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Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."

BLOOM: What does your experience as a parent of a child with disability add to your role here?

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength? 

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.
Posted by Bian at 05.59, Add Comment
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Furniture that fits every child


By Megan Jones

Despite the many sights in New York, it was children’s furniture that stopped Jason Nolan in his tracks.

While walking the city during a trip in 2008, the Toronto-based early childhood studies professor and some friends came across a striking Manhattan storefront. Behind the large window was a collection of kids’ furniture. Each piece was brightly coloured, each was different and individual. The group instinctively stopped and moved in closer.

As they examined the furniture through the glass, they realized it was handmade. Slowly, it dawned on them: the chairs and stools and rockers were custom pieces for kids with disabilities. Jason (photo centre) is autistic and one of his friends uses a wheelchair. The group was so fascinated that they knocked on the storefront’s door—they felt compelled to know more.

They were greeted by Alex Truesdell, founder of the Adaptive Design Association, who invited them up and explained her project to make custom adaptive devices for children. Jason’s first thought was that the furniture must be expensive. It was, after all, made and sold in New York. But, Alex told him, it was actually the opposite—they were giving pieces away for free if families couldn't afford them or if there was no funding. After all, they cost less to design and build because each object was made from cardboard.

As he walked out of the studio, Jason began conceptualizing how he could bring these devices to Canada. Over the next few months he returned to New York to learn from Alex and her team. After being taught how to make a few pieces, Jason started to build his own in Toronto.

Parents took immediate interest. “We had people saying ‘I need something right now,’” Jason explains. So he teamed up with a student at Ryerson University, where he works, and began to experiment with building on campus. They bought a set of tools and used cardboard from recycled student projects to make their first prototypes.

Initially, they designed a corner chair—essentially three pieces of cardboard in the shape of a two-faced, hollow tetrahedron. The chair was made custom for a three-year-old girl who could not sit up independently, and had previously needed an adult to hold her while she played in the sandbox. When the girl attempted to play with other kids while being held, they ignored her.

But once she could play on her own using the bright orange and yellow chair that Jason and his student designed, other kids no longer registered her difference. Within minutes, they began communicating, and brought their games to her. One of Jason’s graduate students documented the group of kids over the course of a year as part of her thesis. She found that during that time, the girl’s preschool classmates continued to modify their play without having to be asked.

For Jason, that is what adaptive design is all about: changing the environment the child is in, as opposed to changing the child. “For me, children aren’t disabled, I’m not disabled,” he says. “Society disables us. The problems that children with special needs have are created by society. Either by how we physically build the space, or how we engage other people.”

To Jason, cardboard is the best material to use because “it’s the greatest visual metaphor,” he says. “It’s a discarded thing. And people with disabilities are largely discarded.”

But it also has practical advantages. Cardboard is available essentially anywhere in the world, he explains, and it doesn’t necessarily require expensive tools to build with. Without scissors or a blade, someone could rip cardboard using their hands. Without access to glue, a would-be builder could use leftover rice water as an adhesive.

“It’s not got any sort of colonialist baggage. It’s equal for us all. But it’s also reminding us that we should be looking at all the objects in our lives to figure out how we can change them to be useful for us.”

Despite its potential simplicity, very few people are doing adaptive design, and designers are geographically spread out. Jason and his students at Ryerson work closely with Alex's design association in New York—the professor recently joined their board of directors—but for the most part groups are few and far between. One of Jason’s goals is to create a global social network so that everyone experimenting with designs can communicate. He recently submitted a research proposal to build an adaptive design studio in Ghana. Earlier, the Ryerson Lab was visited by students from Japan. But, Jason says, innovation moves too quickly for groups to be in occasional contact.

“It’s not enough just to get information out,” he says. “We have to have a two-way continuum. As soon as someone learns something from me, they’re going to say, ‘That’s nice. I have a better idea.’”

Today, Jason directs the EDGE Lab in a newly renovated workspace in the Bell Trinity Square Building behind the Eaton Centre. He still works with a group of students, but their designs have expanded beyond custom furniture. Jason’s space is littered with piles of prototypes, which he shows off enthusiastically: open source computer hardware, a shoe designed to warn people with low vision about tripping hazards, a 3-D printed prosthetic arm.

None of their designs are mass-produced or sold for profit yet. At any time, about a dozen people are working on designing and building, but since they’re students, the groups turn over nearly every 13-week semester. Parents requesting specific devices for their children go through the university. Jason’s biggest challenge is figuring out a way to harness enough builders to meet the volume demands from parents. “I’d love to be running off two or three of these a day,” he says, pointing at a corner chair. “But we’re not there yet.”

Still, Jason hopes that some objects will be commercialized. One student, for example, recently created dollhouse–sized furniture that looks like the real-life pieces Jason and his team build. They are looking to mass-produce the toys at cost and sell them to daycares, with the hope that if children get used to playing with adaptive technologies from a young age, they won’t view them as a sign of difference later.

Jason also plans on outsourcing assembly of the real-life furniture as well. He’d like to be able to sell pieces to families at an affordable rate, not for profit. His ultimate goal is to work solely on design, and have someone else manage the business aspects.

Until then, he will continue to push for a change in attitudes by doing what he does best: making and creating. “Being autistic, I still primarily make sense of the world through physical exploration,” he says. “I communicate by making something for somebody.

“Everyone needs what I’m doing. We’re all going to need some kind of custom adaptation at one point in our lives. The difference is children with special needs can’t function without it.”

Photos by Annie Sakob and Jason Nolan



Posted by Bian at 09.16, Add Comment
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