A $599,864 project, bolstered by a $199,999 contribution from the Azrieli Foundation, is underway to expand access to a specialized mental health intervention for family caregivers of individuals with neurodevelopmental disabilities (NDDs). The initiative, formally titled “No Caregiver Left Behind: Addressing Accessibility and Sustainability of an ACT Intervention for Family Caregivers of People with Neurodevelopmental Disabilities,” launched in 2025 and builds upon existing work at the Centre for Addiction and Mental Health (CAMH).
Caregiving for individuals with NDDs often leads to high rates of anxiety, depression, and burnout among family members, according to researchers at CAMH. Recognizing the collective challenges faced by these caregivers, a multidisciplinary team has co-developed “Caring for the Caregiver: Acceptance and Commitment Training” (CC-ACT). This group-based intervention, rooted in Acceptance and Commitment Training, aims to equip caregivers with coping skills and improve their overall well-being.
A key feature of CC-ACT is its co-led format, with groups facilitated by both trained caregivers and clinicians. This approach intentionally blurs traditional roles, acknowledging the expertise that caregivers bring to the process. Dr. Johanna Lake, a Scientist at the Azrieli Adult Neurodevelopmental Centre, emphasized the importance of this partnership, stating, “The power and impact of partnering with parents and siblings to co-design and deliver the CC-ACT program is essential to its success.” She expressed hope that this model would inspire other programs to meaningfully involve families in service development.
To date, the team has trained over 100 caregivers and 150 clinicians across Canada to deliver CC-ACT, reaching hundreds of families navigating NDD-related care. Yet, access to the program remains uneven. Researchers have identified systemic barriers, including language differences, stigma surrounding mental health, and limited institutional support, particularly affecting underserved communities.
Dr. Yona Lunsky, Scientific Director of the Azrieli Adult Neurodevelopmental Centre, highlighted the need for tailored interventions. “It has been very exciting to think about who is not in the room when it comes to CC-ACT delivery, and to partner with people outside of our walls to explore ways to further tailor what we have developed so that it benefits more families,” she said. She specifically noted the importance of creating spaces for sibling caregivers, whose experiences may differ from those of parents.
The “No Caregiver Left Behind” project focuses on two primary goals: improving accessibility by adapting CC-ACT for diverse, underserved caregiver communities, and ensuring sustainability through regional and national collaboration, policy recommendations, and enhanced training models. Community partners involved in this next phase of implementation include Holland Bloorview Kids Rehabilitation Hospital, BC Centre for Ability, Scarborough Centre for Healthy Communities, Giant Steps, Siblings Canada and the Canadian Centre for Caregiving Excellence.
Researchers emphasize that supporting caregiver mental health is foundational to strengthening families and improving the sustainability of care for individuals with NDDs. The project aims to embed caregiver support into existing systems through policy changes and increased funding.
