The word disability has an evolving meaning for me. In some moments of time, disability is a term that has helped me define Bella’s needs to access the appropriate resources to be her best. In other moments I am trying to keep my balance, as disability can also be a slippery slope of stigma, judgement, and inadequacy. Many families like ours live and breathe it, and let’s be real... when the stakes are high I’ve seen that my child’s needs are first to be forgotten by others.
I am continuously learning how to fix the conditions around Bella, as I know she will succeed when given the appropriate accommodations and modifications she deserves. I’ve seen this at first hand, as Bella is entering her 5th year of therapy with Breakthrough Autism (BTA). Bella is currently receiving a Comprehensive ABA program that includes 35.5 hours a week focusing on adaptive life skills such as, eating with a utensil, independent dressing, and safety skills, as well as, social communication and interpersonal skills such as making requests with her P2G, waiting nicely, and turn-taking. Together, her team at BTA and I have created program goals that are appropriate for her cognitive level, ensuring that she is able to master each of her targets to the best of her ability, and continuously receiving the reinforcement she thrives on as encouragement and celebration along the way.
As an educator in the Ontario public education system, I understand how collaborative support systems can help a child with disabilities succeed. However, through years of parenting and advocating for Bella, I’ve seen the lack of quality individualized programming when educators, administrators and policy makers don’t take the time to listen. What a simple concept eh? Testing, testing… is the mic on? Listening begins by recognizing that these children have families who have valid, legitimate and important things to say.
Bella’s team at BTA has always taken the time to understand Bella, and the context of her behaviours and learning styles. Her team has always made the time to communicate with me, ensuring that the goals are not only achievable but also realistic in the home and school environments too. So what can systems that provide education, programming and/or therapy learn from this clinic?
As I take the time to reflect about Bella’s successes at BTA, I am grateful that her team is able to understand the depth of their relationship with their clients and their families. When I speak with other families of disabled children who are navigating the education system, the current narrative is about their struggle with schools who are trying to manage, conform and constrict their disabled children’s identities. Yes, a quality education does require trained professionals and appropriate resources, however at most times I’m seeing that a big component is taking the time to build authentic connections with the families.
Today I’d like to showcase Bella’s clinical coordinator at Breakthrough Autism, as she has been a key role in Bella’s IBI journey since July 2016. I’ll be sharing my interview with Jennifer, as she highlights how BTA has built a community with their clients and their families throughout the challenges of the COVID-19 pandemic.
Meet Jennifer Chu, she is the Clinical Coordinator at Breakthrough Autism and is a Board Certified Behavior Analyst (BCBA). She is responsible for the development and oversight of Bella’s programming at BTA. She completed a post-graduate certificate in Autism and Behavioural Sciences from George Brown College after completing her Hon.B.Sc. in Psychology from the University of Toronto. She subsequently completed her Master of Arts in Professional Behavior Analysis from Florida Institute of Technology. Jennifer has been working at BTA since 2013 and services children ages 3-18 on the Autism spectrum.
MOM BEHIND THE LABEL: How has COVID-19 restrictions over the last year and a half impacted ABA services for your clients and their families?
JENNIFER: It was definitely challenging. The restrictions disrupted our ability to provide regular in-person services. As a first step, we had to figure out ways to maintain continuity of care. We also had to be very flexible with the changing restrictions and dynamics. We had to be mindful of how client services and client lives were being disrupted. Everyone’s lives were disrupted, not just our direct clients, but their families, our team, everyone. For parents especially, they were suddenly being asked to juggle multiple roles. When we consider our services, it extends to the larger family unit. Our ability to provide quality services relies heavily on collaborating with the family as a whole. That means that our care and support extends beyond the child.
As such, we had to pivot and find creative ways to support our clients and their families. We had to take a lot of things into consideration as we pivoted--the needs of the client and family, and of course, the restrictions we had to work with. For example, we began using our online platform in a variety of different ways. We had to move our parent coaching sessions, parent meetings, interprofessional collaborations to exclusively teleconferencing methods (i.e., video conferencing, over the phone). For parent coaching, we utilized both synchronous and asynchronous methods. We also provided for direct online sessions to clients that were instructor-led, parent-led, or a combination of both depending on the skill-set of the client and the needs of the family. When we re-opened in-person services, we had to put in place new policies and procedures, including training and monitoring our team on proper cleaning and sanitization, physical distancing, wearing PPE, etc. At the end of the day, we came together as a team and made it happen.
MOM BEHIND THE LABEL: Have there been any positive impacts of the pivot to online servicing?
JENNIFER: Yes, definitely! We have seen an increase in parental involvement for one. Another positive impact was the ability to do programs that are more suitable for the home environment such as bathing, washing face, etc. We were also able to teach our kids skills related to online interactions and online learning (e.g., sustained attention).
MOM BEHIND THE LABEL: Have there been changes to how you support and communicate with clients and families since the COVID-19 pandemic?
JENNIFER: When Ontario went into full lockdown in April 2021, we had to move all our parent meetings, parent coaching sessions, and interprofessional collaborations online and/or rely on other telecommunication means (e.g., phone, email). (Prior to the pandemic, these were mostly done in-person and parents and other professionals were able to work directly with our team and the client). Of course, this came with a set of challenges, such as, the inability to jump in and support families through challenging situations in sessions. Instead, we would have to resort to supporting families through verbal coaching. It also made demonstrating and trying out new things with the client difficult. Not to mention, these modes of communication made it harder to build rapport, since we were missing out on non-verbal cues that make communication more meaningful. On the flip side, there were also benefits. For example, parent access to supervisors and setting up meetings has been made easier. We’ve also been able to have more frequent contacts with parents which has been very meaningful and so important too.
MOM BEHIND THE LABEL: What is your perspective as a clinical coordinator in the value building family-client relationships, especially during COVID-19?
JENNIFER: It’s extremely important. I feel it’s even more important now than before the pandemic. In our online programming (e.g., direct sessions), oftentimes it’s the parents who are implementing the programs and we’re supporting them on how to do so. Previously, outside of parent coaching, we worked mostly with our Instructors day-to-day mixed with weekly, biweekly, or monthly parent coaching or meetings. Now, there’s more emphasis on parent implementation and involvement. Also, because we can’t be there to physically support parents and families, it’s so important to have a strong family-client relationship where there’s mutual trust and collaboration. Without this, we wouldn’t be able to do the programs that are so important to success for both the child and family. It’s important that we have regular contact with our families and virtual meetings have allowed us to keep this up and even increase our contacts with families.
MOM BEHIND THE LABEL: How important is keeping families in the loop on therapy progress?
JENNIFER: Again, this is so important: not just for us as ABA providers to keep families in the loop on therapy progress but also for families to keep us in the loop about progress at home. I can’t emphasize enough the importance of planning and promoting generalization and maintenance. This is the essence of ABA programming. If we aren’t able to generalize or maintain the skills we teach our kids beyond the therapy setting to different people, contexts, and across time then why are we doing it?That’s what makes our work significant and worthwhile. In order for us to achieve this though, we need open communication and collaboration with families. It’s important that families are involved in sessions, be part of the progress, and help with the transfer of skills to those contexts where they matter most.
MOM BEHIND THE LABEL: What are some of the operational barriers to service delivery in light of the COVID-19 pandemic?
JENNIFER: There are many. I’ve already mentioned our inability to do in-person parent meetings and coaching sessions, and I don’t think that virtual interactions can really compete with in-person interactions. You lose out on a level of connection that you get with in-person interactions with families. We also have not restarted our home-based services but for some kids, this would be the more appropriate teaching context over centre-based or online services. Physical distancing requirements have also limited our ability to run certain programs we did with ease in the past, for example, teaching social skills, cooperative play, classroom readiness skills (in small group or group instruction contexts), and other programs where physical distancing can’t be maintained. While we’ve pivoted and made adjustments to do what we can to teach these skills, it’s simply not the same. Wearing masks also makes interactions more challenging: it’s harder to communicate in general when our voices are muffled and people can see our mouths or faces. We also have to limit shared materials and toys. The list goes on...
MOM BEHIND THE LABEL: Is it okay for behaviour analysts to spend time on bigger family needs during COVID-19, not just the specific needs of their client?
JENNIFER: In my opinion, yes. As service providers, while we’re concerned about the specific needs of the child, we’re also concerned with the overall well-being of the family unit. The family dynamics and their needs can influence the child, their performance, their progress, generalization, etc., and vice versa! It’s all interconnected. Clients don’t exist in a vacuum so I think it’s important to pay attention to those bigger family needs and do what we can within our roles to help, especially during these trying times. Doing so will ultimately benefit the client.
MOM BEHIND THE LABEL: What are some important considerations for providing services safely during COVID-19?
JENNIFER: Of course, one of the top priorities is mitigating the risk of transmission. We need to weigh the risks and benefits though. A lot of kids suffered from decreased service hours and other service disruptions due to the mandatory shut-down in big and small ways. We did our best during that time to continue services online but it wasn’t for everyone. Each child, their strengths, their needs, are unique. When we reopened centre-based services, we put in place many health and safety protocols, including but not limited to hand-washing schedules, wearing of PPE, physical distancing, capacity limitations, and screening. We’ve also made a lot of programming changes, for example, to the types of programs and skills we teach, limiting the amount of physical assistance we use in teaching, and more, but again, the risks and benefits had to be weighed in terms of what the child needs. We also emphasize programs like teaching hand-washing, wearing masks/PPE, being okay with getting their temperature checked, etc. Online, we need to consider things like online safety and security. We have increased online security measures in place and use a secure video platform that is HIPAA compliant, password-protect and share documents through a secure network. Where appropriate, we teach our clients about online safety and educate our families on how to help protect their children online. We conduct regular staff training and check-in sessions. There’s a lot to consider and do, but overall, I think what’s most important in order to provide services safely during this time is everyone coming together and doing their part.
Thank you Jennifer for sharing your experiences and insights of the importance of fostering a trusting and supportive environment for your clients and their families. I hope that your voice will provide a refreshed perspective for other clinics, schools and people in the education sector on affirming practices and the understanding of building positive relationships with families.
In May 2021, I had the pleasure of sitting on the panel for the Continuation of ABA Services During COVID-19 RESTRICTIONS: One Year Later webinar for the Ontario Association for Behavior Analysis. I was invited to share my perspective as a parent on Bella’s ABA services throughout the pandemic, and how the strong relationship I have with Bella’s BTA team has helped us get through these challenging times. You can check out the webinar here...
Applied Behaviour Analysis (ABA) services are typically delivered face-to-face, and often with close physical proximity. Pandemic related restrictions have been in place for over a year, which has had a tremendous impact on ABA services. This panel will include discussion from multiple perspectives including self-advocate, caregiver, and service provider. Panelists will discuss lessons learned so far, benefits and challenges of telehealth, and how services are continuing to be offered and received in these challenging times.
- Shiri Bartman, M.A., C. Psych. Associate., BCBA (Clinical Director, Shining Through Centre)
- Dr. Rosemary Condillac, C.Psych, BCBA-D (Associate Professor and Department Chair and Graduate Program Director in Applied Disability Studies, Brock University)
- Avianna Foster, B.Sc. (H) (M.A. Student Applied Disability Studies, Brock University)
- Alec Pemberton (Self-advocate)
- Carobeth Zorzos, M.A., C. Psych., BCBA (Director, Launch Behavioural Health)
- Philip Lerner (Self-Advocate)
- Andrea Haefele (Parent)