Caregiver health affects us all, researchers say

Many of you asked for more information about the national roundtable on the health of parents of kids with disabilities last week. At the meeting in Ottawa we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie. Thanks Jamie!

Caregiver health affects us all, researchers say
By Jamie Brehaut

The health of caregivers is increasingly important from a policy perspective. For example, it’s apparent that parents who care for their disabled children at home are enormously valuable to the health care-system, which would otherwise incur considerably more cost providing institutional care. So understanding how to help keep caregivers healthy and providing them with tools to provide effective care makes good fiscal sense. Furthermore, it's becoming clear that caregivers of severely disabled children are only the tip of a very large iceberg. Childhood chronic conditions can have implications for caregiver health, which may put as many as 25 per cent of Canadian parents at risk for caregiver-related health issues.

In one study of 468 families of children with cerebral palsy, we compared the health of these parents to a random sample of Canadian families. Caregivers of children with CP (regardless of degree of disability) were at greater risk for a wide range of psychological and physical health problems, including emotional problems, back problems, headaches, asthma, heart disease, and many others.

In another study using Statistics Canada datasets, a broad definition of childhood health problems that included nearly one-quarter of Canadian families with young children showed that caregivers of children with these broadly-defined health problems were about 2.5 times more likely to report both depressive symptoms and chronic physical conditions.

While the majority of studies measured caregiver health at one point in time, we used Statistics Canada data to measure the health of caregivers over time, every two years, for a period of 10 years. Results showed that instead of compounding over time, health effects remained relatively consistent. However, caregiver health was affected by the complexity of the caregiving situation, with caregivers of children with more complex health problems consistently reporting poorer health.

The results of this work suggest that caregiver health is a public health issue, affecting a much broader range of caregiving situations than was previously thought, and potentially affecting as many as one in four Canadian families. There are important psychological and physical health implications of caring for a child with a long-term health problem or disability. And while there are also clear positive aspects of being able to provide care for a loved one, we need to know more about how to set up the conditions for successful caregiving, and whether some challenges parents experience can be prevented with better services and public policies.

This work has spawned several ongoing projects, including one that will use health administrative data to better understand the factors that contribute to caregiver health issues, and another focused on understanding successful parenting strategies in families of children with complex lives.

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Walker's gift

Canadian journalist Ian Brown spoke at the National Roundtable on Caregiver Health in Ottawa Friday. Ian is the author of The Boy in the Moon, an award-winning memoir of his family's experiences raising son Walker, who has a rare genetic condition. Walker, 14, can't eat or speak, wears diapers and punches his head mercilessly.

Ian spoke about a health system that's so specialized, paper-based and unwieldy that it adds a whole new layer of stress and helplessness onto the lives of parents of children with complex conditions. But what most struck me about Ian's talk was his assertion that no health professional ever helped him address the deeper question of the meaning of Walker's life.

"It was seeing him in pain, when he hit himself, that was most unbearable," Ian said. "Not a day went by that I didn't despair of relieving Walker's pain or that I didn't hate myself. Yet there was no one to talk to about this bottomless abyss of darkness.

"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child."

Ian spoke about how he has come to see that children with intellectual and physical disabilities "make up a community of profound value for the rest of us if we can shift the way we think." He noted that in our cure-obsessed culture, children like his son discourage doctors, leaving them with a sense of resignation. "But there is another way to approach the problem of the incurably disabled," Ian said. "I accept Walker as my equal, not just as someone who needs my help. He is someone who can teach me way more than I can teach him."

Ian noted Walker's propensity to knock glasses off tables -- often waiting for the split second when his father wasn't watching to jump into action. "I used to think he was a psychopath," he said. "But when I tried to stop fixing him and tried to understand him as he is -- not as I want him to be -- I realized he laughs when he does this because he has succeeded in showing me that sometimes he can be smarter than me. I imagine that's a liberation for him, but especially for me. It frees me from the impossible standards of normal success in our cure-oriented world. Walker's gift is that he makes me slow down and notice the value of being 'as I am' and 'as he is.' It's an antidote to the grinding survival of the fittest."

Recalling his visit to the L'Arche homes in a village north of Paris -- where people with intellectual and physical disabilities live with able-bodied assistants who choose to support the community -- he said: "I have rarely felt so alive and so alert because I could concentrate on what was happening, as opposed to what was supposed to be happening. I didn't have to exhaust myself trying to fix the problem." He noted that days at L'Arche were organized around the sharing of breakfast, lunch and dinner -- whereas in many facilities for kids with severe disabilities, children rarely eat together. "The efforts of the caregivers there are to make the children more like us -- 'normal.' They are trying to fix someone or cure someone or improve someone so they can be included in our lives. I'm not sure how people came to call that inclusion. Why don't we make ourselves more like them? Why don't we include ourselves in their way of being?"

Ian spoke of a dream community he envisions for Walker's future. "It would be a village of homes created for and by the disabled, with a dozen extra studios. People like us -- artists, musicians, doctors, scientists, researchers, parents who need a break -- could go and stay in the studios for three weeks at a time. The only requirement is that we eat breakfast, lunch and dinner with the residents and once a week we have to give someone a bath. The rest of the time we can focus on our work. In that three weeks, we would be included in the world of the disabled in a way that would change the way we think. We would no longer think of them as 'the other' but as a human being who has a contribution to make, however subtle it is, and no matter how unwilling we are to recognize it." This, Ian says, would lead us to "see the world in a new, fresh, original, and free way."

Some of Ian's suggestions for improving health care for children with severe, complex disabilities included: an electronic health record so that parents don't have to repeat their child's history interminably; a national disability iPod app where parents could search for services in their area; and a dedicated waiting room in hospitals for children with sensory and behaviour issues. He questioned how it could be that if he wanted a new knee he might have to wait in the system for six months, "but it took eight years before we could find a place where Walker could be cared for adequately."

"To 'care for your own' is an ancient impulse," Ian said, "but children with complex disabilities are often beyond the care of the average family. Instead of talking about family-centred care, we need to talk about community-centred care. It takes a community in every case. A family isn't big enough or deep enough."

The national roundtable was funded by the Canadian Institutes of Health Research and I will report its findings in future.

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Inclusion is 'about the environment, not the kid'

Dan Habib (second from right) is a photojournalist and creator of Including Samuel, a documentary that chronicles his family’s efforts to include his son Samuel (second from left), who has cerebral palsy, in every part of their lives. The film also captures the experiences of four other children and adults with disabilities and their families. I talked with Dan about what he learned about inclusion during filming. And on a related note, check out this World Radio Switzerland story today: Debate sparked on disabled children in regular classrooms.

BLOOM: How did the film Including Samuel come to be?

Dan Habib: When Samuel was about two, my wife went through the NH Leadership Series at the University of New Hampshire's Institute on Disability. The IOD is one of 67 centres for disability studies around the U.S. They brought in national experts and self-advocates. She realized it was an incredible way to learn about the education, health-care and legal systems. We wanted to be on the same page, so I took the program and it had a profound effect on me and how I saw Samuel's future. It gave me a vision for his future beyond what I could have imagined. Suddenly, instead of thinking of all the limitations, I was thinking about possibilities. I was meeting role models who were doing incredible things in the world. It got me thinking about inclusion. When Samuel was three, he got very sick: he had a tonsillectomy and aspirated blood and developed pneumonia. I'd started taking some photos in the hospital and his doctor knew I was a photojournalist and said "Why not tell the story of what it's like to be a parent of a child with a disability?" It was cathartic – to have something to do other than worry. And then I was showing my still photography to a group of high school students and they said: "We like your pictures, but without seeing video we can't connect." That's when I started to do a film. I did it while I was still a full-time photo editor. After it came out and gained momentum I pitched the idea of a job as a filmmaker in residence to the Institute.

BLOOM: Why does inclusion matter?

Dan Habib: From a personal point of view, school is the hub of our community. When we thought about what we hoped for Samuel – it was that that he'd be a participating and fully-welcomed member of our community. That meant attending his local school. If the school is truly welcoming, as they should be to every neighbourhood child, then a child can be successful in any environment with the right supports, which is what the law says in the U.S. Attending the local school has a major social impact. Because Samuel goes to school with his friends, they're over at our house every day, they know his Dynavox voice device, they know he plays baseball, they know he loves NASCAR and dinosaurs and volcanoes. He's not the kid in the wheelchair. Everybody knows him and they talk to him and with him. From an educational perspective, every piece of research we've been able to find shows better academic achievement for kids in inclusive settings. And we're seeing that for kids without disabilities as well. At the University of Wisconsin, they're working on a study that shows that kids without disabilities become much more engaged in the curriculum and retain more when they're working in partnership with kids who need some support or mentoring. They also find behaviour is better because kids become more patient and compassionate. When you're in a truly diverse environment – not just ethnicities, but socio-economic backgrounds and abilities – that's how you develop social and emotional skills. When I talk to audiences I ask them to think back to when they were at school: 'What played a greater role in who you are as a person today – relationships or academics?' One-hundred percent say relationships. That's a good thing to remind educators. A lot of school is about social-emotional development.

BLOOM: What did you personally learn about inclusion while working on the film?

Dan Habib: I've learned inclusion usually succeeds – not necessarily because of money or technology, although they help – but because of leadership from the top administrators in a district and attitude. And the attitude being that all kids deserve to be in a general education classroom and can benefit from it. And that all kids can achieve. It's an amazing thing how many educators don't believe that – how many teachers in regular ed and special ed don't have high expectations for kids with disabilities. When inclusion doesn't work, we blame it on the kids. It's because of this kid's particular qualities. In the U.S., the law is that you are in the least restrictive environment with the proper supports. I really work hard in the film and my presentations not to blame teachers. A lot of teachers, once they try inclusion, are astounded that it's not as hard as they think it's going to be and they believe they become better teachers as a result. Some teachers have told me this is the most rewarding experience they've had. But it only happens with supportive leadership, so that if a teacher is struggling, they get the training or supports they need. Universal Design for Learning curriculum and technology are important. Universal design is curriculum designed for all kinds of learners, whether they learn best from auditory, experiential or tactile experiences, or through reading. Universal design uses multi-media and technology like smart boards. A complaint of teachers is that they have to constantly modify curriculum, but universal-design curriculum comes in already modified. And even kids who have one learning style learn better when they see the information presented in a couple of different ways.

BLOOM: Is inclusion more possible for kids with certain types of disabilities?

Dan Habib: You show me any kid who you say can't be included, and I'll show you a kid with similar characteristics being included somewhere else. It's about the environment, not the kid.

BLOOM: I'm frustrated that there are no options for my son other than a life-skills program, when I feel he could still be making academic gains.

Dan Habib: I believe life skills are best learned when a kid is living life with peers. You can't sit and teach a kid life skills in an artificial environment. If we're focused on getting a kid to tie his shoes and brush his teeth, we're aiming the bar low. Samuel will never tie his shoes or make a sandwich, but people have told me he's made a bigger impact on them than anyone else they’ve ever met in their life. I heard Amanda Baggs, the autism rights advocate, in an interview and she said: "I can't tie my shoes, but I get paid thousands of dollars to give a speech. I can pay someone else to tie my shoes." That said, it can be scary for some parents to include their child in a regular-ed classroom. They may fear that their child will be bullied or fall behind. Or they’re afraid their child may lose the supports they need to succeed. It’s really important to understand the parents' perspective, and talk about what it's like for a parent to navigate the system and try to advocate for their child.

BLOOM: Is inclusion harder for children with intellectual disabilities?

Dan Habib: Inclusion is possible for everyone, but our society does have stigmas around certain types of disabilities. If a child has an intellectual disability there are lower expectations for that child. If a child has behavioural or emotional issues they're seen as scary or dangerous. A child with a physical disability may not be able to get into his or her school. I think there's a particular stigma against kids who are non-verbal. In our society, if someone can't talk, we associate them with having less intelligence, lower our expectations and don't work as hard to include them.

BLOOM: Is inclusion easier in the younger years?

Dan Habib: Generally people see inclusion becoming more difficult as the curriculum becomes more demanding. But I think there will come a time when we look back on the segregation of kids with disabilities like we do now on segregation by race. It doesn't make any sense. It's very strange and artificial. What are the limits of inclusion? We haven't even tested that theory yet. We're doing such a bad job of it in most places. Parents have to make tough choices. They're often forced to accept a segregated setting. I've never met a parent who said: "My first choice is not to have my child be part of the community school."

BLOOM: Are there times when a specialized, segregated program makes more sense?

Dan Habib: If a school is very supportive and inclusion is still not working, there are a couple of things to keep in mind. One, just because a child leaves a school for a certain amount of time, doesn't mean they can't come back. And two, there are alternative settings – not typical mainstream classrooms but not self-contained classes. Many kids can benefit from more creative, alternative settings. There are times when there's a level of crisis in a child's life that makes inclusion difficult – a mental-health crisis or physical crisis – so we need some specialized programs. But there are far too many of them.

BLOOM: What impact did you hope your film would have?

Dan Habib: When I was making it, my public hope was that it would have a big impact in New Hampshire, and my secret hope was that it would have an impact nationally. The impact has far exceeded anything I hoped for. It's been broadcast on national public television, shown at film festivals around the world and translated into 17 languages. I've given over 200 presentations in 30 states and Canada. It's been an amazing journey.

BLOOM: Is your work at the Institute focused on promoting Including Samuel – or are you working on a new film?

Dan Habib: My work is all film-based. I'm still doing a lot of work with including Samuel – about two-thirds of my time. But while I was making that film, people kept saying "what about kids with emotional and behavioural challenges?" I'm working on a new film that will be out next year that looks at inclusion for these children. I've followed one young woman over the last year and documented her life and how she made her way through her senior year with the support of a lot of people after having lived homeless with a drug-addicted mother and selling drugs herself.

BLOOM: What advice would you give other parents as to how to pursue inclusion?

Dan Habib: The first thing is having a vision for your child. What do you want for your child? We want our child to be happy, to be a full member of the community, to learn a lot and to go to college, and that kept pointing to him being in a regular local school. It's about being involved in your kid's life and working hard to be a teammate with the school – to be a problem-solver and not to be antagonistic, but not to be a pushover. You need to be the squeaky wheel and be forceful, and you need to know the law as well as you can. One thing we've always done is tell teachers: "Don't be afraid to fail sometimes. We'd much rather you try and fail." We don't expect our teachers to be perfect.

BLOOM: Tell me a bit about Samuel now.

Dan Habib: He's 10 and in the 5th grade at the same school. Throughout elementary school, inclusion has worked really well for Samuel. It's not perfect, of course, but we've had a great time with a very problem-solving approach. We've had a lot of communication by e-mail and notebooks and meetings. We're all on the same page and it's a matter of working together to figure things out. Challenges have been logistical, but never out of ill intent. Samuel’s doing theatre. One of his friends suggested that Samuel would be able to drum. So he's doing drumming in music at school – whatever that may look like. He played baseball in the spring and will go skiing this winter. He's done karate and judo and rides an adapted bike. He loves video games, PlayStation and YouTube. In most ways, he’s a pretty typical 10-year-old.

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A dentist with a different approach

A dentist with a different approach
By Marcy White (above with Jacob)

I took my eight-year-old son to the dentist. His appointment was the last one of the day, at 3:30. From the moment I woke up, I felt a ball of dread bouncing around in my stomach.

Taking Jacob to any appointment is an ordeal. Physically, it is difficult for me to carry him into the car. There is a lot to remember to bring with us, including bibs, a change of clothing, diapers and – depending on the time of day – pre-measured medication loaded into syringes, his food and his feeding pump. Emotionally, medical appointments are challenging because Jacob hates being examined. He yells, his only way to protest, for the entire duration of the meeting.

As much as I tried to put the day’s consultation out of my mind, it kept popping back into my consciousness and I imagined the sound of Jacob's angry screams reverberating in my ears.

His school bus arrived home at the usual time, 3:10. I immediately placed him into his car seat and clumsily heaved his 100+-pound wheelchair into the back of my van. During the 15-minute car ride, I told him where we were headed and reminded him that he was a big boy and didn't need to be scared.

I explained to Jacob that the reason we were going to a new dentist is because this is the dentist his sisters go to. Sierra and Jamie really like him and we thought Jacob would like him too.

For a child who’s fed by a tube inserted directly into his stomach, one would think that dentist visits were not necessary. Ironically, that is not the case because the act of chewing cleans teeth, in much the same way as a toothbrush does. Because Jacob doesn’t chew, plaque accumulates in his mouth at a much faster rate and he needs a dental exam every four months.

Until that day, Jacob had always seen an experienced dentist, a professional who rarely spoke directly to him. My son’s typical behavioural pattern was to start screaming uncontrollably the second his wheels crossed the threshold of the exam room.

Jacob's screams are incessant. They leave him soaked in sweat – as if he has just emerged from a shower. He chokes during the appointment because he cannot swallow all the secretions that his yelling causes. In short, the dentist visit is torturous for all involved, but it's hellish for my son.

Sadly, most of the medical professionals we've encountered over the course of Jacob's eight years have had virtually no social interaction with him. I cringe each time the doctors ignore my son – the patient – and speak only to me. When I inform them that Jacob understands our conversation, they still don’t interact with him. They often begin their examination without asking Jacob’s permission to touch him or explaining what they will do. I didn’t expect today to be any different.

As we entered the small, non-air-conditioned office we were told that the dentist would see us shortly. I wheeled Jacob into the waiting room and banged into a chair along the way because the aisle was not wide enough for Jake's wheels to pass easily. I sat down next to my son and reminded him about what would happen during the appointment. A few times his mouth contorted into the saddest frown that made me want to cry, but Jacob was able to compose himself. He was trying to be brave.

The room was hot and stuffy and I worried that the temperature alone would upset him. A friendly hygienist came up to us, crouched down and told Jacob that it wouldn't be much longer until it was his turn. Jacob looked at her and listened while she spoke to him. I can’t remember the last time someone at a doctor’s appointment thought to bend down and speak directly to my son. The simple act of conversing with Jacob, at his eye level, was enough to make me notice that so far this appointment was different from most of the other ones we've been to.

A short while later, the dentist, a tall, lanky man with a big smile, walked into the room and promptly shook Jacob's hand and said: “Hi Jacob, my name is Ed.” Instead of breaking into an ear-piercing shriek at the sight of this stranger, Jacob lifted his head to look at the newcomer. He was curious and willing to let this person speak to him. Ed sat down on his stool and explained, to Jacob, what he wanted to do during the appointment. He then asked Jacob if it was okay with him. Treating my son like a person was all it took for Jacob to listen and not scream. When it came time for the actual exam, my son was calm and co-operative.

My heart was racing; I was amazed by Jacob’s behaviour. I couldn’t believe this was the same kid whose screams are legendary at the hospital where we attend most of our appointments. I was so proud of my son and felt like giving the dentist a huge hug. I tried explaining how dramatically different Jake behaved and how talking directly to him made such a difference. I don’t think Ed fully understood the magnitude of this event and how it altered things for us.

Later that night, when I replayed the afternoon in my head, I felt a heavy sadness in my chest. I realized that during all the previous appointments Jacob was probably screaming for someone to explain what they wanted from him. It was terribly distressing to me that it took eight years to find someone who was willing to look past Jacob’s physical impairments to see the person in the wheelchair. I imagined how different the past eight years would have been if the doctors who had ignored my son had treated the whole person he is – and not just a body part.

Since that momentous day, Jacob and I have changed. At the start of medical appointments, I tell the professional that Jacob does not like being examined and doctors scare him. But if they speak to him and explain what will happen, he might be more co-operative. So far, it’s worked. Appointments are still physically difficult, but they are not as terrible as they once were.

And if you need a dentist, I can give you the number of a great one.

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'To be seen and loved'

When my son Ben was in hospital here earlier this year, Owen Turney (right) came for a visit. I got to know Owen's mom Jennifer through Holland Bloorview years ago, and it was through Jennifer that we met Sallyanne, who works with Ben. Sallyanne spent a lot of time with Ben in hospital. I'll never forget the look of mischief and merriment on Owen's face the morning the two boys surprised me in my office a few months ago. Owen was known for his radiant smile and it was impossible not to smile back. He provided a much-needed dose of joy that day.

Owen died unexpectedly a week ago, early one morning, in his own bed, while sleeping. I'm honoured to share this piece written by Jennifer and read at Owen's funeral. It holds a very important message.

By Jennifer Johannesen

Owen provided light and goodness to all those around him. He graced us with the gift of his smile, his laugh and his wide-eyed gaze. His effect was so profound, it is easy to imagine that he was heaven-sent for the sole purpose of bringing love to us earth-bound mortals.

There is no doubt: his energy was generous and loving and all encompassing – his value to this world is not to be underestimated.

But as I contemplate this thought, the circle of Owen’s life now complete, I know that there is much more to his story than this.

Owen came with immense challenges. Throughout his entire life, he was impossibly – sometimes unbearably – vulnerable and needy. Was he this way solely for our benefit? Surely there are easier ways for a soul to spread love in the world.

I believe he came as he did because he was on his own path of discovery, growth and healing. To only see him as an angel sent from above is to possibly miss the entire point of his life.

Perhaps his brilliant light shone because Michael and I chose to expose him to the world, love him completely, and not hide him away – and this community responded by looking – by holding our son in its compassionate, loving gaze. Maybe this is what he came for – to fulfill his soul’s need to be seen and loved, broken body and all. Perhaps his karmic need to be loved was so great that there was no option but to arrive in the body he did.

If this is the case then the value of Owen’s life is realized not in spite of his disabilities, but because of them.

Owen came to us, in his perfect broken state, seeking unconditional love and care. Your profound expressions of love and compassion, every day of his life, showed him he was worthy – giving him the lightness to smile back and say thank you.

Owen could have remained invisible, as so many like him are. Instead, we loved him deeply – and because of this I believe he returns home fulfilled and whole.

Please read more about Owen at Jennifer's blog: Yes or No.

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Eeyore being a zebra

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Mission accomplished

Ellors Madak (right) has been found, and is being held, at a nearby Book City where Ben left him a couple of weeks ago. Ellors -- who teaches anyone who will pay him how to fly spaceships -- is one of Ben's beloved Star Wars characters. Ben has a habit of leaving characters in places where I can only imagine they undertake special missions. Ben has been going into amazon.com and pulling up Ellors every night to remind me that he's missing. So imagine our surprise when I called Book City last night and they confirmed that Ellors was being held at the cash and we could pick him up today. Hopefully he's no worse for the wear!

We learned today that BLOOM won bronze in the 2010 Digital Magazine Awards in the health and beauty category (not sure why they are paired together!). Our brilliant designer Sara Purves had put in an entry which was a fabulous surprise to me.

Flame is a band from upstate New York made up of people with a variety of physical and developmental disabilities. Check them out.

And finally, next Friday I'll be in Ottawa at a national roundtable on the health of parents of children with disabilities. As part of this roundtable, I'm filling out a survey on Oct. 28 (tomorrow!). I'd love your input on the following two questions:

1. What are the most important caregiver-related issues that need to be the subject of future research?

2. What needs to happen to support families of children with disabilities more effectively?

Remember, this is in relation to the health of parents! Please send me your thoughts!

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