What children experience in their early years will shape the rest of their lives. We now know from research in a variety of sectors, that children's early brain development has a profound effect on their ability to learn and on their behaviour, coping skills and health later in life.
Research also indicates that intensive early behavioural intervention with children with autism can make a significant difference in their ability to learn and keep pace with their peers. With the intervention many children with autism will make considerable gains by grade one.
[1] These words embody the philosophy underlying the Ontario Government's"Intensive Early Intervention Program For Children With Autism" commenced in1999, and numerous programmes undertaken in other provinces, the United States and severalcountries. To date, the Government of British Columbia has resisted a similar initiative.
[2] Autism or autism spectrum disorder (ASD) is a neurobehavioural syndrome caused by adysfunction in the central nervous system which leads to disordered development. Accordingto the Diagnostic and Statistical Manual of Mental Disorders, 4th edition("DSM-IV"), the onset of autistic symptoms begins within the first three yearsof life and includes three general categories of behavioural impairment:
(a) qualitative impairments in social interaction,
(b) qualitative impairments in communication, and
(c) restricted repetitive and stereotyped patterns of behaviour, interest and activities.
[3] Autism may be viewed as the prototypical form of a spectrum or continuum ofautistic disorders that vary in severity but share those core symptoms of behaviouralimpairment.
[4] Unless their condition is successfully treated, almost all autistic children aredoomed to a life of physical, emotional, social, and intellectual isolation and eventualinstitutionalization - a tragic outcome for the children, their families, and society.
[5] The four infant petitioners, Connor Auton, Michelle Tamir, Jordan Lefaivre, andRussell Gordon Pearce, were diagnosed with autism or ASD. They have received treatment inthe form of intensive early behavioural intervention based on methods developed by Dr.Ivan Lovaas and his colleagues at the University of California ("Lovaas AutismTreatment"). The four adult petitioners, Michelle Auton, Sabrina Freeman, LeightonLefaivre, and Janet Gordon Pearce, are mothers or fathers of the infants who sue in theirown right and as litigation guardians. Happily, Russell Pearce no longer requires LovaasAutism Treatment; unhappily, Connor Auton's family can no longer bear the expense of thetherapy.
[6] The Lovaas Autism Treatment received by the infant petitioners has been funded bytheir parents. Requests to the Ministries of Health ("MOH"), Education("MOE"), and Children and Families ("MCF)", have gone largelyunheeded. MOH has taken the position that the funding responsibility for children withspecial needs falls under the jurisdiction of MCF. In a joint letter, dated July 30, 1998,Deputy Ministers of MOE and MCF informed a number of the families that the government wasnot "in a resource position" to respond to requests for funding. Further, MOE'sresponsibility for special education programmes and treatments is limited to school agechildren. Ideally, Lovaas Autism Treatment begins as soon as the child is diagnosed withautism or ASD, usually around age two.
[7] These proceedings were commenced under the Class Proceedings Act,R.S.B.C. 1996, c. 50, by Connor Auton and his mother Michelle Auton, on behalf of autisticchildren and their families who have requested funding for Lovaas Autism Treatment fromthe provincial government and who have been denied such funding. In Reasons for Judgmentdated March 31, 1999, I dismissed the petitioners' application to certify the proceedingas a class action and ordered that their claims be dealt with summarily under the JudicialReview Procedure Act, R.S.B.C. 1996, c. 241. The pleadings have been amended toadd additional infant petitioners and their parents and the named respondents have becomethe Attorney General of British Columbia and the Medical Services Commission of BritishColumbia (collectively, the "Crown").
[8] The petitioners claim relief pursuant to the Canadian Charter of Rights andFreedoms (the "Charter"). Specifically, they seek adeclaration that the denial of funding for Lovaas Autism Treatment by each of theMinistries violates certain statutes and sections 7 and 15 of the Charter.They also seek an order of mandamus requiring the Crown to pay for the costs ofLovaas Autism Treatment already incurred and the future costs of that treatment. The Crowndenies that the petitioners have been discriminated against in a manner that contravenesthe Charter. In the alternative, they say that any violation of thepetitioners' Charter rights is justifiable pursuant to s. 1.
[9] Counsel agree that, if the petitioners are successful, the issue of the appropriateremedy under s. 24(1) of the Charter is to be adjourned to enable counsel tomake further submissions.
What is Autism or Autism Spectrum Disorder ("ASD")?
[10] While the etiology (or medical cause) of autism or ASD is unknown, there issubstantial agreement about certain features of the affliction. Autistic disorders arecomplex neurological conditions affecting between 10 and 15 of every 10,000 children. Theyare significantly more prevalent among boys than girls. Among children with untreatedautism or autism spectrum disorders, about half of all pre-school age children (ages 2 to6) are non-verbal. Most have limited attachment to caregivers, display little interest inpleasing them, evade eye contact and resist displays of physical affection. In a group ofpeers, a child with autism is likely to avoid contact and remain isolated from the group.Instead of playing imaginatively with toys, autistic children often engage in repetitivebehaviour such as arranging objects into neat rows or flapping their hands in front oftheir eyes. When these behaviours are interrupted, or when they do not get their way, manyautistic children have intense tantrums that may include aggression toward others orself-injurious behaviour such as banging their heads against hard objects.
[11] Without effective treatment, autism is a lifelong affliction that results in theplacement of over 90% of untreated children in group homes or other residentialfacilities. Only one of 64 children will show any improvement without treatment.
[12] The four infant petitioners began showing signs of lack of appropriatedevelopment, or began losing the development they had achieved, between infancy and age 2.Their levels of impairment and the severity of their symptoms covered a range on thespectrum of autistic disorders. However, none of them were able to understand the worldaround them or to communicate. They either did not develop language at all or lost the fewwords they had mastered. They would not make eye contact or play appropriately with toysor with peers. They lacked a sense of separation anxiety and had no fear of dangerousobjects (e.g., cars, knives, or fire). They needed constant supervision. One of them wouldrun away at any time of the day or night, if given the slightest opportunity, forcing hisparents to put multiple locks on all doors and windows.
[13] The children's behaviours ranged from the odd to the self-injurious: handflapping, obsessing with a particular object or pattern, vocalizing or singingincessantly, screaming, biting, pinching or hitting themselves and people around them,head banging, eating inedible objects (such as sand, gravel, coins, Gyproc), plucking outtheir eyebrows, or smearing their faeces. All of the children suffered from severe sleepdisruptions, adding to the stress and exhaustion experienced by their families.
[14] The parents of the infant petitioners have described the effects of Lovaas AutismTreatment as dramatic. Connor Auton made substantial progress in the areas ofcommunication, ability to learn, and development of gross and fine motor skills throughhis Lovaas programme. Since his therapy was discontinued because his mother can no longerafford it, Connor has maintained some of his gains but ceased to learn new skills.
[15] Michelle Tamir commenced 35 hours per week of Lovaas Autism Treatment in January1992. By September 1993, she was able to enter a mainstream kindergarten with a full timeaide. She is now successfully mainstreamed in a regular grade 6 classroom. Her motherreports dramatic changes in her language and communication skills.
[16] Russell Pearce commenced Lovaas Autism Treatment on February 19, 1997 and is nowdoing well in kindergarten. As a result of his therapy, he made great progress in languageand learned age appropriate skills and behaviours.
[17] Jordan Lefaivre has also successfully attended kindergarten with the assistance ofa teaching aide and Lovaas treatment at home.
[18] A number of letters written by the petitioners' doctors, outlining the significantadvances made by these children, were attached as exhibits to the affidavits of theparents. As the Crown points out, those letters do not constitute admissible evidence.However, I am satisfied on the basis of admissible evidence that the infant petitionersmade significant gains as a result of the Lovaas Autism Treatment they received.
[19] The adult petitioners have incurred substantial expenses both recruitingconsultants to develop and revise their children's treatment plans and retaining trainedtherapists. In some cases, their marriages have broken down under the strain of the costlytreatment superimposed on the overwhelming physical and emotional stresses of caring foran autistic child.
[20] The establishment of a Lovaas programme for Connor, Michelle, Russell, and Jordanfollowed months or years of frustration as their parents attempted to access governmentservices. The adult petitioners describe a litany of woes. Services such as respiteassistance or pre-school aides were contingent on a diagnosis of autism and thenavailability was based on means testing. Social workers were either not available or wereunable to explain what services were accessible or the criteria for service eligibility.Frequently, workers gave information that was misleading or wrong. Benefits were promisedyet never delivered or they were given but then abruptly terminated. Some parents weregiven funding earmarked for respite services on the tacit understanding that they coulduse the money to fund Lovaas therapy; that avenue was blocked when the MCF declared a"moratorium" on the use of monies for that purpose. Families encountered waitinglists of up to two years for access to facilities that purported to offer any treatment,such as Laurel Group and Gateway Society for Persons with Autism ("Gateway").
[21] The petitioner Sabrina Freeman is the mother of Michelle Tamir. While pursuing hergraduate studies at Stanford University in 1991, Ms. Freeman was able to access LovaasAutism Treatment for her daughter for four years. On her return to Vancouver in 1995, Ms.Freeman began an energetic but unsuccessful campaign to advocate for government support ofLovaas Autism Treatment programmes. In 1996, she and her husband established an advocacygroup of parents, Families for Early Autism Treatment of BC ("FEAT BC"). Theyobtained the signatures of 63 psychiatrists who were familiar with Lovaas Autism Treatmenton a petition endorsing that therapy as a necessary medical treatment that is highlyeffective in the treatment of autism.
[22] The Crown objects to the admissibility of the petition as evidence of the opinionsof the signatories. Nevertheless, there is independent evidence of medical support forLovaas Autism Treatment in B.C. For example, Dr. Jane Garland, a psychiatrist and ClinicalAssociate Professor, has deposed that she was a signatory of that petition and supportsearly intensive behavioural intervention to improve the functioning of children withautism or ASD.
[23] Dr. Glen Davies, a clinical child psychologist in B.C., has worked with autisticchildren since 1984. He has deposed that he knows of approximately 70 families associatedwith FEAT BC who are privately funding Lovaas type programmes and he estimates that numberrepresents about half of the families who are attempting to develop those programmes.
Lovaas Autism Treatment:
[24] Lovaas Autism Treatment is a highly intensive form of one-on-one behaviouraltherapy administered for up to 40 hours a week for two to three years. The treatment isexpensive, costing between $45,000 and $60,000 a year per child.
[25] Dr. Lovaas began his behavioural intervention project in 1970 after observing thatautistic children, unlike normal children, do not learn from their everyday environments.He hypothesized that a special, intense and comprehensive learning environment for veryyoung autistic children would allow some of them to catch up with their normal peers byfirst grade. That treatment should occur in multiple settings (home, school,neighbourhood, etc.) and involve several people including the child's parents, peers, andteachers. In 1987, Dr. Lovaas published the results of his study.
[26] Dr. John McEachin, a clinical psychologist in New York and California, receivedhis graduate training under Dr. Lovaas at UCLA on the Young Autism Project("YAP") between 1977 and 1987. He described Dr. Lovaas' published studyevaluating YAP's programme of intensive behavioural treatment for children with autism.The children were three years of age and younger at the commencement of treatment andreceived an average of 40 hours a week of intensive one-on-one treatment by a therapist.Dr. Lovaas reported that 17 out of 19 children who received intensive behaviouraltreatment significantly improved their social and communication skills. Nine of the 19children were able to successfully complete first grade in regular education classeswithout special supports and were indistinguishable from their peers on measures of IQ,adaptive skills, and emotional functioning. A control group of children with similardiagnoses and comparable severity of symptoms, who received no intensive treatment, showedvery little improvement. None were able to enter regular education classes.
[27] A follow-up study by McEachin, Smith and Lovaas in 1993 showed that treatmentgains were maintained and eight of the nine children continued to progress in regulareducation classes without support. Dr. McEachin states that the 17 children with superioroutcomes in the experimental group showed an average IQ gain of more than 20 points, aresult which has not been even remotely approximated by any other treatment methodology inany controlled studies. In fact, Dr. McEachin states that the 1987 Lovaas study and the1993 follow up study are the only controlled studies that have been undertaken withrespect to early intervention programmes for autistic children.
[28] Dr. McEachin described the intensive behavioural modification treatment used inLovaas therapy as the intensive application of applied behavioural analysis (ABA)techniques for the amelioration of abnormal behavioural patterns and skills deficitstypically found in autistic children. Dr. Mulick, a clinical child psychologist andprofessor in the Departments of Psychology and Pediatrics at Ohio State University,provided the following definition of ABA:
Applied behavioral analysis, or ABA, teaches children, especially those with neurological conditions, small, measurable units of behaviour, and builds in the child more complex and socially useful skills (e.g. attention, compliance, self-monitoring); it also reduces in the child problematic behaviors (e.g. tantrums, withdrawal, and aggression).
These small, measurable units are taught, typically by providing an emphasized cue, although these are faded to be as normal as possible as soon as possible. If the child responds appropriately, then the child's response is reinforced by a consequence that has been determined to function well for the child (e.g., if a child likes music it could be by singing a song). Inappropriate responses specifically are not reinforced; contrary to the characterization by some critics of the ABA approach, children are not punished or disciplined for inappropriate responses as a primary strategy or intent of ABA; instead preference is typically used to guide the child to an appropriate response with sufficient environmental structure and behavioral support so as to prevent inappropriate responding of any kind altogether. Making the program fun for the child is a high priority in ABA and is the only way the program will be successful; indeed, the logic of behavior analysis clearly requires that new behavior cannot be elaborated from the child's existing repertoire by any means except through reinforcement.
The child's ABA program is entirely individualized to address that child's strengths and deficits. Data is kept which records the child's responses which are evaluated based upon objective criteria. If a program is not working, it is the responsibility of the behavior analyst to redesign the program until the child performs the skill reliably.
High priority is given in ABA to moving a child into a more typical environment. Accordingly, children practice their new skills in progressively less structured settings with fewer and fewer overt behavioral or environmental supports.
Intensive behavioral treatment is provided only until the child has the skills to function, benefit from, and not be damaged by more typical environments such as a regular or special education classroom. Once a child has the necessary attention, compliance, self-regulation, problem solving, information gathering and using, and social interaction skills to be in a more typical environment, he or she should be moved into that setting.
ABA most often represents the literal displacement of abnormal behavior and learning patterns by filling the child's time with rehabilitative activity and is rooted, in part, in the notion that the child cannot be doing two things at once. The child practices behavior that is incompatible with the child's usual maladaptive patterns and which is designed to increase the child's skills. Research and my own experience show that children (and all of us) quite literally become what they practice (which is part of the explanation as to why children still do better even when the intensive behavioral treatment is withdrawn). With time these children become more skilful and these skills become enjoyable to the child; they become maintainable by the actions of average people and typical experiences and familiar educational practices following successful therapy. None of this can happen for these children absent an antecedent and effective influence such as ABA.
[29] The petitioners contend that with Lovaas Autism Treatment, many autistic childrenmake exceptional gains in language, socialization and intellect. They say that LovaasAutism Treatment is a medically necessary service insofar as it significantly improves thecondition of these children. The Crown questions the proven efficacy of Lovaas AutismTreatment and rejects it as a "medically necessary service".
The Controversy surrounding Lovaas Autism Treatment:
[30] The Crown contends that the studies purporting to demonstrate the effectiveness ofLovaas Autism Treatment have serious flaws and that it is still an experimental therapy.Two related criticisms can be dealt with summarily.
[31] First, it is said, incorrectly, that Lovaas and his followers purport to claimthat Lovaas Autism Treatment "cures" autism. In fact, neither Lovaas nor thosewho support him have ever claimed that Lovaas therapy "cures" autism. Further,the fact that many (but not all) autistic children have benefited from Lovaas AutismTreatment and made substantial observable gains without being "cured" isirrefutable.
[32] Second, it is suggested that advocates of Lovaas Autism Treatment claim it is theonly appropriate treatment for all autistic children. The petitioners and their expertwitnesses do not make that suggestion. They recognize that, just as the condition ofautism spans a spectrum, so do the needs of the autistic children and their responses totreatment.
[33] Dr. Frank Gresham is a Professor and Director of the School Psychology Program inthe School of Education at U.C.L.A. He was retained by the Crown to provide an opinion"regarding the designation of the so-called 'Lovaas Method' of intensive discretetrial training as a medically necessary treatment for children diagnosed with ASDincluding Autism." (Discrete trial training refers to the process of repetitivelyteaching a child a skill and reinforcing the child's response.) Dr. Gresham expressed theview that, because intensive discrete trial training is not provided by doctors, it istherefore not a medically necessary treatment for autism. However, he readily concededthat, as he was not a physician, he was not qualified to offer that opinion. Further, heagreed that discrete trial training may be an important component in treatment of autisticchildren.
[34] Dr. Gresham expressed the following criticisms of Lovaas Autism Treatment:
... the prescription of this method as a medically necessary treatment to children with autism, on the basis of the scientific evidence presented by Lovaas and others in support of the treatment, is not recommended because its efficacy or effectiveness has not been empirically demonstrated and replicated using accepted standards of controlled scientific research. Moreover, when the large degree of heterogeneity of the autistic population is combined with the current state of the science around treatments for autism, it is at best misguided and unjustified to claim that one type of treatment is demonstrably more effective or medically necessary.
...
Contrary to claims made by some, there is no validated, replicated, or empirically documented "cure" for autism; however, the disorder can be managed effectively using a combination of behavioral and educational intervention programs.
[35] Although Dr. Gresham agreed that ABA is the treatment of choice for autism, hedescribed ABA as much broader than the intensive discrete trial training used in LovaasAutism Treatment. He also agreed that Lovaas Autism Treatment is appropriate for some, butnot all, children with autism or ASD. Although he characterized the findings of the YoungAutism Project as "very promising", he described the Lovaas study as"quasi-experimental" because it failed to randomly assign the children to thecontrol and experimental groups.
[36] Further, in Dr. Gresham's opinion, there has been insufficient research todetermine whether 40 hours a week of therapy is any more effective than less frequenttreatment of autistic children.
[37] The Crown referred extensively to literature criticizing the scientificmethodology of the Lovaas study. One criticism is that the children placed in theexperimental group may have had high IQs to begin with. Dr. McEachin flatly denies thatsuggestion. He testified that those children were fully representative of the spectrum ofautistic children in the general population and that their IQs were equivalent to those ofthe children in the control group.
[38] The most serious methodological criticisms of the Lovaas study focus on the lackof random assignment of the children into the two groups and the failure to replicate thatstudy. The scientific "gold standard" for experimental studies is randomassignment.
[39] The assignment of children to the experimental and control groups resulted from ascarcity of resources. The children referred to the study could not be assigned to theexperimental treatment unless there were enough therapists to administer the intensivetreatment. Accordingly, the assignment of children into either the experimental group orthe control group was based upon a single criterion: whether a therapist was available towork with the child in the experimental group at the time of his or her admission to theprogramme. While not random in a strictly scientific sense, Dr. McEachin stated that theassignment was not biased. Neither was it based on the child's IQ or the perceived ease ordifficulty of the child's outcome. Professor Donald Baer, a university professor atUniversity of Kansas has published extensively in the area of developmental psychology andbehavioural analysis. In one of his articles, entitled "Quasi-Random Assignment CanBe As Convincing as Random Assignment" in the American Journal on MentalRetardation, he expressed the opinion that the procedures used by the researchersaccomplished an essentially, or functionally, random assignment between the two groups.
[40] Dr. Tristam Smith, an Assistant Professor of Psychology at Washington StateUniversity and a Director of the Northwest Young Autism Project, listed 15 partialreplication sites in the U.S., England, Norway, and Iceland that are implementingtreatment based on the Lovaas model. The petitioners agree that there has not been anyscientific replication of the original Lovaas study. They submit that such replicationwould be difficult if not impossible. First, given the known outcome of the treatment, itwould be difficult to obtain the consent of well informed parents to place their childrenin the control group during the period of time when the window of opportunity will likelyclose. Second, at the time of the 1987 study, the therapists used contingent physicalaversives - slapping the child on the thigh and saying "no" loudly - in additionto using positive reinforcement techniques such as praising and hugging the child. Thereis general agreement that current treatment does not, and should not, include the use ofphysical aversives.
[41] Dr. Bassett is a Senior Medical Consultant with the B.C. Office of HealthTechnology Assessment Centre for Health Services and Policy Research ("BCHOTA")at U.B.C. BCHOTA is funded by the Provincial Government for the purpose of "promotingand encouraging the use of assessment research in policy, planning and utilizationdecisions by government, health care executives and practitioners." BCHOTA was askedby the Crown to provide "an assessment of the effectiveness evidence" regardingLovaas Autism Treatment for pre-school children with autism.
[42] Drs. Bassett, Green, and Kasanjian prepared the report entitled "Autism andLovaas treatment: A systematic review of effectiveness evidence" (the "BCHOTAReport"). The foreword to that report describes the methodology utilized in BCHOTAprojects generally. It states that "reports are reviewed internally, and then sentfor external review to experts from a variety of academic or clinical disciplines.Comments and suggestions are considered before a final document is produced." Thatstatement clearly implies that the BCHOTA Report, which was prepared for the purpose ofthis litigation, was subjected to external peer review before it was filed as an exhibitin these proceedings. However, Dr. Bassett testified that, as at the date of the hearing,the BCHOTA Report was out for external review and only one response had been received. Hedescribed the BCHOTA Report as the final document for these proceedings but not the finaldocument for the purpose of publication.
[43] Dr. Bassett and his colleagues did not consult with any psychiatrists orclinicians who are known to support Lovaas Autism Treatment. They spoke with only oneexternal medical consultant, Dr. Miller, who commented that the incidence of autism mightappear higher than it actually is because of a tendency to label a child with autism orASD to obtain access to services. On the basis of that single anecdotal comment, theBCHOTA Report states:
A more recent problem has emerged in relation to estimates of the incidence of autism. It appears that, at least in the BC context, problems with the diagnosis of autism may not simply be due to problems in the application of validated diagnostic criteria. The possibility arises that children with other pervasive development disorders may nonetheless be diagnosed with autism in order to gain access to services linked to that diagnosis.
[44] The Executive Summary of the BCHOTA Report begins with the following statement:
This systematic review examined whether early intensive behavioural therapy for children with autism results in normal functioning, or essentially a cure. The scientific validity of this curative claim is central both to legal proceedings brought on behalf of several children in British Columbia against the Province seeking an intensive behavioural program; and to cost-benefit analyses and clinical guidelines used for planning autism treatment programs.
[45] The BCHOTA Report reiterates that Drs. Lovaas and McEachin claim that theirtreatment "normalized or cured children with autism." As noted earlier, neitherDr. Lovaas nor Dr. McEachin -- nor the petitioners -- assert such a claim.
[46] The BCHOTA Report criticizes the Lovaas study because it used a small number ofchildren and further suggests that the reported findings of benefits may have beenachieved by assembling a high-functioning group of autistic children. Dr. Bassett wasunable to suggest how one would assemble a high functioning group and agreed, incross-examination, that he was unaware of any evidence to contradict Dr. Baer's opinionthat such a selection could not be made.
[47] While the BCHOTA Report criticizes the methodology of the Lovaas and McEachinstudies and the absence of replication at length, it adds little if anything to theexisting debate in the scientific journals on the subject.
[48] The BCHOTA Report exhibits an obvious bias towards supporting the Crown's positionin this litigation. That detracts significantly from its usefulness.
[49] The BCHOTA Report does acknowledge the fact that behaviour therapy, or ABA, isaccepted as a benefit to children with autism. Its authors agree that early interventionwith behavioural treatment can help to alleviate autistic symptoms in many if not mostautistic children. Dr. Bassett testified that he was unaware of any government-fundedprogramme in B.C. that provided behavioural therapy.
[50] The parties adduced the evidence of several expert witnesses who were advocatesof, or detractors from, Lovaas Autism Treatment. However, as I have concluded that theCourt cannot direct the Crown to specifically provide Lovaas Autism Treatment regardlessof the outcome of these proceedings, it is unnecessary to descend further into the ongoingdebate that appears to have occupied several thousand pages of print in medical andscientific journals.
The points of agreement with respect to treating autistic children:
[51] There is no dispute that the autistic spectrum of mild to severe disability is aneurological disorder with a very poor prognosis historically. Autism is a mental disorderand early diagnosis and treatment are essential. There is a window of opportunity duringwhich it is possible to treat autism and obtain, in some cases, significant results. Thelater the intervention, the poorer the prognosis.
[52] Current research has established, with some certainty, the efficacy of earlyintervention in assisting many children to achieve significant social and educationalgains. The expert witnesses agree that the most effective behavioural therapies are thosebased on principles of ABA. There are no effective competing treatments. As Dr. Greshamstated, "there is no question that ABA is the treatment of choice for childrenpresenting with autistic disorder based on over 35 years of research in the field."He emphasized the fact that although replication of the Lovaas study was necessary,treatment should not be delayed awaiting the outcome.
What treatment is presently provided for autistic children?
[53] The Crown says that numerous programmes and services provide assistance forfamilies of children with autism or ASD: infant development, supported child care, at-homerespite, respite relief, contracted respite, occupational therapy, physical therapy,speech therapy/language therapy, homemaker and home support services, hearing services,child care workers and specific behavioral support. It is immediately obvious that none ofthose services except the last, even attempt to treat the condition of autism. Manyof the enumerated programmes fall within the rubric of respite and home-care services orcounselling for parents to help them cope with the daily ordeal of managing an autisticchild.
[54] Currently, the Ministry of Health provides no treatment for autism althoughdiagnosis of the disability comes under its jurisdiction. The adult petitioners describewaiting periods of up to two and a half years to obtain a referral to Sunny Hill Hospitalfor Children and a diagnosis.
[55] Until they are of school age, autistic children are not eligible for anyeducational services provided under the School Act, R.S.B.C.1996, c. 412. All services for pre-school children with special needs come within thejurisdiction of the MCF. As the petitioners point out, MCF operates on a social servicesmodel that has neither the mandate nor the expertise to deliver treatment. The Crowndescribes MCF's primary programme areas as child protection and guardianship, child familyand community services, adult services and regional support. Many of the programmesavailable under the MCF are subject to income testing.
[56] The Crown says that MCF serves approximately 12,000 children with special needs,of whom 1,273 are children and youth with autism. That Ministry's 1999/2000 budget forchildren and youth with special needs and their families was $61,910,000, with anadditional $28,015,498 for special needs day care.
[57] MCF provides services to autistic children through contracted agencies, some ofwhich apparently employ some behavioural analysis techniques. Generally, the focus is onteaching families those techniques to help them work with their children. Those agenciesinclude CBI Consultants, Laurel Group, Gateway, Giant Steps West Therapeutic Centre forChildren ("Giant Steps"), and some smaller contractors throughout the province.
[58] Dr. Thomas Barnett, who is the child psychiatry representative on the B.C.Psychiatric Association, described the transfer of child and youth mental healthprogrammes from MOH to MCF in 1997 as "an expensive experiment gone wrong." Atthe community level, he sees no benefits resulting from the transfer, in large partbecause the individuals who make policy within MCF and determine what services areavailable for autistic children lack training in psychiatry, psychology or behaviouralintervention.
[59] Dr. Davies accurately described the fate of autistic children in B.C. whosefamilies seek government services. They face long delays before they are diagnosed. Theymay then be referred to agencies with long wait lists that, when accessed, generallyprovide services that are supportive rather than therapeutic.
[60] Dr. Davies described the LEAP Program in Ladner as the only provincially fundedbehaviourally based early intervention programme. It is loosely modelled after a programmecommenced by Dr. Strain in the U.S. It has spaces for only six autistic children and,naturally, a long waiting list. Dr. Davies was initially involved in the creation of theB.C. LEAP programme but left after a few years, frustrated by the lack of resources.
[61] Dr. Davies is presently associated with the South Fraser Child Development Centre.He says that centre, as well as Laurel Group, CBI Consultants (which was formed by a groupof former employees of Laurel Group), and Gateway, base their interventions on methodsderived from credible research. However, in each case, the services provided are notintensive; they are not delivered early enough in the child's development; and they arerarely of sufficient duration to maximize the child's development. Those organizationstypically provide consultation services to the parents rather than direct therapy to thechild. The frequency of consultation may range from less than an hour to a few hours aweek. Dr. Davies describes these interventions as "minimal treatment/minimaloutcome." Several parents described dissatisfaction with CBI Consultants and LaurelGroup, citing long waiting lists and ineffective treatment that included little, if any,one-to-one therapy.
[62] Dr. de Levie, who has served as a pediatrician to Laurel Group in the past,described the treatment provided by Laurel Group and CBI Consultants as much less intenseand effective than Lovaas Autism Treatment.
[63] Gateway's stated objective is "to assist families in their attempts tounderstand and help their child with autism." Its focus is not on treatment, but onassisting families to develop "a behavioural support plan".
[64] Giant Steps has a day care licence and provides services for approximately 15children aged 5-12. It is partially funded by MCF and MOE. It offers "speech andoccupational therapy, music pre-academic programmes, self-care skill training andcommunity experiences." Dr. Jill Calder, a medical doctor and mother of an autisticchild, described the main component of the treatment offered by Giant Steps as "asensory-integrative approach." Wanda Bent, the Programme Director for Giant Steps,agreed that the programme includes no applied behavioural therapy.
[65] Dr. Gresham agreed that facilitated communication, auditory integration training,and sensory integration training are controversial treatments that have little or noempirical support and show no benefit to autistic children. He also agreed thatineffective treatments for autism may be harmful if they supplant effective treatmentsthat might have been utilized. He expressed the opinion that programmes such as LEAP werenot well established and they were probably not efficacious treatments for autism.
[66] It is ironic that the very limited treatment services provided by the Crown notonly fail to meet the gold standard of scientific methodology; they are positivelydiscredited by one of the Crown's own expert witnesses.
[67] Dr. Davies was critical of the Crown's failure to provide treatment to autisticchildren:
Providing a number of supportive services to a disorder that with treatment we know that half could recover, is tantamount to withholding treatment and continuing with support and respite services for AIDS patients after a treatment that can cure half of them has been discovered.
[68] In May 1999, MCF announced an Autism Action Plan and an Autism ActionImplementation Plan, which acknowledged the importance of early intervention, diagnosisand assessment. Many parents had been initially optimistic that their autistic childrenwould obtain treatment. Their hopes were dashed when they learned of two of the plan'sstated constraints: (1) there is no new funding available; and (2) services for autisticchildren must be balanced with services to children with other special needs. While theplan speaks generally of "early intervention and treatment," it makes no mentionof any form of early ABA intervention or comparable treatment. As a result of thesefunding and policy constraints and the lack of any concrete plan to provide intensiveearly intervention treatment, the plan offers little hope for future treatment and no hopeat all for families whose children are presently young enough to benefit from ABA therapy.
State-supported intensive behavioural intervention therapy in other jurisdictions:
[69] Several jurisdictions in Canada and elsewhere have instituted intensive earlyintervention programmes for autistic children. It appears that government action hasresulted from intense lobbying by parental advocacy groups or litigation. Dr. Greshamestimated that about 75% of parents of autistic children who have actively advocated forstate-supported Lovaas therapy in the U.S. have been successful.
[70] In C.R. v. Alberta (Director of Child Welfare) (1996), 43 Alta. L.R.(3d) 179 (Q.B.), the parents of a 6-year-old autistic boy appealed a decision denyingtheir request for funding for their child's Lovaas Autism Treatment, which they had begunafter his diagnosis at age 5. Deyell J. allowed the appeal, ordering the Director of ChildWelfare to enter into an agreement to fund 90% of the cost of the Lovaas Autism Treatmentand to reimburse 90% of the costs already incurred by the parents.
[71] However, in D.J.N. v. Alberta (Child Welfare Appeal Panel), [1999]A.J. No. 798, (Q.L.) (Q.B.), the parents of an autistic child appealed a decision of theChild Welfare Appeal Panel that had refused to provide financial assistance for certainprogrammes. Rawlins J. held that the programmes requested were within the exclusivejurisdiction of the School Act and not the Child Welfare Act.
[72] Rawlins J. also held that the courts should not interfere with the exercise ofdiscretion by the director in deciding whether or not to fund particular services for aparticular child. She commented that Deyell J. ought not to have taken it upon himself in C.R.,supra, to order that a certain percentage of the services be funded by the Director.That issue should have been the subject of a separate determination on the merits.
[73] Several appeals for Lovaas Autism Treatment followed the decision in C.R. Asa result, the Alberta government instituted a pilot project for treatment of 15 childrenwith a diagnosis of autism or ASD. The project utilizes ABA intervention with a speech andlanguage component, and occupational therapy and physiotherapy, as appropriate.
[74] Subsequently, Alberta introduced a much broader interim policy on May 27, 1999.The Child and Family Services Authority may now provide funding ranging from $45,000 to$60,000 per child for in-home, early intensive behavioral intervention ("IBI")programmes for pre-school children aged 2 to 5 with autism or ASD. (The terms IBI and ABAappear to be used interchangeably.)
[75] To be eligible for IBI treatment, a child must be diagnosed as autistic by amedical practitioner in Alberta. A child may access an IBI programme for a maximum of 40hours a week, for up to three years. The programme is home-based and its stated intent is"to improve the child's communication, academic, social and behavioural skills to alevel where he/she is able to transition to the community and educational system withoutIBI programming or intensive support."
[76] The interim policy and guidelines of the Alberta policy describe who is eligiblefor the treatment and the qualifications for those who provide IBI treatment. While theprocedures are to be developed in collaboration with health and educational departments ofgovernment, the IBI services are funded by the Ministry of Children's Services and notthrough medicare.
[77] In the spring of 1999, the government of Ontario announced a major initiative tofund intensive behavioural intervention for children with autism aged 2 to 5. The Ontarioproject recognizes that many children can make considerable gains with IBI in their earlyyears if services (1) begin early, (2) are intensive, and (3) are provided by well-trainedtherapists.
[78] An informational brochure distributed by the Office of Integrated Services forChildren of the Ministry of Community and Social Services describes the proposeddevelopment of individualized service plans to deliver therapy services to autisticchildren and their families and to develop "much needed expertise" in intensiveearly intervention services, "filling a gap in service identified by both parents andprofessionals." Parents will have the option of engaging in private therapyarrangements funded in accordance with governmental guidelines.
[79] Previously, IBI therapy was not available through publicly funded agencies inOntario. Families did have access to other services such as respite, infant development,child care, speech and language, occupational therapy and recreational services. Whilethose services provide families with relief and support, and provide children withtreatment for particular problems (e.g. speech and language), they did not include IBIbefore the 1999 initiative. The Ontario government recognized that families who had beenfunding IBI themselves incurred considerable expense and had great difficulty inrecruiting trained qualified therapists.
[80] The Ontario programme specifically excludes several unproven or experimentalapproaches, including sensory integration therapy.
[81] In Prince Edward Island, the family of a child who is diagnosed with autismreceives provincial funding for up to 20 hours per week of home-based Lovaas AutismTreatment. Governmental pilot projects currently underway in Newfoundland and Manitobaalso deliver Lovaas Autism Treatment or ABA.
[82] In the United States, several jurisdictions provide Lovaas-based Autism Treatment;some funded by Departments of Education and some funded by Medicaid programmes. Two recentpublications, the New York State Department Guidelines and the 1999 U.S. Report of theSurgeon General on Mental Health, recognize early IBI as the treatment of choice.
[83] Litigation in England has also resulted in judicial direction to local councils tofund Lovaas Autism Treatment.
Has there been a breach of the petitioners' Charter rights?
[84] Section 7 of the Charter states:
Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.
[85] Section 15(1) of the Charter enshrines the principles of equality:
Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
[86] McIntyre J. described "discrimination" succinctly in Andrews v.the Law Society, [1989] 1 S.C.R. 143 at 174-5:
... I would say then that discrimination may be described as a distinction, whether intentional or not but based on grounds relating to personal characteristics of the individual or group, which has the effect of imposing burdens, obligations, or disadvantages on such individual or group not imposed on others, or which withholds or limits access to opportunities, benefits, and advantages available to other members of society. Distinctions based on personal characteristics attributed to an individual solely on the basis of association with a group will rarely escape the charge of discrimination, while those based on an individual's merits and capacities will rarely be so classed.
The Legislative Framework
[87] The primary relief sought by the petitioners is an order that the Medical ServicesCommission ("MSC") and MOH provide Lovaas Autism Treatment as a medical benefitunder the province's medicare scheme. They seek to have the Minister of Health establish atariff for the payment of Lovaas Autism Treatment by approved non-medical therapists.Alternatively, they seek orders compelling either the Minister of Education or theMinister of Children and Families to fund that treatment.
[88] As I consider the issue to be primarily a health issue, I propose to set out onlythe legislative provisions that relate to the delivery of medical services. I note,parenthetically, that I do not suggest the Crown is precluded from delivering treatmentthrough a department of government other than MOH.
[89] Section 3 of the Canada Health Act, R.S.C. 1985, Chap. C-6,describes the primary objective of Canadian health care policy as protecting, promotingand restoring the physical and mental well-being of residents of Canada and facilitatingreasonable access to health services without financial or other barriers. Pursuant tosection 5 of that Act, the federal government makes cash contributions towards thefunding of B.C.'s health care system. Those cash contributions are contingent onprovincial compliance with the criteria described in sections 8 to 12 of the Actrespecting (a) public administration; (b) comprehensiveness; (c) universality; (d)portability; and (e) accessibility.
[90] The preamble to the Medicare Protection Act, R.S.B.C. 1996, c. 286(the "Act") states that "the people and government of BritishColumbia believe that medicare is one of the defining features of Canadiannationhood", and "wish to confirm and entrench universality, comprehensiveness,accessibility, portability and public administration as the guiding principles of thehealth care system ... and are committed to the preservation of these principles inperpetuity". The preamble also refers to the need for "judicious use" ofmedical services in order to maintain a fiscally sustainable health care system for futuregenerations. Finally, the preamble emphasizes the fundamental value that an individual'saccess to necessary medical care must be based solely on need and not the individual'sability to pay.
[91] Section 2 specifically articulates the purpose of the Act: to"preserve a publicly managed and fiscally sustainable health care system for BritishColumbia in which access to necessary medical care is based on need and not anindividual's ability to pay."
[92] Section 3(3) of the Act describes the function of MSC as thefacilitation of "reasonable access, throughout British Columbia, to quality medicalcare, health care and diagnostic facility services for residents of British Columbia underthe Medical Services Plan."
[93] Section 5(1)(j) of the Act, gives MSC authority to determine whether aservice is a benefit or whether any matter is related to the rendering of a benefit. MSCcan also determine whether a person is a medical practitioner or a health carepractitioner (S. 5(1)(h)).
[94] Section 5(2) requires MSC to act in a manner that satisfies the criteria insection 7 of the Canada Health Act in exercising its responsibilitiesand powers under s. 5(1).
[95] "Benefits" are defined as medically required services rendered by amedical practitioner who is enrolled under s. 13, as well as:
(b) required services prescribed as benefits under section 51 and rendered by a health care practitioner who is enrolled under section 13....
[96] "Health care practitioners" are defined to include chiropractors,dentists, naturopathic physicians, optometrists, podiatrists, or:
(f) a member of a health care profession or occupation that may be prescribed;
[emphasis added]
[97] B.C. Regulation 426/97 to the Act effective December 18, 1997prescribes physical therapists, massage therapists, and nurses (for some purposes) ashealth care practitioners.
[98] Additionally, the Ministry of Health Act, R.S.B.C. 1996, c. 301,section 3, provides that:
s.3 The minister may, for the purposes of any Act under the minister's administration, enter into agreements with any person.
[99] The petitioners submit that the relevant legislation clearly provides theframework for the provision of treatment to autistic children who suffer from aneurological disorder causing severe impairment if left untreated. They suggest there isconsiderable flexibility within the Act to prescribe services that may be coveredunder the Medical Services Plan
[100] The Crown's vigorous opposition to the petitioners' submissions arises from itsnarrow interpretation of the legislative provisions which ignores the specific ability ofMSC to prescribe members of "an occupation" as health care practitioners. TheCrown asserts that, because Lovaas Autism Treatment, ABA or IBI are not provided by healthservice practitioners, they are not medically necessary services and hence do not qualifyas benefits provided under the medicare scheme.
[101] The Crown points out that the medicare scheme does not guarantee funding for allhealth services and no person in B.C. receives 100% coverage for all of his or her healthcare needs. They say that the infant petitioners receive the same services under theMedical Services Plan as all other British Columbians.
[102] The Crown's narrow definition of a "medically necessary service" as onethat must be provided by a health care practitioner presently scheduled by the MSCprecludes delivery of Lovaas Autism Treatment or ABA or any intensive behavioural therapyas a benefit. However, as Dr. Baer suggests, a more accurate definition of medicaltreatment is whatever cures or ameliorates illness. On the basis of the expert evidenceintroduced by both parties, I find that early intensive behavioural treatment is amedically necessary service.
[103] Further, I consider it significant that the definition of "health carepractitioners" in the Act expressly contemplates persons who belong toan "occupation" other than a health care profession. Accordingly, it wouldappear that behavioural therapists could be scheduled as health care professionals.
[104] Somewhat surprisingly, the Crown's insistence on a restrictive definition of"medical service" for the treatment of children suffering from the mentaldisability of autism seems incompatible with MOH's recent policy relating to the treatmentof adults with mental disorders.
[105] The 1998 B.C. Mental Health Care Plan (the "Mental Health Care Plan")prepared by MOH sets out the principles of mental health care for British Columbians. Thestated purpose of the Mental Health Care Plan is to assist health authorities to developmental health care systems "which would help people with mental illness and theirsupport networks access the services they require to restore and maintain optimalfunctioning and health." Core mental health services include preventative measuressuch as early identification and psychosocial rehabilitation.
[106] In the Mental Health Care Plan, MOH sets out a Mental Health Mandate thatincludes "core mental health services" such as residential services andassistance in accessing housing, income assistance and rehabilitation services andbenefits. Those services would seem to fall farther down the spectrum of "medicalservices" than intensive behavioural therapy.
[107] MOH proposes to deliver treatment based on a multi-disciplinary model of care"within a bio-psycho-social service model." Multidisciplinary care teams willinclude physicians, nurses, social workers, occupational therapists, dieticians, andpsychologists. It is obvious that many of the members of those care teams will not bescheduled health care practitioners.
[108] The Mental Health Care Plan also recommends the encouragement of early andeffective treatment practices and the evaluation of innovative therapies to ensure thepromotion of advances in mental health care. Given that autism is defined in DSM-IV as amental disorder, it is difficult to understand the reluctance of the government to provideABA treatment that has been widely endorsed by medical practitioners and academicsthroughout the world.
[109] Canadians are entitled to expect medical treatment for their physical and mentaldiseases. This is so, even where a disease cannot be "cured." I conclude thatthe legislative framework does not preclude the delivery of early intensive ABA treatmentto autistic children, where appropriate, within B.C.'s medicare scheme.
[110] The remaining issue is whether the Crown's failure to provide effective treatmentto the infant petitioners violates their Charter rights.
Section 7 analysis:
[111] It is unnecessary to consider the petitioners' arguments relating to s. 7 of the Charter.
Section 15 analysis:
[112] The jurisprudence since Andrews, supra, has refined theanalysis of equality claims under s. 15 of the Charter. For some years, themembers of the Supreme Court of Canada expressed divergent views on the appropriateresolution of equality issues. In Law v. Canada (Minister of Employment andImmigration), [1999] 1 S.C.R. 497, a case dealing with age discrimination, theCourt established a unified framework for analysis. In Granovsky v. Canada (Ministerof Employment and Immigration), 2000 SCC 28, the mostrecent case dealing with s. 15 equality rights, the Court has cemented that common ground,articulating a three step test for determining whether a claimant's s. 15 rights have beeninfringed. Those steps may be summarized as follows:
(1) Does the impugned law draw a formal distinction between the claimant and others on the basis of one or more personal characteristics or fail to take into account the claimant's already disadvantaged position within Canadian society resulting in substantively different treatment between the claimant and others on the basis of one or more personal characteristics?
(2) Was the claimant subject to differential treatment on the basis of one or more of the enumerated and analogous grounds?
(3) Does the differential treatment discriminate in a substantive sense, bringing into play the purpose of subsection 15(1) of the Charter?
[113] It is true that in Law, the petitioner's claim of discriminationwas rejected, even though she had established a legislative distinction based on age, andin Granovsky, the petitioner's claim of discrimination was rejected, eventhough he had established a legislative distinction based on disability. However, I amunable to agree with the Crown that Granovsky constitutes a retrenchment bythe Court from its earlier s. 15 pronouncements.
[114] In Granovsky, Binnie J. for the Court described the focus of the s.15 analysis in disability claims at para. 26:
The true focus of the s. 15(1) disability analysis is not on the impairment as such, nor even any associated functional limitations, but is on the problematic response of the state to either or both of these circumstances. It is the state action that stigmatizes the impairment, or which attributes false or exaggerated importance to the functional limitations (if any), or which fails to take into account the "large remedial component" (Andrews v. Law Society of British Columbia, [cite omitted] at p. 171) or "ameliorative purpose" of s. 15(1) (Eaton v. Brant County Board of Education, [1997] 1 S.C.R. 241, at para. 66, Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624, at para. 65; Law, supra, at para. 72) that creates the legally relevant human rights dimension to what might otherwise be a straightforward biomedical condition.
[115] Binnie J. emphasized, at para. 33, that s. 15 addresses the state's response tothe disability, rather than the disability itself:
The Charter is not a magic wand that can eliminate physical or mental impairments, nor is it expected to create the illusion of doing so. Nor can it alleviate or eliminate the functional limitations truly created by the impairment. What s. 15 of the Charter can do, and it is a role of immense importance, is address the way in which the state responds to people with disabilities. Section 15(1) ensures that governments may not, intentionally or through failure of appropriate accommodation, stigmatize the underlying physical or mental impairment, or attribute functional limitations to the individual that the underlying physical or mental impairment does not entail, or fail to recognize the added burdens which persons with disabilities may encounter in achieving self-fulfilment in a world relentlessly oriented to the able-bodied.
[116] And again, at para. 80:
The "purposive" interpretation of s. 15 puts the focus squarely on the third aspect of disabilities, namely on the state's response to an individual's physical or mental impairment. If the state's response were, intentionally or through effects produced by oversight, to stigmatize the underlying physical or mental impairment, or to attribute functional limitations to the appellant that his underlying physical or mental impairment did not warrant, or to fail to recognize the added burdens which persons with temporary disabilities may encounter in achieving self-fulfilment, or otherwise to misuse the impairment or its consequences in a discriminatory fashion that engages the purpose of s. 15, an infringement of equality rights would be established.
[117] In Granovsky, the claimant was unable to satisfy the third part ofthe test. He suffered from a temporarily disabling condition of back pain. As a group,people with back pain have little in common and the group could not be compared to othergroups that have attracted s. 15 protection. The exclusion of a more advantaged group (thetemporarily disabled) from a benefit extended to less advantaged individuals (thepermanently disabled) did not offend the Charter. The exclusion wasconsistent with the ameliorative purpose of the relevant legislation.
[118] In Cameron v. Attorney General of Nova Scotia (1999), 177 D.L.R. (4th)611 (N.S.C.A.), the claimants were seeking medically recommended treatments that wouldameliorate their condition of infertility and promote, if not attain, equality with thefertile. Chipman J.A., for the majority, stated at p. 654-5:
The government has failed to ameliorate the position of the infertile compared with fertile people. They are unequally treated because they are denied a medically recommended treatment appropriate for them.
[119] The majority of the Court concluded that the government's failure to fund invitro fertilization violated the petitioners' s. 15 rights but that the policy wasjustified under s. 1. (An application for leave to appeal to the Supreme Court of Canadawas dismissed without reasons on June 29, 2000.)
[120] In Eaton v. County Board of Education, [1997] 1S.C.R. 241, the Court considered a decision of the Ontario Special EducationTribunal confirming the placement of a severely disabled child in a special educationclass contrary to the wishes of her parents. The Court undertook a useful analysis of theapplication of section 15 to disability claims, although it concluded, on the facts ofthat case, that there had been no violation of the child' s equality rights.
[121] Sopinka J. noted, at para. 66, that the purpose of s. 15(1) is not only toprevent discrimination through the attribution of stereotypical characteristics toindividuals, "but also to ameliorate the position of groups within Canadian societywho have suffered disadvantage by exclusion from mainstream society as has been the casewith disabled persons."
[122] At para. 67, Sopinka J. also described eloquently the essence of thediscrimination against the physically or mentally disabled as the government's failure tomake reasonable accommodation for them:
The principal object of certain of the prohibited grounds is the elimination of discrimination by the attribution of untrue characteristics based on stereotypical attitudes relating to immutable conditions such as race or sex. In the case of disability, this is one of the objectives. The other equally important objective seeks to take into account the true characteristics of this group which act as headwinds to the enjoyment of society's benefits and to accommodate them. Exclusion from the mainstream of society results from the construction of a society based solely on "mainstream" attributes to which disabled persons will never be able to gain access. Whether it is the impossibility of success at a written test for a blind person, or the need for ramp access to a library, the discrimination does not lie on the attribution of untrue characteristics to the disabled individual. The blind person cannot see and the person in a wheelchair needs a ramp. Rather, it is the failure to make reasonable accommodation, to fine-tune society so that its structures and assumptions do not result in the relegation and banishment of disabled persons from participation, which results in discrimination against them. The discrimination inquiry which uses "the attribution of stereotypical characteristics" reasoning as commonly understood is simply inappropriate here. It may be seen rather as a case of reverse stereotyping which, by not allowing for the condition of a disabled individual, ignores his or her disability and forces the individual to sink or swim within the mainstream environment. It is recognition of the actual characteristics, and reasonable accommodation of these characteristics which is the central purpose of s.15(1) in relation to disability.
[123] In Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R.624, the Court ordered the British Columbia government to fund deaf interpretationservices, where appropriate, to ensure that the deaf claimants had equal access to healthcare. Because of their physical disability, deaf persons were unable to communicate withtheir doctors and thus unable to receive universally available health benefits. The Courtheld that the government had violated s. 15(1) by failing to recognize the added burdensfaced by deaf persons in accessing the core medical services provided to every other user.That failure to accommodate deaf persons constituted adverse effects discrimination.
[124] It is clear that discrimination may arise from the failure of legislation to takeinto account the need for accommodation of a particular group in order to ensure access tothe same benefits received by others. In Eaton, supra, theCourt emphasized that the legislation's failure to take into account the truecharacteristics of a disadvantaged person or group triggers s. 15. Similarly, in Eldridgeand Cameron, supra, the Charter was held to apply togovernment inaction that had the effect of discrimination as well as actual discriminatoryaction.
[125] The petitioners complain that by failing to fund effective treatment for autism,the government has misinterpreted its legislative mandate to provide health care services.They say that failure to fund Lovaas Autism Treatment neglects to take into account thedisadvantaged position of autistic children and results in substantively differenttreatment, placing an additional burden on them which is not suffered by non-autisticchildren or mentally disordered adults.
[126] The purpose of the legislation is relevant to a determination of whether Charterrights have been breached. Here funding appropriate treatment for autism is entirelyconsistent with the ameliorative purpose of the heath legislation. The Medical ServicesPlan is designed to assist people with health care needs. As stated in Eldridge,supra, the values of the health care system are to promote health, prevention andtreatment of illness and disease and to realize those values through a publicly fundedhealth care system. Having created a universal medicare system of health benefits, thegovernment is prohibited from conferring those benefits in a discriminatory manner. In thecase of children with autism, their primary health care need is, where indicated, earlyintensive behavioural intervention. In failing to make appropriate accommodation for theirhealth care needs, the Crown has discriminated against them. It is not the medicarelegislation that is discriminatory or defective but the Crown's overly narrowinterpretation of it.
[127] The absence of treatment programmes for autistic children must consciously orunconsciously be based on the premise that one cannot effectively treat autistic children.The extensive evidence in this case shows that assumption to be a misconceived stereotype.The stigma attached to mental illness is historical and widespread. Only effectivetreatment can reduce the marginalization of autistic children and their exclusion from themainstream of society.
[128] The Crown seeks to justify its discretion in allocating expenditure amongchildren with special needs by comparing autistic children with other groups of disabledchildren or comparing differing degrees of disability. That approach, which pits groups ofdisadvantaged people against each other to determine who is more disadvantaged, wasexpressly disavowed in Granovsky, at para. 67.
[129] In this case, the appropriate comparative groups are non-autistic children ormentally disabled adults. In comparison to both non-autistic children and mentallydisabled adults, the infant petitioners are subject to differential treatment based on theenumerated ground of mental disability. Indeed, as children and mentally disabled, theyare doubly vulnerable.
[130] The petitioners argue that they are victims of adverse affects discrimination aswere the deaf petitioners in Eldridge, supra. In that case, theSupreme Court of Canada noted that the medicare system applied equally to the deaf andhearing population. However, because the deaf could not access that system, they sufferedfrom adverse effects discrimination. The adverse effects did not arise from a burdenimposed on the deaf petitioners but from the government's failure to ensure that deafpersons benefited equally from a service offered to everyone.
[131] Here, the petitioners say that because one of the indicia of autism is aninability to communicate, the autistic children are also unable to access health,education and other services available to everyone else. They require appropriateaccommodation (by behavioural therapists), in order to communicate and access thegovernment services available to the rest of society.
[132] In my opinion, there is no need to consider adverse effects discrimination. Thepetitioners are the victims of the government's failure to accommodate them by failing toprovide treatment to ameliorate their mental disability. That failure constitutes directdiscrimination. Further, the petitioners' disadvantaged position stems from thegovernment's failure to provide effective health treatment to them, not from the fact thattheir autistic condition is characterized, in part, by an inability to communicateeffectively or at all.
[133] Counsel for the Crown seek to distinguish Eldridge on the basisthat the deaf claimants were denied equal access to core medical services solely becauseof their inability to communicate. The claimants were not seeking treatment for theircondition or "extra" services. Counsel point out that, in contrast, autisticchildren have access to fully funded core medical services in the event of illness,disease, or accident.
[134] As one example, the Crown submits that if an autistic child gets cancer, he orshe will receive treatment for cancer. That justification is misguided as well asunfortunate. It ignores the fact that autism is a medical disability just as cancer is andthat both require treatment. As the petitioners point out, autism is a disability sosevere and comprehensive that it affects all aspects of their lives. Their core medicalneed is for treatment that will permit them to break out of their isolation. They requiretreatment for that condition, as well as any other conditions that they may be unfortunateenough to incur additionally.
[135] Autism is the disorder or illness that requires treatment. It is of littleassistance to reassure people suffering from debilitating illnesses that although thestate will not provide treatment for that illness, should they break a leg or developpneumonia, they will be treated for those conditions. While one of the effects of autismmay be an inability to communicate and obtain government services which are universallyavailable, the gravamen of the government's omission is its failure to provide treatmentfor the underlying disability, not its willingness to ensure access to other benefits.
[136] Similarly, the fact that autism can't be "cured" is no reason towithhold treatment. Often cancer cannot be cured but it is unthinkable that treatmentdesigned to ameliorate or delay its effects would not be forthcoming. Further, the Crown'sargument that behavioural therapies will not assist all autistic children toovercome their functional limitations does not justify a failure to provide thosetherapies to any of them.
[137] Depression is a mental disability on a spectrum from mildly impairing to lifethreatening. On diagnosis and referral by a physician to a psychiatrist, treatment isprovided through medicare. Numerous other conditions that presently defy a"cure", such as cerebral palsy, are provided with treatment to ameliorate theireffects.
[138] The Crown's submissions in this case are reminiscent of their earlier argumentsin Eldridge. There counsel for the Crown argued that deafness was acondition of the claimants that had nothing to do with the health scheme and that, inrefusing sign language interpreters, the health plan treated the deaf and non-deaf on anequal footing. In Granovsky, Binnie J. noted that submission had failed in Eldridge,together with the Crown's proposition that government was not required to amelioratedisadvantages it had not helped to create or exacerbate.
[139] I find that the petitioners have established that their s. 15 rights have beeninfringed on the basis of the test set out in Law and Granovsky.The Crown has failed to take into account and accommodate the infant petitioners' alreadydisadvantaged position, resulting in differential treatment. That unequal treatment, whichis based on the enumerated ground of mental disability, is discriminatory. Here the onlyaccommodation possible is funding for effective treatment.
Can the Crown's failure to provide treatment be justified under s. 1 of the Charter?
[140] The Crown submits that a violation of s. 15(1) is, in the context of this case,justifiable under s. 1 of the Charter. That section provides as follows:
s.1 The [Charter] guarantees the rights and freedoms set out in it subject only to such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society.
[141] The onus of proving that a limit on a right or freedom guaranteed by the Charteris "prescribed by law", is "reasonable", and demonstrably justified ina "free and democratic society" rests on the Crown: R. v. Oakes,[1996] 1 S.C.R. 103.
[142] In Oakes, the Court set out the analytical framework for s. 1,which was succinctly restated by Iacobucci J. in Egan v. Canada, [1995] 2S.C.R. 5i3 at para. 182:
First, the objective of the legislation must be pressing and substantial. Second, the means chosen to attain this legislative end must be reasonable and demonstrably justifiable in a free and democratic society. In order to satisfy the second requirement, three criteria must be satisfied: (1) the rights violated must be rationally connected to the aim of the legislation; (2) the impugned provision must minimally impair the Charter guarantee; and (3) there must be a proportionality between the effect of the measure and its objective so that the attainment of the legislative goal is not outweighed by the abridgement of the right. In all s. 1 cases the burden is on the government to show on a balance of probabilities that the violation is justifiable.
[143] The Crown is entitled to judicial deference in performing its difficult task ofmaking policy choices and allocating finite resources among myriad vulnerable groups.However, in M. v. H., [1999] 2 S.C.R. 3 at para. 78, IacobucciJ. emphasized that deference "is not a kind of threshold inquiry under s. 1" andmade the following observation:
As a general matter, the role of the legislature demands deference from the courts to those types of policy decisions that the legislature is best placed to make. The simple or general claim that the infringement of a right is justified under s. 1 is not such a decision. As Cory J. stated in Vriend, supra, at para. 54 "The notion of judicial deference to legislative choices should not ... be used to completely immunize certain kinds of legislative decisions from Charter scrutiny.
[144] In B.C. (Superintendent of Motor Vehicles) v. B.C. (Council of HumanRights), [1999] 3 S.C.R. 868, the petitioner successfully challengeda policy of the Superintendent which prohibited persons with homonymous hemiaopia("H.H.") (a condition which eliminates peripheral vision) from holding adriver's licence, regardless how they may have been able to compensate for theirdisability. McLachlin J. (as she then was) responded to the government's argument that itwould be too expensive to assess people with H.H. at para. 41:
While in some circumstances excessive cost may justify a refusal to accommodate those with disabilities, one must be wary of putting too low a value on accommodating the disabled. It is all too easy to cite increased cost as a reason for refusing to accord the disabled equal treatment. This Court rejected cost-based arguments in Eldridge v. British Columbia (Attorney General), [cite omitted], paras. 87-94, a case where the cost of accommodation was shown to be modest. I do not assert that cost is always irrelevant to accommodation. I do assert, however, that impressionistic evidence of increased expense will not generally suffice. Government agencies perform many expensive services for the public that they serve.
[145] The Crown makes the irrefragable statement that its health care resources arelimited and argues that the effect of funding treatment for autistic children would directresources away from other children with special needs. In response, the petitionersemployed an economist to prepare a cost-benefit analysis of Lovaas Treatment for Autismand ASD, and adduced evidence of another cost-benefit analysis conducted in the U.S. In myopinion, it is not possible to estimate accurately either the additional immediate costsof a treatment programme or the inevitable savings in the long run.
[146] The petitioners also suggest that a great deal of the money spent by thegovernment is misdirected. For example, money spent on BCHOTA's research, which simplyreviewed and summarized existing critiques of the Lovaas studies, would have been betterspent assessing the efficacy of programmes and services provided in B.C. in comparison toIBI therapies that have implemented in other jurisdictions.
[147] In a broad sense, it is apparent that the costs incurred in paying for effectivetreatment of autism may well be more than offset by the savings achieved by assistingautistic children to develop their educational and societal potential rather than doomingthem to a life of isolation and institutionalization.
[148] In any event, the petitioners do not seek full funding for Lovaas AutismTreatment for all autistic children. They seek government funded treatment where it hasbeen requested and recommended by the appropriate health care practitioner familiar withthe children, their diagnoses, and their needs.
[149] The Crown also submits that an order constitutionalizing a particular method oftreatment will lead to a checkerboard effect in the medicare system. They predict thatsome services will be de-listed, some new services added and other services will beconstitutionally entrenched, regardless of their efficacy relative to other treatments forthe same condition. The Crown expressed similar predictions of disaster in Eldridge.They suggested the government might have to provide interpreters for allnon-official language speakers and predicted that recognition of the appellants' claimswould have a ripple effect throughout the health care field. La Forest J. quoted theCrown's submission:
Virtually everyone in the health care system who is denied a service will either be medically disadvantaged or could argue that a medical disadvantage will arise from the lack of service.
[150] Those submissions were resoundingly rejected by the Court. As it turns out,accommodation for the deaf has been made without catastrophic results to the health caresystem. In Eldridge, as here, if there is a constitutional violation thatmust be redressed, a remedy can be fashioned without the wholesale destruction of thegovernment's medicare system.
[151] The exclusion of effective treatment for autistic children undermines the primaryobjective of the medicare legislation, which is to provide universal health care. Theadditional stated objective of the statute, to make "judicious use" of limitedhealth care resources, does not justify a violation of the petitioners' section 15 rights.Further, the state's failure to accommodate the petitioners cannot be classified as aminimal impairment of their rights. It follows that the Crown's submissions, whichcharacterize the objective of the medicare legislation as funding core medical servicesthat do not include ABA, cannot withstand the scrutiny of a proportionality analysis.
[152] Accordingly, I conclude that the violation of s. 15(1) cannot be justified unders. 1 of the Charter.
Conclusions:
[153] The infant petitioners suffer from a serious mental disability for whicheffective treatment in the form of ABA is available. The inability of the petitioners toaccess that treatment is primarily an issue of health care, not education or socialservices.
[154] The Crown, and specifically the Ministry of Health, provides no effectivetreatment for the medical disability of autism. The respondents' argument that they areunable to provide effective treatment for autism because of constraints in the legislationgoverning medicare attempts to erect a false barrier. Early intensive behavioral treatmentcould be provided by MOH in one of two ways. MSC may determine that behavioural therapymerits funding according to the criteria set out under the Medical Services Plan and addbehavioural therapists to the scheduled list of health care providers by regulation.Alternatively, MOH could pay for the treatment through block funding as it has done to payfor interpreters for the deaf to comply with the decision in Eldridge,supra. It is for the Crown to determine the measures it will take to comply withits constitutional obligations.
[155] However, it is the government, rather than the Ministry of Health, that hasfailed to meet its constitutional obligations. Accordingly, it makes no difference if theCrown fulfils its obligations through another ministry as the governments of Alberta andOntario have done.
[156] The Crown discriminates against the petitioners contrary to s. 15(1) by failingto accommodate their disadvantaged position by providing effective treatment for autism.It is beyond debate that the appropriate treatment is ABA or early intensive behaviouralintervention.
[157] While the clinical results of Lovaas Autism Treatment are impressive, I agreewith the Crown that the Court has no jurisdiction to specifically order Lovaas therapy orto order that MSC list Lovaas behavioural therapists as service providers on the MSCtariff.
[158] The infant petitioners are entitled to a declaration that the Crown has violatedtheir section 15(1) Charter rights.
[159] The petitioners also seek an order of mandamus directing the Crown to paythe costs of past and future Lovaas Autism Treatment. The Crown adamantly opposes anyrelief in the nature of mandamus on constitutional and administrative grounds. Theynote that in Eldridge, the Court made a declaration that the Crown's failureto provide interpreters denied the petitioners' s. 15 rights. The Court resisted givinginjunctive relief on the basis that there were myriad options available to the Crown torectify the unconstitutionality of its procedures. However, the declaration included adirection to the Crown to administer its health legislation in a manner consistent withthe requirements of s. 15(1).
[160] In this case, counsel have agreed to address the issue of the petitioners' claimfor a remedy under s. 24(1) of the Charter at a subsequent hearing. Counselmay then make further submissions as to whether an order of mandamus is justifiedin this case and, if not, whether the declaration should include a direction to the Crownto provide early intensive behavioural treatment, or funding for that treatment, withinreasonable parameters when a diagnosis of autism or autism spectrum disorder has been madeby a physician and that physician and the child's family have agreed upon a mode oftreatment.
[161] Counsel may set down a further application in chambers to make submissions whichI expect will address the following issues:
(a) the specific terms of a declaration and/or an order of mandamus;
(b) whether the petitioners are entitled to be indemnified for monies expended to date on Lovaas Autism Treatment or for future ABA treatment;
(c) whether the petitioners are entitled to additional damages;
(d) costs; and
(e) any other issues properly arising from these reasons for judgment.
"M.J. Allan, J."
The Honourable Madam Justice M.J. Allan
August 4, 2000 -- Memorandum issued to the Legal Publishers as directed by MadamJustice Allan advising that on Page 48, Paragraph 119, it should state:
".... (An application for leave to appeal to the Supreme Court of Canada was dismissed without reasons on June 29, 2000."