Improving Access to Out-of-Home Respite Services

Respite Options for Families of Children and Youth with Medical Complexity: 2025 Environmental Scan

Families caring for children and youth with complex medical needs provide extraordinary care every day. Many parents describe balancing medical tasks, appointments, work, and family responsibilities with little time to rest. Respite care provides families with a safe, temporary break, allowing them to recharge, support their own well-being, and continue caring for their child at home.

In 2025, Kids Come First Home and Community Care partners completed an environmental scan to understand the current state of out-of-home respite services in the Champlain region. The scan brought together insights from families, service providers, community partners, and health system leaders to understand what is working, where gaps exist, and what changes are needed to build a more coordinated and equitable respite system.

To review the report, please click here.

Why Respite Care Matters

Children with medical complexity often require intensive, specialized, and 24/7 care. Families in Canada provide an average of 38 hours (about 3 days) of informal care each week, and many report elevated levels of stress and burnout. Without access to respite, families face ongoing exhaustion, increased emergency visits, financial strain, and limited time for other children, relationships, and personal health.

Respite is essential. It helps families stay strong, healthy, and able to care for their child at home.

What We Learned

• The demand is rising rapidly. CHEO’s Complex Care Program grew by nearly 50% in five years, far outpacing overall child population growth.
• Only a few providers offer out-of-home respite. Ottawa Rotary Home and Roger Neilson Children’s Hospice operate at or near full capacity, with long waits and limited availability.
• Rural families face the greatest barriers. Long travel distances, fewer local options, and higher out-of-pocket costs make respite especially challenging to access.
• Cultural and language barriers remain. Francophone, newcomer, and racialized families often struggle to navigate English-only systems.
• Caregivers experience significant burnout. Families report heavy paperwork, unclear referral pathways, and inconsistent information across agencies.
• Youth lose support at age 18. There are few adult respite options, leaving families without help during a critical transition period.

Key Areas for Improvement

• Enhance geographic equity by expanding rural options or funding top-ups.
• Support transition to adulthood by extending pediatric respite to age 21 and exploring adult partnerships.
• Streamline navigation through a centralized, multilingual hub and simplified referral processes.
• Expand service capacity with cross-ministry funding and innovative respite models.
• Improve cultural competency through standardized training and multilingual support.
• Promote system integration by enhancing coordination and co-designing solutions with families.

What this means for Families

While progress has been achieved, many families still find it difficult to access the respite they need. Strengthening respite services, especially for rural, Francophone, newcomer, and high-needs families, will help reduce caregiver burnout, improve family well-being, and support children to thrive at home and within their communities. These findings will guide next steps, inform funders, and develop more equitable, coordinated, and culturally responsive respite options across the region.