What is available in Australia for kids with Cerebral Palsy
Hi Everyone,
I am an long time member of BB but haven't been around in ages. I've just learnt that my niece born 10 weeks premature on 12 Feb 2009 in London is likely to have cerebral palsy, probably with epilepsy and intellectual disability. My brother and SIL are still in London and have been having a really tough time trying to get any social or medical support there.
At 10 months old (7.5months corrected), neither GPs or Paeds in London seem able to diagnose any problem nor do they seem willing to do any kind of intervention. It is apparently not even contemplated until the child is 2.
My SIL is Russian and recently spent a month in Moscow where the medical fraternity have a completely different approach and are much more into early intervention. She came back to London and immediately made an appointment with a neurologist who has just diagnosed the CP and has ordered a raft of other tests (to make sure it is not something else genetic or prorgressive) and a MRI for next week.
I would love to hear from any mums in Australia about your experiences with treatment and support for CP. My brother is willing to move anywhere in the world to get the best treatment for his daughter. We would like him to return to Australia so we can support him and his girls.
So can you help?
If you can answer the following kinds of questions I would be eternally grateful.
1. What town/city and state do you live in?
2. When was your child first diagnosed?
3. What kind of tests were carried out? when?
4. what kind of treatment/medication/support do you get for your child?
5. Is it covered by medicare or for free or do you have to pay? Or is it covered by private health insurance?
6. How would you rate the medical services you have available to you?
7. Are there any places/clinics/physicians that you would recommend?
8. Can you please PM me to get my email address if you need to tell me about a physician/place to avoid (i.e don't slander anyone in response to this thread).
9. What about other support services?
10. How important has having a parent or other close family around been to helping you with your child?
11. Is there anything else you can advise me about the system in Australia with respect to CP that might help my brother decide whether he should return to Australia or stay in the UK?
12. Do you know any other BB members I can approach who might be able to help me out here?
Hi Kar,
My daughter was born at 27+5 weeks & 815grams. She has quite marked developmental delays - as you would know CP is always a big risk for grossly premmie babies. My daughter doesn't have some of the signs of CP but she has many of the red flags. She is 2 & walks with a very "robotic" gait, walks tip toes, she can say some words but not at all in context. All she says in context is Mammma!
I can say that the system has been incredibly supportive of my child. I have private health insurance & that really hasn't helped with Imogen. She is hooked into the RWBH which have one of the largest neonatal intensive care units in the Southern hemisphere. She is now being reviewd by the team there which consist of neuro psychologists, speechies, physios etc etc. She is also seeing a speechie privately and a physio. Both have not helped at all to date really.
Whilst your niece has a diagnosis of CP - the issues will be similar. I can say that here in SEQ the services are excellent. I recieved above fabulous medical/surgical and intensive care for myself & also for Imogen.
I can recommend this part of the world fofr that.
I have absolutely no family support & I am a single mother now with 4 other children. So, in answer to how hard is it without family. It's damn tough but I always manage to get through with minimal tanties and a smile on my face mostg of the time.
I am a nurse also - if I can help you any further it would be my pleasure.
Jazz doesn't have CP but my 16.5yo brother does have very severe left hemiplegia in his arms and paraplegia Cerebral Palsy (basically, his legs and leg arm are affected).
So I'll answer for my bro, because me being 23 and us having only 6 years between us means I know some stuff
1. What town/city and state do you live in?
They live in the Redlands, Qld
2. When was your child first diagnosed?
He was diagnosed at about 18-24 months, when he wasn't meeting physical milstones.
3. What kind of tests were carried out? when?
He had the observational tests, seeing how well he did things, and then a brain scan (CAT scan? maybe?), and they detected the brain damage, was I think what 'confirmed' it. Also his history (born at 33w, PPROM, fetal distress, emergengy c/s and delayed breathing, bronchitis and pneumonia, chicken pox at 6 weeks old... there was a lot of 'warning signs' i guess). Without the history, I think they leave it much later to try to pick anything up unless they pick it up by chance with a brain scan.
At the age of 13 he was diagnosed with epilepsy, abscent seizures, but doesn't have medication for them.
4. what kind of treatment/medication/support do you get for your child?
He's never been on medication, and he is SEVERE, so that is very heartening for a lot of people to hear!
He has gotten a lot of physiotherapy, speech therapy, and, as he got older, occupational therapy.
My parents also took classes and did physio with him at home, and his orthopaedic surgeon says that this has made a HUGE difference in his abilities now. The physio's used to say it was useless, but the way my parents saw it was this: He was given a less than 1% chance of having a 'functional' life. If there was ANY chance, they were going to DO SOMETHING and not just resign themselves to the majority figure. I know its not the most 'realistic' but its worked for them, and I know of others who put in the time and effort and reaped the rewards, like Shane Scott and his family.
He's had a total of 4 operations now... tendon lengthenings x2, a single femoral osteotemy and tenden lengthenings, and, most recently, a double femoral osteotemy, plus tenden lengthenings and an operation on his toe at the same time. He is about to start a plaster serious on his left hand next week and in Feb he is having an operation to shorten the muscles in one wrist and lengthen the other side, so he has more use of his left hand.
A lot of support has come from the CP League of Qld. When he was about 7-8yo (and my other brother had just been born) mum and dad started getting respite care (both day and one weekend every 6 weeks). It's fairly irregular unfortunately, they need more respite carers in most places, but its something that can make a difference.
5. Is it covered by medicare or for free or do you have to pay? Or is it covered by private health insurance?
They DON'T have PHI, so the wait lists were disgusting for the ops unless they were willing to pay for them. So no idea what PHI would do, I guess that would be case by case. But yeah if you can get Medicare they'll cover it, but you have to wait.
Which is ridiculous since if he didn't have them there was the chance he would NEVER walk.
Side note, he unfortunately can't walk. He can do about 2 metres in his walking aide but thats about it. Still a good effort for him though, considering they never thought he'd be able to talk, and he can. Underwater. With a mouth full of dry cement He's also in Year 11 next year (at a mainstream high school) studying OP-eligible subjects such as Physics and Chemistry, with a dream to attend uni and do something sciencey I think, or possibley psychology, depends on how he feels by the end of Year 12 I guess!
6. How would you rate the medical services you have available to you?
Personally, most of them are great, and some of them are crap. He goes to the Mater Hospital clinic for his orthopaedic surgeon, which is fully equiped and staffed. Usually a huge wait but the surgeon he see's is FANTASTIC!
7. Are there any places/clinics/physicians that you would recommend?
I'd highly recommend Dr Terrence Maguire, he had a private practice as well as doing clinic, but he is retiring. I can't think of the new ones he is 'training up' but I think he is fairly good too. If they got in touch with him he would be able to refer some good places, he knows what he's talking about.
9. What about other support services?
There is a social worker called Shane Scott (he used to run his own counselling service but I think he works for DSQ - Disability Services Queensland - now), he is AMAZING, if they come to Qld, definitely look him up and chat to him. He has CP himself, and knows the ins and outs of the system, and how to get through loop holes and red tape.
The CP League are generally great, their social workers are good to point you in the right direction, I think there is one in every state?
Also LifeTec Qld (usde to be the Independent Living Centre) is a good service.
10. How important has having a parent or other close family around been to helping you with your child?
My parents didn't have any support (we lived with my grandfather but that was more to support him IYKWIM) and they did and still do find it extremely difficult. Although it wouldn't have dne any good because really family themselves are no good unless they understand and are empathetic and can give you what you need. We have a family member who used to say things like "aren't their homes for people that will look after him?" so no, family themselves aren't always important SUPPORTIVE PEOPLE are most important, be it family or friends.
11. Is there anything else you can advise me about the system in Australia with respect to CP that might help my brother decide whether he should return to Australia or stay in the UK?
I always thought that the UK HNS system was superior to the Medicare system. Many people I have known and worked with have contemplated moving over there because the support they'd receive is 10fold to what they'd get here. Just what I've heard though, I've never actually been to the UK to know myself.
12. Do you know any other BB members I can approach who might be able to help me out here?
My mum isn't a BB member, BUT she's always willing to help others in the same situation she has been in so I can pass on an email address to her if you want?
Last edited by Indadhanu; November 7th, 2009 at 03:56 PM.
: edit
My neice has CP aquired at birth from birth trauma (placental abruption at term) and they knew from the get go that she would have CP to some extent but only time would tell the severity. My niece has a neurologist and she was having a lot of scans and tests done to determine her level of brain damage and by 3 months she was seeing a phsyiotherapist 2 times a week to help with muscle tone and core strength. When she was 12 months she was accepted into CPEC (Cerebral palsy education centre) run out of Monash down in melb and as far as I know my sister doesn't pay for a cent of it as she got a govt funded place I think. She attends there 3 times a week. She does have to pay for some equipment but there is funding available to help with costs of that as well as various charities. I really think that waiting till she's 2 would be detrimental to her as they need to get onto it now, the earlier the better really.
I think you should give CPEC a call and explain the situation to them and they could help put you on the right track in terms of costs and treatments etc.
MASS - Medical Aids Subsidy scheme is another good on to get in contact with and see how much they are eligible for in terms of equipment to help with living (like bath/shower chairs, hoists, wheelchairs, AFO's, ACD's etc). I know my bro gets a lot of assistance from them, and he also has a grant from DSQ to pay for treatment and other CP related expenses. Took years of applying but they were finally approved for the grant 2-3 years ago!
My little man was born via c/s at 38 weeks...his umbilicol cord was wrapped around his nexk 3 times and for the last 2 weeks of my pg it was cutting blood flow from the placenta which allowed blood clots to form. at 2 weeks old he began suffering seizures that were that bad we rang an ambulance and stroked were diagnosed.
1. What town/city and state do you live in?
Mooroopna Victorial (Rural)
2. When was your child first diagnosed?
at 2 weeks old
3. What kind of tests were carried out? when?
we had 3 MRI's at 2 weeks and 4 weeks. Blood test's, u/s.
4. what kind of treatment/medication/support do you get for your child?
When it first happened we were told not to expect him to live past 3 months old. We were also told if he did survice that he would not be able to walk or be able to communicate with us. We were put into touch with Department of Hume services who assigned us a physio, a speechy and a case worker who we began working with from 6 weeks on. They came to my house, offered support and helped me by showing my and advising me how to exercise and help my boy.
5. Is it covered by medicare or for free or do you have to pay? Or is it covered by private health insurance?
NO didnt pay, it is something provided by early childhood intervention here in Vic
6. How would you rate the medical services you have available to you?
very good. We see a specialised andone of the best pead's in Australia..Dr Peter Eastaugh who offers us nothing but support and help when we need it.
7. Are there any places/clinics/physicians that you would recommend?
Peter Eastaugh....he is so switched on, black and white and gets the ball moving QUICKLY> no pussy footing around.
8. Can you please PM me to get my email address if you need to tell me about a physician/place to avoid (i.e don't slander anyone in response to this thread).
I dont think there is any were to avoid...any help or support is better then nothing. Even if it helps you decided that a differnet place is better. AND what might be a bad situation for me might be a fantastic one for you
9. What about other support services?
there are supposrt groups here locally in shepp and special needs playgroups were you can meet other paretnsin simular situations were you can lean on each other when times are tough and laugh with each other when there not
10. How important has having a parent or other close family around been to helping you with your child?
not really...I dont get any support and i have 2 children with special needs. Although in saying that, it would be lovely ot have osmeone say, here you go and have a break for an hour and go to the shops by yourself..IFYKWIM
11. Is there anything else you can advise me about the system in Australia with respect to CP that might help my brother decide whether he should return to Australia or stay in the UK?
Ive had nothing but help and guideance from the services here in rural Victoria. I have a case worker who helps me when I need something specific for my boy and cant afford it. We recently went on a holiday to QLD and didnt have enough money to go do the theme parks....after knowing what kind of year we had had, she got some funding and tickets for all of us ended up being sent ot us at home. Its those little things that may not seem like a great deal that make up for all the tears and sweet at times.s
12. Do you know any other BB members I can approach who might be able to help me out here?
ME!!! if you want to know aynthing, get you numbers ect PM me hon
what a truely wonderful sister you are....can you adopt me
What is available in Australia for kids with Cerebral Palsy
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He's also in Year 11 next year (at a mainstream high school) studying OP-eligible subjects such as Physics and Chemistry, with a dream to attend uni and do something sciencey I think, or possibley psychology, depends on how he feels by the end of Year 12 I guess! 
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