. MM was found to be experiencing "generalized developmental delay" and was thus eligible for EIP services. Stip. 7-8.
MM's evaluators did not realize that he is autistic. Based upon their inaccurate evaluation of his disability, MM was offered an Individualized Family Service Plan ("IFSP") of 5 1/2 hours a week of EIP services at CAP's facilities. Stip. 9-11. CAP's rate of success with autistic children, if any, is unknown. Tr. 174.
In November of 1994, MM's pediatrician suggested that MM might be autistic and recommended that plaintiff consult Dr. Regina DeCarlo, a licensed pediatric neurologist, Tr. 23. Dr. DeCarlo diagnosed MM as autistic and prescribed a minimum of 20 hours per week of ABA. Stip. 13-15. Plaintiff, however, could not find an EIP provider of ABA services for MM. Tr. 27, 195. Plaintiff then appealed to the Eden II school for aid in setting up an ABA program in his own home.
Stip. 19; Tr. 28-29, 83. Eden II's Director of Social Services, Joanne Gerenser, suggested that plaintiff hire local college students majoring in psychology to work as in-home ABA tutors. Although Ms. Gerenser is qualified to provide these services under the State Board of Education guidelines, the students are not. Stip. 19-20. Thus Ms. Gerenser trained these students in ABA therapy and they worked for 20 hours a week at $ 10 per hour under her continuing supervision. Stip. 18; Tr. 28-29, 87. Had plaintiff hired state-qualified workers to provide MM with ABA therapy, they would have been considerably more expensive. Tr. 86.
MM's abilities improved as a result of the ABA therapy. Before beginning the program, MM avoided all human contact, had no apparent language comprehension and engaged in "operant vomiting" to avoid contact. Tr. 42-43, 76-79, 81-82. Nine months after the program began, however, MM was able to follow spoken instructions, make eye contact, speak, imitate activities, had a greater attention span, could indicate his needs and be held by his father. Tr. 44-45, 82-85, 98-100. In comparison, during his four weeks at CAP, MM's negative behavior, such as incessant crying and avoidance of human contact, had continued. Tr. 58-59. Due to MM'S notable progress with ABA, Dr. DeCarlo recommended that his weekly hours be increased to 40, Tr. 30, and plaintiff increased them to 30. Stip. 21-22.
Around this time, plaintiff returned to Ms. Davison to request, in light of the discovery of MM's autism, a revised IFSP that included 40 hours per week of ABA. Stip. 23. He was told that this was not possible due to a lack of ABA therapists. Tr. 195. At no time, however, was plaintiff told that ABA was illegitimate or that 40 hours per week was excessive. Tr. 33. Because MM progressed with ABA, and regressed with CAP, plaintiff withdrew MM from CAP on February 6, 1995, and continued with the at-home ABA services. Stip. 24; Tr. 53-54, 59. The next day, Ms. Davison and several therapists from Staten Island University Hospital amended MM's IFSP (the "amended IFSP") to provide 11 hours total of early intervention, including 8 1/2 hours of ABA therapy (6 hours in-home and 2 1/2 at Staten Island Hospital). Stip. 27-28; Tr. 17, 37-38. Of these 8 1/2 hours, however, only 3-4 are spent actually providing ABA therapy to MM. Tr. 39.
On February 15, 1995, MM was evaluated by Dr. Ira Cohen, a licensed psychologist specializing in autism and associate with the Institute for Basic Research, who concurred in Dr. DeCarlo's diagnosis of autism and recommended a "minimum of 40 hours/week." Stip. 31; Tr. 41-42. Ms. Gerenser likewise recommended "35 to 40 hours a week of intensive behavioral therapy due to the extensive progress that [MM] has shown in the first three months of the [ABA] intervention." Tr. 91.
A new IFSP (the "new IFSP") has now been proposed for MM by evaluators at the Elizabeth Pouch Center in Staten Island University Hospital ("Pouch"). This new IFSP is scheduled to take effect upon termination of the amended IFSP on May 10, 1996, and it will consist of 23 hours of structured-play type services at Pouch. Tr. 164-66. MM will be placed in a group setting with non-autistic, developmentally disabled children and will not receive any ABA therapy.
Tr. 164. Evaluators at Pouch recommended this new IFSP without ever meeting or evaluating MM. Tr. 169. Pouch's success rate with autistic children, if any, is unknown. Id.
In the meantime, MM receives 8 1/2 hours of ABA therapy via his amended IFSP and plaintiff independently provides and funds the balance of the 40 recommended hours. Tr. 40. By November 8, 1995, plaintiff had spent approximately $ 13,400 for this purpose, and has incurred expenses of $ 300 to $ 400 per week ever since. ...