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Research neglects alarming obesity rates in disabled children

By Louise Kinross

Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama.

Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight management for typical children, Dr. Rimmer said.

Dr. Rimmer was speaking today at a consensus-building workshop at Holland Bloorview in Toronto bringing together international experts and families to look at research to address weight management in children with disabilities.

Dr. Rimmer shared a number of American studies that showed dramatically higher rates of obesity in children and teens with physical and intellectual disabilities and lower rates of participation in school gym class and recess and extracurricular activities. “There is a tendency to not take these children out for physical education or recess and to involve them in more sedentary activities,” Dr. Rimmer said. In addition, after-school programs and playgrounds in the community may be inaccessible.

We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

In addition to being socially isolated, youth with disabilities and obesity are more likely to have a host of secondary conditions such as high cholesterol, asthma, pressure ulcers, fatigue, depression, low self-esteem, high blood pressure and liver and gallbladder disease.

My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

Dr. Rimmer said that some tools that screen for weight issues don't identify problems in kids with certain kinds of disabilities. For example, using body mass index, which is a ratio of height to weight, doesn't work with children with paralysis.

Factors influencing the association between disability and obesity, he said, include: increased dietary intake; less physical activity; decreased fat-free body mass; lower resting metabolic rate, which is the rate at which you expend energy while at rest; and poorer heart function.

Despite the prevalence of obesity in children with disabilities, a disproportionate amount of U.S. government funding goes to research into weight management for children in general, Dr. Rimmer said.

He referenced a 2010 chart from the National Institutes of Health showing 116 federally-funded studies on obesity intervention for the general child population, compared to only eight studies targeted to children with disabilities. Dr. Rimmer noted that research on the general population typically excluded children with chronic medical conditions and genetic syndromes and those who don't walk or take medication. 

Dr. Rimmer said we need to learn from weight management programs that have been effective for the typical child population and adapt them for children with disabilities. “We need a systematic framework for developing guidelines, recommendations and adaptations.”

Dr. Rimmer spoke of a model that included convening an expert panel to assess whether existing guidelines target the disability population and creating focus groups where parents and youth with disabilities evaluate proposed adaptations. “We always find multiple holes in our recommendations after we go through the family focus groups,” he said.

Dr. Rimmer said it's generally not that difficult or costly to adapt programs, and that two common areas that need attention are training instructors on how to work with kids with disability and developing disability-friendly parent education materials.

Overall, adaptations should consider the built environment, such as the need for a ramp or access from a vehicle to a field; appropriate equipment; inclusion of all children in every game, sport or activity in and outside the class; and instruction for staff, for example, in how to communicate with a child with autism.

Dr. Rimmer said obesity is associated with carbohydrates and “our rates of obesity can come down demographically if can get refined carbohydrates, such as high fructose corn syrup, out of our diets.”

Inclusion is a right, he said, not a privilege.

Where everybody knows your name


















By Louise Kinross

Ben's done an amazing co-op program at Variety Village this year. He works at the club two to three days a week, cleaning equipment in the cardio room, counting inventory and helping members get set up on machines.  

Anyone who's been to Variety Village knows it's an exceptional place. There's a sense that everyone belongs: young and old, those who walk and those who wheel, those who speak and those who don't.

Today I went to visit Ben because he was having an assessment with a physio. I noticed as we walked around the track (he on bike) and through the halls that people stopped to recognize him. A guy in a wheelchair held up his fist to bump Ben's fist. Another one gave him a high-five. I was introduced to CEO John Wilson and he shook my hand and thanked me for Ben's contribution. Even an older gentleman who was walking around the track knew Ben.

Ben was relaxed and knew his way around. Did I say Ben was relaxed? Incredibly relaxed. He smiled while riding the bike. As we put it away he showed the physio and I one of the hand-powered bikes and signed that he wanted to try it too. Then he took that one all the way around the track as well.

This surprised me. For the last couple of years Ben's done very little exercise. We've struggled to find something that he can do and enjoys.

The only bike that ever worked well for Ben was an adaptive bike he used while an inpatient here at Holland Bloorview. He loved cruising around the halls and it gave him a great sense of freedom.

I wanted to get him one of his own—until I learned that it cost several thousand dollars.

I couldn't understand why it was so expensive, because the parts all seemed to be standard ones that are mass-produced. Welcome to the world of "specialized equipment" and its inflated price points. We'd tried to adapt regular bikes ourselves but without success.

Today I began to see how Variety Village's physical design and accessible equipment and welcoming culture made it easy for Ben to enjoy exercising.

The physio said an adapted bike would be wonderful for Ben. She also told us about personal training offered at Variety Village. The club isn't close to us, but I began to see how much it's worth the drive. Maybe my family could start working out there.

I've had some disturbing personal reminders recently of how unwelcoming people and places can be to people who are different.

A few weeks ago, Holland Bloorview life-skills staff presented findings of a review of 56 studies on friendship for youth with disabilities. Research shows that in general typical peers interact in a superficial way with disabled youth.

I get that. I see it.

And that's why I don't take anything about Variety Village for granted. What they've created is priceless.