Purpose of the initiative
What the research tells us
Scope of services to be provided
Key considerations in providing services and supports
Principles guiding service delivery
Goals of the Services and Supports
The vision of the Ministry of Children and Youth Services (MCYS) is an Ontario where all children and youth have the best opportunity to succeed and reach their full potential. To support this vision, the ministry is building on and improving the continuum of services and supports for children and youth with Autism Spectrum Disorders (ASD) in Ontario, and their families by implementing Applied Behaviour Analysis (ABA)-based services and supports.
The new ABA-based services and supports are an addition to existing ministry-funded services for children and youth with ASD1. These services include:
1Additional information on the services for children and youth with ASD funded by MCYS may be found on the Ministry website at http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/autism/findhelp.aspx
Recent research evidence points to the effectiveness of mainly behavioural approaches for supporting positive outcomes for children and youth with ASD, although other approaches have been shown to be effective as well (Dawson et al, 2010; National Autism Center, 2009). The National Autism Center’s recent review of published studies concluded that several treatment strategies based on ABA were effective for children and youth with ASDs. Of additional significance, for each treatment type, the study summarized the ages and diagnoses of children showing favourable outcomes and the specific skills increased and/or behaviours decreased.
Children and youth with ASD have complex and varying needs that may change in intensity over time and would benefit from a range of flexible supports, particularly those that support the development of skills. An appropriate mix of personalized and flexible services and supports can respond to these needs. While IBI is the most appropriate intervention for some children with ASD, other services can appropriately support children and youth to develop skills in areas of key importance to improve quality of life for them and for their families.
The expansion of ABA-based services and supports for children with ASD is designed to help a broader range of children and youth with ASD develop skills in key areas and to address behaviours that interfere with functioning. ABA-based skill building services and supports include those that increase functional life skills and decrease interfering behaviours.
These services and supports promote the generalization and maintenance of skills across settings and different stimulus conditions and help children and youth with ASD build skills and manage behaviours so that they can participate in their communities.
The following key considerations will guide the delivery of these ABA-based services and supports:
Case Study 12
2Please note that the case studies in these guidelines are fictional examples of how a child could receive and benefit from ABA-based services. They do not account for the range of possible scenarios that exist as a result of a flexible service delivery system.
Kamal is seven years old, has a diagnosis of autism and has recently completed the Autism Intervention Program (AIP). Kamal’s social worker referred Kamal to the ABA services and supports initiative since she believed that Kamal would benefit from further support in the area of social and interpersonal interaction. After the intake process was completed, Kamal was placed on the waitlist by the central waitlist manager. In Kamal’s region, when a vacancy arose with one of Kamal’s selected service providers, Kamal received support in the areas of social and interpersonal interaction as detailed on his individual service plan.
The following principles will guide the development and delivery of these ABA-based services and supports:
Child, Youth and Family-Centred:
Coordinated and Collaborative:
Quality and Evidence-Informed Practice:
Transparent and Accountable:
Accessible, Flexible and Responsive:
ABA-based services and supports will focus on the achievement of the following child, family and system oriented goals.
Services and supports for children and youth with ASD funded through this initiative will focus on those that are based on the principles of Applied Behaviour Analysis (ABA), (not including IBI services). Some children and youth may need other supports and referrals to other services such as Cognitive Behavioural Therapy (CBT), mental health services, developmental services may be appropriate for some children and youth.
ABA employs methods based on scientific principles of learning and behaviour to build useful repertoires and reduce problematic ones. Using this approach, there is a clear definition of the behaviour(s) to be changed, careful recording of the behaviour, and analysis of the antecedents and consequences to help in the development of new adaptive behaviours and reduce undesirable behaviour. There is also the ability to demonstrate that the intervention was responsible for the change in behaviour (Cooper et al 2007).
Rather than being tied to specific procedures, program or techniques, ABA includes methods based on the principles of learning theories to change behaviours in a way that is systematic and can be measured. Behavioural teaching methods have been demonstrated to effectively increase communication, social skills, activities of daily living, and academic skills in community settings (National Autism Center, 2010).
ABA-based services and supports include those that increase functional life skills and decrease interfering behaviours (Schoen, 2003). Effectively managing behaviours requires understanding the underlying function of the behaviour, the context in which the behaviour occurs and the “triggers” of the behaviour being exhibited (functional behavioural analysis). An important feature of ABA is that the skills learned are maintained and generalized to other settings and with other people3.
3Generalization refers to the occurrence of desired treatment outcome outside of the treatment setting and with individuals who were not involved in the treatment. Maintenance refers to the continued performance of the behaviours or skills acquired in treatment after the treatment has ended (NRC, 2001).
An effective ABA-based support plan for a child with ASD exhibiting challenging behaviours will:
The following key features of ABA are relevant to the creation of clinical services to support the development of skills for children and youth with ASD related to behaviour/emotional regulation, communication, daily living or social skills:
Using an ABA approach, services and supports will focus on addressing the needs that children and youth with ASD have in key areas. Areas that are of particular relevance for children and youth with ASD are:
While these skill areas are presented as four discrete categories, it is recognized that they are often interrelated. For example, a lack of ability to communicate may be the cause of aggressive behaviour for a child with ASD. Likewise, interventions designed to impact one skill area may affect other skill areas.
The target population for these services is children and youth who have a diagnosis of ASD and who require assistance to develop their skills in one or more areas to improve their quality of life.
Children and youth of age 0-17 (up to 18th birthday) are eligible for services if they have confirmation of an ASD diagnosis from a professional who is qualified to make a diagnosis4 of Autism/Autistic Disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), or Asperger’s Disorder5.
4Diagnoses may be made by family physicians, paediatricians, psychiatrists, psychologists and psychological associates.
5This document will be updated as appropriate when the Diagnostic and Statistical Manual of Mental Disorders-V is released.
Eligible children and youth may be receiving other ASD-specific or general services and supports funded by MCYS or other ministries. Children receiving services and supports may continue to receive these services in addition to ABA-based services and supports. Other services and supports that children are receiving will be considered in the development of the ABA-based service plan. Children and youth who are on the waitlist for IBI services delivered through the AIP, who have been discharged from the AIP or who are in the AIP are eligible for ABA-based services and supports.
Referral for service will be accompanied by assessment and other information pertaining to the child or youth and their family that will assist in the identification of service needs. Where a diagnosis of an ASD has also been made by the referring professional, all required assessment information and documentation pertaining to that diagnosis will be provided to the service provider accepting the referral6. Where ABA-based services and supports are determined not to be appropriate for children and youth with ASD referred to an ABA-based service provider, referrals will be made to other available services to address the needs of children and youth and their families. Referrals to other local services will be coordinated with local access mechanisms in communities where these bodies play a role in simplifying access to services.
6Where reference to sharing a child or youth’s assessment, treatment or other personal information is made throughout this document, it is expected that informed consent will be obtained as appropriate and the information sharing will be done in accordance with applicable laws including privacy laws.
In order to access services, a referral can be made by a parent/caregiver and/or a professional such as7:
7Those professionals must be regulated/licensed/registered by and in good standing with the appropriate professional body.
Information regarding ABA-based services and supports and other services available to children and youth with ASD and their families will be developed specifically to assist referral sources in providing information to families and facilitating referrals to appropriate supports. Referral sources may also refer families to other available ASD-specific and generic services and supports.
The ABA-based services and supports provided through this initiative are not designed to address all the needs that children and youth with ASD may have, or to be offered in an intensive way over a long period of time. These supports are not intended to replace comprehensive programs that are available to many children and youth with ASD.
Rather, services will target the development of specific skills in the areas of communication, social/interpersonal, daily living and behaviour management/emotional regulation.
Services are designed to target the child’s or youth’s highest priority skill development area(s). Services will be provided for between two and six months depending on the child’s or youth’s identified needs and the type of service being delivered. Services will typically be provided for between two and four hours per week with flexibility to provide services more or less frequently as appropriate depending on the type and design of the service to be delivered.
A description of the services and supports will be provided to parents/caregivers by referral sources. As well, the services and supports design and schedule for service delivery will be clearly articulated in the service plan and communicated to parents/caregivers by service providers as soon as possible, and before services begin.
Parents/caregivers will be involved in the development of the service plan for their child and their explicit agreement with the plan, including how it will be implemented, will be sought.
Services will be available in communities to address all four areas of focus. Children and youth with ASD will have different needs depending on their developmental stage. This initiative recognizes that children and youth may require more focus on certain skills in a particular area depending on whether they are preschool age, school age or adolescents. Individualized services will be developed for children and youth with ASD who are at all ages and stages of development and will be diagnostically appropriate, thereby addressing the range of needs of these children and youth.
Services and supports will be developed based on the principles and techniques of Applied Behaviour Analysis (ABA) as described in these Guidelines. For detailed descriptions of specific ABA techniques, and information on their effectiveness for children and youth with ASD, see the Summaries of Scientific Research on ABA Teaching Procedures page on the Association for the Science in Autism Treatment (ASAT) website.
Curricula that have been demonstrated to be effective in teaching skills to children and youth with ASD may also be a useful resource in the development of service plans for delivering ABA-based services and supports. A resource list of sample curricula is provided in the appendices.
Contemporary, family-centered approaches to intervention recognize that Autism Spectrum Disorders affect the entire family as a system and not the child/youth in isolation (Guralnick, 2000).
It has been well established through controlled research studies that parents can learn and selectively apply techniques to help their child or youth develop skills and change behaviour. Nearly all empirically validated treatment approaches for children and youth with ASD include a component to teach parents the techniques being used to teach their child new skills and how to apply them (National Research Council, 2001).
The involvement of parents/caregivers is essential to achieving maintenance and generalization of skills learned by children and youth with ASD. As well, it has been demonstrated that parents who learn the specific techniques to support their children or youth also have increased feelings of competence and report positive parent-child or youth interactions (National Research Council, 2001). There is also an opportunity for parents who are learning techniques as a group to be part of a social network with other families of children with ASD, which has been shown to have a positive impact on the well-being of the child and their family (Crnic & Stormshak, 1997).
The ability of this initiative to lead to selected outcomes for children and youth with ASD is dependent to a significant degree on the involvement of parents/caregivers in learning the strategies being taught to their children and incorporating these techniques into daily activities. This ongoing support is essential in order for children and youth to maintain the skills they have learned, and apply these skills in other settings and with other people. For this reason, the involvement of parents/caregivers is a core component of this initiative.
Case Study 2
Ming has autism on the severe end of the spectrum. She is on the waiting list for IBI but as of yet has not received service. Her mother learned of MCYS’ ABA-based services through the Ministry’s website. Using the contact information on the website, she scheduled an appointment for intake with an identified service provider in her region. Through the intake process, Ming was identified as being eligible to receive ABA-based services and supports. After the intake process, her mother received a phone call from the region’s central waitlist manager asking her to select the applicable regional service providers from whom she would like Ming to receive service. She was told that when Ming is at the top of the waitlist and a space becomes available at one of her selected service providers, she will be offered that space. Ming’s mother selected two of the three applicable service providers, knowing that if her preference or circumstance changed she could call the central waitlist manager and make such changes. At a later date, Ming’s mother received a phone call from the central waitlist manager informing her that a place had become available with one of her selected service providers. Ming’s mother accepted this space and Ming received support according to her individual service plan in the areas of understanding language, using gestures for communicative purposes and addressing aggressive behaviours.
Those receiving funding from the Ministry of Children and Youth Services to deliver services through this initiative have the following responsibilities related to identifying the service needs of children and youth with ASD and delivering these services or referring individuals to appropriate services.
Coordination of services
Providers of ABA-based services and supports will act as a point of information for parents/caregivers, other service providers and the general public regarding the supports provided through this initiative by all providers in their region. Service providers will also be aware of, and provide information about other existing ASD-specific services as well as other services that may be accessed by children and youth with ASD and their families.
Service providers will be responsible for supporting service coordination wherever possible once they engage with a child or youth and their parents/caregivers to deliver services.
Specifically, service providers are required to:
Management of Referrals
One service provider per MCYS Region is responsible for maintaining the waitlist using a first-come first-served principle (i.e. central waitlist manager) and proactively communicating to parents/caregivers the anticipated date when their child or youth can expect to start receiving service.
Parents must complete the intake process to have their child/youth placed on the waitlist. The intake process is completed once the service provider has determined that the child is eligible to receive ABA-based services (the child or youth is of age 0-17 and has a valid diagnosis of ASD) and existing information (such as the results of previous assessments) that will assist in the identification of service needs has been provided by the family/caregiver. All information received from the referral source will become part of the child’s ABA-based services and supports record.
A child cannot be added to a waitlist for additional ABA-based services while the child is receiving ABA-based service funded through this initiative.
Families are given the option to choose where they receive ABA-based services and supports. Families may choose to travel outside their catchment area if a space becomes available within their MCYS region.8 If parents/caregivers have expressed interest in more than one service provider, when a space becomes available at one of the identified providers, parents/caregivers can chose that space or wait for a space at another service provider for which they have expressed an interest.
8A catchment area is defined as a geographical area within an MCYS region.
If a child or youth moves to another MCYS region, that child or youth will be placed on the central waitlist of the other MCYS region according to the date that the initial intake was completed for the child or youth in the MCYS region where the child or youth previously resided.
Parents/caregivers can contact the central waitlist manager at any time to update information if circumstance or preference has changed (e.g., if a child or youth on a central waitlist has moved from one MCYS region to another) or if parents have questions.
Identifying service needs
Prior to receiving service, the child’s or youth’s skills, needs and strengths will be assessed taking into consideration parents/caregivers’ views. This is necessary to determine the most appropriate area(s) of focus and to identify programming options.
Assessment involves identification of the child or youth’s unique behaviours, needs, strengths, and characteristics, and evaluation of the environment, and description of the interactions between the individual and his or her environment (Steege et al., 2007).
Many children and youth with ASD who are seeking service will have already undergone assessments and therefore information may already exist that identifies the kinds of skill building supports they would benefit from. Where recent and relevant assessment information exists, new assessments will not be required.
The following information will be considered or collected in order to gain an understanding of the child’s or youth’s service needs and to develop a service plan to target those of highest priority:
Where it is determined that a child’s or youth’s service needs will not be addressed through the available ABA-based skill building services at this point in time, referrals will be made to other appropriate services and supports. These may be existing ASD-specific services9 or services provided by other sectors such as mental health services.
9Visit www.children.gov.on.ca/htdocs/English/topics/specialneeds/autism/index.aspx for information on services for children and youth with autism in Ontario.
Development of an ABA-based service plan
Service providers receiving referrals will be responsible for identifying children’s and youth’s service needs with input from parents/caregivers and based on the information that already exists or that is collected to inform the development of the plan. This individualized service plan will describe specific objective(s) related to the development of behaviour management / emotional regulation, communication, social/interpersonal and/or daily living skills to be achieved over the next two to six months through the delivery of the ABA-based service plan.
Every child’s or youth’s service needs will be different and the ABA-based service plan will be tailored to their particular circumstances. While the services provided will be, for the most part, delivered to children and youth who are at a similar developmental stage and have similar skill development needs, services and supports are necessarily individualized to address particular needs.
The ABA service plan must include:
Additionally, the following information could also be included in the service plan or verbally communicated to the parents/caregivers by the staff responsible for parent/caregiver communication:
Parent/caregiver instruction and education
An integral component of ABA-based services and supports is education and information for parents/caregivers. While their child or youth is waiting to receive service and while their child or youth is receiving service, parents/caregivers will be provided with the opportunity to:
Where possible, service providers will work to minimize any barriers to parent/caregiver participation that may be identified. The inability of a parent/caregiver to participate in learning activities will not exclude their child from receiving services; however, every effort should be made by parents/caregivers and providers to address barriers to participation given the importance of parent/caregiver involvement to selected outcomes for children and youth.
Alternative ways of providing information and education for parents/caregivers that could address identified barriers to participation should be explored. Parents/caregivers will also be provided with information about existing resources in the community related to parent/caregiver support and educational and informational opportunities.
Children and youth may re-enter ABA-based services to further develop skills they have learned, or to address new service needs that emerge at various points in their development. In order to re-enter service, referral by a parent/caregiver or an identified referral source is required. A child or youth who has completed a module of service but is still eligible for additional services will be placed at the bottom of the waitlist for that MCYS region.
In referring children and youth to services, information regarding the original ABA service plan as well as information regarding the new service need that has been identified must be provided by the professional making the referral to the receiving service provider or by the parent/caregiver.
Those developing service plans and delivering community ABA-based services and supports will have training in behavioural approaches, knowledge of ASD and experience working with children and youth with Autism Spectrum Disorders10.
10See Consumer Guidelines for Identifying, Selecting and Evaluating Behaviour Analysts Working with Individuals with Autism Spectrum Disorders, Autism Special Interest Group (SIG) of the Association for Behaviour Analysis International (2007)
Professionals with the following qualifications will be involved in identifying a child’s service needs and developing a child’s ABA service plan:
A collaborative approach will be adopted in developing the service plan, recognizing that other professionals may play a key role in identifying needs and recommending strategies, for example, Occupational Therapists and Speech and Language Pathologists. The service plan may identify key roles for these professionals in delivering the skill building supports to children and youth with ASD.
Service providers with varying levels of training and qualifications may also appropriately implement the ABA-based service plan, depending on the type of service being provided and the child’s or youth’s specific needs. For example, some children and youth may have challenging behaviours that require those delivering service to have specialized training. Other children or youth may be focused on developing social skills through participation in recreational activities which may require only that the staff accompanying them have knowledge of ABA-based techniques and their application.
The service provider delivering ABA-based supports is responsible for ensuring that:
Children and youth with ASD may vary greatly in terms of their specific skill building support needs and the intensity and scope of support required.
Within the context of the local service delivery system, different ways of delivering supports may be required to best meet the range of support needs, including individual and group-based service.
Regions of the province differ in terms of the availability of services and supports and capacity to serve children and youth with different ASD diagnoses who are at various ages and developmental stages.
For these reasons, flexibility is required both in terms of the services and supports that are developed and the ways in which they are delivered.
In all areas of the province, however, ABA-based services and supports should:
Case Study 3
Kevin was diagnosed with Asperger’s Disorder, is fifteen years old and is in high school. School staff have informed Kevin’s parents that unstructured social time at school is a stressful moment for Kevin. Having heard about the ABA-based services and supports through Kevin’s family doctor, Kevin’s parents contact their region’s ABA provider requesting support for Kevin in coping with unstructured social activities at school. The provider’s intake worker works with Kevin’s parents in gathering Kevin’s diagnosis documentation and previous assessment information. As soon as the family has gone through intake, Kevin’s parents start receiving instruction on ABA-based methods and are able to start applying them at home. The service provider develops a service plan for Kevin, based on needs assessment and in collaboration with Kevin’s parents. At the end of his service plan, Kevin has achieved his service goals and has learned different ways to cope with unstructured social time at school.
Service providers selected to deliver ABA-based services and supports have entered into a Service Contract with the Ministry of Children and Youth Services to deliver ABA-based services and supports.
The service contract entered into with the Ministry to deliver ABA-based services and supports includes requirements for the collection of information consistent with the Ministry’s approach to performance measurement to support decision-making and business planning.
As well, the collection of information by service providers will enable longer-term evaluation of the initiative according to the five key domains identified in the Ontario Public Service Evaluation Framework. These five domains are as follows:
11For the complete Program and Evaluation Reference and Resource Guide for the Ontario Public Service visit http://www.ontla.on.ca/library/repository/mon/20000/274278.pdf
To achieve monitoring and evaluation goals, all service providers are required to collect information pertaining to:
In order to capture the information required to evaluate and monitor these outcomes, service providers will perform activities as appropriate such as conducting interviews, facilitating focus groups, deploying surveys, collecting and cleaning data, and managing the storage of large datasets.
Specific data collection requirements are integrated into service agreements developed between the Ministry and service providers.
Applied Behaviour Analysis (ABA): ABA employs methods based on scientific principles of learning and behaviour to build useful repertoires and reduce problematic ones.
Catchment area: Geographical area within an established MCYS region
Children and Youth: Ontarians of age 0-17 (up to 18th birthday)
Intensive Behavioural Intervention (IBI): IBI is an intensive application of Applied Behaviour Analysis (ABA) designed specifically for children with autism in which children typically receive 20-40 hours of intervention per week delivered by a therapist who works 1:1 with the child or in a small group. The intervention is delivered with the goal of increasing the child’s developmental trajectory or rate of learning. Children typically show the most progress in the first years of intervention.
MCYS: Ministry of Children and Youth Services
Parent/caregiver: May include, depending on the circumstances, a parent, guardian or person with primary care giving responsibility or other family member who plays a central role in the child’s life.
Regional Office: An office of the Ministry which is responsible for service system management, supervision and the delivery of services for a specific geographic area on behalf of the Ministry.
Service provider: A provider that delivers services for children and youth with ASD; and/or delivering ABA-based behaviour management/skills development programs.
The term Autism Spectrum Disorders (ASD), has been used most commonly to refer to a subset of Pervasive Developmental Disorders that includes:
The prevalence rate of ASD in children and youth is approximately 1 in 150 (Fombonne, 2008), although recent findings indicate that the prevalence rate may be even higher i.e., 1 in 110 (CDC, 2009). As new Canadian and/or Ontario-specific research is undertaken and validated, MCYS may change the ASD prevalence rate it uses.
ASD are complex neurological disorders with no known cause or cure. Characteristics typically appear within the first three years of life with four times as many boys diagnosed as girls. ASD are characterized by impairments in communication and social interaction as well as repetitive patterns of behaviours, interests, and activities.
Children and youth with ASD have complex and varying needs that may change in intensity over time and require a range of flexible supports, particularly those that support the development of skills.
Examples of Evidence-based Curricula for Teaching Skills to Children and Youth with ASD