Patient- and family-centred approach to managing waitlists for children with complex needs

HN Summary

• Holland Bloorview’s Extensive Needs Service launched the “While You Wait for Services” program to provide meaningful support for families awaiting care for children with complex developmental and behavioural needs.

• The initiative offers caregiver wellness programs, behaviour management training, respite care, resource navigation and social skills workshops to help families build skills and prepare for services. 

 • Early feedback shows the program is reducing isolation, strengthening caregiver resilience and helping families feel supported while they wait for specialized care.

Waiting for health-care services can be challenging for patients and families, especially when needs are urgent. 

To address this challenge and support patients referred to Holland Bloorview Kids Rehabilitation Hospital’s Extensive Needs Service (ENS) while they await care, the hospital launched the ‘While You Wait for Services’ project in 2025. This project aims to provide meaningful support to families while they wait and helps prepare them for what to expect upon service entry.

“We know that waiting for urgently needed services can be very difficult,” says Tamara Milicevic, ENS’s clinical operations manager. “We heard directly from families and were deliberate in our approach to shifting to a patient- and family-centred approach that recognizes these stresses and uncertainty.”

 “With this new service, we can offer interim supports, keep families informed about timelines and build readiness so they can benefit fully when their ENS service begins,” adds Kathryn Decker, senior director of neurodevelopmental health and inclusion services.

What is Extensive Needs Service?

ENS provides intensive clinical services through a wraparound model for children with extensive developmental and behavioural health needs. The program is rooted in an interdisciplinary, patient-and family-centered approach, providing individualized care tailored to each child’s unique needs. 

ENS is run in partnership with the Children’s Hospital of Eastern Ontario, Holland Bloorview Kids Rehabilitation Hospital and McMaster Children’s Hospital – alongside more than 30 community and regional partners – and is funded by the Ministry of Health and Ministry of Children, Community and Social Services.

While You Wait for Services

While You Wait for Services offers a full suite of programs for families while they wait to receive ENS services.

• Growing While We Wait: This experiential, group-based program delivered in partnership by caregivers and clinicians introduces core acceptance and commitment concepts and, unlike most interventions, focuses on caregivers’ own well-being.

• De-escalating Unsafe Behaviours: This training equips families and caregivers with strategies to manage and de-escalate unsafe behaviours, adapting concepts from the Crisis Prevention Institute’s (CPI) Nonviolent Crisis Intervention (NVCI) program.

• Respite: Delivered in partnership with VHA Home Healthcare, the clinical team works closely with patients and families to provide meaningful respite care, giving families much-needed rest and extra support for their children or youth.

• Resource Clinic: This clinic offers families and caregivers the opportunity to meet with a service coordinator who helps them navigate care systems and access supports available for their child or youth. They can assist with funding applications, exploring respite, summer camp options as well as community and recreational programs.

• Let’s Make Friends: The Social Skills Parent Workshop supports caregivers of children with social communication needs through virtual training sessions where they learn evidence-based strategies to build their children’s social play, conversation, and perspective-taking skills.

ENS family therapist Leticia Toro leads the Growing While We Wait program and reflects how it has supported families.

“As a clinician, it was a privilege to witness the power of parents gathering in honesty and care. [The program] became a space of deep empathy, resilience, learning and connection — where courage quietly flourished in the midst of uncertainty.” 

In addition to these programs, Holland Bloorview has developed a video series to provide families with engaging educational content and introduce the program in an informative way.

‘Hope’ and ‘faith’

The impact of the program has been a tremendous support for families. 

“I just wanted to thank [the ENS team] for this amazing opportunity to learn and be with other fami-lies that can relate to what challenges I am facing. It gives me hope, faith and makes me feel less isolated from others,” shared one caregiver.

Another parent shares, “I really appreciated the group and what I found super helpful is that we gathered as parents to focus on ourselves rather than to detail our children’s challenges. That feels ground-breaking in a system where all you do is advocate for the success of your ASD child with no place for parents to go and no place to share feelings or learn how to cope with what can be intrac-table situations.”

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