The other evening I heard Mark Sakamoto give a reading from his beautiful book Forgiveness, this year’s Canada Reads winner. Mark was Holland Bloorview Kids Rehabilitation Hospital’s guest at an event where we were showcasing the work of the researchers in the Bloorview Research Institute and sharing our plans for the largest growth in our research history.
Mark drew a parallel between his grandmother’s lost voice because of Canada’s Japanese internment during the Second World War, to the missing voices of children with disabilities. Most literally, this parallel relates to children whose physical disabilities prevent them from speaking — the lifetime passion of our VP Research Dr Tom Chau (see a recent interview on the occasion of his winning a Governor General’s Innovation Award here).
Speech and having a voice is also what drives Dr Deryk Beal whose research in neuromodulation is leading the way in the development of new treatments administering very small electric or magnetic energy pulses to specific parts of the brain, triggering pathways that can potentially accelerate learning in areas such as language.
The voices of young people with disabilities are missing in less literal ways too: frequently from election priorities, from social policy, from the priorities of schools and school boards, from the ranks of employers and corporate boardrooms. This is changing, and Holland Bloorview is part of that change through policy impacts, awareness raising and cutting edge research relating to barriers to employment among many other activities. With a vision of the most meaningful and healthy futures for all children, youth and families, and a mission that includes social justice for people with disabilities, change in the world is as important to us as is extraordinary care, educating the next generation of doctors and clinicians, and transformational research.
I also want every member of the Holland Bloorview team to have a voice. Our No Boundaries strategy requires that courage and opportunity and we need to do what it takes to ensure everybody feels safe to have their own unique and diverse voice. That’s why Pride celebrations are important to Holland Bloorview and why I am proud of the many things that Holland Bloorview will be doing to recognize Pride in our walls and beyond them this June and why I’m equally excited to launch a search for an executive leader for equity, diversity and inclusion in the coming weeks.
May is speech and hearing month. Be a part of ensuring that all voices are heard.
This week as Torontonians we mourn lost lives and wish for speedy and complete recoveries for the injured in the tragic incident at Yonge and Finch. Events similar to this one have happened around the globe and with compassion we have expressed condolences to other cities and countries. Yesterday and today we receive these thoughts and words as our global community reaches out in solidarity to Torontonians and Canadians. I am grateful for the extraordinary work of first responders and of our colleague neighbours at Sunnybrook Health Sciences Centre and other local hospitals. We are fortunate to have such excellent and well-prepared healthcare colleagues and a system able to respond when tragically called upon. For Holland Bloorview employees and their families there is our Employee and Family Assistance Program (EFAP) for support for those who need it and I have encouraged our team to reach out to managers and human resources as needed. For our clients and families we have care teams and our client and family integrated care team and family leadership program today and every day.
One year ago we completed our strategic plan, No Boundaries. Our strategy is to put all of our energy towards enabling children and families to have the most meaningful and healthy futures by personalizing pathways, discovering for action and connecting the systems in which we work. We do this every day throughout our organization, at the point of care, in our teams, as we plan, through our budgets and as we engage our community, funders and donors for support. No Boundaries empowers each of us to make change every day.
No one has a monopoly on good ideas and that’s why we created the No Boundaries Fund to encourage all members of our Holland Bloorview team to launch ideas that bring No Boundaries to life and the No Boundaries Strategy Council to maintain our momentum. Great ideas happen anywhere, anytime and from any floor or department of the hospital. The Strategy Council had its first meeting last week. Our council includes “alumni” (former clients and youth leaders), physicians, frontline staff, managers, researchers, family leaders, members of health disciplines, of the Senior Management Team and includes 6 members who self-nominated. The Council will keep us honest and on track to keep the energy of No Boundaries alive at Holland Bloorview and they are ambassadors for our strategy. Have a question, comment or idea for the council? Reach out to Sean Peacocke, Holland Bloorview’s Manager of Strategy.
At this first meeting, Council was clear that we need to share more stories of where No Boundaries is taking hold and how we are making progress on our plan. For example,
solution focused coaching training is spreading, giving our team members the skills to understand what matters most to clients and families and put that in place through integrated and coordinated care plans to enable personalized pathways;
we’ve established a new director of commercialization role to enable access to new technology developed out of our research institute and to help scientists find industry partners;
we worked with clinicians, clients and families to develop a pilot for extended hours of service in some ambulatory services;
we used design-thinking methodology supported by our Centre for Leadership in Innovation to develop 2 new measures for inclusion in this year’s Quality Improvement Plan;
we are upping our digital healthcare game by enabling clinicians to have virtual visits with clients through the Ontario Telehealth Network
we’ve completed mapping of the various ways that our clients first make contact with Holland Bloorview to develop plans to enhance the first point of contact and identify ways that we can make the time between referral and service meaningful, i.e. providing access to helpful resources immediately for all clients, such a great education sessions for caregivers or group workshops to address immediate concerns
No Boundaries Funds are granted up to a maximum of $5,000 per request, with a total of $50,000 of donor funding available in 2018-19. With No Boundaries Fund grants staff can address pressing needs, identify new and emerging challenges and take advantage of opportunities as they arise.
Last year the No Boundaries Fund enabled a number of great projects including:
an app designed to use the power of artificial intelligence and crowdsourcing to help kids and families navigate services and programs (under development)
For this year’s No Boundaries Fund grant requests can be made from April 1, 2018 to June 30, 2018. If you are a member of the Holland Bloorview team, email firstname.lastname@example.org to submit your request. Share your idea with me for an opportunity to bring it to life.
In October 2015 Holland Bloorview launched the first program with a focus on STEM (Science, Technology, Engineering and Math) in the GTA for kids with disabilities, in partnership with FIRST® Robotics Canada. The HB FIRST® Robotics program began as a pilot program and has since expanded to offer classes in the winter, spring and fall for outpatient clients, from ages six to 14. To date, over 250 participants have registered in the program and taken away decision-making, problem-solving and teamwork skills through an innovative and creative learning experience that sparks their interest in STEM.
I first learned about FIRST® Robotics Canada when my son was a little kid and participated in FIRST®LEGO League. I was just blown away when I went to watch the first competition he participated in. The kids were motivated, the whole program taught skills far beyond the robot including communication and team work, and it was really fun. When I was at Ryerson University I worked with FIRST® Robotics Canada CEO Mark Breadner to bring the GTA FIRST® Robotics Competition to Ryerson’s Mattamy Athletic Centre and to bring Ryerson in as a sponsor.
Shortly after I became CEO of Holland Bloorview Mark came to visit me here and we thought there could be an amazing opportunity to bring FIRST® Robotics to a children’s hospital and particularly into the lives of children with disabilities. Ever since, FIRST® Robotics Canada has been an exceptional partner and is deeply aligned to our commitment to equity, diversity and inclusion and meaningful lives and futures for kids with disabilities. The FIRST® folks even have a Capes for Kids team!
This month I’m interviewing Lynn Rampertab, the robotics coordinator at Holland Bloorview, who leads the HB FIRST® Robotics program. Lynn has been with FIRST® Robotics Canada since 2008 specializing in STEM Education. She joined Holland Bloorview in 2015 to break ground on the HB FIRST® Robotics partnership.
What has been the response from kids who have participated in the program?
Some of the best feedback I’ve heard comes directly from our participants and their families. Participants have fun in the program and for some it’s given them an opportunity to explore their interest in computers and programming. Parents love that their kids are meaningfully engaged and eager to learn something new.
From my perspective, watching children arrive to their session with enthusiasm and excitement is always rewarding.
From your perspective, how do the kids benefit from learning about STEM and robotics?
Building literacy in STEM is a necessity in today’s technology enriched environment. STEM competence and confidence creates pathways to well-paying jobs and entrepreneurial opportunities in the fastest-growing fields, creating the potential for young people to achieve purposeful and prosperous lives. Often these opportunities don’t exist for children with disabilities. Exposing children with disabilities to STEM and robotics opens up a world of possibilities they may not have considered before.
How did the partnership between FIRST® Robotics Canadaand Holland Bloorview begin?
In the summer of 2015, FIRST® Robotics Canada was invited to meet with a team from Holland Bloorview to look at how we could collaborate on a program that promotes STEM-interest amongst children with disabilities. The FIRST® Robotics Canada team worked very closely with the multidisciplinary staff at Holland Bloorview to ensure we built in adaptive features that removed the barriers to access while maintaining a high degree of learning in both building and programming robots.
FIRST® Robotics Canada developed the curriculum, provided expert teaching leads to facilitate the classes and recruited volunteers for the program. Holland Bloorview created the adaptive features and helps to recruit additional volunteers, when needed.
A great example of this collaboration is the Communicator 5 program, which allows a child that uses a hummer switch to interface with our LabView-based computer program. We have also created digital files that allow children to build virtually instead of physically and use hand-over-hand techniques, where a child’s hand rests on top of a volunteer’s while they perform activities, among other accessibility features to further enhance participation.
How did you get involved with FIRST® Robotics Canadaand end up leading the program?
I started in FIRST® Robotics Canada as a parent who watched my own children find something they were passionate about while learning real world skills like problem solving, critical thinking, teamwork, communication, presentation and time management. The turning point for me was watching my children help other teams at a competition even though they were competing against them. It was inspiring to see. As my children become more immersed within the program, I became a volunteer to stay connected to them and share in an activity that they felt passionate about.
After a couple of years, I was offered a position and I jumped at the opportunity to continue working to spread the principles of this program beyond my own community. FIRST® Robotics Canada gave me the opportunity to make a real difference and challenged me with many new initiatives. My work with FIRST® Robotics Canada led me to Holland Bloorview.
What are the key factors that have made the program a success?
It was important to make sure the HB FIRST® Robotics program included STEM concepts coupled with meaningful participation and real world skill building opportunities. We’ve also embedded a rigorous research and evaluation component in the program to help ensure that we are meeting the needs of children and youth moving forward.
The success of this program has really been threefold. The partnership Holland Bloorview has forged with FIRST® Robotics Canada, the sponsorship we have received from Capital One and Argosy Foundation and the access to passionate staff from multidisciplinary backgrounds have all been key ingredients to our success.
What’s the one thing about developing or running the program that has been the most challenging?
One of the biggest challenges I had at the onset of developing this program was my own mindset. I had never worked with children with disabilities and had no idea what to expect. I found that when I shed my own biases and recognized that each child learns in their own unique way, it opened my mind up to new possibilities. Then we were able to create a program that meets all our goals of fostering life skills, self-confidence, communication and social skills, while increasing interest in STEM.
As this program moves forward, we continue to develop lessons that are focused on computer programming and building concepts and we work with other Holland Bloorview staff to make sure they are accessible. We work with each child and their family to develop a unique learning strategy that allows them to participate meaningful both with the program content and their peers.
Talk about the plans to offer the program at other hospitals and organizations for kids with disabilities
In a concerted effort to connect the system, Holland Bloorview has linked with Children’s Treatment Centres to advance collaborative partnerships and fill gaps so clients across Ontario can participate in robotics programming. Examples of these partnerships include KidsAbility in Cambridge, ErinoakKids in the GTA and Grandview Children’s Centre in Oshawa who all have plans to run their first pilot in the fall of 2018.
Last month during National Pain Awareness Week we welcomed young people, families, pain clinicians from across the province from the Pediatric Chronic Pain Network, representatives of the Ministry of Health and Long-Term Care and Dr. Hoskins’ office, and the teams from Holland Bloorview Kids Rehabilitation Hospital and SickKids to celebrate the success of the first two years of the Get Up and Go: Persistent Pediatric Pain Service, a truly innovative and life-changing program for young people living with chronic pain and a first of its kind in Canada.
Persistent pain among Canadian children is a growing area of concern. A recent systematic review of prevalence studies found that up to 38 per cent of children and adolescents will suffer from chronic pain, and up to 8 per cent of these children will develop a significant pain-related disability. This can lead to long-term opioid use, social isolation, declining attendance at school, sleep and mood disruptions, and emotional and financial stress for families.
This is why the Get Up and Go program is so critical. The program helps young people and their families, who experience persistent pain and struggle with many of these issues, get back to living their best and healthiest lives.
This was a need that was identified by staff and families at Holland Bloorview and SickKids. The Get Up and Go program is an excellent example of how this kind of partnership can work and of course, it couldn’t have happened without the support of the Ministry of Health and Long-Term Care.
The four-week intensive program is unique in Canada because it offers both an inpatient and outpatient component. Participants spend the first two weeks as inpatients at Holland Bloorview in a highly structured rehabilitation program, followed by a two-week outpatient program that is designed to support the transition back to their home and community.
The multi-disciplinary team is led by a physician and nurse practitioner, and includes psychiatry, psychology, physiotherapy, occupational therapy, social work, nursing, dietary, pharmacy and therapeutic recreation services drawn from both SickKids and Holland Bloorview.
Staci Berman was one of the first participants in the program and shared her story of being injured playing basketball. As Staci put it: “My pain latched onto me and became the newest part of me. This was the part that kept me bed ridden, unable to go to school for 40 days, 2 years of my childhood, taken over by my pain.” In describing the impact of Get Up and Go, Staci reflected:
“When I got to Holland Bloorview I had lost all muscle in my right leg and I could barely walk. We persevered tirelessly to rebuild the strength and flexibility in my leg and body overall. …The Get Up and Go program has rebuilt me not only physically, but mentally. They have given me back the confidence that I lost all those years ago along with everything else that I lost from the pain.”
Jodi Seguin’s daughter Lauryn was another client in the program. Jodi reflected on the impact not only on her daughter, but on the whole family:
“What I didn’t know going in to this program was that as much as this team was going to help my daughter, they were also going to help my entire family. My husband and I were involved in group, and one-on-one sessions, we were taught about mindfulness (not for Lauryn but for us!), we were encouraged to share our frustrations and fears, and we had countless opportunities to talk about the stress and worry we had experienced over the last year. We were also given a toolkit full of ways to help Lauryn when she returned home.”
This partnership has continued to advance pediatric pain management in for Ontario’s children. As Dr. Mike Apkon, CEO of SickKids, reflected in his remarks: “We continue to build on our long and close relationship with Holland Bloorview because we know the best outcomes for our patients and families happen when there is a coordinated approach across different health-care providers. Our Kids Health Alliance partnership, which we launched earlier this year [along with CHEO-OCTC], arose from the need to better serve kids and their families that have to navigate a complex network of providers.”
With the creation of Get Up and Go in 2015, youth no longer needed to travel to the United States to receive this type of intensive and highly-specialized service, saving the province up to $2 million dollars annually. This is the right care at the right place for the right price.
What matters the most, and the reason our teams get out of bed each morning, is the impact on the lives of young people and families. No one can say it better than a mom. As Jodi Seguin said of her daughter Lauryn’s journey:
“Lauryn couldn’t walk when she came [to Holland Bloorview and] only 3 weeks [later she was] running. The strides she was making, on the pavement, and in this program were mind blowing and it was all due to a small group of incredibly dedicated people who were with her (and us) every step of the way. … The girl who hobbled in to the hospital, on her first day, only 4 short weeks prior, sprinted out the door on her last day.”
This is why we get out of bed every morning. Congratulations to the Get Up and Go Team and all the clients and their families.
Holland Bloorview families and staff came together for special celebration of life in the hospital’s Spiral Garden this summer to remember children who have died. Social worker Barbara Germon helped families plan the event. Barbara, who has been at the hospital for 32 years and currently works in our child development program, shares some of her thoughts about the celebration and coming to terms with grief.
On December 7, Holland Bloorview is hosting a workshop titled “Coping with the Loss of your Child at Different Stages.” Information about this event is available on the hospital’s website. The next celebration of life event at Holland Bloorview is June 9, 2018.
Can you describe what it was like to be at the celebration of life event?
The entire event was very positive and uplifting. You could see it was emotional for many who attended, but also a healing experience. The sun was shining and there was a lovely breeze. There was a staff musician playing guitar. We called the names of all of the children and then followed the parents to dedicate a ceramic butterfly to all children past and present. The butterfly was designed by an artist who works at the hospital. It was a very beautiful and moving experience. Several children, including brothers and sisters, and grandparents and other relatives participated.
What was your role in the event?
I led the committee which is made up of three parents and three staff. I wanted to make sure the day evolved and the outcome was what the committee envisioned it to be. I also had the honor of reading the names of all the children and reconnecting with the families.
Can you talk about the process of partnering with families and planning the event?
The experience of working on the committee with the parents was very inspiring for me. I really enjoyed listening to the parents and learning about what would be most meaningful for them in creating this day.
I know the event is important for families – can you talk about the significance of the event for staff members?
It offered staff who attended a way to reconnect with parents and honor the children they grew to know and love. There are some families staff hadn’t seen since the child passed away. It is a loss for professionals when a child dies. A memorial celebration is part of their grief process and how they come to terms with it.
As a social worker, what have you learned over the years about supporting families during end of life care and the grieving process?
Families of children with special needs feel a great sense of support from other families. They also feel staff who knew their child understand their journey. Some families may feel friends and family are unable to fully relate to their situation or know how to offer support, especially if the child was medically fragile. As a result, when a child dies, parents may feel more isolated. This is termed a type of “disenfranchised loss.” That is why it is so important that we take extra care to support families of children with special needs and help them stay connected to others who have walked a similar path.
I learned that grief is not linear and there is no set path. People move in and out of grief in their own unique way. It’s also important to particularly recognize fathers, as their grief can sometimes go unnoticed. Grief can take time and work and can catch people when they least expect it. It is very essential to support siblings as well. It is helpful for each family member to find a way to remember and honor their loved one and find meaning as they move forward.
What thoughts would you share with other clinicians if they are supporting families through this part of their journey?
It is not easy for us to talk about death. I think the more we are able to bring issues out in the open, the more comfortable we will be in our efforts to support families. When we talk about it we can feel more able to support each other and the families we work with.
Being a health-care provider can be emotionally challenging, how do you take care of your own mental health and wellbeing?
I believe strongly in the value of reflective practice. We need to acknowledge our own humanity so that we can support others in their journey. Self-care is a key ingredient to this process. I have to reflect on my feelings all of the time. When I feel I am overwhelmed, I gain strength from friends and family and take time for myself to refuel. It is important that we take time if we are going to support others.
How has Holland Bloorview’s approach to supporting families during end of life care and the grieving process changed over the years?
I think end of life care and grieving is starting to be discussed more. We are acknowledging this as a part of our work here. Some of our clients have complex needs. I am part of a Centres for Leadership group that is also looking at advanced care planning and starting these conversations with families before their child may become ill. We are starting to create a holistic approach to care and this means that sensitive issues can be discussed at every part of the journey.
What more can Holland Bloorview do to support families during end of life care and the grieving process?
We are hoping to provide more education to families and staff. We are also looking at different models of group support. Through advanced care planning we can open conversations earlier and begin to support families at all stages of the lifecycle. We want to everyone to feel more comfortable talking about grief. We hope families will feel that support is available if their child passes away.
What’s next for the celebration of life event?
We are hoping to have an annual event each June and we already have a date picked out for 2018. We are also planning an evening for families in December where we will be inviting a speaker to present on one of the many aspects of the grief journey. We have also talked about a coffee group to provide further support to families. The committee is discussing how we can provide more opportunities for siblings too.
With less than two weeks to go until Holland Bloorview’s accreditation survey I couldn’t imagine a better topic to post a blog on for October.
What is accreditation?
Accreditation is a voluntary review process, including an onsite survey by health-care experts from Accreditation Canada. Accreditation is an opportunity for us to demonstrate how we provide excellent care by aligning quality and safety improvement initiatives with national standards and best practices. The survey team will be with us from Monday, October 16 to Thursday, October 19, 2017. Most importantly, accreditation is an opportunity to showcase our quality and safety excellence.
Accreditation Canada develops standards and required organizational practices. We see these as an opportunity to prioritize improvement initiatives across Holland Bloorview. We’ve been fortunate to have amazing leadership from staff and family leaders across six accreditation teams: Governance, Leadership, Medication Management, Infection Prevention and Control, Ambulatory Care, and Rehabilitation.
In addition, all of our family leaders involved in accreditation have come together in the Family Leader Accreditation Group which is the most visible symbol of the commitment we made in the No Boundaries strategic plan to evolve client-centred quality and safety. In the plan we say, “We will strive for the highest quality care and safety in everything we do – our quality and safety measures will reflect what children, youth and families truly value.”
What happens during the survey October 16-19, 2017?
The accreditation surveyors will meet with teams related to each of the standards all of which include family leaders. They’ll also meet with community and service partners, meet with a group of family leaders, conduct tracers and walk through our halls taking the opportunity to observe Holland Bloorview in action and to ask questions of any staff they encounter. This is such a great opportunity for all of us to voice our knowledge of and pride in the quality and safety practices at Holland Bloorview. For Holland Bloorview staff, there are great tips and tricks to help you feel ready for the survey week on our intranet site (viewfinder).
Why am I so confident?
Sometimes the count down to the accreditation survey can feel a bit nerve-wracking. Perhaps you’re thinking it sounds like cramming for a 4-day final exam! This isn’t how I view accreditation. Think instead about accreditation as one of the key ways we live our value, excellence (one of our 5 values along with courage and resilience; compassion; equity; and innovation) and how we connect what we do each and every day at Holland Bloorview to our new vision: The most meaningful and healthy futures for all children, youth and families. Accreditation is part of our commitment to continuous learning and continuous improvement. The survey isn’t about finding failure, it’s about sharing how we all contribute to a strong safety culture and doing it in a way that keeps children, youth and families at the heart of everything we do.