A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Tuesday, 27 March 2012

From a Global Mail story about Australia's current disability care and support system, entitled "Hidden In Plain Sight":

"French-born Emmanuel Boumard, whose son Gabriel was born with cerebral palsy and displays autistic traits, has been battling the system for the 16 years of his son's life.
"I want to scream. You have to demand — or not so much demand, but ask — so many times until you get something, say speech or occupational therapy,  that you give up with the system," he says.
"There was an incident three years back. We applied for, I think it was OT [occupational therapy] and we forgot about it. And two years later, we got a call saying, 'You've reached the top of the queue. You're entitled to services.' We didn't even remember we had applied!"
Cleary, Gabriel couldn't wait years for occupational therapy. "We went privately, sometimes from our own pocket, because we couldn't wait," he says.
"It is very difficult to find your way. You give up. You give up [on the system]. You don't want to deal with anyone because you get frustrated. How can it be changed? I don't know. It's a vicious cycle.'"

Sunday, 25 March 2012

The human brain, people say, is the most complex thing in the universe. But its complexity is nothing next to that of the human mind.  
Bryan Appleyard, 2009

Saturday, 24 March 2012

There were two wonderful articles in the SMH's Good Weekend Magazine of March 17.
The first, by Fiona Harari, entitled "The Here and Now"  (click here to read -  THE HERE AND NOW) describes the experiences, feelings and thoughts of parents coping with the knowledge that their children have life-limiting illnesses and severe disabilities.
The emotion that shines through this article is love; profound love between parent and child. Not the pointless, futile, desparing and agitated wish that their children had never been born, or that medical science could somehow find some miracle "cure" and save their children's lives, but what Harari describes as "a very spiritual bond. Their love for their child and their child's ability to survive against the odds is their inspiration. It's the thing that keeps them going". 
Harari writes of a mother called Yvette Pieri, whose 16-year-old son Adam died five days after she was intervewed for this article, and who told Harari: "I think the love he gives me keeps me going".
Harari goes on to write that Yvette Pieri's response "tells of an extraordinary bond that transcends her son's inability to speak. In families such as Yvette's, where you might expect to see darkness there is also laughter, intense love and a defining sense of proportion... Mostly, what worries parents like Pieri is that their children are in pain. Underlying everything they do - as they battle social and medical services, a lack of transport, frequent isolation and strained finances - is an overwhelming need to keep their sons and daughters as comfortable as they can."
I think many, many parents of children, teenagers and adults with disabilities would identify and agree with that observation.
A palliative care nurse also interviewed for this article said: "The most humbling, spiritual moments of my life have come through my work. We get to see the extraordinary nature of people and the extraordinary power of parental love every day".

Meanwhile, there was another inspiring article by Janet Hawley, entitled "How To Rewire A Brain" (at How To Rewire a Brain) featuring an extensive interview with a Canadian woman called Barbara Arrowsmith-Young who instinctively realised, several decades before the vast majority of doctors and medical scientists, that brain injury and damage can be overcome by intensive brain exercise (otherwise known as "learning"). 
Hawley writes: "Without realising it, Arrowsmith-Young was utilising the principles of neuroplasticity, at the same time that scientists were only beginning experiments in this field. Previously, science had contended that the brain is hardwired at birth. This view of the unchangeable brain has since been overturned by numerous clinical trials that show mental exercise and mental experience can alter its structure."
Yet more evidence that education and learning-based intervention methods like Conductive Education, developed in Hungary around 70 years ago now by a rehab physician, Professor Andras Peto, have been on the right track all along, and that the gloomy, medical-model approach to disabilities of neurological origin like cerebral palsy - resulting in children being written off in effect, strapped into wheelchairs from the age of three or four, surrounded by mechanical aids and offered only token therapy form then on, has been on completely the wrong track.
Funny, isn't it, how so many medical-model, allied health professionals like physios and OTs have thought of themselves for decades as part of the solution, when in actual fact they were part of the problem all along?
Umm, yes, totally hysterical.

Sue O'Reilly

Sunday, 18 March 2012

Just had a very interesting meeting in Canberra with Dr Ted Freeman and ANU Emeritus Professor of medicine Dr Peter McCullough, two medical experts who have been battling the medical and therapy establishments for several decades to ensure that people with severe brain injuries and not just written off, but given intensive intervention to minimise their post-injury disabilities.
They are both heroes - two men whose steadfast refusal to accept the "neurological nihilism" of so many of their colleagues is now increasingly being proved to have been correct all along. It was an honour to meet them.
Sue O'Reilly

Wednesday, 14 March 2012

A Very Puzzling Little Mystery

A day or so ago, the facebook page of the Cerebral Palsy Alliance made one of numerous pitches for donations to the CPA by recounting the following story:
"Jacob has cerebral palsy, and earlier this year he was just one of hundreds of littlies to start their first day at kindergarten.
But unlike most kids his age, Jacob who uses a walker and is hearing impaired, has had to undergo years of intensive therapy to ensure he was physically and emotionally ready for school.
Thanks to our generous supporters, Jacob received at Cerebral Palsy Alliance the therapy he needed to start at mainstream school with his siblings and peers.
There are many ways you can support kids like Jacob - to find out how, visit ways to donate"

"Years of intensive therapy"... from the CPA? Hard to know what the answer to that question is, because when you analyse it this little story is actually very carefully worded - but certainly, that is the very clear and deliberate implication.
Perhaps Jacob attended the CPA's Conductive Education program?; except this little story doesn't actually state that, if so - it simply refers to intensive "therapy".  
Yet who receives years of intensive "therapy" input these days, from the CPA or any other disability service provider in NSW? Sure, parents are purportedly "trained" by therapists to carry out therapy-oriented work in their own homes, by themselves, and that could well amount to "years of intensive therapy" - but this little story explicitly states that "Jacob received at the Cerebral Palsy Alliance the therapy he needed".
All very puzzling really, given the fact that so many parents of young children - not to mention older children - are constantly tearing their hair out at the lack of even the most basic therapy service, such as an OT to measure up a child for a wheelchair, as demanded by the equipment funding body Enble, in anything under 18 months.
So, in an effort to get to the bottom of this mystery, the CP Clients& Family Forum posted the following on the CPA fb page:

The CP Clients& Family Forum would like to hear from families of children with CP as to their experiences in seeking to access "intensive therapy" from CP service providers such as the CP Alliance. We would like to hear about such things as:
1. How long did you have to wait for a therapy appointment after diagnosis?
How much therapy did you/your child receive in the pre-school years?
3. What sort of therapy did you have access to?
4. Do you consider your child received access to sufficient therapy?
5. What sort/how much therapy did your child have access to after starting school?
Please email responses to cpcfforum@gmail.com Thank you for your assistance.
And guess what - this post sat there for a couple of hours until someone at the CPA noticed it, deleted it, and blocked any further access for the Forum to the CPA fb page.
Now, seems to us here at the Forum that if the CPA was actually providing the "years of intensive therapy" that children like Jacob need, they'd be happy to promote a survey like this - wouldn't you say???

Saturday, 10 March 2012

Some more research news ..... from the blog for braininjury.com

Putting baby on ice: a life-saving therapy

MONTREAL - As a 13-month-old toddler, Erika Nordby wandered out of her Edmonton house in the middle of a winter night and fell face down in the snow where she nearly froze to death. Several hours later she was brought back to life with no injury more serious than severe frostbite despite having no pulse when found.
Now the science behind the medical miracle of Erika’s survival is being used to treat babies who have suffered trauma at birth. Even before Erika’s recovery, it was already established that hypothermia protects against brain injury in animals deprived of oxygen. But would it be safe and effective for humans? As Erika was fighting back to health in 2001, British doctors were already experimenting with a new ice therapy. They hoped to stem brain damage in babies who had suffered a lack of oxygen during delivery by lowering their body temperature by four degrees immediately after birth. Naked except for diapers, the babies were chilled for three days on mattresses filled with ice water.
Hypothermia is more complicated than simply putting babies on ice. By the time Erika was found curled up in the snow in temperatures dipping to -20C, her toes had frozen together, she had no pulse and doctors had to restart her frozen heart.
Today, Erika is a healthy 12-year-old. The cold that nearly killed her also saved her life by slowing her body’s metabolism and reducing her brain’s need for fresh, oxygenated blood. Some babies who have been deprived of oxygen during a difficult birth are so ill that nothing will save them. But in moderate to severe cases, it is a way of buying time so the brain can heal on its own. A landmark study published in the New England Journal of Medicine in 2005 found total body cooling reduces the risk of death and disability in infants starved of oxygen.
Accidents like Erika’s have taught doctors how the science of ice can cheat death. Cooling therapy has since become routine care for birth trauma, and some stroke and cardiac patients. But the therapy is still in its infancy. There are many unknowns. What, for example, happens in the brains of such babies? A brain imaging project run out of the Montreal Children’s Hospital is working to find out.
Baby Kavanagh was born at St. Eustache hospital during a planned Caesarean in 2008. The delivery went smoothly but something was wrong with the baby. He was born limp. He wasn’t breathing. Later, doctors discovered the baby had meningitis. The baby needed to be resuscitated. In the controlled chaos that followed, nurses brought the incubator in which the baby was placed so his mother could see him. 
At the Children’s neonatal intensive care unit, specialists suggested using an experimental treatment available to infants. They proposed cooling his core body temperature to 33.5 C - several degrees below the normal 37C - for 72 hours.
Therapeutic hypothermia has been shown to almost double the chance of normal survival - 40 per cent of treated babies developed no subsequent problems.
In 2008, the Children’s used the treatment on five babies; in 2009 there were 20; and in 2010 that number doubled to 41. Now nearly every large hospital centre offers hypothermia therapy for birth trauma, or makes arrangements to transfer babies to a facility that does, said neonatologist Nabeel Ali, who developed the Children’s program. St. Justine Hospital began using hypothermia therapy in 2009.
The window of opportunity to start treatment is six hours from the moment a baby is born, and newborns are sometimes flown in by air ambulance.
“I figured we had nothing to lose given the prognosis,” baby Kavanagh's dad said. “He was convulsing, he had bleeding in the lungs, severe asphyxia, cerebral meningitis and (doctors said) he had a 50% chance of survival.” In fact, the very first baby cooled at the Children’s in the fall of 2008 had died, not because of therapy but because he was too ill from the start, Ali explained. Asphyxia occurs in about four in 1,000 full-term babies. Trauma at birth can have many causes including a ruptured placenta, slow fetal heart beat, the umbilical cord is wrapped around the baby’s neck, the newborn’s head is out but its shoulders are stuck, or the infant is born not breathing.
“We’re not good at reversing damage, unfortunately,” Ali said. A portion of brain cells dies in the initial “insult” of oxygen starvation. Then there’s the second stage called “reperfusion injury.” That occurs when the blood supply returns to the brain with fresh oxygen and produces harmful toxins. The newborn’s brain can’t protect itself from chemical reactions such as lactic acid, free radicals and other toxins that continue to damage neurons.
Cold therapy stops this cascade of irreversible injury. Cooling slows the metabolism, lowers the body’s need for energy and gives the newborn time to cope with the toxic byproducts of asphyxia, Ali explained. Until recently, doctors could offer parents of sick newborns little hope for repairing brain damage. Some died. Some later developed hearing and vision problems, cerebral palsy, seizures and cognitive or developmental delays. The results of therapeutic hypothermia are promising - 40 per cent of cooled babies have no long-term consequences. The treatment is only offered in moderate to severe cases of asphyxia because these babies are most likely to benefit, studies show. But while some babies do well, others do not, and researchers at the Children’s are trying to understand what mechanisms underlie these injuries. Other teams in the U.S., for example, are looking at whether variations on existing hypothermia remedies- colder, deeper or longer - would be better.
“Our goal is to figure out why there is a difference and how we can improve the current treatment,” said neonatal neurologist Pia Wintermark, who was recruited from Boston nearly two years ago. Wintermark’s research focus is on profiling brain injury in newborns using advanced neuroimaging techniques.  “We can repair damage to the heart and the lungs but not the brain - and that’s frustrating.” 
Using MRI to measure blood flow, researchers can now see an injury within the first day of life - what’s normal, what’s abnormal and where exactly this is happening in the brain. “We’re trying to identify as early as possible the baby that might develop brain injury,” Wintermark said, with the idea of developing therapies, for example, medication to improve blood flow, and the outcomes of these newborns.
For her MRI study, Wintermark is also seeking babies who have not been cooled - the control group - to compare their brain images with babies that had been cooled.
Experiments with rats are attempting to alter brain blood flow and somehow staunch cerebral changes or damage. But for now, Wintermark said, the only therapy available for babies who had birth trauma is cooling.
Hypothermia infants cared for at the Children’s are followed until school age, examined by neurologists, occupational therapists and other specialists. They look at how these babies grow, their interactions with their parents and the physical world, and whether they are reaching developmental milestones according to schedule.
Considered the first baby to survive cooling at the Children, baby Kavanagh has since grown into a healthy boy. At 10 months, he stood and walked, faster than his two sisters. By his first birthday, a lung specialist had determined he was fine, and his motor skills have surpassed everyone’s expectations.

Source: Montreal Gazette 03.05.2012

Thursday, 8 March 2012

I have a young daughter, let's call her Charlie. She has CP and is a wheelie. She's had an electric wheelchair from a very young age so is used to having her mobility, and - of course - it's very, very important to her.
Now all you parents know as well as I do that these kiddos of ours keep growing. So well in advance, I gave my service provider's intake system a call in January 2011 to ask for an appointment to start looking at new wheelchairs. I pretty much knew which chair I wanted - just the next size up in the model we had, one of the few with front-wheel drive. All I needed was for an OT to do that thing they do with their measurements so I could get the whole process of applying for funding from Enable started.
Some five months later, having heard nothing back, I again rang the intake service to ask where we were at with my request. I was told that yes, my request was "in the system", and would be forwarded to the powers-that-be. But no, no one could give me any further information.
I was livid, and instantly fired off an email to the CEO of my service provider. I'm afraid I wasn't very polite. Knowing how long the bureaucratic system takes, I feared my daughter would get her P-plates before her new powerchair. I wrote: 
"I understand you cannot control Enable (such superhuman feat would possibly earn you a Nobel Prize from a number of mothers I know). But surely it is not too much to ask to be able to make an appointment with an OT to put a wheelchair application in for a five-year-old child within a six-month timeframe!? Im not even asking for therapy sessions, just one meeting to get the process going. What am I to do when she outgrows her chair in a few months time? Take away her mobility? Or come and clean your offices to earn enough money to buy one myself?"
About an hour later, I received a phone call from the CEO. He agreed that the situation was unacceptable and said I would get a phone call from my OT on Monday morning. As indeed I did - and two days later my daughter's legs had been measured! The process was finally underway, and a trial for the new chair was booked.
Lesson one: don't put up with unreasonable waiting times. Remember the squeaky wheel. Create a fuss. Things might just happen.
Then something unexpected occurred. 
One day, flicking through my local newspaper, I saw a story about a boy who had been given a standing wheelchair by the Variety Club. And I went: "Wow, now that would be something!"
That evening I turned my computer on and found these amazing machines - electric wheelchairs that take a person to a full standing, weight-bearing position with one push of the controls.
I don't need to explain the importance of standing to you. Nor the daily difficulty in achieving it. The bending, the lifting, the strapping, finding the time in between all the other chores in a day. And schools often won't even contemplate putting kids in their standing or walking frames "because Occupational Health and Safety won't allow it."
So, wiith even the possibility of avoiding hip dislocation or scoliosis being priceless, I felt I owed it to my child to investigate a standing chair.
I contacted my OT with the information I'd found online about two chairs I thought would be suitable for my little girl. I asked her to imagine for a moment that money was not an issue could she just tell me if my daughter would therapeutically benefit from a chair like that?
Her response was practical, giving me some pros and cons of such a chair for someone like my daughter. She explained that she had no knowledge of a suitable support seating system that works in both sitting and standing position. Fair enough. Then she added: "But there may well be something suitable out there nowadays". She wouldnt know about it, though, because:
I suppose I have () stopped looking at them as [the NSW government] won't fund them.
This comment hit me square in the chest and left me breathless.

And made me wonder.
What other equipment is out there for our children that we dont even know about? What else is there they could benefit from, but that even our childrens therapists dont know about? Aren't therapists meant to stay abreast of all new developments in their field?
I am left with the sour feeling that our children don't get what they deserve....

Wednesday, 7 March 2012

Following is a fund-raising message published on the Cerebral Palsy Alliance website, which strikes me as raising a number of interesting questions that I will spell out after reproducing the message in question.
A Message from CEO, Rob White
Every Hour Counts
As you read this message, 490 NSW children are currently waiting for urgent therapy for cerebral palsy.
It really worries me that these children have to wait - all for want of funds to employ extra therapists.
The research makes it very clear that the more learning and development a child - especially one with cerebral palsy - does while they are very young, the more difference it makes. That's why these early years are so important.
Luckily, Francesca didn't have to wait more than a couple of months to start her therapy after being diagnosed at 19 months.
Although every child is different, Francesca is now 5 and ready to go to 'big school' next year with the help of an aide.
That's a huge achievement and it would never have happened without enormous commitment from her family, hundreds of hours of therapy from her Cerebral Palsy Alliance therapist, Elaine, and a giant dose of sheer determination from Francesca herself.
Francesca's mother Angelina is both delighted and amazed at her daughter's wonderful progress.
Angelina firmly believes that without the therapy, Francesca would not be the bright, energetic young girl she is today.
Our fear was that Francesca would be bound to a wheelchair, unable to do things for herself or interact with her friends, but the constant play has really stimulated her mind and her body.’ Angelina, Francesca's mother
Therapy Changes Lives
Before she started therapy, Francesca's fists were clenched into tight little bunches that made it incredibly difficult for her to grasp anything.
But numerous sessions of play therapy reaching for balls and other toys has dramatically increased Francesca's ability to open her hands from their clenched state.
This would never have happened without the therapy.
Overcoming the brain injury that causes this kind of clenching requires repeated and determined efforts. In Francesca's case, every time she reached out, determined to get that ball or toy, she took 1 step closer to restoring the use of her hand. Now she can open her hands readily - especially if there are toys involved!
Before therapy, Francesca had very little body strength and could sit for only a moment or 2. Her mum described her as "floppy". Now, at 5, Francesca has learned to sit up by propping herself up with her hand.
I wish you could see her zooming around in her wheelchair or stubbornly persisting with mastering her walker. Really, it's inspiring.
The Difference You Can Make
Francesca is a living, walking and talking example of how much difference intensive therapy in the early years can do for a child with cerebral palsy. No child with cerebral palsy should have to go without it.
It costs around $32 for 1 session of therapy. $384 is enough to help a therapist train a young child to use a high-tech speech device, so they can communicate with their family, teachers and friends.
A whole year of complete therapy for another child like Francesca costs around $3456.
Whatever gift you can give now to help get our youngest children with cerebral palsy off our waiting list and into therapy is going to make an enormous difference to them not just now, but for their whole lives. Please donate online now.
Thank you.
Rob White
Firstly, as a long-term supporter of Conductive Education, it is most gratifying to see a medical-model, therapy-orientated service provider now using a key educational-model word like "learn", as in: The research makes it very clear that the more learning and development a child - especially one with cerebral palsy - does while they are very young, the more difference it makes. That's why these early years are so important.
It's also gratifying to read that "the research" now apparently "makes very clear" what CE advocates in western countries like Australia have been saying since the 1960s i.e that "learning"opportunities are vital for children with CP, and that the more "learning" opportunities a child accesses, the more "difference it will make".
Umm - yes, that's quite right, Rob.
Clearly, the CPA and other therapy-based service providers have come along a loooong way since the 1980s and 90s, when the active, learning-based educational methods of CE practitioners, as opposed to passive therapy methods, were so scathingly derided.... reading this message indeed, it almost sounds as though therapists are beginning to think of themselves as - well - highly specialised teachers!  And what's more, it's clear from Rob White's message that they are even enthusiastically embracing longterm CE precepts, such as the developmental benefits of "constant play" as alluded to by Francesca's mother.
At this breathtakingly speedy rate of dawning enlightment, it will probably only take another 30 years or so before conventional, medical-model therapists even start even using the word "Education" somewhere in the title of the method they offer to describe what they do, instead of "Therapy"....
But one thing's for sure: none of these "experts" are ever going to openly acknowledge that the old medical-model, therapy-based methods were on the wrong track, and that CE was on the right track all along. No, they'll just quietly nick all CE's precepts and then claim it was their idea right from the start.
Why so cynical? Well, for a start, you might have noticed in this appeal for funding for more therapists, there is not ONE WORD of any mention of the fact that the CPA also offers a CE program for children and teenagers, and that this program could do with some extra funding and expansion too (something however Rob White doesn't seem in the least worried about, despite extensive unmet demand for CE).
$384 to "help a therapist train a young child to use a high-tech speech device so they can communicate with family and friends"  ? - well, how about a similar amount going to the CPA's two Conductive Education specialists to so they can actually work on teaching a child to speak, as CE taught my own son to do (despite medical advice that he'd never be able to)?

Secondly, it is gratifying to see the CPA start to publicly reveal information about its waiting lists, something it has long refused to do, stating that it has 490 children on its books currently waiting for "urgent therapy".... (not to mention the adults of course, but let's not go there.)
However, it is really quite astonishing that Rob White would or could make a statement like: "Luckily, Francesca didn't have to wait more than a couple of months to start her therapy after being diagnosed at 19 months."
Luckily? - when supposedly "every hour counts", as indeed it most certainly does? When "the research" now shows there is a golden window of opportunity for brain repair in children under the age of 24 months, Rob White thinks a child of 19 months waiting another two months after diagnosis to begin therapy is "lucky"?
God knows what he'd define as "unlucky". I know what my definition is though - the generations of young Australians with cerebral palsy denied any access to the intensive, learning-based early intervention methods CE has been offering for the past 60 or so years now and known in the west since the 1960s, solely because of the power of vested interests in the traditional, medical-model therapy system.

Sue O'Reilly

Friday, 2 March 2012

Cerebral palsy is an "under-researched" field - really??

Several years ago, the Spastic Centre of NSW (now renamed the Cerebral Palsy Alliance) decided to branch out from its traditional sole role as a provider of services and supports for people with cerebral palsy and their families in NSW, insisting it was essential it also get involved in raising funds for "global medical research" into the prevention, treatment and hopefully even one day cure of CP.
Two of the major justifications advanced for this controversial (to say the least) decision was that "this is a very under-researched field", and that "the potential exists for the Spastic Centre of NSW to lead the world in the search for ways to prevent and cure cerebral palsy".
In pursuit of this new objective (of which, by the way, there remains to this day no mention in the CPA's Articles of Association) the then Spastic Centre of NSW established its own Research Foundation, then set out to raise $50million to enable this Foundation to fund research projects around Australia and internationally.
The Spastic Centre/CPA insists that its new - entirely self-appointed - role as a funder of international medical research in no way distracts it or detracts from the purposes for which it was originally established, by parents, some 65 years ago now - to provide services and supports to people with CP and their families in NSW.
Let's hope so, because services and supports remain desperately inadequate and under-resourced.
But in the meantime, for those who continue to wonder whether there is any validity in the original justifications advanced - ie that this is "a very under-researched field", and that the Spastic Centre/CPA simply has to get involved because so few people anywhere else in the world are doing so - have a look at the website for the Australasian Academy of Cerebral Palsy and Developmental Medicine, which is holding its bienniel conference in Brisbane this coming June. Have a look at the program, and at the long list of eminent medical researchers who will be speaking, from all over the world.
Have a look, too, at the website for the 4th International Cerebral Palsy Conference to be held later this years in Pisa, Italy - http://www.cp2012.it/, or at the website for the CP International Research Foundation based in the US - http://www.cpirf.org/.
And then decide for yourself whether it is actually the case that a State-based service provider simply had to get involved in funding international medical research because this is such "an under-researched field"....