CEO blog: Advancing health equity – because it’s 2017

Last week, Holland Bloorview Kids Rehabilitation Hospital VP of Programs and Services, Diane Savage, and I were fortunate to be able to speak at the annual Pediatric Health Equity Collaborative conference, which was hosted by Holland Bloorview.

The Pediatric Health Equity Collaborative is an outgrowth of the Disparities Leadership Program at the Disparities Solutions Center at Massachusetts General Hospital. Five Holland Bloorview leaders attended the program in 2014 and 2015 to advance our work of equity, diversity and inclusion. The Collaborative works to establish best practices, lessons learned and recommendations with regard to race, ethnicity, language and other demographic data collection in pediatric care settings.

Among the organizations participating in the conference were: Disparities Solutions Center at Massachusetts General Hospital; Boston Children’s Hospital; Children’s Mercy Hospitals and Clinics; Holland Bloorview Kids Rehabilitation Hospital; Johns Hopkins Medicine; Monroe Carell Jr. Children’s Hospital at Vanderbilt; Sinai Health System (Toronto); Nationwide Children’s Hospital (Columbus, Ohio); Nemours Children’s Health System (Wilmington, Delaware); Seattle Children’s Hospital; The Hospital for Sick Children (SickKids) (Toronto); and St. Christopher’s Hospital for Children (Philadelphia, Pennsylvania).

At Holland Bloorview we are proud of our commitment to equity, diversity and inclusion. Over the last five years we have embedded structures such as our Equity, Diversity and Inclusion Steering Committee, our grass roots Equity, Diversity and Inclusion (EDI) Council and we have seen the evolution of our employee social committee which has taken leadership in hosting different celebrations of diversity in partnership with the EDI Council.

Holland Bloorview kicked off Pride month by re-creating the Pride flag to celebrate the full diversity and inclusion of people with diverse sexual orientations, gender identities and gender expressions within our hospital and the community.

Some of our key successes include:

  • an organizational equity survey of staff, the results of which help us prioritize and plan
  • our respect campaign to raise awareness and promote mutual understanding
  • an equity lens toolkit to bring EDI to the design of new services and organizational structures
  • health equity client and family surveys to understand who we serve and how care is experienced

And, as is always the case at Holland Bloorview, we have co-created these approaches with our child, youth and family leaders and our Client and Family Integrated Care team.

We know our communities at Holland Bloorview are diverse culturally, economically and geographically. Nearly 50% of the population of Toronto immigrated to Canada and nearly 50% are visible minorities. Toronto is also home to some of Canada’s largest urban indigenous communities. It is imperative we better understand the communities we serve or we will not be able to deliver the kind of care that creates the most meaningful and healthy futures for our children and youth, and the adults they will become.

As part of modeling the change we want to see in the health care, we also have to do better at reflecting the diversity of the people we serve with our own organization. Being reflective of those we serve can help advance better health outcomes, effective models of service delivery, efficiency, heightened care experiences and a just culture of acceptance where staff, clients and families feel safe bringing their whole selves to their place of care and work.

Data from our own health equity survey tells us that nearly 30% of families we serve earn less than $60,000 per year and nearly 16% earn less than $30,000. This is in a city that has the highest cost of living in the country with some of the most expensive housing costs in North America. With this knowledge, we are currently exploring how financial barriers impact how often families miss appointments. It is only through this work that we can identify effective solutions to ensure our clients and families are getting the care they need.

We have to do better for the children and youth we serve, regardless of their backgrounds. We have to create health, social and educational systems that work for everyone and we need to partner in ways that are innovative, fiscally responsible and gives us opportunities to learn and share what we know.

It’s 2017 and it is simply no longer acceptable for the social determinates of health to determine child and youth health outcomes.



CEO Blog: Correcting a mistake

Back in 2016 I wrote a post called “Why Equity, Diversity and Inclusion is So Important … Especially Today” following a tragic shooting in a gay nightclub in Orlando, Florida in which I made the following statement, which I also referenced in a January 2017 blog:

“I don’t know who first shared with me the idea that we all carry around our individual (metaphorical) backpack. It might have been Holland Bloorview’s Louise Kinross or something I read in her wonderful BLOOM Blog or maybe I picked it up somewhere else. In our backpack we carry with us our experiences, our perspectives, our life choices, our culture and tradition, even whether getting the kids off to school this morning was smooth or WWIII! And as it is an invisible backpack, we can’t ever know what’s in the one that another person carries. But we know they carry it, and it affects who they are, what they say, how they react.”

Just today I ran into what I think the source is for the idea of the “invisible knapsack” – feminist and anti-racism scholar Dr. Peggy McIntosh. In her analysis, included in “White Privilege: Unpacking the Invisible Knapsack,” she introduces the dimension of privilege into discussions of power, gender, race, class and sexuality. In the piece, Dr. McIntosh encourages individuals to reflect on and recognize their own unearned advantages and disadvantages as parts of systems of power: “In unpacking this invisible knapsack of white privilege, I have listed conditions of daily experience that I once took for granted.”

When I used the idea of the “invisible knapsack” I wasn’t using it in Dr. McIntosh’s sense of a way to examine one’s own privilege, but instead in the sense of a means of insight into other people’s lives and experiences.



CEO Blog: When is Accreditation Not about Accreditation?


What do Accreditation, developing a Quality Improvement Plan and strategic planning have in common? The quick answer at Holland Bloorview is engagement. The longer answer lies in a cliché – that the journey is as important as the destination.

In each of these important pieces of work, I’ve been impressed by how much meaning is being made of what can sometimes be “rote” exercises. Instead I’ve been witness to a strength-based approach that has helped us focus on what our “always” events need to be. And in each instance, the crucial ingredient has been engagement – the depth of knowledge, wisdom, creativity, and thoughtfulness demonstrated by our team, partner organizations in the community, parents, youth, and children we serve.

As important as any individual measure is on a Quality Improvement Plan, equally important is what it represents in terms of a stated organizational aspiration to address something meaningful. Data that goes to meaning can be hard to measure. It is relatively easy to measure the number of days wait for a certain procedure or appointment. What is the story that such a measure tells? How often do hospitals measure something because we can rather than because that measure accurately represents the aspiration to make a meaningful change?

This year there is a shift on the Holland Bloorview Quality Improvement Plan from measuring a process around follow up phone calls after inpatients are discharged to measuring child and family readiness for discharge. This is critical strategically for Holland Bloorview and for the system as we collectively prioritize transitions along the continuum of care, care close to home even for our most medically complex children and youth, and local accountability (see the government’s Patients First strategy and the Toronto Central Local Health Integration Network’s strategic plan). The measure will give our teams great insight into success and where we can make families even more ready for an important, highly anticipated, but also sometimes high-risk point in their rehabilitation journey.

Ultimately enabled by the leadership of our Board of Trustees, staff, children, youth, and caregivers hold the secret to understanding what quality and safety mean. That’s why animating our Quality Improvement Plan development with the knowledge of our Children and Youth Advisory Committees has been impactful. And it is why a trustee at a recent hospital event commented on the enthusiasm and engagement of our staff about Accreditation, a voluntary review process of our quality and safety practices by healthcare experts. Staff were truly interested in learning about the process and how they will each drive continuous improvement and excellence. I was a skeptic when told we were going to have two family leaders on each Accreditation committee for a two year period, but there was no shortage of interested family members and we’ve learned together through the process. Two of our family members were even recognized by the Canadian Patient Safety Institute for their leadership in advancing quality care through the Accreditation process.

To learn more about how we are thinking about strategy, Accreditation and Quality Improvement, check out our latest strategic plan blog post, Accreditation video and the overviews we have created for families and for children.

When is Accreditation not about Accreditation? When it is about engaging team, children, youth and families around charting a course toward the most healthy and meaningful futures for all children and youth.



CEO blog: Why am I so in love with Capes for Kids?


Kathleen Wynne Capes
(Left to right) Emily; Premier Kathleen Wynne, MPP (Don Valley West); Liam; me and Imaani. Together we showed our support for Capes for Kids during the Premier’s visit to the hospital last month.

Almost three years ago when I interviewed for the job of President and CEO of Holland Bloorview, I told the search committee that I didn’t want Holland Bloorview to be the best children’s hospital hardly anyone has heard of any more. It’s a phrase I’ve used a lot since, especially with the great Joint Communications Team that the Hospital and Foundation share and with my great partner-in-crime Sandra Hawken, President and CEO of the Holland Bloorview Foundation.

This year, Holland Bloorview launched Capes for Kids. From March 6-12 all sorts of people (and more than a few pets!) will be wearing capes to spread awareness of and raise funds for childhood disability. Participants will also be talking about the great work that Holland Bloorview does providing exceptional care, taking on groundbreaking research and discovery, and training the clinicians of tomorrow all in partnership with the world’s experts – the children and their families.

What is so exciting is how people have embraced the Capes for Kids concept. Because it was co-designed with families of Holland Bloorview clients, we were confident kids and parents would love it, but we’ve been wowed by how it has spread. More than 86 teams registered, more than $230,000 raised and counting, and over 1000 brand new donors, many of whom now know more about the needs of kids with disabilities than they did before! And more important than anything else is how meaningful participants are finding it. Check out this video to see what I mean.

I’ll be proud to be wearing my cape from March 6-12 as will so many of the Holland Bloorview team, kids, families, friends and supporters. And we’ll all be taking the opportunity to talk about the 7400 amazing kids we serve each year and kids like them around the province, country, and the globe. Together we can make sure they will have the healthiest and most meaningful futures and live in a world of possibilities!




Bright Futures: Bridging the Gap to Adulthood

By the time I turned 18, I’d been babysitting for years, I’d worked in retail as a cashier at Sam the Record Man, and I’d been a waitress serving appetizers at a bar attached to the Keg restaurant (anybody remember Brandy’s?). I had a wide group of friends in school and at these part time jobs. All of these experiences were unspectacular. These were all the typical jobs young people could be expected to apply for and get. I used my savings to travel for six months in Europe before starting university – also a very not unusual thing to do. I didn’t get the opportunity for these work, travel and educational experiences because I was exceptional. In fact, I was pretty darn average.

Fast forward a few decades (I won’t get into how many!) and two years ago when I became CEO at Holland Bloorview one of the first meetings I had was with David Coriat, the father of a former client and current volunteer, and a generous supporter of Holland Bloorview. David and I talked about a number of things, and for anyone who knows him, it wasn’t surprising that his greatest passion was reserved for talking about his daughter Jessica and how the path to adulthood for a young woman shouldn’t be so hard. With everything Jess has to give … shouldn’t it be easier?

I will never forget that conversation… and so many others I’ve had with parents of young people and many of our former clients. The words they often use to describe impending adulthood are surprisingly consistent: “the abyss” or “the cliff.” Why?

Research, including that of scientists like Dr. Sally Lindsay and her collaborators out of the Bloorview Research Institute TRAIL Lab, tells us the same thing: youth with disabilities continue to experience poorer outcomes in post-secondary education attendance, employment and independent living than their typically developing counterparts. Transition from paediatric health care to the adult health care world is also difficult and uneven.

  • One survey found 53% of children with a disability have zero or only one close friend
  • 59% of Canadian youth with disabilities, aged 18-21, attend post-secondary education compared to 72% of youth without a disability
  • Unemployment rates for youth and young adults with disabilities are high and more than half of those who finish school do not have a job

That’s why there is an urgent need for Holland Bloorview to step up and impact transitions across all moments of the lives of children with disabilities. These transitions start early and smoother early planning, for example, for transitions to school in the community, between elementary to high school, from hospital to home and community, set up children with the critical skills and experiences they need for their best possible life. Our job is to set young people up for brighter futures.

And it is important to emphasize that there are as many optimal futures as there are children. While sometimes people hold up “independence” as the best case, we know that for many of the children we serve at Holland Bloorview that isn’t possible or desirable. Developing a truly inclusive strategy means respecting the dreams and goals of every family in all its individual particularity: there are many wonderful lives composed of different experiences and we want to provide the tools and environment to support any of them.

Holland Bloorview’s Transitions Strategy will improve youth preparedness and planning, reduce barriers, change attitudes and close gaps so that youth with disabilities can access more opportunities with greater confidence.

How will we do this?

  • We will identify and challenge barriers to full participation and inclusion by breaking down stigma around disability
  • We will ensure that all Holland Bloorview staff have the training and resources to coach children, youth and families in planning for the future, so that every single Holland Bloorview client has a transition plan in place
  • We will expand and scale Holland Bloorview’s programs and services such as employment readiness, life skills, youth leadership and family support, based on real needs of families and supported by research
  • We will develop a ‘young adults’ bridging program to address the unique needs of 16-26 year olds
  • Partnering with leading adult service providers we will identify gaps and build joint strategies, including funding strategies, to meet the needs of kids with disabilities as they age out of children’s services
  • We will develop and scale a model to take the programs we know families value the most within our four walls and offer them through community partners so they can benefit individuals of all ages near and far
  • We will continue to conduct ground-breaking research to reduce barriers to employment, and create pathways to the future for our clients and kids like them around the globe

And stay tuned because there will be much more!

The young people we work with inspire us and we are excited and delighted to be doing this work that will be impactful to so many children, youth and families and will create a brighter today and a brighter tomorrow.

I started by telling you about the opportunities I got as a young person. I didn’t get them because I was special. I got them because I was average. Every young person has a right to the opportunities appropriate to them to enrich their future. At Holland Bloorview, supported by the Coriat family and their wonderful friends, we are going to make strides to make it so.



Hope and Solidarity

On June 14, 2016 I published a special mid-month post to my CEO blog. Holland Bloorview Kids Rehabilitation Hospital’s June 13 Leadership Forum was on the topic of equity, diversity and inclusion. This had been planned months before, but the discussion couldn’t have felt timelier having followed less than 48 hours after tragic gun violence at a gay night club in Orlando, Florida.

Today is another day to address violence in the world. Today we stand in solidarity with our Muslim brothers and sisters and especially with the family and friends of the victims of the tragic and deadly act of terrorism at a Quebec mosque Sunday night.

I don’t have any better words, than the ones I used last June. In talking to our leaders and subsequently on my blog I said:

I don’t know who first shared with me the idea that we all carry around our individual (metaphorical) backpack. It might have been Holland Bloorview’s Louise Kinross or something I read in her wonderful BLOOM Blog or maybe I picked it up somewhere else. In our backpack we carry with us our experiences, our perspectives, our life choices, our culture and tradition, even whether getting the kids off to school this morning was smooth or WWIII! And as it is an invisible backpack, we can’t ever know what’s in the one that another person carries. But we know they carry it, and it affects who they are, what they say, how they react.

Now, because of the act of hate and violence that happened in our own country there will be clients, caregivers, family members, volunteers and staff who today feel less safe than they did 48 hours ago. Their backpacks will be heavier today, and in the days and weeks to come.

Equity, diversity and inclusion is important every day, especially for an organization whose purpose is serving children who face being marginalized in so many aspects of their lives. We are probably among the world’s experts on strength and resilience…taught by our clients and families. And we pride ourselves on being leaders in compassionate care.

Embracing hope and solidarity even, and perhaps especially, in dark times, we must build a better, more inclusive, more just world for our children and all children. Inshallah.



CEO blog: Interview with accessibility advocate Ayesha Zubair

In this blog and part of my Q&A series, I’m interviewing Ayesha Zubair. Ayesha has been part of Holland Bloorview since 2001 – as a client, employee and now as a volunteer. She is currently an Enterprise Recruitment Research Specialist at RBC, where she leads business segment projects and HR recruitment initiatives. She is also part of the hospital’s Youth Advisory Council and recently participated in the National Youth Forum to help inform the development of Canada-wide accessibility legislation.

Ayesha Zubair

Ayesha completed her Bachelors of Human Resource Management (BHRM) at York University in 2013. She currently serves on the Accessibility Advisory Committee and Customer Experience Advisory Committee for Metrolinx and acts as a Board member for the Centre for Independent Living in Toronto (CILT).

  1. What are you reading lately? What’s on your nightstand (or kindle!)?

I could go on and on about books! Reading is my absolute favourite thing to do. I’m finishing up “Sapiens: A Brief History of Humankind” by Yuval Noah Harari – it is a fascinating perspective on our world and our society.

  1. Do you use any social media? Why or why not?

Absolutely! I’m on Facebook, Twitter, Snapchat, LinkedIn…you name it!

I used to be a youth facilitator for the ‘Computer for Kids’ project at Holland Bloorview and worked with clients and families on the inpatient units. My job was to help clients get set-up with computer access but also to work with clients to coach on the safe use of social media. I can’t help but see the power of social media in alleviating isolation especially for youth who are hospitalized. Generally speaking, social media plays a critical role in accessibility. It’s especially important for people with communication disabilities.

  1. Who have been your biggest influences?

Honestly, my family has been so great – I know everyone says that but I really couldn’t do it without them. Since my diagnosis at age 12, they never let me miss a beat. We had just immigrated to Canada and we didn’t know anything about disability – we never had to think about it. I guess what I appreciate the most about them is they didn’t treat me differently or let anyone treat me differently even though everything in our society and culture tells them otherwise.

Another great influencer was Dolly – a youth facilitator at Holland Bloorview. I didn’t always know Dolly in the early days of being at the hospital but she’s been an incredible mentor. She helped me figure out what my strengths were by providing me with opportunities to…try. That’s been the greatest gift anyone could have given me. It helped me figure it out and gain confidence along the way.

  1. What do you think your best quality is?

That’s such a tough question! Hindsight is 20/20 but I’d like to think that I am resilient. I stumble sometimes but I always manage to get back up somehow.

  1. What’s your main fault?

Quite frankly, I have many. I used to second guess myself a lot and I used to use filler words like ‘just’ and ‘I think’ but I received incredible coaching from my manager to help me communicate my ideas clearly and concisely.

Right now, I’m working on relentlessly prioritizing for impact. I have a million ideas a minute and I can’t be any other way. That’s who I am, I am curious and I like the big picture. That’s all good but what I need to be able to do is to relentlessly prioritize my ‘million ideas’ and act on the most impactful ones as priorities change. I used to think that prioritization was an occasional task – what I’m fast realizing now is that it needs to be constant, especially in our constantly changing world. I’m working on it and getting better but it’s a work-in-progress.

  1. What is your most treasured possession?

Oddly, my name. In my culture, names are ‘given’ and their meanings are carefully considered as they’re thought to have an impact on the child they’re given to. My name means “a prosperous life” in Arabic. To me, it is a present from my grandfather.

  1. What do you consider your greatest achievement?

To me, an ‘achievement’ is anything that I’m proud of; something that helps me hold my head up just a little bit higher. For me, my involvement with Holland Bloorview, in its various ways, is a personal source of pride and achievement. To me, we are disruptors. We continually change the way people see disability – how could I not be proud to be a part of that?

  1. Looking back, do you have one memory that stands out of your time as a client at Holland Bloorview? Is there one thing you know now you wish you’d known then?

I do wish that I had the opportunity to meet with a mentor earlier so I could have had a role model and known that I was also allowed to aim as high as I wanted, even with a disability. There are a lot of messages out there that tell you otherwise.

The one thing I’ve learned is that especially as a person with a disability, you are the teacher – for your family, your friends and your colleagues. Everyone looks to you to help them understand what you might, or might not, need and that’s not a bad thing.

  1. How did you end up working where you do? Can you tell me a bit about your job?

I work at RBC as an Enterprise Recruitment Research Specialist. I lead business segment projects and HR recruitment initiatives. My focus is on providing market intelligence and enabling data driven decision making across the organization.

I started my career in 2012 through an internship but I got my current position through happenstance! I had organized an event where I met an RBC recruiter who asked me to just come in to meet with my now-manager for a casual conversation and before I knew it, I was hired! Since then, I’ve received my second promotion and I’m looking forward to my new adventure as a Recruitment Research Specialist!

  1. I understand you have been active on the National Youth Forum. Can you tell us what that is and what you’ve been doing?

Yes, the National Youth Forum was an opportunity for youth across Canada to come together and advise on the most pressing issues about accessibility in Canada.

As a Youth Representative, I was invited to go to Ottawa in November 2016 along with other National Youth Representatives and we spoke about working together to bridge gaps in regional disparities. There were delegates who just wanted reliable internet! That really made me aware of my privilege as an inhabitant of Canada’s largest city because I know that technology is so critical for inclusion of people with disabilities.

  1. The federal government is exploring new accessibility legislation. Can you tell us what you think would be most important for this legislation to achieve? How are you making your views known?

For me, it comes down to three main issues:

  • Addressing policy barriers: A lot of our policies don’t really “talk to each other” and unintentionally end up creating barriers that are sometimes insurmountable.
  • Employment: I’ve seen the barriers people with disabilities can face when it comes to employment (and not just what I’ve faced but what others do too) and I will do everything I can to breakdown some of those barriers.
  • Effective measurement and implementation: It’s great that we’re doing this but is it realistic? Measurable? Will it serve us well in the years to come? Is it bold enough?

I’ve written a blog post and I continue to keep the discussion moving forward by keeping this top of mind in all my conversations, across all the organizations I am a part of.