What works in the clinic may not work in the real world

By Steve Ryan

Most people assume that technology is a game-changer for children with disabilities. Using it helps kids to walk faster, wheel further and communicate better. You can see the difference it makes. It levels the playing field. It turns disability into ability.

Or does it?

Why is one in four assistive devices abandoned by families?

Why do 50 per cent of Canadian parents with children who lack functional speech say that none of their child’s communication technology needs are met and a further 20 per cent have only some of these needs met?

Why do more than 3,000 American children who use wheelchairs and walkers have serious falls that result in trips to hospital emergency departments each year?

We do not know.

What we do know is that assistive technology can be pricey. This is partly because many devices must be custom-made or individually adapted by clinical teams. It’s also because the market for these products is small and spread out geographically.

We are fortunate to live in Canada. Our healthcare system provides universal coverage for medically necessary services based on need rather than ability to pay. Provinces must meet the conditions set out under the Canada Health Act to get an annual share of $30 billion dollars in federal funding for their health insurance plans.

Yet the Act is silent on what services are medically necessary. That’s why provinces vary widely on which technologies they fund.

Ontario’s coverage is substantial compared to many. The province funds about 75 per cent of most “essential” assistive devices for everyday activities. Wheelchairs, walkers, speech devices, powered prosthetic hands, and ankle-foot orthoses are among 8,000 devices co-funded by the Ontario Ministry of Health and Long-Term Care through its Assistive Devices Program.

The program requires rehab professionals with special training to assess device need, discuss options with children and families and prescribe equipment. Families must buy or lease their devices from registered dealers to get provincial funding. Technology teams must also teach children and their families how to use some devices.

With all of these checks and balances, isn’t it reasonable for families to expect that these essential technologies will work?

As a research engineer at Holland Bloorview in the ‘80s and ‘90s, I teamed with therapists, families, and manufacturers to develop better wheelchair seating, custom car seats, and special toilet seats for kids who needed support to sit. 

Under controlled conditions, we showed that kids who used our seating devices sat straighter and wheeled a chair better. We crash tested our special car seats to prove they were as safe to use as car seats sold in Toys-R-Us. We demonstrated that kids could sit on (and use) our toilet seat product on their own without being held by Mom or Dad. 

We assumed that this meant that our devices worked—and that they would work the same way in the real world, in family’s homes and communities.

We think differently now. We recognize that benefits we observed don’t necessarily translate into lasting changes in how a child functions in the real world.

The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s framework for thinking about measuring function: a child’s ability to do and take part in everyday activities. The ICF views function as an outcome of the interaction between the child and his environment. It considers technology as an environmental resource that can influence a child’s everyday activities.

So we think more now about how devices help kids and families do the things they want to do. Our teams consider how and why technology may help kids develop and their families live better.

We are developing much better ways to measure functioning that may be affected by devices. We ask families questions that go beyond “How much do you like the device?” We focus questions on activities that may change after getting new or different technology. 

For example, we want to learn how communicating with friends and asking an unfamiliar person for directions changes after getting a new communication device. Or whether, with a specially-designed seat, a child can now sit at the table to eat dinner with the rest of the family.

Of course we realize that we need to give children time to learn how to use a device and for families to work it into daily routines to really understand its influence. Important life changes may take days, weeks, or months to see. Sometimes changes may not happen. And sometimes no change is a good thing. For example, technology may enable a child with a degenerative condition to maintain an ability he or she would otherwise lose.

We know that products and services may affect children and families in different ways. Our teams observe and ask questions many times before and after kids get their devices because how they use them may change with time and among family members. The tricky part is being able to understand how much change is due to the child’s device, something else we measured, or something we may have missed. 

For example, consider a mother with young children in a small apartment. She may decide that even though a special seat that allows her child to sit independently on the toilet works, the product is too bulky to store when not used. She’d rather hold her child on the toilet.

Or perhaps stress in the family—a sibling birth or a return to full-time work—means that parents can’t follow through in supporting their child’s use of a communication device. So technology that seemed to support a child’s communication needs loses its impact at home.

Sometimes parents working on many goals with their child that involve technology and therapy simply can't do everything at once. 

This is why we need to ask lots of different questions and use different strategies to study the impact of technology.

Exploring the difference it makes will give researchers, service teams, manufacturers, policy makers and families clues about how, when, and what devices should be used, recommended, developed and funded.

Most important, understanding functional outcomes will help us to predict when technology that works well in the clinic will work well in real life for children and families. 

Steve Ryan is a senior scientist in the Bloorview Research Institute.

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Hanging around

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Poor health care a factor in early deaths

A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier.

The confidential inquiry, led by a senior research fellow at the University of Bristol, also found that people with intellectual disability are two and a half times more likely than the average person to die before age 50.

The researchers compared the deaths of people with intellectual disability with a group of people without disabilities who died at a similar age and of a similar cause.

They found over a third of the deaths of people with intellectual disabilities could have been avoided with good health care—more than three times the proportion avoidable in the general population.

"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says. "The inquiry found all aspects of the provision and co-ordination of care for people with learning disabilities was worse than the group without learning disabilities."

Writing at Conversation, a news website sourced by researchers, Heslop provides two examples:

James, who was taken to [emergency] after he collapsed with bleeding from his nose and mouth. Hospital staff were convinced he had only had a seizure despite his family saying they hadn't seen this happen. But an MRI scan later showed a haemorrhage. His family said that he had been in pain from 7 a.m. to 5 p.m. because they hadn't been believed.

Rachel developed a cough that gradually got worse. A general practitioner prescribed antibiotics but despite further requests for help, her mother was told Rachel would be better by Sunday. By then her condition had worsened. She was taken to hospital where she still didn't receive appropriate care. She died of aspiration pneumonia.

In addition to problems with care, "families of people with learning disabilities more commonly felt that professionals didn't listen to them," she writes. Of the deaths studied, 30 per cent of the people had limited verbal communication and 22 per cent did not speak at all.

At the time of their deaths, 64 per cent of the people lived in residential care with 24-hour paid carer support.

As I read this report I couldn't help recalling a chilling case I'd read about in The Night Shift by emergency room Dr. Brian Goldman, host of CBC Radio's White Coat, Black Coat.

Dr. Goldman shares this story of the emergency room misdiagnosis of a man with autism by Dr. Bruce Campana at Vancouver General Hospital.

"Some poor guy came in and he was autistic and about 30 years old. He was brought in screaming and violent, and he would try to reach out and grab people. The care woman came and said, 'Look, he always gets like this when he is constipated. Can you just give him an enema and get him out of here?' We gave him an enema. The guy was still screaming and yelling. 

"The care people said, 'This always happens. Can we just take him home?' So he went home. I came in for the next shift. You know that feeling when somebody looks up and they say those fateful words: 'Do you remember that patient you saw last night? He's dead.' 

"He, of course, had a ruptured appendix."

Dr. Goldman says he asked Dr. Jerome Groopman, a Harvard professor and the author of How Doctors Think, to analyze the mistakes made by Dr. Campana and his colleagues in this case.

"These are some of the hardest patients to take care of: people who are mentally ill, people who have developmental disorders like autism, and so on. 

"First, let's start with what is called a framing error. So this 30-year-old autistic man is put in the frame of 'constipation:' he's often constipated. We also have an availability error, meaning that what first came to mind is the diagnosis that occurred in the past. He's been constipated in the past. This is the same pattern so it's the same thing. That's what is most available in your mind. That also causes a cascade of what is called diagnosis momentum— it's like a boulder rolling down a hill gathering force. This is what it is; this is what it has been in the past. 

"There is also what is called an attribution error, and that is on the emotional side. We tend to find difficult patients [such as] people who we can't connect with emotionally, like autistic people or mentally ill people, difficult to handle. We don't like them often when we are physicians because they make our lives much more difficult. It is difficult to get a history from this man. So we are more apt to quickly attribute whatever is going on to this stereotype that we have, which is a flailing autistic man, and we want to get him out of the emergency department as quickly as possible. All of those factors in thinking and feeling coalesced to cause this tragedy."

I'd like to see a North American study that mirrors the one done in Europe on early preventable death in people with intellectual disability.

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A walk

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Animator finds beauty in what we try to hide

Rachel Johnson is a Hollywood animator producing stop-motion films that fall decidedly outside the celebrity culture of her town.

Her latest, Henrietta Bulkowski, is about a young woman with a severely curved spine who wants to see the world but can't even lift her head. With a sightline only of the ground, she builds a plane with a hole in the bottom to take her on her voyage.

The Toll Collector (above) is about a ballerina with abnormally long legs. She dreams of being a dancer, but instead hides her physical difference by taking the night shift as a road toll collector.

"As the film wrapped, I realized I had spent two years building and filming the most intimate secret I had," says Rachel, founder of Lift Animation. "My own shame." 

Rachel, who grew up with one leg four inches shorter than the other, had multiple operations as a teenager to break the bones in her short leg and stretch them with fixators over months in hopes of evening out her legs. But after years of complications that resulted in infections, accidental breaking of her bones and the need for reconstructive surgery, her leg was badly scarred and unusually shaped. And it would still be a bit shorter.

Rachel had dreamed of leaving the hospital to become a ballet dancer. Instead, she resigned herself to wearing long pants and pretending she wasn't different. 

But the years of painful procedures came out in her dreams. "I had nightmares about the hospital and everything that had gone wrong and being disfigured."

The only thing that eased the disturbing dreams was making art. "I didn't know what I wanted to do specifically, but it needed to start out undesirable so I could make it beautiful," she says.

She began by making sculptures of overweight women. "My mom was always overweight and thought she was fat and ugly. I thought she was beautiful. My whole senior art show was beautifying overweight women. Other people thought they were really pretty and I realized I had the power to change the way people see things."

She moved on to photography of seniors, and then stop-motion animation, creating tiny puppets from clay that are animated when still pictures of them making incremental movements are run as a sequence. "I've always wanted to sculpt realistic things with a twist," she says.

Rachel is currently pitching a feature film with a non-verbal character.

As she's been so successful in conveying the beauty and humanity of characters with physical differences, I wanted to know if she had considered a character with an intellectual disability.

"I did a short film about a woman with Alzheimer's but I got a lot of flack for it," she says. "It was a total failure. As the protagonist of a feature your character has to go through a character arc, where they start one way and end a totally different way. The woman with Alzheimer's had no control over how she was going to end her life so it was hard to craft an arc. She was incapable of the change and growing and learning most people can relate to."

Rachel says a child with intellectual disability would be an equally hard sell. Viewers "can't see the value of a person unless the person is in some way like them. If the character doesn't have the ability to change on a level that most people can relate to, they can't connect with the character. They don't get it."

I'm interested in how we can change stereotypes about disabilities that are deeply embedded at an unconscious level: these are biases that underpin a culture and which we are all raised on.

This gave me food for thought, listening to Rachel explain how the limits of narrative structure made it challenging to tell the story of a child with intellectual disability in a way that would have meaning for most people.

"There isn't enough exposure," she said. "People don't understand empathy because they don't have to. One of my very best friends grew up very sheltered. Nothing ever happened in her life. She would ask me the most inane questions about my leg. Then she moved to Africa for a year and she lost 40 pounds because she was so heartbroken by the pain and poverty and she changed. She became an empathetic person. But you have to be 'out of the box' to get out. Most people aren't born with empathy."

I hope Rachel takes on the challenge of creating characters from the most marginalized of populations, including mental disability, and showing us a different picture.

A longer interview with Rachel will appear in the December issue of BLOOM magazine.

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We call this 'zoo camp'

When we walked in to Nova's Ark camp this morning there was a large black pig sleeping on the lawn beside a pen with dozens of guinea pigs. 

Ben saw the guinea pigs and was fascinated. 

He spent the day on this farm east of Toronto, checking out the snakes, zebras, a camel, a monkey, lemurs, miniature horses and a large tortoise called Thor.

He asked if he could bring one of the guinea pigs home and the owner said he had to ask me. I guess we'll do a little research on guinea pigs first. 

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Camp

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