BLOORVIEW KIDS REHAB 2007 ANNUAL REPORT
wor ld of possibility
dea r fr iends
2007 was a year of great progress and promise at Bloorview Kids Rehab and in the field of childhood disability. In the research world, a study of 500 European children with cerebral palsy published in The Lancet found that eight-to-12-year-olds rated their quality of life no differently from children without disabilities. In other words, the children perceived their lives to be as rich as their able-bodied peers. A similar study in Developmental Medicine and Child Neurology found that self-reported quality of life in about 200 Canadian teenagers with cerebral palsy was not linked to their abilities or to the degree of their disability. These studies challenge the assumption that childhood disability means a less happy or satisfying life and affirm Bloorview’s commitment to creating a world where all children can participate fully. At Bloorview, our vision is to create a world of possibility for kids with disability. We do this by bringing together research, teaching and clinical practice to spur the most innovative treatments; pioneering programs that get kids with disabilities out into the real world – learning, making decisions and building confidence; and creating technologies that enable children with disabilities to do regular childhood activities. Our new strategic plan – Infinite Possibilities 2007-2012 – calls on Bloorview to lead the development and evaluation of life skills and recreation programs that promote participation. It also outlines how we will better integrate research and teaching with frontline practice to drive new approaches to treatment that benefit children worldwide. Take a look at Bloorview’s achievements over the last year and the creative ways we empower children – through treatment, technology and life skills and wellness programs – to lead happy, satisfying lives. For their passion and dedication to our vision, we graciously thank our staff and volunteers. For partnering with us, we gratefully acknowledge the contributions of Bloorview Kids Foundation, Bloorview Children’s Hospital Foundation, the Ontario Ministry of Health and Long-Term Care, the Toronto Central Local Health Integration Network, our community partners and our esteemed academic partner, the University of Toronto.
Sheila Jarvis President and CEO Bloorview Kids Rehab
Peter Fullerton Chair, Board of Trustees Bloorview Kids Rehab
the yea r in review ENGINEER NAMED TO CANADA’S TOP 40 UNDER 40
SURVEYORS NAME TWO BEST PRACTICES
Bloorview’s biomedical engineer Tom Chau was selected one of Canada’s Top 40 under 40 by the Globe and Mail. Tom develops breakthrough technologies that enable children with disabilities to participate in everyday activities.
Bloorview received its three-year accreditation – with no major recommendations! Surveyors identified Bloorview’s Growing Up Ready program as a best practice in transitioning children with disabilities to adulthood. They also recognized our decision-support system as leading edge in promoting fact-based decision-making.
BLOORVIEW, U OF T CELEBRATE RESEARCH CHAIRS Bloorview and the University of Toronto announced three new childhood disability research chairs representing an investment of $7 million and a major step forward for the field of pediatric rehabilitation. THE GLOBE SHEDS LIGHT ON BRAIN INJURY Bloorview’s brain-injury rehab team and six families were the focus of a five-day photo and story series on childhood brain injury in the Globe and Mail. BLOORVIEW RECOGNIZED FOR DECISION SUPPORT Bloorview received a Performance Visionary Award from Cognos Inc., an IBM company and world leader in business intelligence solutions. The award recognizes our success in moving from a paperintensive environment to one guided by sophisticated decision-support software. LIFE-SUPPORT ALARMS A FIRST Bloorview was the first hospital in Canada to implement a rigorous new alarm system – using wired and wireless technology – to alert multiple staff by pager when children have ventilator or airway problems.
TORONTO’S TOP CHEFS SHARE SECRETS The second annual Recipes for Possibility Calendar – featuring 13 mouth-watering recipes from Toronto’s A-list chefs – was launched at a gala dinner that drew 250 business and community leaders and raised over $400,000 for Bloorview. Canada AM host Beverly Thomson was the emcee. TC LHIN FUNDS LIFESPAN CLINIC A demonstration clinic run by Bloorview and Toronto Rehab to smooth the transition from children’s to adult rehab services was selected by the Toronto Central Local Health Integration Network as one of its first funding priorities. BUILDING RECEIVES DESIGN ACCOLADES Creating a hospital that doesn’t look or feel like one was the goal in designing Bloorview’s new facility. In 2007, the International Academy for Design and Health and the Ontario Association of Architects recognized Bloorview’s new building with awards for innovation. The building was even featured in Metropolis, a New York design magazine!
busy bodies, hea lthy minds
Who: Cassidy Sheng, 7, ballerina, diagnosed with bone cancer that led to the amputation of her left leg and months of inpatient rehab at Bloorview. What: Member of Busy Bodies – a seven-week program designed to get children with disabilities aged seven to 12 hooked on fun, physical activities. Busy Bodies is part of Growing Up Ready, a multi-faceted program at Bloorview that educates youth with disabilities – and their families – about the everyday experiences and skills children need to grow into mature, confident, healthy adults. Where: Recreation facilities in the community. When: Two hours a week for seven weeks. Why: Physical inactivity and obesity have been identified by The Public Health Agency of Canada as a serious health threat to children. Research by Bloorview scientist Gillian King and her team shows that children with physical disabilities take part less in social, recreation and physical activities than their peers. “We need to build awareness of how important physical activity is to our clients’ overall health and happiness,” says Erin Wilkie, therapeutic recreation specialist and Busy Bodies co-developer. How: Cassidy and her Busy Bodies friends try out activities like creative dance, yoga, sledge hockey and exercise at a fitness club. “After her amputation Cassidy wanted to dance again, but ballet is hard because her amputation is high,” says mother Carmen. With Busy Bodies, she found an alternative in synchronized swimming. “It’s like ballet in the water,” Cassidy says. The Grade 2 student may not don a pair of skates again, but “now she’s on the ice playing sledge hockey,” her mother says. The team: Two therapeutic recreation specialists and one therapeutic recreation student.
“Busy Bodies helped Cassidy gain back confidence in her abilities. Now she knows she can do lots of things and have an active life.” Carmen Sheng, Cassidy’s mother
finding a vo ice
Who: Marshall Hohmann, 15, computer geek, biker, soccer player, has cerebral palsy and speaks with voice technology. What: Helping others find their voice in Chat Club, a Bloorview program that brings together children using voice-output devices to boost their comfort and skill communicating in a wide range of situations. Older participants like Marshall (facing page, right) mentor younger ones like Keith Qualtrough, 7 (left), who was trying out a voice device for the first time. “They need to know they have a place in this world,” Marshall says. Where: A community-based program in Durham, in partnership with Grandview Children’s Centre. When: An evening every two weeks over a 12-week period. Why: “Voice technology makes people stop and pay attention to children who don’t speak,” says Marshall’s mother Paula. “It unlocks them as people. Chat Club gives an opportunity for mentors like Marshall to shine and for the younger children to say: ‘I want to do that.’” How: Chat Club includes outings such as a cooking class at Loblaws, shopping at the mall and a movie-trivia night. Experienced technology users support younger children learning to use voice devices for the first time. “Younger kids need somebody to push them,” Marshall says. “When the parents see me mentoring they realize ‘wow, maybe my kid can get there too!’”In advance of outings, a communications assistant visits the family at home to program vocabulary that fits the upcoming activity so the child can ask questions and make relevant comments. The Team: One speech-language pathologist, two communications assistants, one occupational therapist, one assistive technology consultant and one therapeutic recreation specialist.
“Typically these kids are in a school class where they’re the one-off kid with a voice device. They’re often not valued as having something to contribute. At Chat Club, we wanted the youth who are mentoring younger children to get the message that they’re the experts.” Gail Teachman, occupational therapist
a lifeline to child develo pment services
Who: The Pereira brothers – Christopher, 6, Michael, 4, and Gabriel, almost 2 – are bright, curious, busy boys who have Fragile X Syndrome. Fragile X is a common genetic condition that can cause learning or intellectual disabilities, speech problems, attention issues and autistic-like behaviours. What: Clients of Bloorview’s child development program – which brings together a team of specialists to assess, treat and support children with complex developmental disorders and their families. Where: At Bloorview, at home and by phone. When: On an as-needed basis. Why: Children with developmental disabilities have unique and changing needs for care, therapies and experiences to promote their growth and wellbeing. Parents Sonia and Manuel are trying to meet those needs – multiplied by three – in the unfamiliar world of rehab and school services. “It was hard at the beginning,” Sonia says. “I wanted to help my children but I didn’t know how.” How: A team of child development specialists at Bloorview assessed each child. A social worker recognized the need for respite care and helped Sonia apply for emergency funding. On an ongoing basis, an occupational therapist and social worker suggest home activities to address the boys’ sensory and behaviour needs. The social worker supports Sonia at school meetings and the family has been referred to the Geneva Centre for Autism for an in-home parenting program. Adapted seating and a voice-output device are on the horizon for Michael. The Team: Two developmental pediatricians, two occupational therapists, one physical therapist, one speech-language pathologist and one social worker.
“The staff at Bloorview are awesome. I know I can go to Bloorview to get the suggestions I need and referrals for services the boys need.” Sonia Pereira, mother of Christopher, Michael and Gabriel
speak q go es ma instrea m
Who: 35,000 elementary and high school students in 122 Ontario schools. What: SpeakQ – a speech-recognition software developed at Bloorview for students with learning disabilities who struggle to write – has been made available to all students in the Upper Canada District School Board. With SpeakQ, students speak a word or phrase and see it displayed in a box on their computer screen with four alternate words or phrases that the software predicts. They can click on each word or phrase to hear it spoken before selecting the correct one. Where: Eastern Ontario. School boards in Saskatchewan and Chicago are also considering making SpeakQ uniformly available. When: This year SpeakQ is being implemented across the Upper Canada District School Board, starting in Grade 1. Why: “We’re operating on the premise that adaptive technology is necessary for students with learning disabilities and good for all students,” says Steve McLean, principal of Rockland High School. “Good teaching dictates that we hit all the learning modalities kids need. SpeakQ is an enabling tool that includes kids who would otherwise be excluded. I liken it to providing glasses to children who need them.” How: At Rockland High School, all incoming Grade 9 students are trained on SpeakQ. “The benefit we’re seeing is that the kids with learning disabilities can stay in the classroom and continue to participate in the richness of that environment,” Steve says. “And because they’re comfortable with the technology and can show the other kids how to use it, suddenly their status within the classroom changes. There’s much more positive recognition of their strengths instead of their weaknesses.” The Team: Two rehab engineers; two programmers; two computer scientists; one human factors designer; one occupational therapist; two special-education consultants; and numerous students and families who tested it out.
“I want SpeakQ to be as ubiquitous as a pencil and a piece of paper.” Steve McLean, who led the Upper Canada District School Board’s move to make the adaptive technology available to all students.
the power o f b o dy l a nguage
Who: Stefanie Blain, PhD biomedical engineering student at the University of Toronto. What: Finding a way to unlock the world of communication and control for children and adults who have no speech or movement. “They can’t talk to people or control their environment – essentially they’re locked in to their own bodies,” Stefanie says. Where: The Bloorview Research Institute. “It allows me to combine cutting-edge technologies and engineering skills to make a difference in the lives of children,” Stefanie says. “With Bloorview’s research institute and hospital under one roof, there’s a unique concentration of great minds in rehabilitation.” When: Stefanie came to Bloorview as an undergraduate in 2003. She’s now halfway through a five-year graduate training program. “A PhD is a marathon,” she says. “If you don’t have a reason to keep going, you can get burnt out. The children at Bloorview are my reason.” Why: “Children who are ‘locked in’ don’t have any way to express their identity,” Stefanie says. “They can’t make the most basic choices. If we can find a way for these children to convey their thoughts and intentions, what’s possible will only be limited by their imaginations.” How: Stefanie is training a computer program to decipher subtle body signals – such as breathing pattern, heart rate and skin temperature – then translate them into electronic speech or computer commands. “It’s a rich, unmined environment. If we can give children the ability to say ‘yes’ or ‘no,’ to scan letters, to select buttons that control a computer or television, it will open a new world for them.” The Team: Two rehab engineers, one biomedical engineering PhD student and one teenager.
“Bloorview’s graduate program is well established and knows how to take an undergraduate student like me and turn her into an independent, critical-thinking researcher.” Stefanie Blain, biomedical engineering PhD student
jamaican do cto r drea ms o f cha nge
Who: Sharon Smile, pediatrician in Kingston, Jamaica and a clinical fellow in the University of Toronto’s two-year training program in developmental pediatrics – based at Bloorview. What: Becoming accredited as a pediatrician who specializes in assessing and treating children with developmental disabilities – and their families – as part of a multidisciplinary rehab team. Plans to return to the University of the West Indies to “change the way physicians there look at kids with disabilities and make them aware of the possibilities for treatment,” Sharon says. Where: Sharon did electives in the United States and Canada before choosing Bloorview. “I was impressed with the Canadian approach which was more holistic and team-based.” When: Sharon began her fellowship in 2007 and returns to Jamaica in 2009. Why: “As a pediatrician, I’m trained to know concrete pathology. But kids with disabilities are intricate, unpredictable and always changing. You can’t learn about them in a textbook. You need hands-on interaction. Right now, there’s only one developmental pediatrician for the entire island of Jamaica, with a population of 2.5 million. I want to use the expertise I gain at Bloorview to empower the kids I see back home.” How: Clinical time assessing and treating children with disabilities in Bloorview’s child development program and two satellite clinics; rotations at the Hospital for Sick Children in child psychiatry, neonatal follow-up, neurology and genetics; and research. The Team: At Bloorview, five developmental pediatricians; a dozen occupational and physical therapists and assistants; seven speech-language pathologists; five social workers; six nurses; six psychologists; three psychological associates; and one psychometrist. Individual teams are tailored to the needs of each child.
“Staff in this program are very open to learning and teaching, so as a motivated student, the sky’s the limit.” Sharon Smile, clinical fellow, U of T’s Developmental Pediatrics Program, based at Bloorview
how do we create a wo r ld o f po ssib ility?
We encourage them to be as independent as they can be.
I take fun to the bedside through story telling, music appreciation and sensory play. We even have a Snoezelen Cart that I can wheel right into the room!
Lorna Campbell , Brain injury clinical leader
Kimberley McFarlane, Therapeutic recreation specialist
By researching new clinical treatments, providing adaptive technology and focusing on strengths. Dr. Doug Biggar, Pediatrician
By creating an environment that focuses on what kids can do, celebrates their achievements (big or small), and sets them up to take on the world and inspire others. Breanne Mathers, Child life specialist
how do we create a wo r ld o f po ssib ility?
Bloorview is continually blooming with new programs and opportunities for children to express their best. Joanna Miedzik, Receptionist
Technology can open up the world because it gives the child a voice to express ideas and make choices, rather than sitting back passively. Delroy Brown, Assistive technology consultant
We put out a variety of materials and tools and see what children gravitate to. Weâ€™re putting out these possibilities and then consciously sitting back and waiting for the child to let us know what they need. Shannon Crossman, Artist and respite program co-ordinator
I donâ€™t see what they canâ€™t do, I see what they can do and how I can help by designing a prosthesis to support their lifestyle. Shane Glasford, Prosthetist
per fo r ma nce repo rt 2 0 0 7 -0 8 Bloorview Kids Rehab models its performance report on the Hospital Report – a joint initiative of the Ontario Hospital Association and Ministry of Health and Long-Term Care. Bloorview measures performance in four areas: satisfying clients and families; evaluating outcomes; changing the system; and managing finances.
how we measure up
Where possible, indicators are rated against known benchmarks, trends in practice patterns, evidence in literature and international standards. Bloorview is always looking for better ways to track our performance, and that means we’re continually developing and using new outcome measures. Some of these indicators lack external benchmarks or year-over-year comparisons. Despite these challenges, we remain committed to leading the way in evidence-based care in our field! Representatives from the Ontario Association of Children’s Rehabilitation Centres; the Provincial Council on Children’s Health; the Ontario Child Health Network; Bloorview’s Family and Youth Advisory Committees; and our Board of Trustees determined the ratings this year. We use a three-star rating system:
Satisfying clients and families Bloorview’s Tell Us What You Think survey asks for feedback on wait times, accessibility and parking, and overall satisfaction.
The average quality-of-life score increased to 71 per cent after treatment from 36 per cent before treatment, representing a considerable clinical improvement. Families whose children received surgery describe the greatest improvement in quality of life.
In 2007-08, 96 per cent of 334 families rated Bloorview overall as good or excellent, exceeding our internal benchmark of 95 per cent. Excellent and good ratings have been fairly stable over the past three years, with a shift upward in excellent ratings to 73 per cent in 2007-08 from 61 per cent in 2005-06.
Our rating for this year reflects excellent early results. However, we need to evaluate this measure over the long term to see whether quality-of-life gains reported at the first visit following treatment are maintained over time.
Bloorview’s Tell Us survey also includes a standardized questionnaire* where families rate the family-centredness of our services. This allows us to measure ourselves against other Ontario children’s treatment facilities.
In family-centred care, we were at or above mean scores in four of five areas: ‘partnership with parents’ and ‘providing specific information’ scored highest – both at 5.79 out of 7.0. ‘Co-ordinated care’ scored 5.50 and ‘general information’ was 5.07. We were just below the mean score for ‘respectful and supportive care (5.59).’ While we exceeded the mean for providing general information, it is our lowest-rated area. Bloorview has worked hard in the last three years – through development of the Grocery Foundation Resource Centre and our web site – to address families’ needs for general information. This is reflected in an increase in our score during that period to 5.07 from 4.63. The knowledge hub – as outlined in our strategic plan – will further strengthen our ability to provide general information about childhood disability, positioning Bloorview as the go-to source for families and professionals. *Measure of Processes of Care, CanChild Centre for Childhood Disability Research
Bloorview continues to exceed benchmarks that track changes in children’s functional abilities during an inpatient stay for rehabilitation. Bloorview nurses use the internationally recognized WeeFIM instrument outcome measure to assess clients on a seven-point scale in categories that include self-care, mobility and cognition. Scores this year show clients are making gains of 15 points on average, which exceeds the literature-based benchmark of 10. We have also surpassed our average score of 12 points from the year before. In addition, we used the WeeFIM instrument more consistently, with 91 per cent of all inpatients assessed at admission in 2007-08. Almost 70 per cent of inpatients were tested again before being discharged – an increase of 10 per cent from the year before. While the increase in average WeeFIM scores is excellent for the 70 per cent of inpatients retested at discharge, it’s a priority for us to ensure we capture data on all clients before they leave. Only then will we gain a true understanding of our effectiveness.
Patient safety is a top priority in client care.
Bloorview has an interdisciplinary saliva management clinic that treats a small but unique group of children who have difficulty with drooling or aspiration of saliva. Surgery, oral-motor and behaviour therapy and Botox injections are the most common interventions used. The Evaluation of Change and Satisfaction for Individualized Outcomes was developed in 2005 by the clinic team to measure families’ overall quality of life before and after treatment. It includes a validated visual-analogue scale for measuring the impact of the treatment on quality of life. From 2005-07, 23 families rated their quality of life in relation to their child’s drooling and aspiration before and after treatment.
Last year, the Ontario Hospital Association launched a campaign called “Your Health Care – Be Involved.” It included five safety tips to get clients and families more active in their health care. For example: “Speak up if you have questions or concerns about your health care.” The OHA created campaign booklets, wallet cards, posters and DVDs to help hospitals share the information with patients. Eight months into the campaign, the OHA conducted a patient survey in five hospitals across the province to evaluate how effective it had been. Only 17 per cent of 124 patients surveyed had heard about the campaign. To ensure that Bloorview was effective in rolling out the safety campaign, we took a targeted approach that proved very successful. Staff shared the tips verbally and in writing
with 128 families as part of an outpatient visit or inpatient stay. Three months after the campaign, 98 per cent of those families remembered at least three of the patientsafety tips, 89 per cent remembered the related poster campaign at Bloorview, and 100 per cent acknowledged the value of the campaign!
Changing the system
Scientific discovery Research is the cornerstone to advancing clinical care, developing assistive technology and enhancing the participation of children with disabilities in everyday life. For these reasons, we’re pleased to report that there have been significant accomplishments in the Bloorview Research Institute over the past year. In 2007 we announced three new research chairs with the University of Toronto representing an endowment of $7 million. Peer-reviewed funding from external agencies topped $4 million for the first time, with a 75 per cent success rate for Bloorview scientists in the September Canadian Institutes of Health Research grants competition, which is more than double the national average. In addition, three new scientists were recruited to the institute and over 40 trainees, including 19 summer students, undertook their research experience at Bloorview.
areas that contribute to overall employee commitment. These were respect (81.5 per cent vs. 79 per cent), teamwork (77.8 per cent vs. 74.3 per cent), positive work environment (71.2 per cent vs. 66.1 per cent) and physical environment and safety (83.1 per cent vs. 73.7 per cent). The results indicate that overall employees feel Bloorview is a great place to work: the organization reflects their values, inspires the best in people and they’re proud to be a part of it! Bloorview is now developing action plans to address areas in which the survey indicates we can improve, such as recognition and compensation (59.9 per cent vs. 62.2 per cent). As part of its new strategic plan, Bloorview is creating a proactive human resources plan to ensure we offer a workplace where employees feel valued. One recent initiative is an improved vacation policy that supports a healthy work/life balance for staff. Bloorview is delighted with our workplace satisfaction results and will continue to look at ways to improve our scores.
Managing finances Bloorview Kids Rehab is committed to sound financial management.
In 2007, each of 10 full-time Bloorview scientists generated an average of 4.9 new grants and 5.4 publications (above the external benchmarks of two and three respectively) and almost 60 articles appeared in high-impact, peer-reviewed journals.
Last year we received permanent funding increases in a number of areas from the Ontario Ministry of Health and Long-Term Care. Because of this funding and the time required to recruit specialized staff – for example, child development specialists in our satellite clinics – the hospital reported a surplus of $1.1 million at the end of 2007-08. This represents 1.6 per cent of our total revenue.
Our current ratio of short-term assets and liabilities for the year is 1.2, demonstrating that the organization is easily able to meet short-term obligations. This amount was at the middle of the range set in our accountability agreement with the health ministry. When considered in the context of our investment assets and absence of long-term debt in the hospital, Bloorview is in a very solid financial position.
Employee satisfaction in the workplace is critical to retaining excellent staff and attracting talented new recruits. In 2007, Bloorview participated for the second time in the NRC Picker staff-satisfaction survey with other Ontario teaching hospitals and community hospitals. We’re pleased to report that more than half of our staff participated in the 2007 survey – about a 10 per cent increase from 2004 – and more than double the industry average. In terms of commitment to place of work, 64.5 per cent of Bloorview respondents gave a positive rating, which is significantly higher than the 57.4 per cent average for Ontario teaching hospitals and 55.9 per cent for Ontario hospitals.
Bloorview’s financial statements are available at our web site at www.bloorview.ca.
We wish to thank the children, youth, parents, staff and partners who helped us illustrate this report! Writing: Louise Kinross | Design: Sara Purves | Photography: William Suarez
Bloorview respondents also scored higher than their Ontario teaching hospital counterparts in four out of six
Photo Reprints: Peter Power and Fernando Morales/Globe and Mail; Aaron Lynett/Toronto Star; Tom Arban; and Jim Atkinson, MediMedia Group, courtesy of Toronto Rehab.
by numb er Outpatient visits Inpatient beds Children in northern Ontario seen by a fly-in team of Bloorview and SickKids craniofacial specialists Total clients
Student doctors, nurses, therapists, teachers, engineers, psychologists and social workers
Hours contributed by Bloorview volunteers
Years in operation
Bloorview media stories
"The halls at Bloorview are always alive with the sounds of joy in the face of challenge. The clinicians and researchers there do awesome work helping to enrich the lives of the children and families who attend this world-class institution." Dr. Denis Daneman Pediatrician-in-Chief, The Hospital for Sick Children Chair, Department of Pediatrics, University of Toronto
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