The Right Start

Hiya peeps
If you aren't on facebook or haven't already seen, here is the link to the charity a few of us local mums started. ----> The Right Start

Our major goal is to open Australia's very first Down syndrome specific center (like they have in the UK, USA, Ireland and just about everywhere else!)
We're always doing stuff to raise money to go toward this goal. We run a support group/playgroup/morning tea once a month. We're always out and about in the community raising awareness, breaking down those barriers, & smashing those stereotypes! If you haven't already joined out facebook page, please do so.

Cheers,
Kris.

loke great your doing a wonderful job!

Going to join right now - great work Kris!!

Yes great work Kris . I hope your dream of opening a Centre comes true!

Thanks Nazz, we hope so too.
Got a lot more funds to raise, and hoping to get some support from the government once we raise enough to build. Hopefully in the next few years

Good for you Kris! How much support do you get from the DS Associations? Do you have any links to DS centres overseas that you're talking about? I'm not sure still what you're trying to achieve Sounds like you've put a lot of work into it and I hope you reach your goal

Cas

Sounds like a great thing to do. Will support as I can

It would be nice to have somewhere to go where they understand about DS and have expertise in all areas. Even though my paed is a professor and the head of paediatrics at the Canberra Hospital, he still doesn't have a huge amount of experience with DS and still has some limited thinking.

Cas, it will be a center for our kids to get ALL the therapies they need. Somewhere for other parents to meet for playgroups for the younger ones, somewhere for counselling either individual-couples-families etc. Basically a one stop shop for kids and families.

As it is, early interventions in our local area are pretty good, but they are full! And with all the wodnerful funding the gov gives to Autism it has pushed many many children down the waiting lists as these kids get priority. It also means that private therapies have risen their prices because they can get more money from the gov and simply because they can! This puts private therapies for families such as ours, even further out of reach, making it impossible for us.

DADHC (Dept of Ageing Disability and Home Care) who manages children from school age right through to adults and the elderly are stretched very thin.
We were on the waiting list for 3 years before we were offered ANY therapies.
THAT alone is ridiculous! And still then they only offered us 8 sessions each of OT and speech, then we are to apply again and be put back on the bottom of the list to wait what...? Another 3 years? Well probably more because of all the children with ASD entering school and being placed on the list also.
It's a joke! And our kids deserve so much better! Mothers of babies and toddlers I know are being shoved out of programs to make way for ASD kids. I'm not angry about what ASD get, they deserve it, but why should our kids keep missing out because of ASD and it's the 'flavour of the year' in the mouth of the govt. ....?
So we banded together and created the charity.

As for DS assoc. They didn't want to help us. We approached them and they said they couldn't help. Basically the gov give DSNSW about $66k per year. They fundraise a lot but all that covers is wages basically. So they said they couldn't help. They are more of an information center and an over the phone parent to parent counselling, library etc What we want is so much more.

So that's the basic rundown.

Kris, Our situation with DADHC was similiar to what you describe- except we only got 5 sessions of speech therapy, not 8. We received this in 2008, and have been on the waiting list again ever since.

The only positive was that DADHC have recently paid for Abi's speech Ax for school to be done privately- most likely because we still have a long wait to go before we get to the top of the list and get another 5 sessions of speech.

Good luck with The Right Start- I like reading about what you are up to with this, on facebook.

We had the same situation with DADHC- listed as a High priority and still waited years and then it's only for 6mths at a time when a review is done and if needed you are back on the waiting list... to wait a few more years

Kris- I have already told you how great I think you girls are I still stand by my offer to help if you ever need extra hands I think a centre like that would be amazing- I just wish it would be closer to my area

Kat, if my memory serves me, you're in Parramatta aren't you?
Not really that far from us. Only about 40 mins I reckon. I'd travel that far for the centre we are planning AND what's even better, when our centre opens we have already had other states show their interest and asking if we would franchise... well we won't 'franchise' as it's not a business, its a charity. So I think the cogs are already turning for other centres like we are planning which is AWESOME!!!

Yep I know I am not THAT far away- I come down your way a few times a year for footy matches (go the Tiges! ) so it's not a huge deal for me to travel down there

That is great about other states!

Do let me know if you are planning any more events- I was going to come down for the last one but already had something on

It would be a bit of a drive for me but I would still come there. I spent and hour and a half with a registrar at the hospital today because some idiot changed our appointment with our paediatrician to an appointment with a registrar and he had to keep running off to ask a real doctor the answers to what I was asking him. I was really peeved. I gave up after they started to close the unit and they are making an appointment with our paediatrician tomorrow. If they don't I will be calling them - every day - until they do.

Will let you know when the next big thing is in the works

That's aweful Cathy about the app Hope you get in asap. xx