Elizabeth Chambers

Elizabeth Chambers’ caregiving journey did not begin all at once—it unfolded over a lifetime. As a young person, she volunteered in the disability community and supported her extended family’s work as foster parents. That early exposure quietly shaped what would become a life defined by care, advocacy, and resilience.

As an adult, Elizabeth left her career as a teacher and, with her husband Keith, became a foster parent. When her teenage foster brother, Adam, who has been with her family since infancy, asked to stay not as “the little foster brother” but as a permanent member of the family, they said yes and welcomed him as their son. Today, Adam is 28 and lives with an intellectual and developmental disability. He remains, in Elizabeth’s words,“the kindest person with the biggest sense of humour.”

Caregiving expanded again with the birth of her youngest son, William, following complications that nearly claimed both of their lives. Now eight years old, William is non-speaking, deaf, blind, tracheostomy- and ventilator-dependent at night, with spastic quadriplegia, requiring round-the-clock care.

Alongside Adam and their 14-year-old daughter, Daisy, who Elizabeth insists should never feel responsible for caregiving, the family also cares full time for Elizabeth’s 89-year-old mother, who has been living with Alzheimer’s for more than seven years.

Elizabeth describes her role as managing “a tower of responsibility”—six people under one roof, each with complex and evolving needs. For William alone, she coordinates a network of more than 50 care providers, therapists, and professionals. The logistics are relentless, but the stakes are deeply personal.

Even with this level of involvement, the system meant to support families like hers often feels precarious. Critical services can disappear without warning. When a key care provider was forced to stop working due to visa delays, the family was left scrambling. This is an all-too-common reality in a system where urgent replacement support is rarely available.

Financial pressures add another layer of strain. Despite the intensity of care required, Elizabeth’s family does not qualify for full support. Essential equipment comes with significant out-of-pocket costs. A recent “basic” wheelchair for William cost approximately $11,000, with 75% covered by the Ontario Assistive Devices Program.

As a full-time caregiver, Elizabeth receives no income, pension contributions, or employment benefits—losses that compound over time.

“I was working at my dream job and planned a short maternity leave,” she explains. “But the level of care my son needed made it impossible, and I experienced complete burnout.”

The physical and emotional toll is constant. Sleep is inconsistent. Respite is limited. Basic needs are often deferred. Alongside caregiving, she has become a powerful advocate and contributor to research through McMaster University’s CanChild Centre for Childhood-Onset Disability Research, where she acts as a family leader, researcher, author, and partner on multiple projects. She is especially passionate about programs like ENVISAGE, which support families early in their caregiving journeys, helping them navigate new realities with “confidence and connection.”

Through it all, her purpose remains clear, but it’s never without worry.

“I worry about the future, and not just for my children, but for caregivers like us. Everything feels short-term and reactive. What will happen in 20 or 30 years, when we need care too? Why can’t I find a way to care for my loved ones now while knowing I don’t have to fear my own future because of it?”