What message do we need to convey?

At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.

I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes about disability.

I had a most interesting discussion with a friend who suggested that this negative picture may be feeding the stereotype among doctors and the public that life with disability isn't worth living.

With tremendous pressure to contain health costs, she said, we may see an unexpected effect: doctors and government officials making a case for not saving as many children in the NICU, not putting in as many traches, and not giving parents a choice about raising a child or withdrawing care.

At a presentation on care for children with complex medical needs at the National Symposium on Integrated Care last week, it was noted that the most medically complex kids make up less than one per cent of Canada's child population (67 per cent), but eat up 33 per cent of health-care costs.

Last year, at a Canadian conference on the ethics of care for children with disabilities, we heard that about 20 per cent of the pediatric population in the U.S. generates about 80 per cent of its health-care bill.

It's not hard to see why people fear that the drive to cut costs plus research and media stories that paint a gloomy picture for families may make kids with complex disabilities vulnerable.

My friend noted there will be growing pressure on women to terminate when a diagnosis is made prenatally -- to save money and "protect" the family. The bioethicist Margaret Somerville wrote last year about a plan to make Denmark "Down syndrome-free" by 2030 by promoting abortions.

The focus on hardships in research and the media also affects families raising kids with disabilities. When you hear you're at increased risk for depression, anxiety, and, in the case of autism, divorce, and you read some of the literature about siblings, it's hard not to question yourself. Am I falling apart? Are my other children being damaged? Can I handle this? It's kind of a set-up for failure.

But you can't show any vulnerability. You're constantly fighting the stereotypes, trying to prove that really your child is valuable and really you aren't a complete mess as a parent or partner.

Parents of kids with disabilities want research because we’re told that we need evidence to influence policies on supports and funding. The reason all of the academics are in children’s rehab is because they want to make things better for families.

But do we have specific examples locally or elsewhere where services were put in place as a direct result of study findings -- as a way to mitigate stresses?

I can't think of an example in the time I've been raising Ben. Maybe one will come to me.

My friend was suggesting that we need more studies showing the value that disabled children bring to their families and communities.

There are studies, like this recent one in Child, Care and Development called Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome (pages 817–828) by Holland Bloorview researcher Gillian King.

As King writes in the study:

The findings should guard against the inaccurate assumption that there are no positive benefits in raising a child with a chronic disability, or that families experience unrelenting challenges and stresses. Parents may find it useful to know that other parents report many benefits, and the findings may reduce their uncertainty and fear regarding the journey ahead. The information can assist new parents to realize that benefits and enrichments will accompany the hardships, thereby providing a sense of hope. On a societal level, the present findings may encourage community members to view children with disabilities in a balanced light, not simply as a burden.

But do studies like this get any play in the media? I don't think so. Typically the media is looking for conflict or drama or even just simplicity. They don't do complexity and ambiguity so well. And that's what life is like raising kids with disabilities. It's full of beauty and joy and pain and challenge.

So how do you think we should be telling our stories? How can we create a climate where the public supports better services for families of children with disabilities?

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Costs, quality-of-life ratings put complex kids' care at risk

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia.

“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in the care of children with disabilities at Montreal Children’s Hospital last week.

“The rallying cry is that we need to cut down on the use of what are called marginal therapies – on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit. It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”

Dr. Feudtner showed a photo of one of his patients – a baby who uses a ventilator – and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”

In analyzing the costs and benefits of treatments, economists measure quality-of-life years gained or lost as a result, he said. These analyses are typically based on models that assume low quality of life for people with chronic illness and disability.

Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.

A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.

Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better, than before.

“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?

“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”

That’s because ratings are determined by able-bodied people who try to predict the impact of disability on everyday life.

Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.

“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?

“Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”

In a study of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. Those who reported the direst finances had children whose health had declined most steeply.

“It’s hard to figure out how to capture these costs,” he said. “But to disregard them means that you really aren’t operating from a societal perspective.”

With unsustainable health-care costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”

Joey, above, is a child with complex medical needs.

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Hospitalization costs

When my Dad was hospitalized last year, we quickly realized that our presence – or that of someone we hired – was necessary 24/7. My dad had no short-term-memory and became confused without someone to orient him. We hired a personal-support worker to sit with him at night.

The second evening, after receiving a diagnosis of advanced lung cancer, a nurse told me: “He may not make it through the night.” We were moved to a private room.

No one explained what to expect in terms of his death or how to comfort him. We were pretty much dumped; the only time we saw a nurse during that long night was when I went searching to beg for morphine.

If my mother and I hadn’t had our personal-support worker with us, I don’t know what we’d have done.

Those two nights cost $500. Afterwards, I wondered how on earth people managed the financial expense of having a vulnerable loved one in hospital for an extended period.

I now have some experience with that.

As you know, Ben had major hip and knee surgery on April 13. My husband and I took the week off. We took Ben home four days later. The next week we returned to work and had workers care for him at home from 9-4. It was then discovered that the hip hardware had dislodged and he had to have a second surgery to redo the hip on April 27. After that, he came to Bloorview where he was in a body cast for six weeks. He’s still at Bloorview doing the hard therapy it will take to get him walking again.

Ben is non-verbal and primarily uses sign language. I can’t imagine any parent leaving a non-verbal child alone in hospital – and certainly not one trapped in a body cast. We have three other children.

My husband sleeps at the hospital and during the week we have workers from 9 to 4. We have spent more than $6,000 in workers over the last 10 weeks.

We are not eligible for Assistance for Children with Severe Disabilities – an Ontario program to help parents cover extraordinary costs. It has an income cap of $63,421 for a family of four. However, even if we were eligible for this benefit, we would have spent more than the maximum $430 per month in the first week.

We do receive Ontario’s Special Services at Home funding – designed to get Ben into the community and provide parental respite. We are grateful for this funding, which gives us about five hours a week of worker support.

But our worker expenses over the last 10 weeks are significantly more than the annual amount we receive through this program.

When I asked the folks in Bloorview’s family resource centre about any other funding sources, they suggested I appeal to a service organization. No parent wants to ask a service group for charity.

They also suggested I call respiteservices.com, which is a group of agencies working together to provide comprehensive respite services in Toronto. I spoke to the facilitator who said she’d look into our situation, but that there weren’t any obvious sources to tap.

We are lucky. Our family has helped us. I've heard about families whose kids have been in rehab for months and gone bankrupt, lost houses, or had to sell businesses. The only way you can qualify for employment insurance – to take time off with your child – is if your child has a life-threatening condition. And that compassionate-care benefit covers only six weeks.

Nobody likes talking about money. But we need to recognize the true costs of hospitalization for kids with complex needs, even in our publicly-funded system.

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