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Best state for disability services? Where to live......
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Posted 15 December 2007 - 02:50 AM
I'm an Aussie but currently living overseas at the moment. (Yep due to get snow tomorrow!!). I am moving back to Oz next year and I am in the unique position of choosing where to live. I have family or friends in most of the state capitals (yeah I get around ) However now with my son having a neuromuscular disorder (still being diagnosed)I will have to start and think more about the future.
In providing support etc for our families - do you find that family support, friend support or outside services provide the best type of support? Or a combination of all?
My mum and sister want me to move where they live (could be very interesting!! ), dh wants to work on the other side of the country in a remote area and friends live somewhere in the middle.
Does the medical system and the associated outside support systems impact heavily upon your lives? Would you choose them over family (yeah the typical dysfunctional family ) If so - which state has the best reputation for medical stuff and respite etc?
Thanks for getting this far with me
Posted 15 December 2007 - 06:59 AM
We moved from Sydney to Canberra 15 months ago leaving both friends and family behind.
Although we aren't that close, I really miss that family support. Regular respite is brilliant here, but it's the emergency situations which are a problem. When Shea was rushed to hospital 5 times in 4 weeks recently, first my Mum drove 9 hours straight to collect Talon, then a week later my sister drove 6 hours straight to rescue him again. Another day our regular respite carer took him (without getting paid as she's not meant to look after the sibling, just the SN child).
Services are brilliant here though, particulary education and therapy. I am constantly telling locals who complain about waiting lists that they don't know how good they've got it compared to Sydney.
There are a number of specialists that we still have to go back to Sydney for though. But it is only a 3 hr drive to Westmead Kids from here, and I have family to stay with if needed.
Good luck deciding!
ETA - it was a choice of here or New York for DH's job transfer, but we couldn't imagine fighting health insurance for everything that SHea needs!
Edited by Jet07, 15 December 2007 - 07:00 AM.
Posted 15 December 2007 - 08:26 AM
We moved from NZ to Queensland for family support. I've never found that friends were able to give much hands on day to day support.
Queensland is the only state with a disability family support program through a state body. The Family Support Program is *brilliant* if you are one of the pitifully few families who are chosen. High needs funding band is now about $23 000 a year tax free. It usually takes about 3 applications before a family is funded though and most families are never funded.
Respite's about the same as everywhere else -- in demand and a waiting list. Medical stuff -- I'd be researching once I had an actual label to see who is the best person to see. Q waiting lists, even private waiting lists, are pretty dire. Our paed's is 10 months, our gastro's is 6 months but I don't think it's much better elsewhere.
Posted 15 December 2007 - 09:42 AM
I'm in Qld also, I've generally never had any trouble getting appointments for Denis, at this stage he sees an orthopedic surgeon, a neurologist a gastroenterologist,an optomologist, and others as required.
Denis is 6 and has epilepsy, is blind, is quadraplegic, has CP, and fed via a button.
I receive a family support package, funded by the government and administered by Lifeline. I only put in 1 application, but am only getting low band support. I get 3 hours respite a week for him(funded by Commonwealth Carers), I haven't had any problems with actually getting respite, unfortunately they can't lift him or give meds.
Den goes to the same Catholic school as my other kids, this year he went 5 hours a week and next year it will be 7.5 hours a week.
We live in the country, so travel to Brisbane for most of his appts, 3 or 4 times a yr. If something comes up in between then he's sent to Brissie by Flying Doctor. The PTS money is pitiful, but I can get free acommodation at the hospital. The CP League, and the Low Vision Team do outreach visits to country areas, which is convenient for us.
I can't tell you what is offered in other states as I'm a Queenslander through and through, but I have heard that some other states are better and some are worse in terms of funding and services that they provide.
Have heard the NT doesn't have the same no of specialists as other states, as they send some kids to Qld for treatment.
Hope this some help to you,
PS Just remembered that Den saw the metabolic specialist at the children's when he we a baby, and I really liked him.
Edited by ambwrose, 15 December 2007 - 10:18 AM.
Posted 15 December 2007 - 10:46 AM
We are in the ACT at Jet07!
We get all our service's through Therapy ACT free. This is physio, speechie, OT and social worker. So far they have been brilliant. We also have had very small wait's to see pead, pead surgeon, ENT specialist's etc and that is with both kids not just DD. The pead outpatients service at the hospital is also great.
We spent a month at Westmead and spoke to a lot of people from NSW and were amazed the cost to access some of the services we get free.
We have only just started on this journey and I am already grateful to be living in the ACT.
Posted 15 December 2007 - 12:38 PM
The waiting lists for a paed gastro in Q is currently horrendous -- I think Geoff Cleghorn is back in private practice and not too bad but the gastro clinic and the private practice clinic gastros are currently running with about a 7 month wait. RCH should have 9 paed gastros and has the equivalent of 3.5 gastros.
It has only recently got that bad though.
Amwbrose, are you putting in yearly reviews so that you can get moved onto higher funding?
Posted 15 December 2007 - 01:00 PM
Hi there Mere,
I think that services etc differ from state to state and it really depends on what your child will need as well as what your expectations are within the public system.
We live in Melb, VIc.
We have been "in " the system since cooper was born. We have never really had to wait as such for medical services and find the Royal Childrens Hospital world leaders in Cerebral Palsy. WE attend a cp clinic every 6 months and are also part of a study tracking children with cp born 2005 for 5 years. We also see a Dietician, Orthothics dept, Hip xray, Physios, Neurologists.
Within the Community we access EI thru Scope. Initially we were thru DHS but I wanted more group options for cooper. Mainstream physio, ot and speech....altho I must admit I take this with a grain of salt but thats my personal opinion. WE attend a playgroup fortnightly and hydro. They also help access some $ for equipment such as a walker, chair, bath seat etc.....endless list!
Through the local council we receive respite. I have started at 2hrs p/f but am welcome to more but this suits our needs at this stage. we pay a minimal amt for this.
Our council seems quite proactive too with facilites for people with disabilities and has many playgrounds with accessible equipment etc.
AS far as case managment goes bad news here as I have been waiting since March this year for any sort of package as such...even to help fund equipment etc....grrrrr .
My main gripe is that 3 year old kinder for next year is not state funded for an additional assistant.....so i am trying to find some $$$ to employ someone from a respite agency.
We also balance all this out with some private therapies and an alternative one too.
Being close to our family is absolutely essential and both our extended familes live within 40 mins.....very supportive but also able to give us space when needed.
good luck with your move when you decide! and on getting those results asap!
Posted 15 December 2007 - 05:56 PM
Sorry to take over your thread mere2.
No I don't have to put in reviews, they keep telling me that I'm not spending enough money. The Family support worker rings me or visits me monthly, to see how things are going.To date I think we've spent about $15 000.
About the gastro, when Den needed to see one last year I had to wait 3 weeks to see Dr Cleghorn, but I'm not going to keep seeing him even though I really liked him(they told me he's going to stop operating at the children's and I'm never going back to the Mater).
Then last month some women from the Children's rang up and told me Dr Ee wanted to see Den, so I said it could wait until his next round of appts.
I rang Dr Bourke( Den's surgeon) for an appt for the same round, and they wanted to give me one straight away, in the next week.
The only thing I have to wait for is the Orthopod, I've seen one at Scoili clinic that I want to keep seeing, but have to wait to see him privately. Scoili clinic is only once a month, so doesn't always match his other appts.I don't like to keep running down to Brisbane if I can combine the lot, I like to spend a week there and see every one.
So do you go to the Children's?, and who else do you see?
Posted 15 December 2007 - 06:18 PM
Sorry for the hijack!
Yeah, I keep doing these careplans and then not spending it all and end up having a huge spending spree in June. I'm going on a holiday all alone very soon though!
I saw Cleghorn a couple of times a few years back and found him to be very very old fashioned. We currently see Frances Connor but I think she is only taking new patients with motility issues quickly and everyone else is waiting for months to see her. I've heard good things about Ooi though.
We've just moved from the Mater to RCH, following Frances. I was happy with the Mater but you gotta do what you gotta do to see the doctor . Peter Borzi is our surgeon but he also practises at the RCH so we will transfer there to see him as well.
Michael McDowell is our paed but his waiting list is about 10 months I think.
Posted 16 December 2007 - 12:00 AM
I live in QLD, and while I get a fairly good package, so 'on paper' it looks like it's quite a good deal. But on the other hand, I find it hard to access the 'approved' services, as the wait list is so long on most of them. With the package I receive, in order for the money to come straight from my package (as opposed to me paying up front and then getting reimbursed at a later date) I have to use 'approved' services/specialists that are one a list that I have been given. Which essentially means that in order to do this, I have to sit on a waiting list forever to get any services. DS (who is nearly 4) does get speech therapy, and has just been accepted for EI, (both of these services are paid straight from my package) I pay upfront for his behaviour therapist and get reimbursed 3mthly for that cost (it cost $380 a fortnight - for 5 1hr sessions). I am allocated 6hrs a month for respite, however getting a respite carer in neigh on impossible, the very few carers I have had, have lasted a couple of hours at most and have rung my cause they couldn't handle my DS. I haven't have any respite on well over a year. I tried to get emergency respite once, but nope sorry no one could help me, mum and dad ended up driving 6-7hrs straight (they were in Coffs Harbour on holidays) to help me out, as I was at the end of my rope, they made it just in time, I was nearly over the edge!
I do however, have an absolutely wonderful Family Day Carer, who is worth her weight in gold, which means I can work 3 days a week! Without her we would be in a very bad way I suspect, as I just couldn't live financially without being able to work 3 days a week.
I suspect that your experience of Disability Services would differ from state to state and dependent of the type and severity of the disability.
I do have wonderful support in mum and dad, and they are worth everything I own, and usually take DS at least one a fortnight and more likely once a week!
Posted 16 December 2007 - 04:52 AM
We are in Victoria and when I first went to see Paige's Paed he told me about a few of the EI services but also told me that there were long wait lists and to apply early. I sent a refferal to Rusden EI in Melton and also Pinarc in Ballarat and I was on the waitlist for both but then Rusden called me virtually straight away telling me they had a spot for Paige.
I was a bit annoyed with Rusden recently as Paige was receiving no speech therapy as they didnt have a speechy and I was told Id have to go private for that So tried again to get into Pinarc but was told that if I wanted to be on the waitlist for Pinarc then Id have to leave Rusden as they said I wasnt allowed to receive services from both.
I told the intake officer to forget it as I didnt know how long the waitlist at Pinarc would be and then Paige would receive no services at all if the waitlist was 6 months long! Anyhoo, it seems that Rusden have a speechie now and will be working with Paige next year.
Im envious of the ladies living in the ACT, seems all the services are better there
Posted 16 December 2007 - 06:54 AM
"Ladybug" and I were discussing this in person over coffee last week , but we are both very good at getting what we need for our kids. To get into Therapy ACT when I first arrived it did take standing in reception virtually refusing to leave until I had an assessment appointment (after putting my name on the waiting list 3 months before we arrived), and once in you have to keep asking for more appts, but it is possible to get them.
There is a visiting gastro monthly, but you have to go back to Sydney if he needs to do surgery. We go back to Sydney for craniofacial clinic, and are keeping neurosurgeons going both here and there. Everything else we've needed has been here though.
I don't use disability services at all. Just have the social worker through Therapy ACT, but I'd pretty much arranged everything I need before I met her, so she hasn't done much.
I actually preferred the very early (up to age 3) EI scheme in NSW (that was private but funded by charity) as the parents & siblings attended too, and learnt Makaton etc, whereas here there is nothing much but Therapy ACT groups to the age of 2, then it is run by Dept of Ed, and the kids are just dropped off for the session. I think it makes more sense for the parents to be more involved until they get to preschool age.
EI preschool starts at age 3 here, and mainstream preschool (very easy to get aides if required) at age 4, all run by Dept of Ed, and feeding into transition to school.
Posted 19 December 2007 - 03:47 AM
Thank you for all writing wonderful indepth replys. It truly has been a help for me, especially in identifing what I need to think about. (scary sometimes). Canberra is looking pretty good in terms of services (but no family). My dh wants townsville (no family or little services what I hear) and my family lives in Perth. (very expensive to live) This is going to be really easy to work out!!!!
Once again a big thank you.
Posted 19 December 2007 - 11:14 AM
I'm in WA. Witing lists to get into anyone is pretty long. It's taken over 6 months for paed. and a friend has been waiting months for her sons tonsills to be taken out.
We've found it easier to go private with our child's minor issues.
Big problem over here is lack of workers in every field resulting in under staffing.
You said remote, I'd avoid that. Resources in the bush aren't good.
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