Thursday, October 18, 2012

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?


I think you've asked the million dollar question. If parents become more capable and take care of their kids at home, showing that it can be done and that they are not such a drain on the health care system, the public will simply say, 'That's what we've been saying all along, take care of them at home, you don't need all of these services'. If better services exist, more parents will readily make use of them whereby the public says, 'you see, why bring these children into the world if you, the parent, can't even take care of them?'.
It's looking like a lose-lose situation.
I'm not quite convinced of the statistics you used though. There are many cost saving aspects, parents could be encouraged to take care of their children at home as much as possible by for example being able to employ themselves at market value as professional caregiver, (the case in New Zealand and Holland among others) would cost the government much less than housing/group home. The longterm social implication of such a situation is a paradigm shift few embrace though. In medical technology there are also 'hidden benefits' usually not calculated, such as experimental treatments, required for severely ill/disabled children that becomes widespread due to experience. Think of the use of incubators for premature babies, now commonplace. Once it was argued premature babies couldn't survive so there was no use trying. Heroic measures in medicine is no different than extreme sports athletes pushing boundaries that later lead to innovation. Has a trillion dollars of space research really given us such better lives? Do multi-billion dollar wars enrich our lives?
One might argue, well that's different, that's the harsh reality. I was thinking that humanity, on the other hand, is that other reality, balancing the waste, horror and malevolence.
Practically speaking change in policy has come about when society swells and moves in a coherent direction. Without popular support change will always be guerrilla warfare, grass roots movements.
For some of us parents, that fact that our medically fragile children will be buried before they can benefit from any significant change is a further disheartening blow.

Wow, Louise. Incredible post and so very true. It's funny because I'm new to the world of being a parent (and even newer to the world of being a parent to a child with special needs). Anecdotally I would imagine that most parents and families would say that despite the challenges, having this diversity within a family has had an incredibly positive influence. And you're right...we don't often hear about that. And we should.

I think part of the conundrum is that there are many voices that speak of the positives, but they are often very strident and/or blatantly Christian or religious, which many of us are not comfortable with. But, let's face it, in society whose values are largely materialistic, any difference and/or disability is a threat or not valued. The challenge is in our values which influence what and how we report. I also think this negative reporting relates to so much, even bullying. Anti-bullying campaigns basically have the wrong end of the stick. Its not about stopping bullying, its about promoting inclusion (of diversity, difference). But this promoting diversity & difference does not make a news story. Now I'm going all long-winded and will stop. BUT do you remember the airline story just a week or two ago? HEre in Canada we had our own airline story that demonstrated just how far out on a limb an airline would go to make it possible for someone with Down syndrome to fly ... including switching flights almost 4 times, desensitizing the person to the whole flight process, hand written notes with this is X's seat! and welcome X! and a night in a a hotel. ..

I'm not sure why there always has to be this either/or mentality. Can't we address the real problems and complexities of having and raising a child with disabilities AND acknowledge the profound changes and impacts our children have had on us and our other children? Why do they have to be mutually exclusive? I think there has to be, must be room for both. The trouble, I imagine comes from how the media "dumbs down" nearly everything -- all reduced to sound bites and cliched articles on Huffpost -- quickly read, quickly commented on, quickly discarded and forgotten. Meanwhile, all of us out here are actually LIVING -- both the good and the bad. I'm on a bit of a rant today, and I couldn't begin to address the alarming statistics you've illustrated about abortion and euthanasia. I can't imagine doing much more than I already do -- telling our story, the good and the bad, the positive and the negative, the profound and the banal --

Great post Louise!!! Very thought-provoking.

I have two thoughts regarding sending messages about hardships related to disabilities.

It seems to me that increasingly, raising a child with a disability is a choice- whether made prenatally,in the NICU or later, with a DNR which might include a decision not to treat pneumonia. I wonder if the people realize that most of the times death in the NICU is related to treatment being withdrawn due to QoL. Nor do they likely know that fluids/nutrition are not rarely withdrawn from infants who are breathing without support for the same reason. I think when disability is seen as a choice it changes the public's perception and possibly their empathy and complaints/demands for further services are viewed negatively.

The other thing is that there is a fixed budget for supportive services for disabled kids. Just ask the policy makers. I am told that complaining won't result in increased funding. Resources are strained. Maybe there could be benefit to parents collaborating with officials to redistribute the fixed dollars available or to find new and creative ways to make the limited funds go further to support more children.

I have found if you ask any parent of a disabled child if it is all worth it- the answer is a resounding "yes" in most cases. Yet, I don't see that message anywhere in the public sphere. The media only tells sad stories of parents giving up their kids or even killing them. I think that has to change.

Hi Eric -- I'm wondering if there are published studies about the benefits of paid caregiving roles for parents at home -- perhaps related to the ones in New Zealand and Holland you mentioned. It would be amazing to have evidence that shows the cost-savings when children stay home but there parents are compensated. I am going to look but let me know if you come across anything. Thanks for your enlightening comments, as always!

Hi Anchel -- With your background in journalism, maybe you can help us with a media strategy! I think it's easier for parents to focus almost exclusively on the positives when their kids are young, but when they become adults and the reality sets in (for some parents) that independence isn't going to happen, and in fact, many services will be discontinued because they were classified as "pediatric" panic sets in and there is an overfocus on fear of the future.

Nan -- I'm not aware of the Canadian story about the airline accommodating the teen. I'm certainly aware of what went wrong with American Airlines.

Do you have a link to the Canadian story?

Thanks as always for your comments. You hit on a really good point that if only inclusion could be seen as a key part of the money that is now being invested in anti-bullying campaigns. Thanks!

Hi Elizabeth -- i think we do a good job telling our stories in the disability community. I wonder how we can broaden that to attract the mainstream?

I was thinking that perhaps I could start doing little video clips of life at our house.

But you're right. The average person's attention span is so short these days, that there doesn't seem to be a willingness to take the time to understand the complexities of situations like ours. Thanks for writing!

Hello Anonymous -- thank you for posting!

You make a good point about how a number of factors have led the public to see having a disabled child as a "choice" -- whether by not aborting when a disorder is identified prenatally, or agreeing to withdraw care in the NICU. It's such a simplified way of looking at "choice," but it certainly feeds into the mentality that individuals made a choice for which they should now be wholly responsible. It also leads to judgement of those with disabilities, which doesn't bode well for support of services.

I think our readers would like to hear from an Ontario policy maker on the issue of restricted funds and how funds are distributed.

I agree that we as a group may need to become much more creative in partnering with the government, service providers, and among families, to get our needs met.

I think you nailed it when you talked about how the media stories that get play and linger with people are the extreme ones -- of desperate parents who have to relinquish custody or who kill.

My question is always how the big picture can be shown -- because I don't think it benefits anyone to paint a pollyanna version of childhood disability and impact on family -- but how do you get people to "hear" the complex story.

That said, it would be interesting to see a campaign where parents talk about all the positives that have come from raising their child.

Well I think the bottom line is that nobody would choose to have a child with a disability if given the choice in the beginning and thus you have that huge gap to begin with. Beyond that I think the best examples have been things like TV shows that feature disabilities (think Corky) and the Firecracker post yesterday...Reality TV show could backfire...if people see how complicated our lives are with unending appointments and disappointments they forget all the fun moments we share. It's a challenge, for sure.

Whether one considers childhood disability as a "choice" or "circumstance" is a matter of debate, which could depend significantly on the diagnoses,as economic hardship and scientific progress come to a head.

With this said, however, I'd like to pose one thought: What is wrong with saying, "I bore a child with a disability and chose to raise him or her. I have also experienced great pain, as well as, unparalleled joy. I understand that I am most likely responsible for their future, but require some assitance from those who are willing to help. I raised my child, as any other parent, "Using love and reason." Now, I stand among you, not believing to be entitled to anything, but in the spirit of openesss and engagement."

If we must be judged, "Let's be judged fairly."

Matt Kamaratakis

My daughter Grace is 12 and she has Down syndrome. Tears come to my eyes as I think about what having Grace has taught me. I tell people that having Grace has been a privilege. (For the purposes of this post, and in response to the original post, I am leaving out the list of challenges of being Grace's Mom.)
Why and how has it been a privilege? My entire way of seeing and experiencing the world is different because of Grace. Because I don't want people to rush to negative judgments and assumptions when they first meet Grace, I am constantly trying to train myself not to do the same when I meet others (this is on-going training for me!). But I do not let what people look like, sound like, smell like, or act like get in the way of me seeing the very unique and special person that every human being is. This approach actually makes my soul feel makes me feel warm inside...and the most important thing is that it teaches me a whole bunch about people that I do not think I would have been open to had I rushed to a negative judgment of them. I have learned this from being Grace's mom.
Being Grace's Mom has also taught me about human rights, and helps me understand and be more compassionate to, and advocate on behalf of, other oppressed groups. Being Grace's Mom has made me a better human being...I am far from perfect!, but I think far better than I would have been had she not been in my life.
Grace endlessly offers me a perspective on life that I need to hear. Last year on her sister's birthday on April 27 I was complaining about the snow that was falling on that late April day. Grace, from the back seat of the car offers, "Spinkles happa birday Sarah mama"...sharing her thought that the snow falling on April 27th were sprinkles for her sister Sarah's birthday....well, that sure brought some much-needed beauty to my mind and a smile to my face!
Grace has also taught me to celebrate the small things in flowers and baking cookies and mud and swimming and music and dancing. In my fast-paced life of work and home and appointments, being with Grace and laughing and hugging and everything else we do is like free medicine or therapy. It is very much-needed and very much appreciated!
Yes, having a child with special needs is very challenging, but as Grace's mom I have a responsibility for making sure the people I know, and the people around Grace, hear the wonders, the beauty and the privilege of being her mom. My on-going goal is to share this message even own personal message, and the message of other families. Thanks for a thought-provoking post Louise!

Louise - even I did not anticipate how much happiness and joy my two children with special needs would bring to my life (and I'd worked in the field of special needs for 10 years before my oldest was born).

It's hard to 'sell' the unknown to suspicious 'buyers.' With medical intervention we are on one hand improving quality of life and outcomes for children with serious needs. on the other hand we are killing these children as soonas we find genetic quirks through prenatal testing. I wrote about this over in my blog (under 'serious stuff')

I'm curious about this comment from Anonymous:

"I wonder if the people realize that most of the times death in the NICU is related to treatment being withdrawn due to QoL. Nor do they likely know that fluids/nutrition are not rarely withdrawn from infants who are breathing without support for the same reason."

Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in-hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?

Hello Anonymous -- I am going to check some studies on withdrawal of care and consult with some physicians, but my understanding is that if the child is able to feed orally (to breastfeed) then nutrition can not be withdrawn. The g-tube is seen as a medical treatment that can be withdrawn, but oral feeding is not. I will be getting back in touch and I thank you for sharing your story! Louise