The CARES Program: Research, Development & Lived Experience

CARES POSTER
Ola Kuznierz, Webinar and Service Navigation Support Specialist, Autism Ontario

~ 9 minute read 

Autism Ontario has had the privilege of being invited by the team at SAAAC (South Asian Autism Association Centre) to take part in a new initiative, the CARES program. CARES is a facilitator led, highly interactive, semi-structured six to eight week program. The group facilitators create a safe space where caregivers can feel empowered and overcome the challenges posed by an autism diagnosis, while fostering strong bonds with their peers.  The program development team at SAAAC, consisting of Dr. Sivaplan  (Dr. Shiv) and Kiruthiha Vimalakanthan, MA (Kira), has incorporated many self-care and mindfulness evidence-based strategies, such as stress management, helpful thinking, self-compassion, and problem solving, into the CARES framework.  This unique support group is offering caregivers a chance to bring the focus to themselves, if even for just an hour a week.  

To gain a more in-depth understanding of the CARES program, we interviewed the development team: Dr. Shiv and Kira, and a parent who recently attended a CARES group. Here is what they had to say about the program. 

1. Could you tell us a bit about yourselves?

Kiruthiha Vimalakanthan

Kira - I am currently in my final year of a PhD in clinical psychology at the University of Waterloo and have just started my pre-doctoral residency at Surrey Place in Toronto. Addressing gaps in and improving access to mental health supports, especially in diverse communities, has always been a professional passion of mine. My primary role at SAAAC is the development and supervision of the CARES program. 

 

Dr. Shiv

Dr. Shiv – As a family doctor by profession, I believe in the potential for change to the current diagnostic landscape for children with autism. With an interest in child development, I have worked collaboratively with multiple stakeholders to design the Mobile Developmental Outreach Clinic (M-DOC), a unique developmental screening initiative with the goal to increase access to diagnosis and intervention support for newcomer communities. In addition, I helped develop the CARES initiative, which employs a task-shifting model to provide mental health support for caregivers of children with autism.

2. What inspired you to develop a program like CARES? 

Dr. Shiv - CARES was initially developed as a low-resource, culturally responsive mental health program for the families we support at SAAAC. While at SAAAC we have a lot of wonderful, resilient parents and other caregivers who are committed to accessing supports and resources for their children with autism, we noticed that self-care was not often a priority. 

Kira - We didn’t have any existing formal caregiver services. This was the inspiration for developing CARES – we saw the need to create an avenue for caregivers to take care of themselves as well as their families.   

3. How is the CARES program unique from other support programs? 

Dr. Shiv - There are a few things that make CARES unique from other support groups. One, is the semi-formal structure of each session. Although there are topics and material to cover for each session, there is quite a bit of flexibility allowing facilitators to respond to and build off of each group’s unique needs. When caregivers are willing to share their own experiences with each other, facilitators are trained to really prioritize and support that; when the group requests more skills-building or interactive activities, the facilitators have lots of material to support that need as well.  

Kira - The CARES program was developed with caregivers of children with autism in mind, and in that sense, all the skill- building and activities are guided by that. However, what is learned in CARES is broadly applicable to all areas of caregivers’ lives, not just in their role as caregiver. We also wanted to make CARES easily accessible in various languages and to various cultures. We try to represent these cultural diversities in our program. Finally, CARES will continue to evolve as we learn from each new caregiver that participates in the program. We take pride in continually improving on the program to meet the evolving needs of our caregivers.   

“Research tells us that caregivers of children with autism are vulnerable to stress, isolation, and a whole host of mental health challenges.” 

4. Why is offering a group like CARES important? 

Kira - Research tells us that caregivers of children with autism are vulnerable to stress, isolation, and a whole host of mental health challenges. Caregivers often prioritize their children’s needs above their own, but when the caregiver isn’t doing well, that affects the well-being of the entire family. CARES teaches caregivers the importance of “putting on their own oxygen mask before helping others.” The program helps foster a healthy and resilient mindset and allows for the development of personal skills to care for oneself and others. More than that, it brings families together, allowing parents to connect through shared experiences and really form a supportive community. 

Dr. Shiv - the CARES group framework is relatively informal – the group facilitators, though well-trained, are not mental health professionals, and instead are often those with lived experience of supporting a child with autism. This eases caregivers into a safe, non-threatening space where they are more able to open up about their challenges and focus on themselves. This was also an opportunity to create positive experiences for the community of caregivers that we initially served, who have little to no experience with, and a lot of wariness towards mental health services and professionals. 

5. How many caregivers have been through this program? 

Dr. Shiv - We have served close to 40 groups and over 120 families in the last 2.5 years of the program running.   

6. How has the CARES group impacted caregivers? 

Kira - Through CARES, caregivers have learned essential skills for self-care, and they have also been able to expand their social circle by meeting other families who have gone through (or are going through) the same situations that they have. Connecting with other caregivers who truly understand what it’s like seems to be a truly valuable component of this program. Caregivers frequently ask us at the end of the program if there is more and some have even volunteered to become facilitators themselves. 

7. There has been preliminary research done on the CARES program. Can you tell us about some of those findings? 

Dr. Shiv - I think the most surprising finding was just how quickly caregivers noted a change in how well they felt they were doing. Our preliminary results suggest a lot of change within the first half of the program, and it is heartening to see how positive an impact the program has right off the bat, even if that is just the result of caregivers doing something to support their mental health.  

Even more encouraging is the significant drop we see in caregiver report of levels of depression, anxiety, and stress after the program, considering that at the start of the program most of them report these to be at clinically significant levels. 

Woman standing in front others speaking with subtle emotion

8. What do you hope to see for the future of the CARES program? 

Kira - We hope to see CARES as a self-sustaining program where caregivers that have participated in CARES will be able to act as coaches/facilitators for other caregivers in future groups. We already see that naturally occurring within the groups, as caregivers who have been through a specific experience or challenge reassure or provide advice to another caregiver that is currently experiencing the same thing. Empowering caregivers to support each other is a valuable avenue for improving mental health in this community. 

9. What do you want caregivers to know about the CARES program? 

Dr. Shiv -  If you’ve been having a hard time and feeling like you’re burning out, the CARES program is a great opportunity to meet and talk to others who might be going through the same things and understand you in a way not many others might be able to.  

Kira - The real value in participating in this program comes from truly coming to know that one is not alone in one’s challenges. But you’ll also pick up some invaluable skills to take care of yourself along the way! 

“[Offering a group like CARES] is important because there aren’t many programs like this for parents."

We also sat down and interviewed a caregiver that recently attended a CARES program. This single mother of two children, one who is on the autism spectrum, took the time to share her experience.

1. What was it about the CARES group that interested you in joining? 

The fact that there was a CARES group prompted my interest in joining. I don’t often see groups advertised and as such have never been a part of any. The fact that mental health of parents being at the forefront of the group was an added bonus. I see courses on how to “raise” atypical children but again, not many surrounding the health of the parents involved.   

2. What was the most impactful part of the program? 

The most impactful part of the program was the different perspectives from the other parents. How they cope/deal with various situations as they arise and our facilitators helpful input. Knowing that there are different insights, helpful suggestions that I myself would not necessarily think of, and learning how to utilize the tools in the parent workbook to help in these situations that may/will arise. 

3. Why is offering a group like CARES important? 

It is important because there aren’t many programs like this for parents. Having contacts that you can reach out to specifically (facilitator) and knowing that you have an extra support system is always welcomed.  

4. Based on the presented curriculum, what was the biggest takeaway for you? 

I enjoyed the stress management and assertive communication chapters. It was insightful and the extra tools presented by our Facilitator and other parents, led to new tools for me to incorporate in my everyday life. The tips to practice assertive speech have come in quite handy.  

5. What do you want other caregivers to know about the CARES group? 

For other parents I think you get what you put into it. In our group, I thought those who were consistent in showing up reaped a lot of benefits, not just from leaning on other parents and their helpful advice, but, also to reinforce that as a parent of a diagnosed ASD child you are not alone. There is help available. It allows some self-care time where you can actually connect with other parents and learn something. It is a “no pressure” environment and laid back enough so we don’t actually feel forced to input our ideas; but you will want to :-) 

My view on support groups was that people will sit around and sing kumbaya, no offence intended, so I never really thought about participating in one. But for the CARES program I am very glad I did because I learnt so much, the tools were impactful, I can refer to the workbook anytime, and, of course, we seamlessly connected with our Facilitator who did an amazing job. I don’t think there is anything to lose, so why not? 

 

The CARES program is having a significant impact on the individuals that join a group

As evidenced by the research completed by Dr. Shiv and Kira, and the lived experience of the caregiver, the CARES program is having a significant impact on the individuals that join a group. The overall aim of the CARES program is to help parents understand that they are not alone in their struggles and empower them to take better care of themselves. 

For more information on the CARES program, click here.

Do you want to join a CARES program? To register for an orientation evening, click here.


 

DISCLAIMER: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2021 Autism Ontario 416.246.9592 www.autismontario.com