By Ana Luisa Santo, Aamir Khan, Rosemary Condillac, Andria Bianchi
Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental disorder that can impact how a person communicates with and relates to other people. Symptoms of ASD include challenges in social communication and restrictive, repetitive interests and behaviour. While the symptoms, severity, and impact of ASD vary, evidence-based therapies can help to mitigate challenges that people with autism may experience. The most effective therapies are behavioural interventions based on the principles of Applied Behaviour Analysis (ABA), which are designed and supervised by qualified behaviour analysts and delivered by well-trained and supervised therapists. Behaviour analysis is the science of behaviour change. Behaviour analysts provide treatments that change behaviour over time and teach skills to help people with autism meet their potential. So, when a child with autism is missing communication skills, and behaves in a harmful manner, for instance, a behaviour analyst could then use evidence-based approaches to effectively asses the child’s needs and implement an individualized treatment plan to alter the behaviour over time by teaching communication and reducing the harmful behaviour.
Through the Ontario Autism Program (OAP), children with ASD were previously able to access the clinically recommended hours and intensity of government-funded behavioural services from Regional Autism Programs or private clinics. In February 2019, the Ministry of Children, Community, and Social Services announced changes to their funding model that would alter the availability of and funding for interventions. The announcement indicated that the previous needs-based program would be replaced by an individualized funding model of $5000 or $20,000 per family per year (depending on the age of the child and diagnosis). Within this model, families would be expected to hire their own behavioural services. More recently, the Ministry announced that the new model will involve a needs-based funding system, however currently, the government remains committed to individualized funding that requires parents to purchase their child’s therapy directly.
One concern about changes to the OAP is that it may be difficult for families to access the appropriate amount of and/or intensity of behavioural intervention for children with autism. Intensive Behavioural Intervention, which is a comprehensive therapy working across several domains of behaviour, is most effective when delivered from 30-40 hours per week for between two and four years. Some individuals with more complex needs may require more than 40 hours. Focused Behavioural Intervention, which targets fewer domains to focus on a particular issue or need, can be effectively delivered in 10-25 hours for between six months and two years depending on the needs of the child. Many families may require additional financial support as this can cost between $25,000 – $100,000 per year.
Another concern is that families may be required to find their own behavioural services, including behaviour analysts and direct-care therapists. Some of the benefits of having a certified behaviour analyst include: access to effective interventions and assurance that therapy meets professional standards and adheres to ethical guidelines, and some limited recourse in terms of making complaints regarding services being received.
One obstacle for families selecting a behaviour analyst is that unlike other health professionals, behaviour analysts are not a regulated health profession (in Ontario). Regulation offers public protection, the existence of a minimum standard for entry into practice and use of a particular title (e.g. Psychologist, Nurse), standards of practice and ethical codes, knowledge of relevant legislation (e.g. privacy, confidentiality, consent, etc.), and a mechanism for managing complaints. The lack of regulation for behaviour analysts forces families to make decisions about selecting behavioural services without knowing if a person and/or agency uses best practices. This is ethically significant since families have a right to make an informed decision about their child’s care, yet it is challenging to be fully informed when selecting a behaviour analyst since people without adequate training and expertise could consider themselves to be part of the profession. They may also charge less money and appeal to families who may not be able to afford the amount of treatment that their child needs. The Ontario government has recently indicated that regulation of the profession is forthcoming, though the process will likely take many years.
The lack of regulation and transparency about behaviour analysis is especially problematic since purchasing behavioural services from someone who fails to practice in accordance with best practices could be detrimental (or, at least not beneficial) for a child with autism. This is concerning from a bioethics perspective since reducing harm and enabling benefits are two primary bioethics principles in healthcare. Some of the harms that could be experienced by children who work with un- and/or minimally trained behaviour analysts are: exposure to dangerous or harmful practices that can make behavioural difficulties worse, exposure to ineffective practices that could minimize the effectiveness of intervention and waste valuable time (e.g. critical developmental periods) and resources, infringement on a child’s rights if the practitioner is unfamiliar with relevant legislation (e.g. privacy, confidentiality, consent), being subjected to inconsistent and unfair billing practices, and a lack of effective recourse to make formal complaints to a provincial regulatory body.
It is important to ensure that families are empowered to make informed decisions when selecting an analyst for their child. In order to provide families with this ability, we suggest that parents look for certain qualifications, designations, and experiences from behaviour analysts. The following suggestions are meant to enable parents to make informed decisions about behaviour analysts so that their child can access beneficial, evidence-based therapies
- The Behavior Analyst Certification Board (BACB) is an internationally recognized certification body for behaviour analysts. Masters level credentialing as a Board Certified Behavior Analyst (BCBA®) is recognized as a basic standard for those overseeing behavioural interventions based on applied behaviour analysis. The website www.bacb.com has a list of BCBAs, standards of practice, and the BACB ethical code. It is advisable for anyone seeking behaviour-analytic support to ensure that they ask practitioners about their experience, education, and BACB certification.
- Typically, a behavioural team for intensive behavioural intervention includes a BCBA® to assess the child, plan, and supervise the intervention and therapists (including undergraduate or college level direct-care therapists). Focused intervention requires a BCBA® and may or may not also require direct-care therapists depending on the type/intensity of involvement needed. It is important that in addition to BCBA® certification, experience in delivering and supervising interventions should be a consideration.
- Families should feel empowered to ask providers for a current resume, proof of credentials, references, and a vulnerable persons criminal reference check.
- The Ontario Association for Behaviour Analysis (ONTABA) is the largest professional organization representing practitioners of behaviour analysis in Canada. Their website www.ontaba.org provides material about behaviour analysis as well as information that may assist anyone looking for support. A caregiver summary of their recent review of evidence-based practices for ASD (OSSETT-ASD) is also available.
- Autism Ontario has hosted a list of providers of ABA services for many years through their website www.autismontario.org. A revised registry of providers for the Ontario Autism Program is in progress, as well as resources for parents who are selecting intervention providers.
Ana Luisa Santo, MA, BCBA, is a Senior Behaviour Therapist at Surrey Place; Aamir Khan, M.ADS, BCBA, is a Behaviour Facilitator at Surrey Place; Rosemary Condillac, C.Psych., BCBA-D is an Associate Professor at Brock University; and Andria Bianchi, PhD, is a Bioethicist at the University Health Network.