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Look how far we've come

Earlier this year, Sheila Jarvis announced her intention to step down as President and CEO of Holland Bloorview Kids Rehabilitation Hospital after 18 years. Here she shares the challenges, milestones and triumphs during her remarkable leadership.

BLOOM: What changes have you seen at Holland Bloorview?

Sheila Jarvis: I came in 1996 and the most significant part of those early days was bringing together the Hugh MacMillan Rehabilitation Centre and Bloorview Children’s Hospital. The board, with the Ministry of Health’s blessing, had made a decision to merge the two children’s facilities—one being a small long-term care facility and the other being a small children’s rehab hospital. The vision was that we would build significant capacity in the field of childhood disability and be able to do so much more than we could as two distinct and separate entities.

The board was bold and courageous because both organizations had a proud history of accomplishment and success and this was a brave new world for them.

Our first tasks were to effect a very positive merger and to begin to plan for amalgamation of all operations on one site.

Along the way we created a strategic plan that spoke to a renewed organization that would reflect excellent care for clients and families and support a more ambitious agenda in teaching and research.

Early on we recognized we had the genesis of a really good client- and family-centred program, but we hadn’t thought a lot about how we would nurture it. In all of our future strategic plans we committed to truly embrace partnership with families and push it out as far as we could. Our engagement with clients and families and youth today has set the standard globally in this area.

In addition to transforming care through the merger we were engaged in the design of this new facility, recognizing that there wasn’t a facility anywhere in the world that we could model. Not only has the building been an award-winning design for children with disabilities here in Ontario, but it’s become a model for children’s rehab around the world.

At the same time, we wanted to enhance in a very significant way our research agenda and our goal was to create something novel in our field in Canada: a research institute entirely devoted to applied research in the area of childhood disability. We understood that in order to do that we needed to be recognized as a teaching hospital; when the University of Toronto governing council approved us as a fully affiliated teaching hospital, we had achieved another important milestone.

We were able to convince one of our two founding foundations—the Bloorview Children’s Hospital Foundation—to commit a significant endowment that allowed us to launch the Bloorview Research Institute in 2004.

We set out on a deliberate campaign to recruit a small number of excellent clinician scientists and investigators. We knew we’d never be big but we wanted to be impactful and we did that by recruiting the best.

Along the way our two foundations merged in 2009 to create the Holland Bloorview Kids Rehabilitation Foundation. Their first campaign raised funds to build our new facility, and we’re now in the midst of a significant campaign to raise funds for care, teaching and research.

Five years ago we created the Teaching and Learning Institute. Our dream was to create a student environment here that would be second to none. We did this for two reasons: we typically recruit from successful graduates who’ve spent time here and we wanted to build capacity in the field so that students here would take their knowledge and skill to other places around the world. We’ve been able to do that successfully and have played a lead role in interprofessional education, introducing it to disciplines beyond the traditional medicine, nursing and therapy—like bioethics and rehab engineering.

A few years ago we created an evidence-to-care unit with the goal of creating evidence-based practice guidelines in child disability where they don’t exist. This was started entirely from funds from our Foundation and has been matched by funding from the Ministry of Health. An example is the development of the assessment of pain toolbox for cerebral palsy. Our job now is to move this clinical practice guideline not just throughout our own hospital but to children’s rehab centres around the world so that everyone has a standard way of assessing and measuring pain. That will hopefully lead to meaningful interventions to alleviate pain that can be measured.

One of our goals in creating the research and teaching and learning institutes is to transform care by embedding and linking teaching, research and care within the organization wherever possible, and building on our family engagement.

BLOOM: What changes have you seen in the world of child disability since you came to Holland Bloorview?

Sheila Jarvis: Teaching and research has grown exponentially as a result of our efforts and it truly is having an impact on care. We’re not just doing research for the sake of doing research. We’re answering questions that are meaningful to clients and families. For example, we’re measuring the impact of the use of the Lokomat robotic treadmill on young people with cerebral palsy, and searching for a new drug to treat the behaviour symptoms in young people with autism. The research we’re doing is having a direct and immediate impact, not just here but around the world. We’ve been very successful in capturing national and international grants and in publishing.

BLOOM: What has been the greatest challenge in your role?

Sheila Jarvis: In my early days, pulling together an effective merger and achieving financial goals as well as strategic, programmatic and cultural goals, was more challenging than I estimated. When you look at the literature on hospital mergers, very few achieve financial goals. Bigger isn’t always better. We were successful because we stayed very focused. Integrating the two cultures took a long time, but I think was also very successful. As a result, we have a very cohesive culture today. In our recent staff engagement survey 80 per cent of staff responded and 78 per cent felt very engaged in the organization and fully supported our mission.

In the 18 years I’ve been here we’ve seen two cycles of significant financial constraint. The first period was at the end of the 1990s and early 2000s. Thanks to prudent fiscal management throughout the course of our merger, we were able to protect and even enhance some of our programs in spite of those financial challenges. Right now we’re in another time of fiscal constraint as we all work to help the province balance its budget in the next few years. I think because we’ve embraced strong fiscal management practices and endorsed improvement science, such as Lean, we are well positioned to continue to provide excellent service for clients and families in spite of our fiscal challenges.

BLOOM: What has surprised you during your tenure?

Sheila Jarvis: The fact that we’ve recruited an amazing staff who are so completely dedicated to our vision of creating a world of possibility for young people with disabilities and built a strong research and teaching foundation to support our vision. This has allowed us to achieve tremendous impact. I always describe it as a team effort and I think that’s really true: not just our staff, but our clients and families and an amazing cast of volunteers, including our board. We’ve also had remarkable support from the Ministry of Health and Long-Term Care and more latterly through the Toronto Central Local Health Integration Network. We’ve always had great support from our academic partners at the University of Toronto.

BLOOM: What are you most proud of during your time here?

Sheila Jarvis: Creating the physical space that’s allowed us to do what we do best and transforming care through our vision of teaching, learning and research. That’s what’s totally unique about our organization: there isn’t another hospital that we’ve found that knits teaching, learning and research together with clinical care in the field of childhood disability the way we do.

BLOOM: What advice would you give our next CEO?

Sheila Jarvis: To take advantage of the expertise that is here within Holland Bloorview and the commitment of our staff. Our powerhouse of staff, clients, families and volunteers is second to none. The opportunity is to take us to the next level. We’re so well positioned to go further, faster perhaps, and to cement our global impact.

Our academic and community partners and the Ontario Association of Children’s Rehabilitation Services have contributed to our strength and we will need them all going forward. In health care, overall, we are still a fairly small entity and we couldn’t have achieved what we’ve achieved without strong partners. Based on our accreditation feedback we are considered to be generous partners.

BLOOM: How have you managed to juggle everything considering the magnitude of your role?

Sheila Jarvis: I don’t do it all myself, that’s for sure. I have a great team of professionals and each member brings a particular strength and area of expertise to the senior management table. All of them are completely committed to our vision and I count on them to contribute to the overall leadership agenda for the organization and together we’ve accomplished a lot.

We’ve also had exceptional boards of trustees made up of leaders in the community who volunteer their time to support our strategy. They’ve been fundamental to our success and they’re truly my boss at the end of the day. It’s been so engaging and so exciting and our vision is so compelling and inspiring that it really has been very rewarding for me professionally.

BLOOM: You began your work as a physiotherapist. Have your own views about disability shifted over the years?

Sheila Jarvis: When I started out it was all about children with handicaps and then we began to talk about children with disabilities. I think I’ve come to realize that young people with disabilities are so amazingly able in so many ways. I think it won’t be long before we stop talking about disability and probably talk about people who are ‘differently abled.’ When you recognize how amazing their skills and talents are, and what they’ve accomplished, even as young people, you realize they’ve got a lot to teach us.

Learn more about Holland Bloorview's
search for a new CEO.

Mice are key players in study of autism drugs

By Louise Kinross

Holland Bloorview and SickKids have received $2.5 million from Brain Canada to conduct a five-year trial of new autism medicines in children and mice.

Testing drugs at the same time in humans and mice has produced promising results in cancer treatments and is a first for autism research.

Identifying the genetic change that causes a specific type of autism can predict whether it will respond to treatment. But “there are too many different types of autism that we can’t figure out the biological subtype based on looking at a child’s behaviour,” says lead investigator Dr. Evdokia Anagnostou, child neurologist at Holland Bloorview’s Autism Research Centre.

“We’re learning a lot about genes that map on different pathways, but in humans these genetic differences account for a very small number of kids,” Evdokia says. “So we don’t have enough kids for each of the genetic variations to study them properly.”

Enter the mice. “We can engineer lines of mice that carry a specific genetic difference associated with autism and then study their brains and responses to treatment.”

Over the five-year period, two drugs will be trialled in children and six in mice. After two-and-a-half years “the most promising compounds in the mice will be put in the humans and we will continue testing other compounds,” Evdokia says.

Being able to test drugs in mice with a specific genetic mutation “means we can take drugs that exist for a completely different reason, that have nothing to do with autism or development, but which we know affect the pathway we’re looking at.”

Human studies will be done at Holland Bloorview, McMaster Children’s Hospital and the Lawson Research Health Institute. The mice trials will be run at SickKids.

Shattered dreams

By Louise Kinross

A few things collided in my mind this morning.

First I read this exquisite essay by Michael Bérubé about his son Jamie’s search for work. Jamie, 22, has Down syndrome. He’s also a “bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages…” writes his dad. Bérubé peppers his piece with vivid images and anecdotes about Jamie that bring him to life.

At age 13, Jamie declared his career goal: to be a marine biologist.

But by the end of Grade 8 he’d scaled back his expectations: first to “marine biologist helper,” then, when asked at an IEP meeting what he'd do for a living, he answered dejectedly: “Groceries, I guess.”

“I’m not sure what I would have felt that day if I had known that he would have to settle for less than that,” Bérubé, a literature professor at Penn State, writes.

Despite a raft of part-time volunteer jobs and minimum-wage positions in a mailroom and doing recycling during his teen years, Jamie's post high school assessment on work suitability “filled us with despair. Factory work, nope; food service, nope (not fast enough); hotel maid service, nope; machine and auto repair, nope.” Trials to see if Jamie can do conference set up or stack shelves in a supermarket don’t pan out.

After two months sitting in the basement watching Youtube, he begins working two, and then three, days a week at the local sheltered workshop. Jamie sets up vials used to collect hazardous materials and makes $8 to $10 a week. Yes, you read that correctly.

Go back to the third paragraph and read Bérubé’s descriptions of a kid who bubbled over with his impressive knowledge and love of sea animals. Then tell me that the thought of him sitting at a table organizing inert containers that have nothing to do with him isn’t shattering. A horrible waste.

“It is not the life we – and he – wanted to imagine for him,” Bérubé writes.

But it’s common.

You’ll recall that disabled workers are the only group that has no wage floor: they don’t have to be paid minimum wage. A person doing manual work in a sheltered workshop might make $1.45 an hour, or they might make a lot less. Meanwhile, as Curtis Decker, executive director for the National Disability Rights Network, notes in this story, workshop executives, who are paid from $250,000 to $400,000 a year, vehemently resist raising worker pay to one-third that of minimum wage.

Private horror stories include the rendering plant in Iowa that paid men with intellectual disabilities $65 a month to get up at 3 a.m. every day and gut turkeys, some for over 30 years.

When Bérubé’s story popped up on my Twitter this morning, it held a certain poignancy and ache for me.

I’d just received information about a day program that my son could attend when he leaves school in a year at age 21. It’s a program that would cost about $1,000 a month (is that the equivalent of what parents pay for daycare of small children?)

There’s nothing inherently wrong with the program.

But I can't help thinking of all of the young adults who will go there, students like Jamie, who grew up with their own unique visions of what one day they’d “be.” And how for all of these youth, the day program or the sheltered workshop or sitting at home watching TV, whatever the endpoint, will be a complete disconnect from what they imagined.

My son’s dream was to be a zookeeper. He’s always had a special fondness for unusual creatures like the tapir, which looks like a dense pig with a trunk. He recently created his own sign to depict the unusually long snout the tapir uses to pluck fruit from trees. If it wasn't for my son, I never would have known that the tapir is born with spots or stripes that later fade; has been on the earth for millions of years; and is part of the family of horses, rhinoceroses and zebras.

We haven't brought up the field of zookeeping recently. I'm not sure how I would explain that my son's passions will have nothing to do with his future work. It seems cruel.

Yesterday I read about “the self-enhancement bias,” our evolutionary tendency to inflate our abilities, so that each one of us presumes we are so much more capable and talented than the average person: “Your wildly inaccurate self-evaluations get you through rough times and help motivate you when times are good,” says David McRaney, author of You Are Now Less Dumb. “Research shows that people who are brutally honest with themselves are not as happy day to day as people with unrealistic assumptions about their abilities.”

It made me think of Jamie, and how he'd been forced to progressively dismantle his dream of working with sea animals, how youth with disabilities aren't allowed to have the “delusions of grandeur” that the self-enhancement research suggests is wired into us to keep us hopeful, emotionally afloat and moving forward. 

How had Jamie's passion to study or care for other-worldly and diverse sea life been transformed into the more “realistic” counting and packaging of meaningless vials?

Despite parents who were creative and bold and resourceful, it was the only option left to him.

Yesterday, this piece about how companies keen on designing diversity programs overlook people with disabilities struck me as sad and darkly humorous. According to a British consultant who helps companies recruit and train staff with disabilities, HR folks often dismiss her, saying: “Oh, we're not doing disability, we're doing women… and black people at the moment.”

This morning, Canadian researchers announced in the American Journal of Human Genetics that they had “solved” 146 rare disorders, including identifying 67 new genes that haven’t been associated with rare diseases before. “When we launched this project, we predicted we might explain, or solve, 50 disorders; we’ve almost tripled that goal,” said Dr. Kym Boycott, lead investigator and clinician scientist at the Children’s Hospital of Eastern Ontario.

It sounds exciting, doesn’t it? But the word “solve” is misleading. Identifying the underlying genetic basis of these rare disorders doesn't “solve” the disorders for anyone living with them. And the truth is that for most of these conditions there never will be treatments: there isn't money in developing therapies for conditions where a tiny population benefits (please see The politics of funding).

I learned this 18 years ago when I started an international association for families of children with my son’s rare genetic condition. At the time, the two genes that are deleted in this syndrome had been identified. I remember how excited I was to interview the scientists and write stories in our newsletter. In fact, there was even mainstream research interest in one of the genes because it’s a tumor-suppressor; understanding it was thought to be a window into understanding certain types of cancer.

Eighteen years later there are no tailored genetic treatments for this syndrome. And there never will be.

The Canadian researchers say a benefit of their gene discoveries is to “offer informed reproductive counselling.” I guess that means that at some point we’ll be able to diagnose these conditions prenatally and women can choose whether to abort or not.

But other than the “gee-whiz, isn’t that cool that we know which genes are responsible for this disorder?” these findings will do nothing practical and meaningful for the children and families affected. Eighteen years ago the news would have sparked false hope in me. Now I know better.

Instead of throwing money at studies looking at the genetic basis of rare conditions—research that will never translate into workable therapies—I’d like to see money invested in improving the lives of kids and adults who are here now, people like Jamie, who once dreamed of being a marine biologist.

To me, finding a way to prevent the passions of people like Jamie from being crushed is a more urgent and noble research goal. I bet you it's also more challenging and less glamorous.