CEO Blog: Guest blogger Laura shares the importance of seeing all of her son, Wesley, and not just his special needs

img_4914My son Wesley is a five-year-old boy who loves sports, telling jokes and playing with his classmates. He wants to drive a bus when he grows up, he’d like new red shoes to match his glasses and dreams of having his very own ball pit, in our living room. Wesley is much like any other kindergarten student – bold, bright and sometimes unexpected – but you have to look past stereotypes to really see what he can do.

You see, Wesley has a lot of experience with the services at Holland Bloorview Kids Rehabilitation Hospital. He first came to the hospital as a toddler, after intensive cancer therapy for a brain tumour. During his treatments he suffered a devastating stroke and when we first arrived, he was unable to move his left side. He couldn’t swallow, hold his head up, or even cry.

At a glance, the boy you see now wears hearing aids, glasses, and splints on both legs and an arm. His left side is weak and he loses his balance easily. Wesley speaks only a few sounds and needs a walker or wheelchair to move about. “That poor little boy,” people sometimes say at first. But if you knew him, you wouldn’t be heard uttering that phrase. Accomplished, witty, charming and active are some of the words that best describe Wesley.

I like to believe that people are inherently good. I know some parents and special needs kids have had to deal with outright negativity and ignorance and that makes me sad. Thankfully, for us, it seems to be that people are just a bit unsure around a child who looks different or whose life they don’t understand. I try to give everyone the benefit of the doubt and Wesley is usually capable of proving me right. People want to get to know him and interact with him, they just don’t know how to, at first.

My favourite qualities in my son are his sense of pride and independence and his sense of humour. You might think a child who can’t really talk and needs so many assistive devices to get around couldn’t be funny or strongly independent, but kids like Wesley are rarely what the stereotypes might have you believe.

With signs and pictures, Wesley has been telling jokes since before he could make any sounds. He loves puns and rhyming words. He’ll say “Frogs eat fries!”, instead of “flies” and has talked about our trip to “Ha-why?-e” . He says he will go to a friend’s “birthday potty”, then breaks down in fits of giggles when we finally figure out the joke.

He’s very bright and will try patiently, and creatively, to make himself understood.  The first time this happened he was very young and didn’t have a way to say “other” or “chocolate”.  I was blown away when I realized that “I no want drink this milk. I want…cake milk” was his way of telling me he’d prefer chocolate milk!

His teachers and therapists can tell you he is fiercely independent. It probably isn’t the first thing you’d think when you see a child being lifted from his car seat into a wheelchair, or wheeled onto a pool deck and lowered into the water. Wesley will accept only the smallest amount of help necessary and if there is a way he can figure out to do something on his own, he will. He refuses to pedal his bike until we let go of the handlebars and we had to install a baby gate to stop him from sneaking to climb the stairs on his own.

Wesley was determined to participate in a triathlon after watching his cousins from the sidelines. You can tell he loves the independence of moving in the water and on his bike. This past summer, with a lifejacket, an adapted tricycle, his walker and his father carrying him between transitions, he completed his first triathlon! People from Holland Bloorview, family and friends, even strangers and race organizers, followed Wesley along the course to cheer him on. I will never forget how proud he looked – beaming – as he crossed the finish line to receive his medal. More than a few adults stopped us that day to say what an inspiration Wesley was to them. My heart was so full.

I think the way we communicate with Wesley happens to help when he’s meeting new people. He will sign and make attempts at saying words, and we repeat each word as he is going. Hearing the words repeated seems to help his speech flow, and it helps us both to confirm that we are understanding what he’s trying to say.

When we are out and about, at a restaurant or in a checkout line, people will overhear us talking with Wesley. I don’t feel like they are staring, but I do get the sense that they are intrigued by what is going on. Wesley has the usual 5-year old conversations that any kid has with their parents.

Wesley: “I want to eat French fries for lunch.”
Me: “Wesley, you can’t have French fries every day. We are going to eat lunch at home today.”
Wesley: “Oh…..ok…But TOMORROW, I want to eat French fries for lunch.”

I can see people inevitably smile at Wesley when I look up and catch their eye.  I smile back, both because I am a mom who is proud of her son and because I know that Wesley has just created a small bond with a new person. I can see people are surprised that he is able to communicate with us and even more surprised to discover that this kid, who looks and sounds different, is talking about the same things that any other kindergartener has on their mind. I can tell when the switch clicks on and people realize there is a bright and funny young mind trapped behind Wesley’s garbled baby-talk and awkward signs.

After spending a little time getting to know him, Wesley’s personality and abilities shine through and there’s no way anyone would think of him as a “poor little boy” anymore.  Once people catch a sparkle of what lies underneath, they stop seeing him as just a product of his limitations and adaptive equipment. They begin to see the impressive kid he really is…the kid who loves to tell jokes and race triathlons.

All mothers and fathers think their children are pretty amazing, and special needs parents are no different. We love our kids and are proud of who they are and their accomplishments. Like all parents, we help our kids deal with challenges they face, we enjoy their personalities and celebrate their strengths.

Wesley manages to win over complete strangers before we’ve paid for our groceries, but for every Wesley out there, there are kids with different challenges who may not be able to make those connections as quickly. They may not be able to flash a cheeky grin. They may not be able to make eye contact or control their hands to give a high-five and wave hello. Some kids look even more different than Wesley does…but I guarantee you, there is a whole amazing and unique little person inside every disabled kid you see…just ask them!


You can learn more and help support essential programs for Wesley and other kids like him, such as respite care, family support, music therapy and camp.

CEO Blog: The Care Kids Deserve Today and Tomorrow

img_6788

No matter how long you’ve been out of school (and for me it’s 25 years since my law school graduation) September feels like the real New Year and where did September go? As we start October there is a dizzying array of things happening both within the walls of Holland Bloorview and outside.

As I talk to colleagues across Canada, understanding how to deliver care in a more seamless, coordinated way is always top of mind. Every region has been reviewing the way it organizes healthcare and associated services and that trend shows no sign of slowing down. Closest to home this is reflected in Ontario’s Patient’s First policy.

And it’s not just across Canada: these are the same questions being asked globally and align to the questions and strategies of the World Health Organization (WHO) in its WHO Global Strategy on Integrated People-Centred Health Services 2016-2026.

I hear versions of exactly the same thing in the hallways of Holland Bloorview. The #1 thing I hear from families is that we need to make it easier to manage the multiple services, providers and institutions their children interact with from specialists to schools, to emergency departments, primary care physicians and community paediatricians. Families understand that Holland Bloorview can’t possibly offer every service but can’t we partner more effectively to make meeting the child’s needs more seamless?

And as a team totally committed to client- and family-centered care, we are asking ourselves similar questions:

  • How can barriers to providing the best care be removed?
  • How can we make admissions and discharges safer, more efficient and easier?
  • Is there a way we can access the resources our clients need most when they need them (mental health is an example)?
  • Why is the transition to adult services so difficult for clients and families? How can we improve it?

These are the right questions to be asking and over the next six months I hope we will be asking ourselves lots of hard (even scary!) questions as we chart out our next strategic plan. As we close out the final year of Leadership in Childhood Disability 2012-2017 we have the opportunity to carve out our priorities for the next stage of our future. Now is the right time to pause and reflect on the impact we have already had in creating better care and a more inclusive world for our clients and families, and to create a bold and aspirational strategy for our future.

How will we do this? By asking big questions. Led by the board of trustees, everyone who works at Holland Bloorview, along with clients, former clients, families, volunteers, donors, partners along continuum of care in healthcare, children’s rehabilitation, adult services and other sectors of impact to our work with children and families, will have a chance to contribute their insights and experience to help inform the questions. We will then be diving deeper into the themes that emerge. By spring we will be finalizing our goals and objectives.

As we do so, we will continue to ask very pointed questions about coordinated and thoughtful care and take action to resolve them. As an example: building on discussions that have been taking place over the past two years about building better networks of paediatric care, I’ve joined with the CEOs of Sick Kids and the Children’s Hospital of Eastern Ontario/Ottawa Children’s Treatment Centre (CHEO) to talk about how our three organizations might work together to achieve a vision of a more coordinated, consistent, high-quality system of care for children and their families especially those children with complex medical needs and disability (while maintaining our independence and local accountability to our boards of trustees).

And, thinking beyond these three institutions, how might other hospitals and service providers including rehabilitation, community paediatrics and mental health be involved? How can we all build on our own unique identities and strengths to contribute to the bigger picture of coordinated best quality care for kids?

Big, scary questions indeed.

Over the next six months we will be pushing hard to ask these types of questions to help us develop our plan for the future ahead.  My hope is that the questions we ask will turn heads, drop jaws and challenge the status quo.  If not, we probably aren’t pushing ourselves hard enough.

#BakingGood

HBH-UX-Desktop-Wireframes-v1.2

This week Holland Bloorview Kids Rehabilitation Hospital will be launching a major public awareness campaign designed to spur conversation about childhood disability. We developed this campaign with Havas Worldwide Canada, an advertising agency, who is generously donating $1 million in creative services to us to launch this and future campaigns demonstrating their deep commitment to making a difference in the lives of kids with disabilities and their families.  You’ll be seeing our campaign in print, on TV & radio, websites and digital billboards.

If you are a regular reader of this blog (or follow me on Twitter or LinkedIn) you’ll know how deeply committed I am to raising awareness about childhood disability and breaking down stigma associated with disability. It may be 2016, but there are still many people who are frightened by people with disabilities, think because someone can’t talk they can’t think, don’t expect them to have families or have meaningful lives let alone be independent, joyful, employed and included in all society has to offer. Having deep conversations that illuminate disability isn’t new for Holland Bloorview. The BLOOM Blog is a great example of how we have long been bringing visibility to disability.

This campaign is designed to be bold and unexpected: words we often use to describe the kids we serve at Holland Bloorview. We draw from the aphorism “when life gives you lemons…” to shake up stereotypes. And we use a lighthearted (and delicious!) approach to deliver a serious message: don’t underestimate kids with disabilities. We want you to be part of a big conversation about children with disabilities and the adults they’ll become, and join with Holland Bloorview – our extraordinary teams that deliver care and through research and teaching that develop the future of care – in making a big difference in these lives.

Picture the best future you could expect for anyone you love… That’s the life we picture for EVERY child with a disability, physical or intellectual, whether they were born with it or acquired it through accident or illness.

For more information about the campaign go to BakingGood.ca and for more information about Holland Bloorview and the work we do to transform lives and to understand how to access our services go to HollandBloorview.ca

CEO blog: Popsicles and leadership

As regular readers of this blog know, I have monthly “Coffee Chat with Julia” (last month was a summer “popsicle chat”) opportunities with the Holland Bloorview team.

Why? I know that I can lead better by deepening my relationship with my team. These informal chats help me to do that. To make effective decisions you have to have multiple sources of insight: evidence and data, plans, surveys, external reviews, etc. This is especially important to me as we close out year 5 of our current strategic plan “Leadership in Childhood Disability” and develop our strategy for the next 5 years. And we can’t forget that I am still in my learning journey at Holland Bloorview.

Now, with my second anniversary at Holland Bloorview in sight, I’d like to supplement the coffee chats with “Skip Level” meetings. No, there is no actual skipping involved (but I probably could be convinced…). These are meetings I’ll be scheduling with the people who report to my direct reports. In other words, my office will be reaching out to schedule ½ hour meetings with people who report to Judy Hunter, Golda Milo-Manson, Stewart Wong, Diane Savage, Ben Sybring, Tom Chau and Marilyn Ballantyne.

So what am I likely to ask during the meeting?

What’s one thing you love about Holland Bloorview (or your job)?

What’s one thing you wish were different (and how might you make it so)?

What should I know about you?

What would you like to know from/about me?

This kind of information gathering helps me do a better job of supporting the whole Holland Bloorview team and opens and sustains lines of communication. Listening to people within Holland Bloorview is a critical source of insight for me. And listening to as diverse a set of internal voices with different points of view will deepen that insight.

It’s pretty simple: Meet more people. Chat more with greater intention. Learn and reflect. And then, together continue to build on the boundless potential of our clients and families.

Julia
@hanigsberg

CEO blog: What is a Coffee Chat with Julia?

Shortly after I became President & CEO at Holland Bloorview Kids Rehabilitation Hospital, I started a regular Coffee Chat. We’ve scheduled them at different times of day and different locations in order to make it as convenient as possible for staff to join me for a drink and a chat. In some cases we’ve targeted particular groups with special outreach, e.g. we did a students’ coffee chat and we scheduled one on the 3rd floor with particular thought given to a time of day that would maximize nurses being able to attend.

So with another Coffee Chat around the corner (actually a “Popsicle Chat” in honour of the weather and locating the chat outdoors), I thought I’d share some of the FAQs about Coffee (Popsicle) Chat:

  1. Who is invited? EVERYONE! Whatever you do at Holland Bloorview you are invited. Work at registration – love to chat with you. Researcher – yup. Admin assistant – yup. Physician – sure. OT? PT? SLP? Uh-huh. Nurse – You betcha. Ops manager – okey dokey. Environmental services – why not?! You’re probably seeing the pattern. Come one come all.
  2. How many people usually come? It varies. I think it has ranged from 2 people to a dozen or so at a time. The numbers don’t matter – however many people come is the right number. I’m there for the hour.
  3. What do you talk about? It depends. Sometimes when I have something on my mind I’ll raise a topic, e.g. about 6 months after joining Holland Bloorview I started to talk about and wanted feedback on my priorities. I used a Coffee Chat to elicit that. Sometimes the time of year dictates what’s on people’s minds, e.g. is it operating planning season? Are we working on the Quality Improvement Plan? It’s a group chat so who is in the room dictates the topics. Whatever is on your mind is what we’ll be talking about. Some memorable chats included aboriginal ways of knowing and equity, diversity and inclusion; workload and how do you give the kind of care you want to when there are so many kids who need therapy; what are some of the new things going on in the health care sector outside of Holland Bloorview; why do I use social media and how do I think it benefits Holland Bloorview; and lots of other things. Oh and one time Dr Flap and Nurse Flutter created a “Coffee Chat Song” (of course they did!).
  4. How long does it last? I book Coffee Chat for 1 hour but no one (other than me) needs to stay that long. We’re all busy. Drop in and stay for a few minutes if that’s what you have. Stay for the whole hour. Come in and grab a coffee to go but at least stay hi.
  5. Will I cause problems if I give the CEO my honest opinions? Sharing what’s on your mind is what this is about. I can’t learn unless I know what people really think and experience working at Holland Bloorview every day. And I can’t lead without being a learner and a listener.
  6. Why do you do this? Okay so no one has actually asked me this but I bet some think it! I do it because it’s a great way for me to meet and catch up with people I don’t see every day. I like having a casual way to get a sense of what is top of mind particularly for frontline staff. I also want people to get to know me and feel free to ask me questions. Many do this in the hall or walking through spiral garden and that’s great too. And, well, I like coffee and it’s fun!

So that’s the 411 on “Coffee Chat with Julia.” Can’t wait to see you at one soon!

Why Equity, Diversity and Inclusion is So Important … Especially Today

Transitionpassportteam_BLOGimageJune2016Holland Bloorview’s 2016 Sheila Jarvis Award Winners

Holland Bloorview Kids Rehabilitation Hospital’s June 13 Leadership Forum was on the topic of equity, diversity and inclusion. This had been planned months ago, but the discussion couldn’t have felt timelier having followed less than 48 hours after this weekend’s tragedy in Orlando, Florida.

As I usually do, I opened the Leadership Forum with remarks and this is the substance of what I said.

We are fortunate to be able to sit in this beautiful hospital building on lands that have belonged to First Peoples for thousands of years. Most recently these have been the recognized lands of the Mississaugas of the New Credit First Nation. Meegwetch. Thank you.

It is also June and that means Pride Month, so happy Pride to all of you! For those who observe, it is Ramadan. Ramadan Mubarek. And this weekend I participated in a session on Jewish approaches to disability and inclusion hosted by the Miles Nadel JCC in downtown Toronto for the Jewish holiday Shavuot. In as culturally diverse a city as Toronto and as culturally diverse a community as ours there is always a multitude of different celebrations and observances going on at any one time, something that always makes me feel very fortunate.

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.

Today, we can expect many people’s backpacks to be heavier because of the act of hate and violence that happened this past weekend in Orlando. There will be clients, caregivers, family members, volunteers and staff who when they walk into our hospital today, will feel a bit less safe than they did on Friday. There will be other members of our community (clients, families, staff, volunteers, etc) who will feel like they will get more funny looks, more scrutiny today, because they look like someone’s idea of an “Islamic extremist.” Their backpacks will be heavier today, and in the days and weeks to come.

At Holland Bloorview our vision is a world of possibility for kids with disabilities. The way we frame and realize equity, diversity and inclusion for our organization will be in keeping with our DNA – our values, vision, mission and our belief in the strength, possibilities and optimism in our work with kids of all abilities. We are probably among the world’s experts on strength and resilience…taught by our clients and families.

Equity, diversity and inclusion is important every day, especially for an organization whose soul is in serving children who face being marginalized in so many aspects of their lives. Building a better, more inclusive, more just world for our children is important every day…especially today.

CEO Blog: Connecting2care for children and families

bloorview jul07-6 (Medium)

This year Holland Bloorview Kids Rehabilitation Hospital is celebrating an important milestone in our 117 year history – 10 years in our new state-of-the-art, accessible, child-friendly facility recognized by the International Academy for Design and Health as “an inspirational building…which speaks to a child’s right to participate in our society.”

We have come a long way since 1899 to become the largest rehabilitation hospital in Canada focused on improving the lives of kids and youth with disabilities.

Read my full column in the June issue of Hospital News.

Julia
@hanigsberg