Strategic Direction 1: Transform the client and family experience across all life stages
In this section:
Peer Navigators in interdisciplinary approach/family voice
Grandview Kids is a leader in Family Engagement, building the premier program within Ontario’s CTC sector, which has garnered national and international recognition. We are one of few programs of this kind in Canada.
The Grandview Kids Family Engagement Team (FET) provides structured peer support directly to clients and caregivers. The team also ensure the “family voice” is captured to inform organizational decision-making from the governance to operational level.
The FET is comprised of caregivers to Grandview Kids clients and former clients (grads), who use their lived experience and specialized training to support other parents, caregivers and clients in their journey. Peer support is described as a supportive relationship between people who have a lived experience in common. It is intended to be rooted in hope through an empowering and empathetic relationship. FET Peer Navigators have become an integral part of the interdisciplinary and family-centred approach at Grandview Kids, with their efforts now tracked in the client health record.
Caring for a child or youth with physical, communication or developmental needs can leave some caregivers feeling isolated and alone. Families must constantly advocate for the needs of their child, but often services are limited for the caregivers. Research shows that caregivers of individuals with developmental and/or intellectual disabilities can experience negative impacts to their mental health, physical health, and finances, and experience difficulties with system navigation. Offering peer support, mentoring and education from individuals who have first-hand, personal experiences creates an authentic, non-judgmental environment where families feel empowered, understood and supported. This can lead to better health outcomes for caregivers and their children.
“Thank you, Grandview, for listening when no one else would and continuing to listen and learn from those with lived experience. We will forever be grateful for everything Grandview has done for our family. We’ve got a long way to go together, but I’m glad Team Grandview is part of our journey!”
Grandview caregiver
As of 2023-24, Peer Navigators are now integrated into seven Grandview Kids programs as key members of interdisciplinary team, spanning autism and behaviour services, adolescent transitions, complex medical care and marketing ambassadorship. Across networking nights, workshops, coffee chats and events last fiscal year, the FET supported 2,330 families, plus hundreds of emails/calls/1:1s to coordinate events, follow-up on concerns, or offer coaching. Through the Family Engagement program, clients and caregivers have a warm handoff from clinical care to a supportive community of others that share a lived experience for sustained support throughout their paediatric journey.
Adolescent Transition Program
Caring for a child or youth with physical, communication or developmental needs can leave some caregivers feeling isolated and alone. Families must constantly advocate for the needs of their child. Similarly, youths with communication, physical and developmental needs face challenges as they learn to navigate social situations in school and in life. It is evidenced that adolescents experience difficulties engaging with adult services after graduating from children’s services, which can result in measurable adverse outcomes (e.g., non-adherence to treatment, limited self-care skills, deficiencies in knowledge about their condition/needs, etc.), in addition to adverse social and educational outcomes. Research suggests the lack of engagement with adult services may be the result of inadequacies in transition planning while the adolescent is in paediatric care.
Through continuous engagement with clients and families, Grandview Kids repeatedly heard that as adolescents prepare for their transition into the adult health care system, they are left with many unknowns and uncertainties. Caregivers wonder about their adolescent’s future: their social well-being, financial stability and autonomy as an active member of the broader community. Youths worry about isolation, work or school accommodations, intimacy, social skills and being independent. Adolescents and their caregivers consistently tell us it feels like “falling off a cliff” when their paediatric support system is no longer accessible. Grandview Kids knew we had to bridge this gap and help prepare families for the uncertainties that lay ahead.
Through a TD Grant, the Grandview Kids’ Family Engagement Team developed an Adolescent Transition Program. The Program is unique in its emphasis on peer support for both youths and their caregivers, recognizing we must support both to be effective. The Program supports caregivers throughout transition planning as an advocate for their child. The Program aims to offer a consistent process to address the developmental, psychosocial and educational/vocational needs of young adolescents with physical, communication, medical or developmental conditions as they move from child-centred to adult-oriented health care and social service systems. It complements and builds on paediatric rehabilitation services currently offered by Grandview Kids.
The new Program was co-designed by an interdisciplinary Steering Committee, comprised of Parent Advocates, Youth Advocates, as well as members of Grandview Kids’ Family Engagement, Clinical and Client Services, and Medical teams. This integrated approach put the family voice at the centre of program development. The Committee developed a multi-year work plan, centred on four goal areas to address system gaps facing disabled, adolescent clients (aged 15+) and their families.
The workplan was based on priorities identified via caregiver focus groups. Caregiver connection emerged as an early opportunity, so a dedicated online parent support page (via Facebook) was established first to share information and solicit feedback with caregivers to adolescent clients as new resources were developed. This group now has now grown to more than 70 members, regularly engaging in swapping resources, tips and tricks with each other as this online network grows. Grandview Kids also posts and promotes programming appropriate for users, whether delivered by Grandview Kids or other, trusted community providers.
In 2023-24, the Committee also oversaw the development of a 41-page Adolescent Transition Toolkit. This toolkit serves as a roadmap, outlining steps to be taken in transition to adult services. It can be used by youths on their own, or by their caregivers. Months of research went into developing the Toolkit, as well as vetting content to ensure the resources, links and descriptions were accurate and relevant. Leading practice dictates that preparation for transition should start early in childhood, with the health care team encouraging families to be informed participants in their child’s care. Community involvement and knowledge of external resources is important. That is why our Transition Toolkit is so valuable to families.
We also hosted a formal kick-off event in August 2023, showcasing the Program’s development and goal areas. Over 50 people attended, with one guest saying, “I feel like there is hope again for my son’s transition to adulthood.” Education and networking events were also hosted throughout 2023-24. For youths, an e-sports gaming night provided a forum to make friends and engage in a fun activity, while parents and youth accessed information about post-secondary education and local job opportunities.
At a dream board/future planning event, youths and their parents mapped out their goals for the future, as one parents described after attending it, the value was immeasurable:
“Recently my daughter and I had a wonderful opportunity to attend the Dream Board Event hosted by Grandview’s Adolescent Transition Group /Family Engagement Team. My daughter was so excited to attend this event and to create a board for herself that reflected what she wants for her future. I also was looking forward to making a board myself with goals I see for her future. The evening was full of smiles and sharing stories between families and youth. At the end of the night my daughter expressed she had a great time and found making the board fun and loved setting goals for herself. At the end of the evening the youth were given the choice if they would like to share their board with the group and she jumped at the chance. When she was presenting I as a parent learned things I was not aware of that she hope to do/try. It was so great to hear and now I can find ways to help her try to meet those goals. She loved chatting and hearing other people experiences and was so happy coming home. She wants to help and attend any events hosted by Grandview Adolescent Transition Team she can. The take away for me from this event was she felt heard, she matters and she has a plan for her future.”
Grandview Kids parent
Another event included speakers from Developmental Services Ontario (DSO) and the Ontario Disability Support Program (ODSP) – aligned to the financial support goal area – where parents and youths learned about the application process and requirements for these two critical programs.
“Just wanted to thank Grandview for hosting that After 18 Funding Workshop night. I just received our letter that our son is eligible for DSO. I can’t explain the relief I feel knowing this. Honestly, I didn’t realize how much stress I was having about his future until I got the letter and now I know he will have some options and support in his adulthood life. Such a relief! So thank you so much because I didn’t know I should have started the process when he turned 16 or where to even start!”
Grandview Kids parent
In the year ahead, the Adolescent Transition Program will continue to provide much-needed transition support to families that are aging out of pediatric services. Through a series of education, networking and community events, families will gain confidence to know what happens next in their journey.
Ability Acceptance Program
People with physical, communication and developmental needs are often faced with stereotyping, stigma and discrimination in daily life. Much of the disabled community faces exclusion from parts of society other people take for granted. Everyone deserves to feel like they belong. At Grandview Kids, we aim to actively contribute to a community that is inclusive and accepting of all abilities. Together, we can make our schools, workplaces and community more inclusive for people of all abilities.
Our Ability Acceptance Program is available to local businesses, schools (starting in Grade 6), licensed childcare centres and community groups. The goal is to enhance the understanding and acceptance of all abilities and promote inclusive practices. Presentations are available virtually or in-person, at no cost to participants.
In 2023-24, our Ability Acceptance Presenter, Mitchell Daniels, conducted 11 presentations to more than 670 participants. Audiences included students (Grades 4-8), government organizations and affiliated agencies. Presentations occurred in Oshawa, Whitby, Toronto, Ajax, Uxbridge and Peterborough.
Our new monthly newsletter, Gather
In May, 2023, we launched a new, external, monthly newsletter called Gather. It goes to over 8,000 clients, caregivers and community partners. Engaging, updating, listening to and working with clients and their caregivers is critical to the ongoing success of Grandview Kids.
We started our work on this newsletter with feedback from our Family Advisory Council (FAC) – a group of parents and caregivers to Grandview clients, who volunteer their time and use their lived experiences to influence program design and decision-making at Grandview. The FAC asked us to develop a new channel to communicate Grandview Kids news, events and announcements to clients and caregivers, while offering a mechanism to collect and respond to questions from the community.
Gather is about community. It’s about bringing together people and ideas to support, advocate for and celebrate one another. When we Gather, we learn, we play, we innovate, we thrive. Gather features client and caregiver voices and stories. It offers a way to amplify and showcase those experiences and perspectives through feedback surveys, focus group opportunities and our Family Leader Program. It’s a tool for clients and caregivers, built with clients and caregivers!
Our Communications Team earned an International MarCom Award for the Gather newsletter in 2023.
LIFT Guidelines
In July 2023, the Ontario government announced a province-wide investment of $26 million in fiscal 2023/24 for Preschool Speech and Language (PSL) and Children’s Rehabilitation programs, as well as ongoing investments to support sustained programming in future years. To support organizations in delivering on these goals, Ministry of Children, Community and Social Services (MCCSS) shared the Preschool Speech and Language and Children’s Rehabilitation Services Guidelines in August 2023. These Guidelines are intended for PSL Lead Agencies and Children’s Treatment Centres (CTCs), as well as these organizations’ direct service partners and/or contracted regulated health professionals.
Together, the Guidelines and the government’s financial investment support the launch of the Ministry’s new “Leading Innovation for Transformation (LIFT)” paediatric rehabilitation sector strategy. The Guidelines focus on tiered approaches to service delivery, equity to support the diverse needs of families in culturally safer ways, and clear service pathways for clients. The Guidelines seek to reduce paediatric surgery wait times, reduce wait times for children’s rehabilitation services, and expand the provision of children’s rehabilitation services. This directly impacts Grandview Kids as a paediatric rehabilitation provider.
Grandview Kids is well positioned to support implementation with progress towards LIFT goals well underway. We submitted our LIFT Implementation Tracker in Fall 2023 – the first step in building our LIFT Action Plan. And we began to plan for next fiscal how to continue delivering tiered approaches to service delivery across programs, focus on equity starting with a robust clinical education pathway, and further develop and implement service pathways in collaboration with community partners.
