What is available in Australia for kids with Cerebral Palsy

[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.