NADD Bulletin Volume VIII Number 1 Article 3

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In memory of John Jacobson, Ph.D.: Autism Spectrum Disorders in British Columbia: A Short History of the Creation of a New Program

Vikram Dua, M.D.

Introduction

Autism Spectrum Disorder (ASD) has received increasing attention from health and education professionals, parents, and communities in recent years. Various terms such as Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorders (PDD) and Autism Spectrum Disorder, amongst others, are used to describe a behavioral phenotype, but not all terms have the same meaning. ASD is not a specific disease but a term describing a disorder of brain development with a strong genetic basis. Although clinical patterns may vary, all children and youth with ASD demonstrate some degree of qualitative impairment in reciprocal social interaction, communication abnormalities, and restricted, repetitive, and stereotypic patterns of behaviors, interest and activities.

  Estimates as to the prevalence of ASD have been rising over time (Wing & Potter, 2002). Although the precise reasons for this increase remain uncertain, many experts believe the major cause has been broadening of diagnostic criteria and enhanced detection. Early studies estimate the prevalence of autism at 4 to 5 per 10,000 children and youth (Fombonne, 1999). More recent studies suggest a range in prevalence from a conservative estimate of 1 per 1,000 for Autistic Disorder, up to 9 per 1,000 for the broader phenotype of ASD (Wing & Potter, 2000; Bertrand, Mars, Boyle, Bove, Yeargin-Allsop, & DeCoufle, 2001). Consistent with international trends, the last decade in BC has witnessed more than a six-fold increase in the number of autistic children identified by the schools. (B.C. Ministry of Education, 2000). Therefore, in B.C. the estimated prevalence from 0-19 is 6,024, with about 265 new cases of ASD annually.

B.C. Autism Council brief/Autism action plan/Interministerial committee

As in other jurisdictions, autism services in B.C. have been the subject of substantial concern and debate in the last decade. In 1991, specific services for autism were first introduced in B.C.. In 1999 the government sponsored a workshop which produced the Autism Action Plan (AAP) (Autism Action Plan, May, 1999). The AAP recommended improvements in early intervention and treatment, local/regional access to diagnosis and assessment and establishing a common definition of autism for the purposes of eligibility for services. Limited progress was made on the AAP's recommendations in the first few years after its release.

Legal Decisions

In the late 1990's a group of families sued the provincial government arguing that their autistic children's rights under the Canadian Charter had been violated by the lack of funded treatment for their children (the case revolved around Lovass or Applied Behavioural Analysis (ABA) for very young children).

In 2000, the Auton decision of the Supreme Court of British Columbia (Auton et al. v. AGBC 2000 BCSC 1142) agreed with the plaintiffs. The Court found that autism was "primarily a health issue" and agreed with the plaintiffs that treatment was a "medically necessary" service. Madame Justice Allan wrote that autism is "a medical disability&ldots;just as cancer is and&ldots;both require treatment..." Given the Canada Health Care Act, which enshrined medical treatment as publicly funded and equally accessible, the Court ruled that denying this service discriminated against autistic children. The Court found that provincial government's failure to fund treatment violated the Charter, and, in fact, directed government to fund early intensive behavioural therapy for children with autism. In the subsequent appeal, the B.C. court of Appeal agreed with the trial judge that the discrimination lay in "the failure of the health care administrators of the province to consider the individual needs of the infant complainants by funding treatment." The Court found that the government was obliged to provide effective treatment without delay. In the government's affidavit to the Court, it obliged itself to take a number of steps including reducing waitlists for assessment, developing regional capacity, establishing a system to monitor service efficiency, and developing standards and quality of service.

In early 2002 the government launched an appeal of the decision to the Supreme Court of Canada. Finally, 2003 Anderson decision, the B.C. Supreme Court found that the government's hitherto arbitrary cut-off of age 6 years was not legitimate, and found that the treatment "shall continue until the medical view is that no further significant benefit in alleviating the autistic condition can reasonably be expected from continuation of treatment." The implication of this was that treatment, in some form, could be expected for all children without any clearly established chronological age end-point (Anderson et al. v. Attorney General of British Columbia, 2003 BCSC 1299).

Treatment Initiatives

In the spring of 2001, shortly after the Auton decision, the government announced its first intensive early treatment programs by setting up three "pilot" sites in the province for young children to receive up to 25 hours per week of treatment in the mold of ABA therapies. Children would be enrolled in a program operated and staffed by professionals of various disciplines who would design and implement the interventions (at a cost of about $65,000 CDN annually per child). Although the plan had been at that time to expand the program to multiple sites in the following months (as the initial sites could service only 75 children at any given time), a change in government later that year was associated with a major shift in policy. The new government created the Early Intensive Intervention (EII) program of individualized funding" whereby funding of up to $20,000 CDN annually was available to families, who would then be free to {purchase" services as they saw fit. Some families welcomed this freedom of choice intervention (given the highly contentious debates surrounding intervention types; i.e. "Lovass" vs. "ABA" vs. "Floor-Time", etc.). Others, however, complained that the available funds were insufficient to provide adequate intensity of treatment. Some families also found the responsibility and decisions involved in finding, hiring, and paying providers bewildering. In the rapid expansion of treatment needs, there was also a dearth of trained competent professionals to provide services, and as a result some families could not find professions to spend their funds, or alternatively directed the monies towards general supports or poorly validated 'interventions.'

In 2003, following the Anderson decision, the government announced an extension of treatment funding to all children and youth up until their 29th birthday. The "Extended Autism Intervention" (EAI) program mirrored the "individualized funding" model of the EII program, but allowed for up to $6,000 CDN annually. This funding was specifically to be used for interventions outside of school hours. As with the EII program, the EAI funding supplemented other available support services like respite, behavioural support, consultation, etc.. Although these latter services were often associated with a lengthy wait-list, it should be noted that the individualized funds (EII and EAI) were not, and were available to families as soon as the application was processed.

It is noteworthy that the government adopted the broader diagnostic category of Autism Spectrum Disorder for eligibility, and also introduced requirements regarding the content and components of a diagnostic assessment that would meet eligibility requirements. These issues are discussed in further detail below.

Standards and Guidelines for Diagnosis of ASD

The U.S. National Institute of Child Health and Human Development considers a PDD diagnosis using one of these systems to be "one of the most reliable diagnoses in psychiatric or developmental research." Despite this, there remained in BC, as in other places, a high degree of variability and inconsistency in how autistic disorders were diagnosed. Clinicians often differed in the diagnostic label used for similarly affected children (using various terms such as autism spectrum disorder, infantile autism, high-functioning autism, autistic tendencies, and so on). It was not unusual for youth to receive previous diagnoses in their childhood such as ADHD, social phobia, non-verbal learning disability, or semantic-pragmatic disorder, prior to arriving at a diagnosis of autism. The practical result of this pattern was the poor reliability for the diagnosis of ASDs in individual children. In addition, given the Court decisions mandating expensive treatments for children with autism (as compared to many other developmental conditions which did not receive the same level of funding), the government had a clear interest in ensuring credible, valid diagnoses.

In 2002, shortly after establishing the first treatment programs, the B.C. government convened a multidisciplinary working group of B.C. professionals to establish a set of "standards and guidelines" (S&G) for the screening, diagnosis, and assessment of young children with ASD. The author of this paper served as the principal researcher and writer for that working group, which comprised of representation from psychiatry, pediatrics, psychology, education, early intervention, speech and language pathology, occupational therapy, and nursing, as well as key government ministries. The project was closely linked to the government's commitments in the affidavit to the Court, and aimed to enhance identification, diagnosis, and assessment of children with ASD through the development of provincial practice standards, clinical practice guidelines, a clinical pathway, outcome objectives and indicators, and recommendations for education and training. It was anticipated that the document produced would promote the application of evidence-based practices and means for monitoring outcomes. Several previous consensus documents already existed at the time of the project (e.g.: the New York State Guidelines, American Academy of Neurology Practice Parameters). However, this project was the first to tackle the specific population of children six years old and under. This focus was largely driven by the government's commitments at the time, but as time went on has proved to be somewhat limited as the target population has broadened.

A number of "hot-button" issues repeatedly surfaced over the course of deliberating and developing the final document. These issues included: the role of the multidisciplinary team in diagnosis; "diagnosis and assessment" versus "assessment and diagnosis"; recommendations and role of specific diagnostic instruments; guidelines for community screening; and the chasm between assessment and treatment planning. As in other areas of autism intervention, the most heated debates were most often in areas where the scientific evidence was weakest, and were personal and historical preferences held sway.

The S&G was divided into several sections: Clinical Pathway for Diagnosis of ASD; Surveillance and Screening; Primary Care Assessment and Referral; Diagnostic Multidisciplinary Assessment; and Recommendations for Education and Training. In March, 2003 the document became policy for the Ministry of Health in B.C.. The full document is available at http://www.healthservices.gov.bc.ca/cpa/publications/asd_standards_0318.pdf. In S&G the group concluded the following:

1.For the purposes of this document, the term Autism Spectrum Disorder (ASD) has been selected. This is synonymous with the broad category of PDD described in both DSM-IV and ICD-10. Research has shown that, although identification of ASD can be done with great confidence (particularly in children over three years of age), identification of sub-types within ASD does not have adequate reliability.

2.Clinical Pathway: As shown in figure 1, it was clear that in order to improve early and accurate detection of ASDs in the province, various actions had to be taken at different points in a child's procedure through the system. Thus evidence-based recommendations were made for each point.

3.General developmental surveillance: It was agreed that ongoing general developmental surveillance of all children should occur in primary care settings. This surveillance should have multiple points of entry, meaning that all primary care practitioners need to be engaged (including family doctors, public health nurses, infant development professionals, and so on). Given the substantial evidence of the accuracy of parental concerns about communication and social development in their children, the first and possibly most critical aspect of surveillance must be serious consideration of voiced parental concerns about communication, development and behavior. Specific attention to communication and reciprocal social interaction milestones were recommended. In addition, specific general developmental screening instruments were supported, as well as monitoring for the "clinical clues" or "red flags" of ASD published by other groups.

4.Selective ASD screening: It was agreed that research into ASD specific screening tools was at a very preliminary stage and did not support community-wide screening for ASDs. At the same time, the working group recognized the utility of these tools to augment clinical inquiry at the primary care level, as well as serving as a means of more focused data-gathering around the clinical presentation. It was clear that "failing" or "passing" on any single measure should not be the sole determinant of whether or not a child is referred for further assessment. Thus the recommendations of the S&G included use of screening tools complement surveillance where concern about ASD existed, particularly in higher risk populations such as the siblings of children with all DD and psychiatric syndromes. At the same time no single procedure to screen for ASD in all children in the primary care setting was seen as appropriate. Therefore screening, if done, could utilize either Age-appropriate ASD-specific screening instrument(s), or a review of previously published ASD screening questions with caregivers.

5.Primary Care Investigation and Referral: The working group noted that often children with ASDs experienced long delays from the time of initial parent concern and ultimate referral and diagnosis. In addition to the measures outlined above, the working group recommended a number of investigations be initiated in the community at higher risk for a DD including but not limited to ASD (including hearing screen and community speech-language assessment). Most importantly the S&G agreed that all children who are subsequently shown to have an ASD be referred for specialized assessment within 3-4 months of first voiced concern or symptom.

6.Diagnosis and Assessment: The S&G outlined the minimal requirements for diagnosis and assessment of children under age 6, referred for query ASD. A clinical diagnostic assessment, completed by a pediatrician, psychiatrist, or psychologist which would include history from multiple sources, consultation with professionals from other disciplines, an evaluation of developmental level, a standardized ASD diagnostic interview (ADI or CARS*), and a standardized ASD observation tool (ADOS or CARS*). In addition, prior to confirming a diagnosis of ASD it was essential that other developmental conditions and comorbidities be ruled out or evaluated. Thus these children must also be provided psychological assessment of cognitive level and adaptive functioning, speech-language-communication evaluation, and a pediatric assessment (in addition to occupational therapy and psychiatric assessment if indicated).

With the introduction of EII funding for children under the age of 6 (see above), the government adopted the recommendations in #6 above as the requirements for children to be eligible for such funding. The essential meaning was acceptance of the diagnosis of broader ASD, the need for standardized diagnostic tools, and the necessity of multidisciplinary involvement in the diagnosis. When the EAI program was introduced for older children and youth, there was no comparable set of standards available to guide government requirements. The newly created BC Autism Assessment Network assisted in this regard.

Formation of BCAAN for Under 6

In 2002, concurrent with the implementation of the EII program, the B.C. Autism Assessment Network (BCAAN) was created as a provincial program. The original mandate was to assess children under six years referred for a question of query ASD, but in the following year, with the introduction of the EAI program, BCAAN expanded to serve all children and youth with query ASD under the age of 19 years. The principals of this program were for it to be provincial in nature, with access to assessment and diagnostic services for ASD within the child's home community. At the same time it was recognized that in order to ensure quality and consistency of services across the province, a provincial planning and monitoring mechanism was needed with regional accountability for services and outcomes. The design was one of a service delivery model which enabled regional and provincial planning, coordination and evaluation of assessment and diagnostic services. Outcome evaluation/CQI processes, including examination of family and child outcomes, were a core part of the program. The program was also envisioned as one that could serve as a future platform upon which support for children with other non ASD developmental and behavioral conditions could be provided. Although the immediate goal was to reduce wait-lists and wait-times for assessment, this was to be done in concert with improvements in the quality of assessment, with implementation of the S&G requirements. It was also understood that as the program proceeded, the nature of the clinical needs would evolve and long term maintenance planning was also essential.

In practical terms, the Network is composed of 5 regional service teams (RST-representing each regional health authority) and one central "hub" at the Provincial Autism Resource Centre (PARC). Each RST is responsible for providing diagnostic and assessment services to children and youth in their region. Given the nature of the province, each region has developed a somewhat different solution on how to do this. In some higher density regions a standing multidisciplinary team is in place. In other regions there are other models such as periodic clinics which travel to different centers on a rotation, use of office-based professionals to complete components of the assessment in a modular fashion, or integration of the ASD services into already established programs (such as community CDC's). Within any model, each child's evaluation must nonetheless adhere to the S&G requirements (more on the over-6 population below). PARC was initially constructed as a joint venture of Mental Health and Child Development programs of the BC Children's Hospital. In joining together, there was the vision of a more consistent and comprehensive program for children across the age span. PARC currently serves a number of functions including; tertiary care centre for complicated cases, network co-ordination, education, training, and research, database management, and outcome evaluation, and liaison with government.

BCAAN currently has a capacity of 1000 secondary level diagnostic assessments annually. It is the only program in Canada, and perhaps North America that consistently provides state-of-the-art and comprehensive assessments for all children and youth within a large jurisdiction.

BCAAN has had a number of significant accomplishments. In the first phase of development training was provided to over 200 professionals across BC in "gold standard" diagnostic instruments (the Autism Diagnostic Interview and Autism Diagnostic Observation Schedule), which hitherto had been rarely employed in assessment. Currently in the "second phase," the focus of education and training is in maintenance of competency and prevention of "drift" through ADI/ADOS refresher courses, establishment of a "mini-fellowship" at PARC for community professionals, and outreach training with a focus on optimizing reliability in assessment procedures.

BCAAN has also had an important role in informing government policy and in developing new initiatives. Perhaps the best example of this in is the operational aspects of the EII and EAI programs. In the past, when families sought funded programs through the children's and families ministry, they were required to produce professional reports both confirming the diagnosis and the treatment recommendations. This process was rife with problems. Sometimes reports were not readily available, and commonly used vague language to refer to the diagnosis (for example, "autistic features"). Not infrequently reports contained other personal or family data that was irrelevant to the application for services. Ministry social workers were burdened by having to sift through piles of historical information and somehow interpret clinical information for which they had no training. The application of the rules of eligibility was frequently inconsistent.

In order to address these obstacles and smooth the transition for families from the diagnostic through to the intervention phase, BCAAN collaborated with the government to establish standard forms for the EAI (and subsequently EII) programs. These forms, completed by the diagnostician when the assessment concluded, contained a summary of only the information necessary for the social worker, provided in a standard terminology. It also included a series of "check-boxes" for interventions that could be recommended (in an attempt to support legitimate interventions for which there was at least some clinical or scientific support). Thus, the data provided included diagnosis, instruments used to make the diagnosis, professionals involved in the assessment, and categories of recommended interventions.

As a logical extension of the government funding application forms, and in recognition of the need for BCAAN to provide ongoing program evaluation and research support for a decentralized provincial clinical evaluation program, the BCAAN Database was developed. To afford easy accessibility to clinicians across the province, a Web-based platform was chosen. Although the concept of large-scale clinical datasets is not new, the BCAAN database is notable in that it provides comprehensive reporting of a developmental/behavioural phenotype across a large geographic territory.

Key features of the BCAAN assessment process and database include:

1.Data Quality: The key to success in any clinically based research project is the quality and consistency of the 'case definition'. For BCAAN, uniform case definitions of autism spectrum disorders (ASD = Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorder-Not Otherwise Specified; as per DSM-IV-TR criteria) is facilitated through the use of validated clinical diagnostic instruments that have good sensitivity and specificity for ASD (See description above regarding use of ADOS/ADI as part of the clinical diagnostic assessment process). Furthermore, BCAAN has an ongoing mandate to train selected qualified specialists across the province in the use of these instruments, as well as to support a maintenance of competency program. This helps build and maintain assessment/diagnostic capacity and standards across the province. The application of the above standards is facilitated through both government policy (e.g. intervention funding applications via the Ministry of Children and Family Development) as well as service agreements (e.g. between PHSA and the other BC Health Authorities).

2.Comprehensiveness: There are limitations in trying to generalize results of a clinical study whose population is obtained from a single assessment centre (i.e. limited to catchments from a narrow geographic/demographic area). The BCAAN database helps avoid the bias inherent in obtaining cases from isolated clinics by providing integrated provincial coverage. Both positive and negative cases of ASD are recorded, as well as co-morbid conditions. This is important for a number of reasons that include development and testing of ASD screening programs (ability to track false positive/false negative rates) and policy development (quality evaluation; tracking and monitoring referral burden). Mandatory reporting is facilitated through both legislation (e.g. reporting requirements of BC Vital Statistics) and service agreements (e.g. between PHSA and the other BC Health Authorities). All children and youth less than 19 years of age are eligible for assessment services.

3.An internet (web-based) platform was chosen. The following information describes the ongoing creation and implementation of the British Columbia Autism Assessment Network's (BCAAN) provincial database. It is presented here to demonstrate the potential of such a database as both a clinical and research resource, one that could be adapted in scope for use with other child development populations and/or in other jurisdictions to facilitate networked research initiatives. Although the concept of large-scale clinical datasets is not new, the BCAAN database is notable in that it provides comprehensive reporting of a developmental/behavioural phenotype across a large geographic territory.

The key features of the BCAAN assessment process and database include:

i.Data Quality: The key to success in any clinically based research project is the quality and consistency of the 'case definition'. For BCAAN, uniform case definitions of ASDs are facilitated through the use of validated clinical diagnostic instruments that have good sensitivity and specificity for ASD.

ii.Comprehensiveness: There are limitations in trying to generalize results of a clinical study whose population is obtained from a single assessment centre. The BCAAN database helps avoid this by providing integrated provincial coverage. Both positive and negative cases of ASD are recorded, as well as co-morbid conditions.

iii. Flexibility: Within the database, individual DSM-IV-TR domains are recorded (as well as an overall 'diagnosis'). This allows flexibility and retrospective searches of the database if the definition criteria for ASDs change over time.

iv.Expandability: It is envisioned that BCAAN will serve as a template and foundation for regional assessment/diagnostic services for a variety of other developmental conditions across the province (e.g. Fetal Alcohol Syndrome). Because of the modular nature of the evolving BCAAN database, it is ideally suited to accommodate expansion to include these other developmental conditions.

"Research Implications: The BCAAN clinical model and its affiliated database have the potential to expand to monitor a variety of other developmental disabilities (e.g. Fetal Alcohol Syndrome) at a provincial, inter-provincial, and/or national level. Examples of potential research categories include epidemiology, health outcome research, examination of screening/diagnostic instruments, and policy/economic research.

The Future

The mandate of BCAAN has been to develop standards for service, develop regional capacity (and training of regional professionals), increase the number of assessments, and reduce waitlists and wait time to diagnosis. To date we have met the first three out of four objectives. Although wait-times have been reduced considerably since the inception of the program, currently a child under age 6 can expect to have their first appointment with 3 to 6 months. This still falls short of our target of 3 months. Similarly, we have adopted an internal target of 6 months wait-time for patients over the age of six, but currently see a wait-time of 6-9 months. There have been several reasons for this. First of all there has been a substantial increase in the numbers of patients referred, which has outstripped the expansion in capacity. It has also proven challenging to attract professionals of all disciplines to the field; a problem faced by many programs for the developmentally disabled.

In the future BCAAN looks to moving beyond one-time diagnosis and assessment and involvement in other critical areas. This includes re-assessment, particularly of very young children for whom there is a higher likelihood of diagnostic instability. Many consensus documents have indicated the need for routine developmental monitoring of children and youth with ASD, especially given the higher risk of comorbid conditions (such as seizures and psychiatric syndromes) at different points in life. As well, a focus on key transition points in these children's lives is needed, as experience tells us these are the times at which regression and adjustment difficulties often emerge. ASDs are developmental conditions which change, often in unpredictable manners. In order to reduce the morbidity associated with the disorder it is necessary to be pro-active.

An increased focus on what happens before the diagnosis is also an important area for improvement. As BCAAN has improved accessibility and quality of diagnostic services, the challenges in the primary care setting, preceding and accompanying referral for assessment, have come into greater relief. Addressing this would include improving the developmental surveillance and referral practices of primary care professionals (such as family doctors and general pediatricians). Much research indicates that a minority of these practitioners engage in routine developmental surveillance, and even fewer for social and communication development. An all too common refrain from families is that they have experienced a lack of validation of their early concerns, and a delay in recognition of the problem for months, if not years. This is a valuable opportunity missed, as research suggests that the neural plasticity of the young brain is the prime time for intensive intervention which may alter the course of the disorder.

Epilogue: The Supreme Court of Canada Decision

In late November, 2004, the Supreme Court of Canada issued their decision on the appeal of the Auton case. This overturned the lower court decisions entirely, and found that discrimination of the children had not been proven, and in addition, that there was not established right, in law, for ABA treatment. The Chief Justice wrote, "In this case, the government's conduct did not infringe the petitioners' equality rights. The benefit claimed-funding for all medically required treatment-is not provided by law&ldots;The legislative scheme is not itself discriminatory in providing funding for non-core services to some groups while denying funding for ABA/IBI therapy to autistic children. The scheme is, by its very terms, a partial health plan and its purpose is not to meet all medical needs&ldots;Nor has it been established on the facts of this case that the government excluded autistic children on the basis of disability. &ldots;The government's conduct did not infringe the petitioners' rights under s. 7 of the Charter." (Auton (Guardian ad litem of) v. British Columbia [Attorney General], 2004 SCC 78 http://www.canlii.org/ca/cas/scc/2004/2004scc78.html)

The impact of this decision is uncertain.

For further information: vdua@cw.bc.ca