What is available in Australia for kids with Cerebral Palsy

[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