CEO Blog: It’s time to end the cycle of disability stigma

Imagine your wonderful child coming home every day from school and telling you she ate lunch alone because no one would sit with her. Why? Because she uses a wheelchair.

Imagine facing stares and whispering when going to the grocery store with your child or the clerk that doesn’t even try to understand your child’s speech and instead ignores them and talks to you.

For kids and youth with disabilities and their families, these are every day realities. Kids with disabilities want to be loved, appreciated, move, laugh, learn and play just like all kids do. But too often they’re hindered…not, as you might think, by their disability but by the actions, attitudes and beliefs of others, including their teachers, classmates, neighbours, even by their communities.

As a result, kids and youth with disabilities face far too many frustrating, heartbreaking and spirit-killing barriers – barriers caused by stigma.

They routinely face stares, whispers, name-calling, social exclusion, bullying and outright prejudice and discrimination.

It’s time to end the cycle of disability stigma and break down barriers and bias that hold kids and youth with disabilities back.

The urgency to shift thinking and attitudes becomes clear when you look at some alarming stats around disability:

  • 53 per cent of kids with a disability have zero or only one close friend.
  • Kids with disabilities are two to three times more likely to be bullied.
  • 25 per cent of kids with disabilities under 15 in Canada have unmet educational needs.

And the implications for the adults these kids will become are stark as well:

  • Only 49 per cent of Canadians with disabilities aged 25 to 64 are employed compared to 79 per cent for Canadians without a disability.
  • One-third of people with disabilities say they have been denied a job because of their disability.
  • Only 59% of Canadian youth with disabilities aged 18-21 attend post-secondary education compared to 72% of youth without a disability.

And we’re not talking about a small group. In Canada, there are 400,000 children and youth with disabilities. That’s the population of Halifax.

But go beyond stats and understand the pain, frustration and humiliation stigma causes.

Getting around in a wheelchair isn’t easy, but eating lunch alone at school every day really stings.

Putting on a prosthetic limb can be cumbersome, but hearing whispers or blatant name calling in the hallways or on the playground can be agony.

So too can never being invited to any birthday parties. Or not getting what you need to do your schoolwork, or being passed over for jobs that you know you could do with a few simple and inexpensive accommodations.

The time is now to make a change. We can’t do that unless we face up to our own bias, learn more and break the silence. Being anxious about offending or upsetting is not a good excuse to do nothing.

To get the conversation started, Holland Bloorview has launched a national public awareness movement called ‘Dear Everybody’ that’s focused on challenging and breaking down disability stigma and stereotypes.

Driving this movement are the words of kids and youth with disabilities, sharing their stories, their experiences and what they need the public to know to tackle the myths and misconceptions that exist about living with a disability.

Who better to raise issues people are too afraid to ask and put that information into the world, than those who experience the stigma every day?

Their messages are short and direct, such as:

“If someone’s voice is hard for you to understand, talk to them more. You will get better at it.”

“Not everyone in a wheelchair needs to be fixed.”

“If you’re inspired by someone with a disability, make sure they did something inspiring.”

For the kids having their experiences heard is empowering. For the public it’s enlightening.

To keep the conversations going, DearEverybody.ca is a terrific source of information and resources, including stories of lived experiences, recommendations for teachers, employers, health-care providers and others that can be shared, start conversations and break down stigma.

DearEverybody.ca covers major issues such as employment, bullying, friendship, education and health care.

It also provides tools to educate the public about the role they play in building an inclusive and equitable society that includes young people with disabilities.

Health care professionals, government departments and other groups can research, discuss and analyze stigma, but it’s the kids who are experiencing it each day who can deliver the most powerful message for bringing about change.

There is no time to wait for a world that fully embraces disability as a valued form of diversity. Every one of us needs to be a catalyst for change, and the place to start is by amplifying the words of kids and youth with disabilities themselves.

Go to DearEverybody.ca. Share the letter broadly. Do something today that makes your piece of the world more inclusive. Tell someone about the resources online. We call this “Dear Everybody” because everybody needs to act. And that means you.

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Julia
@Hanigsberg

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.

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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.

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Julia
@Hanigsberg

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.

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Julia
@Hanigsberg

CEO Blog: When is Accreditation Not about Accreditation?

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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.

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Julia
@Hanigsberg

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!

 

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Julia
@Hanigsberg

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.

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Julia
@Hanigsberg

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.

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Julia
@Hanigsberg