our letter to MP Minister for Diabilties and Multicutural Affairs,

My new neighbour helped me write this letter, I’m so grateful to her I added a little bit just hope I didn’t stuff that part up.
What do you think?

Dear Mrs xxxxxxx

I am writing to you in regards to access to early intervention services for my son , who has Down Syndrome and other children with disabilities in our local area of Middlemount.

In the past my son has had sporadic services from visiting professionals employed by Disability Service Qld. We have seen a Speech Therapist approx 4 times, Occupational therapist approx 8 times and Physiotherapist 3 times in approx 4 years. If we require these services on more regular basis we have been advised that we will need to travel to Mackay, which is a 6 hour round trip or Moranbah , a 4 hour round trip.

As a busy mother with other children, it is unrealistic to travel these distances on a regular basis, without negativity effecting the educational and social requirements of my other children. My oldest daughter had over 30 days off school last year , due to traveling to seek medical and allied health care for my youngest son.

Last year we were asked to travel to Dysart which is about an hours drive these are long distances not like the city where you have traffic.This service we cancelled after his Occupational therapist seemed to become frustrated with my son and his brother. My son was restless after spending around an hour, in the car and often we would be waiting for our therapist to arrive. We know from experience that this travelling to therapy doesn't suit our son.
Our family received a letter dated 16^th April 2010 from Julie Jorgensen , Acting Manager of Professional and Specialist Services (A/MPSS), Disability Services Qld. This letter outlines that there is an increasing demand on services, and that in an attempt to streamline and increase efficiency, a number of changes will be made to the management of professional services.

Changes that are being implemented include-

L Decrease travel time for appointments to single users who are out of town by encouraging them to make arrangements with us when they are in town

L Reduce the frequency of of face-to-face Outreach Services to both the Hinterland and Whitsundays and increase consultative contact using other medium.

My concerns are that we already spend a large amount of time each year traveling and that this policy will increase the travel that we will need to undertake as a family, this travel is both expensive, unsafe and time consuming.

The other issue is that services are being decreased to our area, and “Consultative Contact using other Mediums” will be put in place. There is no indication of what mediums will be used, but I believe that he will need face to face services to assist with his educational and medical requirements. I feel that he needs to build relationships with professional providers, this will not occur with web-cam or phone services.

I had considered and investigated paying private professionals in the past , however , there is nobody within our area who has the skills to work with my son. We have also been seen once in 2008 by the LifeLine Speech Pathologist funded by Lifeline Xstrata Speech Pathology Services, however we have not seen her since, and when I rang recently and enquired she advised that her funding to services this area had been ceased.

I feel that my child and other children in this area have been neglected by the government on this issue, your page on the Disability Services Queensland website states that your immediate priorities are -

Focusing on early intervention particularly for children with a disability

I feel that the Government is addressing this issue in city areas and then not addressing it in rural and regional areas. To me, this is discrimination based on our location.

I look forward to discussing this issue with you and can be contacted on xxxxxxxx or email xxxxxxxxxxxxxx and hopefully we will be able to find a solution that allows my son and other local children the best available service.

Kind Regards

Cathy xxxxxxxxxx

I think it reads well Cathy - it is appalling that that is the level of services. It is never going to be easy but it clearly looks as though the dept need to be more creative with the resources that they have (and have more resources of course!).

Good luck

Sounds good Cathy Smile

Good on you Cathy! Are there others writing similar letters? Remember it's the "squeaky wheel that gets the oil". I think what you've written sounds very reasonable, so hopefully they'll consider it carefully.

Cas

I wouldn't know Cas there is no-one else in our town useing their service which is why they dont care to come out for one child. had a call from them Friday the new ST who wants us to come in Wednesday (when we were meant to go in with the new AFO's which I think I will just burn...and I will love to) to have another assessment. anyway she said that the time they save on travel they can see a bunch more children and give more to the ones they already see.
Aden was meant to have 1 visit every 3mths but it never happened like that.
I hate them and i'm so full up with angry I cant stand myself right now.

I'm sitting here tonight, angry, and writting letters about all the other areas Aden is being stuffed around with
he cant walk anymore wihtout the AFO's well he can but he constantly falls over. we knew this was a risk but everyone said do it because in the end without them he would ended up in a wheelchair and yes his legs are that bad.

I think that letter was great. But I also think they won't listen. So much for them encouraging people to move into the rural areas cos the cities are too crowded!!

Michael got offered a job in Roma (7 hours WNW from here), which he has to make a decision on this week. We would definately take it, except for the fact that I am worried that we won't get very good services there. We have it great here in North Brisbane, with Samara seeing someone most weeks during school terms, as well as playgroup at the special school.

If we do go up there, I told Michael that he needs to find another job back down here before Samara starts school. While I homeschool the others, I don't think it would work for Samara, simply because she won't get much social interaction, as her next oldest sister will be 15 by then.

I think it sucks bigtime that our decision to go rural has to be based so much around services or lack-there-of. Someone suggested I get a PO box in Brissy, just so I can keep seeing the therapists she already has, but a 14 hour round trip is a bit much! LOL. The closest big centre to us will be Toowoomba, which is an 8 hour round trip. Roma itself has a population of 7,000. I am waiting for DSAQ to get back to me about what services they can find up there.

Good luck with getting ALL the help you need for Aiden. Do they at least give you some sort of travel allowance, or do you have to cop that too?