Family Leadership Program Year in Review
2015-2016
Two years ago when I was going through a hard time in my life, I couldn’t have imagined that I would find my voice and my self-confidence through advocacy. But Holland Bloorview’s Family Leadership Program has offered me the opportunity to empower myself – and I love every minute of it. I am SO excited to help where I can.” Susan Cosgrove, family leader
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Family Leadership Program Year in Review 2015 – 2016
Table of contents Letter from the President and CEO Family Leadership Program: Who we are Children’s Advisory Council Youth Advisory Council Family Advisory Committee Bloorview Research Institute Family Engagement Committee
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I have had several family leaders give me feedback around standards of care/policies we are reviewing or developing and I am always amazed by the amount of thoughtful feedback we receive that we had not thought to include. Their review of standards of care adds to the quality of the standards and helps us to ensure the best possible client experience.” Kim Krog, collaborative practice leader
The family leaders have provided us with wonderful and helpful feedback and insight to assist with our study planning. Thank you so much for all your work and help!” Stephanie Chow, research assistant
The family leaders’ participation on our [connect2care] steering committee has proved invaluable in our planning and decisions in making the portal most useful to our families.” Ben Sybring, vice president of corporate services
The family leaders have been very accommodating with our project and give a perspective that would otherwise go unheard. We couldn’t do it without them!” Erin Johnston, senior communications and engagement associate, Holland Bloorview Foundation
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Family Leadership Program Year in Review 2015 – 2016
Letter from the President and CEO Congratulations to all of the child, youth and family leaders on your amazing accomplishments over the past year. Thank for your commitment to partnering with Holland Bloorview and continually improving the quality of care and services at the hospital. You also are enriching our academic achievements in creating and spreading knowledge through your cutting edge engagement with the Bloorview Research Institute and Teaching and Learning Institute. Your impact is not just within the four walls of this hospital though – you are also helping to change the health system by sharing your knowledge with other hospitals and organizations. Through your dedication to advancing disability issues and advocating for a better health system and more inclusive society, you make positive change possible. I would also like to thank our client and family integrated care team for ensuring our clients and families and everyone at the hospital have the support and resources needed to put clients at the heart of everything we do, within the four walls of Holland Bloorview and beyond. Thank you as well to our generous donors for supporting our Family Leadership Program and client and family centred care – you help create a world of possibilities for kids of all abilities. Sincerely,
Julia Hanigsberg President and CEO
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Family Leadership Program Who we are The Family Leadership Program is the framework through which client and family leaders partner with the hospital and Bloorview Research Institute to shape and improve policies, programs and services and advance client and family centred care.
Volunteer family leaders participated on
over 200
special projects, initiatives and committees
Hospital advisors shared experiences and ideas on
Research advisors shared experiences and ideas on
hospital initiatives
research initiatives
Peer mentors provided
244*
86
401
peer to peer consultations
35
parents attended the inpatient parents talks co-led by peer mentors
*Number reflects parents who have attended more than once.
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Family Leadership Program Year in Review 2015 – 2016
Family leaders co-developed the hospital’s client and family centred care simulation training for employees, which won a 20 Faces of Change Award from The Change Foundation in 2015.
307
staff and students trained using client and family centred care simulations
Families as faculty shared their family story
75
times at educational activities, internal/external presentations or public relations initiatives
15
family and youth advisors are full partners in Accreditation planning to continually improve quality and safety
Research reviewers brought the family perspective to
6
research proposals
Research communicators helped make research understandable and shared research with other families on
43
communication initiatives
Family Leadership Program’s advisory councils and committees Children’s Advisory Council (CAC) Youth Advisory Council (YAC) Family Advisory Committee (FAC) Bloorview Research Institute Family Engagement Committee (RFEC)
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Children’s Advisory Council Who we are Members of the Children’s Advisory Council (CAC) are clients and their siblings who range in age from 3 to 13 years. CAC members share their unique perspectives, experiences and ideas to shape hospital improvements and research projects. The CAC uses a strengths-based and play-based engagement model, meaning that members can provide their feedback in ways that work for them. In 2015-2016, the CAC had 36 members.
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Family Leadership Program Year in Review 2015 – 2016
How we’ve made a difference
• Helped improve therapeutic video games being developed in our research institute by testing prototype versions.
• Helped make the outpatient waiting area more fun by testing and selecting new video games for ScreenPlay, our accessible and interactive gaming station.
To learn more, contact Daniel Scott, CAC coordinator, at dascott@hollandbloorview.ca.
• A number of CAC members were invited to speak about the importance of engaging kids in their health care at the second annual Patient Experience Summit, hosted by the Strategic Institute in Toronto. • Partnered with the hospital to help shape the organization’s quality improvement plan to reflect our needs (pictured above). • Brought visibility to disability by selecting the winner of the hospital’s Filmpossible award, presented in partnership with the TIFF Kids’ Jump Cuts Young Filmmakers Showcase (opposite page photo).
What’s next • Food tasting and review of the menu in the hospital’s cafeteria. • Changing how people think about disability by helping to set advocacy priorities.
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Youth Advisory Council Who we are The Youth Advisory Council (YAC) is strategically situated in the Participation and Inclusion Department and is one arm of Holland Bloorview’s Youth Engagement Strategy (YES). YES enables youth leaders (current and former Holland Bloorview clients) to actively collaborate with families, clinicians and hospital leadership on organizational priorities such as: policy and program development, implementation and evaluation, delivery of services and teaching and learning. YAC provides an opportunity for youth to build their leadership and advocacy capacity through participation in council meetings, group projects and hospital priorities. In 2015-2016, YAC had 24 members, aged 14 to 29 years.
How we’ve made a difference Provided exceptional client and family centred care • Volunteered at the Recreation, Respite and Life Skills Information Fair for clients and their families. • Assisted with four youth drop-in social events for youth.
Partnered in the community • Participated in a Civic Literacy Workshop with the Centre for Independent Living Toronto.
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Youth Advisory Council members • YAC created a video for the Provincial Advocate for Children and Youth’s “I Have Something to Say” campaign, and shared our thoughts about how to make Ontario a better place for youth with special needs.
Family Leadership Program Year in Review 2015 – 2016
• Spoke at the ReelAbilities Film Festival, the largest film festival in North America dedicated to telling the stories of people with disabilities and Deaf people.
Recognized as expert collaborators in childhood research • YAC, seen as a strong partner for emerging issues in childhood ethics, became a community partner of VOICE: Views On Interdisciplinary Childhood Ethics Project. This long-term project is housed at McGill University. • YAC partnered with our research institute and consulted on three major research projects about independence, community participation and physical activity for youth with disabilities.
I participate in the Youth Advisory Council because our feedback, ideas and suggestions help to revise programs and to guide research initiatives at Holland Bloorview. We also have opportunities for meaningful advocacy and education.” Julia Kowal, youth advisor
• We partnered with the hospital to help shape the organization’s quality improvement plan to reflect our needs. • YAC is changing how people think about disability by helping to set advocacy priorities. • YAC also had some fun together and went to a Blue Jays game!
What’s next • Work with the hospital to provide input into Accreditation 2017 preparation.
Fostered meaningful engagement • YAC consulted on the social media strategy for the Holland Bloorview Concussion Centre’s international symposium.
To learn more, contact Dolly Menna-Dack, youth facilitator, at dmennadack@hollandbloorview.ca or 416-425-6220 ext. 3292.
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Family Advisory Committee Who we are The Family Advisory Committee (FAC) helps ensure client and family centred care is at the heart of everything that Holland Bloorview Kids Rehabilitation Hospital does. FAC members share their expertise and provide guidance on major hospital projects and initiatives, and set their own yearly goals that help advance client and family centred care at the hospital and in the wider community. In 2015-2016, the Family Advisory Committee had 40 members (30 family leaders, 3 Youth Advisory Committee members, 5 senior management team members, 1-2 Board of Trustee representatives at every meeting).
How we’ve made a difference • Provided input and guidance on 11 major hospital projects, including: connect2care, an online portal to manage health information and appointments The quality improvement plan Operating plan for programs and services • Planned and supported activities for the Canadian Family Advisory Network conference and presented our family engagement in research activities. • Hosted 2 coffee nights where families and clinicians have a chance to take a break and connect with each other. • Fundraised for 543 welcome kits for inpatient clients and families. Kits include toiletries, a note pad and water bottle. 12
• Planned the Client and Family Centred Care Day in June 2015. Family leaders recognized employees, hosted a standingroom only panel discussion titled “From the Bedside to the Boardroom: The Impact of Client and Family Centred Care” and enjoyed a family leader appreciation event in the evening. • Provided tea and coffee in the inpatient family lounge. • Participated on the hiring panel for the hospital’s President and CEO Julia Hanigsberg.
Family Leadership Program Year in Review 2015 – 2016
• Developed an educational workshop for schools about creating inclusive classrooms. The workshop, titled “The Parent Perspective: Inclusion and Acceptance in the Classroom,” was delivered to a number of teachers groups in different educational facilities and the feedback has been very positive.
The presenters did an excellent job in challenging our thinking and opening our minds to all kinds of possibilities in how we could enhance the students’ experiences. The workshop has, to a large degree, inspired our staff to rethink their whole approach regarding inclusion and what that really means.” Peter Boross-Harmer, Principal, Ledbury Park Elementary and Middle School
• Developed a welcome orientation for outpatient families to help them prepare for appointments and access resources both at the hospital and in the community. • Shared our expertise with many health care organizations. • Collaborated with the Holland Bloorview Foundation to inform fundraising goals and strategy.
To learn more, contact Amir Karmali, family centred care specialist, at akarmali@hollandbloorview.ca or 415-425-6220 ext. 6420.
A FAC family leader was interviewed by Voices 4 Ability radio station about how family leaders partner with the hospital.
What’s next • In partnership with Holland Bloorview, advance options for expanded hours of service, support the upcoming mental health strategy and explore opportunities for a “care for the caregiver” program.
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Bloorview Research Institute Family Engagement Committee (RFEC) Who we are The Bloorview Research Institute Family Engagement Committee (RFEC) works in partnership with the Bloorview Research Institute (BRI) to engage families in all aspects of research. The RFEC advises and makes recommendations to promote family engagement in research and impact research decisions to ensure that research will make a difference in the lives of clients and families at Holland Bloorview and beyond. In 2015-2016, the Research Family Engagement Committee had 22 members that included 11 family leaders, the vice president of research, BRI team members and client and family integrated care team members. How we’ve made a difference • Provided input and guidance on 8 major BRI projects, including: Non-invasive brain stimulation research Designing accessibility guidelines Duchenne muscular dystrophy study • Developed a formal process for research institute scientists to engage family leaders. • Formalized a communication subcommittee and created guidelines for research communication materials. • Helped customize an electronic grants management system. 14
• Developed the “Quick Consult” process for scientists to gather feedback from families. • Developed the BRI’s “Participate in Research” website page, where families can learn about and get involved with research studies. • Finalized the process for family review on research grants.
Family Leadership Program Year in Review 2015 – 2016
Family leaders from the RFEC were guest judges at the Ward Summer Student Research Day Awards in 2015. RFEC family leaders participate and speak at many events at the hospital and externally.
What’s next • Develop a “Research Education 101” curriculum for family leaders and implement a delivery plan. • Explore opportunities for families to generate research ideas. • Plan and execute the Town Hall portion of the annual BRI Symposium.
Scientists and researchers have the expertise, but it’s really important that families are involved because they are the ones that know what is important to them. I know families can influence researchers and therefore the research outcomes will have a bigger impact.” Jan Magee, family leader
To learn more, contact Lori Beesley, family centred care specialist, lbeesley@hollandbloorview.ca or 416-425-6220 ext. 6337.
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Thank you to our donors We can’t thank our donors enough for their support of the Family Leadership Program. Their generosity helps ensure clients and families can meaningfully partner with Holland Bloorview in the development and delivery of care and programs at the hospital and beyond.
About Holland Bloorview Kids Rehabilitation Hospital Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. Holland Bloorview is a global leader in applied research, teaching and learning, and client and family centred care. We are a provincial resource transforming care for children with cerebral palsy, acquired brain injury including concussion, muscular dystrophy, amputation, epilepsy, spina bifida, arthritis, cleft-lip and palate, autism and other physical and developmental disabilities. Our vision is to create a world of possibility for kids with disability. For more information please visit www.hollandbloorview.ca
Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8 T: 416-425-6220 Toll-Free: 800-363-2440 F: 416-425-6591 E: info@hollandbloorview.ca
A teaching hospital fully affiliated with the University of Toronto
hollandbloorview.ca