What is available in Australia for kids with Cerebral Palsy

[Kar]

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?

thanks in advance

Kar

[Inanna]

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.

[Indadhanu]

Hi darl,

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?

[Trillian]

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.

[Indadhanu]

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!

[maz]

Suppose I better come in an try to help

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

[Kar]

thanks everyone for posting so quickly. I will take all your info and suggestions on board.

[maz]

Kar - I noticed that your situated in Bendigo...Hume services im pretty sure operates over your way to if that helps

[halltribe]

Hi there - I knoow this post is a little old but I had to reply. As a kiwi who has been here 3 years with my family and a CP son I have come across some difficulties.


Firstly even though my dh is is a wanted posistion for citizenship or permanent residensy we hvae been denied it because of our CP son.

Yes through the school, medicare, health system does help there is no benefits like careres payments and respite help from any agencies here. When my boy first enrolled in school suddenly bec ause he exsisited I had numerous phonecalls from agencies offering afterschool care, respite, trips, etc but when I said I have no funding they hang up!!!

I do reccommend you get health ins even though there is a stand down of 1 year with pre exsisting conditions.

My son desparatley needs a new wheelchair and there is no funding for it so we need to buy ourselves.

All in all though we love Aussie and will never return to NZ. We will bring our son up like the old days in our home. The benefits for the whole family outweigh the personal cost and lack of resourses available for our son.

NB: In London there is a place called Conductive Education which in Govt funded there I understand, worth a visit.

[Kar]

thanks Halltribe
you must be doing it tough.

My brother and his wife are Australians so wouldn't face the problems you are if they came home, but instead it looks like they will stay in the UK. At the moment my SIL has taking my niece to the Ukraine for some intensive treatment. Fortunately she is originally from Russia so she doesn't have a language problem.

Thanks for replying. Hope you've had a nice chrissy season.

[maz]

Firstly even though my dh is is a wanted posistion for citizenship or permanent residensy we hvae been denied it because of our CP son.

that is just digusting! I just cant understand something like that

Yes through the school, medicare, health system does help there is no benefits like careres payments and respite help from any agencies here. When my boy first enrolled in school suddenly bec ause he exsisited I had numerous phonecalls from agencies offering afterschool care, respite, trips, etc but when I said I have no funding they hang up!!!

Is that because your son isnt an Australian Citizen? career's payment is through centerlink and respite is through local councils usually.
Is there an agency around you at all that helps children with special need's? Would you like me to ask my social worker about your area and whats available? Please feel free to PM me if you want. I just cant understand how no-one is wanting to help you

I do reccommend you get health ins even though there is a stand down of 1 year with pre exsisting conditions.

Could you let me know what a health in is please?

My son desparatley needs a new wheelchair and there is no funding for it so we need to buy ourselves.

Could you let me know were you are ...My SIL has CP and might have a wheelchair or know of someone who has one from when they were little we could get to you.


In the mean time hon..please PM me if there is anything you need and I'll see if I can get help or help myself in anyway

[halltribe]

Hi Maz - thanks for your love!!!! I am not grumbling it is just the way it is. I know its kinda not fair as I know there are Aussie kids in Nz and they have all the benefits to them any NZ special needs kid would get. But I do understand the govt not wanting to support someone who is "of no benefit to Australian society".

Health- I meant health insurance, we do have that even though there was a year stand down for pre-exsisting conditions. This has been good as my boy has had 5 operations this years and long hospital stays, etc.

Agencies generally work thru the system and payments thru centrelink so no funding not interested. We did manage to get a bit of help when I had a Social worker from the hospital got me some homehelp with bathing when he came home after surgery this year.

Re where we are -

We packed up in April 09 (Hervey Bay)to do the hospital thing in Brisbane and because of all the stuff ups we never got back so now while everything in still packed up we are going to run away from the doctors for 6 months or so and head south. We will be leaving QLd early Feb and have a few months to get to VIC when baby is due then we are fulfilling our CP boys heart desire and taking him to Uluru. So atm we are kinda homeless and thats OK!!!

[SJL]

Hi Kar,
I hope you Brother and SIL are starting to get the help and support they need.

I frequently talk about services with my daughter school parents group so I will answer your questions from both my perspective and advice from other parents (It is only my and their opinions so they may be wrong or uninformed, but hopefully helpful)

1. What town/city and state do you live in? Donvale, Victoria

2. When was your child first diagnosed? 12yrs old (she had other diagnosis' prior to this)

3. What kind of tests were carried out? when? Doctor observation (other tests had been carried out prior to diagnosis such as - MRI, CT, hearing, vision, etc, etc)

4. what kind of treatment/medication/support do you get for your child? We get therapy support through school. medical support is all through Royal children. We also get continence support though another government program (available from 6yrs), respite through the council.

5. Is it covered by medicare or for free or do you have to pay? Or is it covered by private health insurance?
Most medical support is covered by medicare but I do pay for private Dietician (my choice), equipment is supplemented through government funding but there is always gaps to cover and not all equipment is available through the government funding. There is charitable groups which can help with equipment funds such as rotary or lions clubs.


6. How would you rate the medical services you have available to you?
RCH is generally really good, although some parents prefer to go private. I have always had support through RCH when needed weather it be a social worker to support me or play therapy to help my daughter during appointments, the nurses on the wards are usually fantastic during stays.

7. Are there any places/clinics/physicians that you would recommend?
RCH as a starting place. You can get linked in to heaps of services from there. The developmental medicine department has been fantastic for us.

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?
The parents group at my daughter school (which is for kids with physical disabilities) recommend CPEC (cerabral palsy education centre) for early education, although my understanding is it is a user pay service so there will be costs involved. Yoralla or Scope both have good reputations in Victoria (my daughter attends a Yoralla school)

10. How important has having a parent or other close family around been to helping you with your child?
I don't have family support and I really wish I did, I have friends who support me but I hate burdening them with my daughter because they all have special needs children. I wish I could call on family to help with their niece.

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?
If he moves to Victoria, then move to the eastern suburbs, there seams to be better services and funding (based on my experience and other parents I speak to).
I think other people have mentioned about immigration - If your brother is an Aus citizen they should be fine but I have heard of other people not being granted citizen ship due to children having disabilities.


12. Do you know any other BB members I can approach who might be able to help me out here?




Good luck with everything, I hope you brother, SIL and neice get the support they need.

Feel free to PM if you want to know more about anything I have mentioned.

Sjl

[Kar]

thanks very much sjl - thanks for your time to respond. At moment my SIL and brother are back in London and have left my niece with her grandparents in moscow so they can recuperate a bit. It has been a very intense few months for them and they are exhausted as I am sure only people with children like her can appreciate.