Friday, August 29, 2014

Prepare your child to take on the world

By Louise Kinross

Giving a child the words and confidence to describe disability at a young age is important.

That’s why Grade 1 students at the Bloorview School participate in 20 weekly sessions on self-advocacy before they graduate and move to a community school.

Betty Chan, an occupational therapist who leads the program with teachers, says that parents can adapt it for use at home. Here are 10 steps.

1. Introduce the idea that everyone is different. Begin with a children’s book, such as
It’s Okay To Be Different by Todd Parr. “It says it’s okay to be tall, to be short, to make a mistake, and I talk about all of those differences broadly,” Betty says.

2. Ask your child to point out differences between people in your family. “I may do an exercise where I ask two kids to come forward and the other kids explore how they’re different,” Betty says. “‘She’s taller, he’s sitting in a wheelchair, she has long hair.’ It’s very concrete and presented neutrally. This is the way the world is and there’s nothing wrong with it.”

3. Point out disability equipment like wheelchairs, walkers, braces, hearing aids and voice devices. Help your child see that some people use different kinds of equipment and others don’t.

4. Introduce your child’s disability by using a children’s book with a character with a similar condition. For example, Mercer Mayer’s
A Very Special Critter is about a character who goes to school using a wheelchair. Your public library is a great resource for books with characters with disabilities.

5.   Go to TVOkids' 
Mark’s Moments and click on an episode that profiles someone with your child’s disability. Mark spends a day at each child’s home, learning about their disability, how they handle negative reactions from others, and how they’d like to be treated. Mark asks all the questions any curious child would want to know, in a matter-of-fact, upbeat way. In addition to modelling ways your child may want to explain difference, this series can be fun to share with friends.

6. Describe your child’s condition in simple terms. “You had an injury in your brain at birth that makes your muscles tight. That makes it hard for you to walk.” Betty says young children like to look at pictures of the brain and basic anatomy to help them understand the impact of a diagnosis.

7. Be honest. Teachers sometimes hear students share incorrect information like “I have a little bit of CP and it might go away when I grow up.” Children need to know that a child with cerebral palsy will always have cerebral palsy.

8. Teach your child the word “frustrated.” It comes in handy when a child explains the benefit of assistive technology. For example, “I get frustrated when I have trouble writing, so I use a computer.”

9. Pretend to be a kid who doesn’t know your child and ask questions. “So, Noah, you’re not walking, what happened to you?” Encourage your child to practise a simple description of their condition and how they do things differently. Think about fears other children may have, and work these into the role play. “Can I catch that from you?” It may be easiest to switch roles first so you play the role of the child with disability and your child pretends to be a curious peer.

10. Get your child to problem-solve situations at home and school by stepping back. “Parents often get a child what they need before they need it,” Betty says, “like placing a walker beside a child when it’s time to go out. You want your child to develop an ability to ask for what he needs or figure out how to get. ‘So it’s time to go home and the other kids are getting their jackets. You’re sitting in your chair waiting for someone to bring you your jacket. What should you do?’”

Thursday, August 28, 2014

Free to move, free to learn

By Louise Kinross

For three months researcher Coralee McLaren watched 20 kindergarten children play in the Bloorview School—some with disabilities and some without—to study the relationship between how they moved and their physical environment.

Recent brain research shows that when children are free to move naturally they interact with objects and features of their environment in a way that promotes learning.

But what does this mean for children with disabilities whose mobility is restricted?

“What we discovered was that not only do the physical features of the class elicit creative ways of moving, but movement itself, and the children’s interactions and how they move together, generates new ways of moving,” says Coralee, a professional dancer who was studying the children for her PhD thesis in nursing. “By watching the other children move, or being caught up in the physical energy of their movement, the children with disabilities were drawn into different groupings and found non-habitual ways of moving where they experimented with their bodies.”

Even when children aren’t moving, research suggests that watching peers at play can trigger brain responses similar to those activated when children are playing themselves.

The findings could have implications for how classrooms are designed and provide additional evidence for the benefits of inclusive education.

Coralee, who watched and filmed the kindergarten children’s unguided play and interviewed them about it, was fascinated by how the children used objects to change the way they moved and their environment.

For example, they modified a pretend cockpit chair in a mock space station set up by teacher Paul Alcamo.

“It was a scooped chair with a base that was detachable to give you the feeling you’re flying in a rocket,” Coralee says. “When they discovered they could take the chair apart they turned it into all sorts of things. They’d get rid of the base and make a teeter totter and hook up levers and straps, and they’d tip the seat like it was a swivel chair, and they’d use the base to climb over and around. Some of the children that used wheelchairs and walkers abandoned them and crawled, using the floor and the shelves to propel themselves around the space, to integrate with their peers and experiment with the chair.”

In addition to the pretend centre, Coralee looked at how other physical elements of the class—the chairs, the space between tables, the pathway that connects two sides of the class and the wheelchairs and walkers themselves—generated movement.

“I asked one little non-disabled boy ‘If you had a choice to move any way that you wanted to in the class, how would you move?’ He said he wanted a wheelchair like his friend because he can move so fast and I can’t move that fast. The chair became a non-issue because it was the speed and capability of his friend that the boy found remarkable.”

Coralee and scientist Barbara Gibson just received funding from the Canadian Institutes of Health Research to co-lead an interdisciplinary team of researchers on a three-year study that will use artistic and scientific methods to build on this doctoral research. Coralee is now a post-doctoral fellow at the Bloorview Research Institute, housed at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

In the first year of the Moving Together study, researchers will develop a dance-play event that integrates objects and choreographed movements to try to elicit some of the creative encounters Coralee observed in Bloorview's reverse-integration kindergarten. Children’s muscle and brain responses will be tracked.

In the second year, children at a school for physical disability will participate in this dance event with peers without disability.

In the third year, the dance-play event will be performed by children with diverse abilities in an immersive live theatre lab at McMaster University in Hamilton, Ont. “We’ll measure neurologically and physiologically what’s happening with children when they’re moving in this space in an artistic way, and we’ll also measure the responses of the audience.”

Coralee says the findings could inform how integrated classrooms, hospitals and medical clinics are designed. “We want to tease out this social piece of how movement itself incites movement. What is it about children moving together that starts to change their movement? How do children with disabilities start to move differently simply by being integrated and moving with their peers?”

Illustration by Jana Osterman.

Tuesday, August 26, 2014

In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidence that social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal law such structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive list of relevant resources.


Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

Wednesday, August 20, 2014

What is 'progress' in prenatal testing?

By Louise Kinross
 
Yesterday I was contacted by a researcher at Duke University who wanted to interview me about a new blood test that can detect micro-deletions like my son’s genetic condition—Langer-Giedion Syndrome—as early as 10 weeks into a pregnancy.

I’ve
written about the issues I have with prenatal testing: that it’s increasingly viewed as a standard of medical care and social responsibility, rather than a woman’s choice, and that when a prenatal diagnosis is made, a clinical description isn't balanced with information from families raising children with the condition or affected adults.

In addition, information is often presented in a value-laden way. For example, I’ve been on the receiving end of obstetricians and genetics counsellors who talk about “perfect” babies and “abnormal” babies, and about a “burden you’ll live with for the rest of your life” during what is supposed to be neutral counselling.

It's also quite possible that the clinician a parent speaks with during genetics counselling has zero life experience with disability—kind of like talking to a car salesman about a car he's never driven. Instead, it’s more likely that the clinician views genetic disability as a preventable, costly medical error.

The Duke researcher sent me a link to Sequenom Laboratories’
press release.

It reports that the company will be able to identify three new micro-deletions—including Langer-Giedion Syndrome—as part of its Materni21 PLUS test. Although this blood test already detects a handful of micro-deletions, it’s named for its ability to detect Trisomy 21, or Down syndrome.

There’s a quote from the head of maternal-fetal medicine at Cleveland Clinic saying the test “has helped change how we treat our prenatal patients.” However, there isn’t any explanation as to what this change is. The doctor does say he can now provide patients with results as early as 10 weeks into the pregnancy.

Does counselling for a genetic disability at 10 weeks into a pregnancy differ in any way from that at 16 weeks? If so, what are those differences?

As the testing for micro-deletions is expanded, how is the clinician’s real-life understanding of these conditions enlarged to ensure prospective parents get balanced and rich information?

What are clinicians doing to reach out to families affected by micro-deletions so they can provide more than a clinical description and perhaps even a referral to a support group?

Like other deletions, Langer-Giedion Syndrome affects people differently. The MaterniT21 PLUS will not give prospective parents any insight into whether their child will be mildly, or more severely, affected. My son will not go to university, but some with the disorder do. Prospective parents will have a diagnosis, but no clear sense of impact. Quite the emotional quandary, I would imagine, and not the precise, scientific "genetic analysis solution" that the company refers to.


To me, the technical side of prenatal testing is the easy part. The information and counselling that comes after a diagnosis is the messy part, the part that needs critical scientific attention and study and evaluation.

Sequenom says that it’s “committed to improving healthcare” but it doesn’t mention anything about how the results of its test are used, or how test results translate into counselling that prospective parents find useful, supportive and neutral.

Oddly, Sequenom’s news release doesn’t mention a thing about termination, yet I imagine most positive Materni21 test results lead to termination. Why is this not openly discussed in its promotional materials?


Again, I think it's easier to talk about “laboratory-developed”  tests and “revolutionary genomic and genetic analysis solutions” rather than the real-life decisions of a woman who may know little about disability or be ambivalent about using termination as a prevention measure.

Note that
on July 29 Sequenom reported revenues of $39.8 million for the second quarter of 2014, an increase of 62 per cent over the same period last year.

There’s lots of money to be made in increasing the number of women who take the Materni21 PLUS.

My autism and me


ICYMI. Lovely video by a 13-year-old who explains her autism, then interviews other children about how autism affects them, including her brother.

Friday, August 15, 2014

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.

Wednesday, August 13, 2014

New legal service aids Holland Bloorview families



By Louise Kinross

Your child has a disability and needs regular medical visits, but your boss threatens to fire you if you take the time off.

This is the kind of issue parents bring to Pro Bono Law Ontario at Holland Bloorview, a free legal service on non-medical issues that may compromise a family’s ability to care for their child with special needs. The service, led by our new onsite lawyer Hannah Lee, is offered to Holland Bloorview families with low to moderate incomes.

“How can a parent that’s being bullied by an employer or facing a hurdle in securing housing because their child’s medical needs are so great provide the best care for their child?” Hannah says. “I work with a network of lawyers and am here to give parents access to the information and resources they need. In most cases, we are able to advocate or find legal solutions. We try to shield parents from unnecessary stress so that they have the energy to care for their child.”

In addition to meeting one-on-one with parents, Hannah meets with lawyers working in several Ontario children’s hospitals on a systemic issues committee that “looks at bringing legal challenges to contest policy that discriminates against families with children with disabilities,” she says.

In Canada, “we tend to think equality means treating people in the same situation the same way,” Hannah says. “But sometimes equality requires treating people differently. This view of equality is called substantive equality. Because people have different needs and circumstances, we shouldn’t assume that just because they don’t follow what society normally requires of them that they are less capable or less deserving of respect and dignified treatment.”

Hannah has been onsite at the hospital two mornings a week since November, and has handled about 100 consultations with parents. She’s located on the main floor in the Family Resource Centre.

The service has had positive feedback, including resolving some cases where employers objected to a parent attending a child’s medical appointments. “When you have legal counsel involved, it tends to make employers accountable,” Hannah says. “They have a duty to accommodate to the point of undue hardship.”

Nadine Sunarich, social worker with Holland Bloorview’s child development program, has referred a number of parents to the service. “These clients have had issues related to immigration, Assistance for Children With Severe Disabilities funding appeals, family law, debts and unpaid taxes. They’re very grateful that this program exists and that it is onsite.”

In the past, Hannah worked as a defense litigator. She also volunteered in a legal-aid clinic for youth and in Pro Bono Law Ontario’s Child Advocacy Program, a free service that provides parents with lawyers to advocate for their child’s special education needs.

Since working with our families, “I’ve seen how resilient parents are in the face of adversity,” she says.

Holland Bloorview families who are struggling with a legal issue can e-mail Hannah at hannah@pblo.org.