Tuesday, 24 April 2012

Firstly I would like to apologise but this is not one of my normal posts.  This is heavy and personal and not at all bloggy, but I HAVE to say something!

I have written and re-written this post!  I don’t want to sound like I am on a soapbox and I definitely don’t want to sound like a needy victim.  I often sound like both when I talk on this subject because we have been so personally and emotionally affected.

I want everyone to understand about a huge problem in our country that I believe affects everybody.  I was always under the impression that, because we live in Australia, all people with disabilities could receive the help that they needed.

When my son (who has Down syndrome) was born I discovered that I couldn’t have been more wrong.  Something that I imagine that the general public is unaware of, is that one of the biggest tasks to undertake is fighting.  I have had to fight every step of the way for therapy and education for Buddy Boy!  I know a little girl with cerebral palsy who waited for over a year to see a speech therapist, although, not only could she not speak, but she couldn’t eat!  Our government allows these children to lie on the floor at home and wait!  I have fought and cried so many times that I have lost count.

I have written letters to the managers involved in early intervention at the Department of Education and Early Childhood Development.  I have written to, and had meetings with several politicians and I just generally begged our case manager for more therapy.  None of this exhausting and emotional fighting helped.  We had to travel for over two hundred kilometres to receive the help we needed for our son.  I’m sure I don’t need to tell you the toll that took on our family.  My young children spent hours in the car and I wasn’t home do Mum stuff.

I wonder what happens to children if their parents aren’t as determined or capable as I am?  I hate to think!

The reason I say this affects everyone is that it is not only a problem for children born with disabilities.  Anyone can become disabled through illness or accident at any stage of their lives.  We never expected to have a child with disabilities in our lives and you can’t know what is ahead for you either. 

Some of the problems that I have heard about repeatedly are families are exhausted and can’t get respite, some people are unable to get necessary equipment, some can’t get therapy, some carers are under financial pressure as a result of being unable to work while they care for their spouse/parent/child etc.

Please read some of the following stories to get an idea of what goes on –

·         A woman forced to fight for compensation through a nine year legal battle after an accident at a swimming pool.  (In this case the govt. spent money fighting against her, rather than helping her!)

·         A profoundly deaf woman who was fitted with a cochlear implant to help her hear.  A part has worn out and she cannot afford the cost of replacing it.  She didn’t realise at the time of implant that she would be in this position.

·         This one is well worth looking at.  It has a link to a clever and very short video on how much the little things in life can cost a family.

·         Imagine being an 84 year old woman worrying about what will happen to her disabled son if she were not around.

A consortium of organisations involved in disability came together to come up with a solution for our current dysfunctional system.  They came up with the National Disability Insurance Scheme (NDIS).  It is similar to how the TAC works and it is protection for everyone in the country who may have needs at some point in time.  The Productivity Commission looked into it and recommended the NDIS be implemented and the current govt. were supportive.  Still, the scheme has not been guaranteed by any political party. 

On the 30th of April there will be rallies held across the country.  I will be at the one in Melbourne.  It will be at Federation Square at 12.00pm.

I appeal to anyone who can attend one of these rallies to do so.  You don’t need to have a disability to support the NDIS!!! You just need to care!  Likely you will be affected at some point in your life to some degree.  Your elderly parents may need support, your spouse may have an accident or someone in your circle of loved ones could have an illness that leads to disability.

Let’s be a real community and support those who need it.

If you can't attend but want to add your support please visit the Every Australian Counts campaign site to read more about why this reform is needed or here to join the campaign and boost our supporter numbers.
Now....... if you see me there, please come up and say hi!  I may be slightly frazzled as I will have four kids in tow in the big, scary city, but I would LOVE to meet you!

12 comments:

Dani said...

Well done, Linda - do so wish I could be there - to meet you, to support you and to help you.

We also have had experience with disability in my husbands side of the family - his half-sister was oxygen deprived at birth. She is the sweetest, most caring and loving person you could ever hope to meet, and, from what you have written over the months / years I have been following your blog, your little guy sounds like his heart is as big.

It seems as though us "commoners" HAVE to tell the powers that be that they aren't performing as they are expected to. They are not fulfilling the roles they were ELECTED into. Shame on them!

Stand tall, Linda - you are one amazing lady :)

Linda said...

Thank you Dani for your kind words. I just wish our country would improve the way they deliver services, and I feel that people don't realise the important role they play to affect change. If we all stand up and let the govt. know we expect better, then we would see results.

Theressa Putland said...

Dear Linda,

I so feel for your fight. The timing of your post is quite significant to me, I am curently reading a book called 'lessons my child has taught me' a collection of short stories from families of children with disabilities. The common thread for each story is the families need to push, fight and advocate. My daughter is hearing impaired, just trying to navigate around the system and know WHO to go to is a mine field in itself. What scares me more than anything is the general populations lack of understanding in any respect to someone who has a disability. My job is to work in early childhood to support carers to provide inclusive environments for children with disabilities and it amazes me the lack of knowledge that is in our education system and also the lack of desire to adapt learning programs to benefit individual children. If they don't fit into the box, they fall behind or are labelled naughty. This is especially true for the behavioural disabilities such as ADHD or children on the spectrum. Keep up the fight, like all change it takes time and hopefully in the future our children can look back on us and think what a ridiculous system we had to live in - the change will have happened and there will be equality for everyone. (oh my - who's on their soap box now? :))

Fiona from Arbordale Farm said...

Linda feel free to get on your soapbox about this subject when ever you want. This is how you will bring these issues out into the open for those of us who are otherwise unaware because it does not affect us at this point in our lives. I really take my hat off to you and cannot believe that it is so hard in a country like Australia just to get basic help. I am not able to get to a rally but I have followed your link and signed up. I would also like to link back to this post from my blog so that we can spread the word.
Keep up the hard work you are doing and my suggestion is pack some playing cards for the kids to take to the rally : }

Busy mum of 3 said...

It's a bloody disgrace, especially when you see such financial waste in so many areas of local, state and federal government. My heart goes out to you, I don't know if I would have the strength to fight for so long for so little. Good luck, hugs and high fives (for the little ones). May the force be with you.

Kim said...

Thankyou for your post. I often read your posts about your beautiful little boy and all i think is how lovely he is , but I didn't really understand the struggles you have been through to get him help. I have come across many children such as your little buddy through teaching and your post helps me understand that these loving caring families I deal with may also have to deal with things like this also. You made me a better teacher today by arming me with knowledge. My thoughts are with you.
kimx

Linda said...

Hi Theressa, You are a strong woman to even read that book. I had to read through heaps of stories to write this post and I found it so depressing. You are right about the navigating! It is such a messy system. I know I sound like a conspiracy theorist but sometimes I wonder if it's designed like that so that you don't make use of the services, therefore saving money. And no.... the system doesn't cater for individuals and I would love to see that change. You stay on your soap box coz you say it well!

Fiona, thank you so much for following up on this. And I would love you to post on this subject because I don't think people realise how poor our system is in Australia. I think you are wonderful person to have so much empathy when you aren't in a similar situation!

Busy Mum, Thank you for your support. Many Mums don't have the strength to fight and I get that. That makes me more determined because I want to change it for kids who will follow behind us. Why should every new parent go through the same battle as the parent before them? I'd love it if you could just add your name to the supporters on the link. ;) It puts pressure on the govt. if they see heaps of people want change!

Awww Kim, You made me want to cry! Thank you. And I am glad people like you are working in the field. There are so many wonderful people and therapists in disability. They just need the government to back them up with some funding so that they can really make a difference in people's lives!

Thank you all. I was quite uncomfortable about putting up this post because I would like to keep my blog light. I really appreciate your comments!

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Kathryn Ray said...

Here in the US, you either have good insurance that covers things or you don't. Then you have to be lucky enough to live in an area that has services or non-profit organizations that help out.

My husband uses a chair and developed a pressure sore years ago because our "good" insurance did not want to pay for a back-up cushion and it took too long to get a replacement. So instead they paid for in-patient surgery, a hospital stay and weeks of post-op care... more than 10x the cost of a back-up cushion.

I know that our system is messed up, but it saddens me to learn other systems are just as bad.

I hope you keep talking about it. I'm surprise by how many people don't know of or have experience with people who have disabilities or different-abilities.

Good luck to you. :-)

Linda said...

Hi Kathryn, Sorry, I missed responding somehow. Yes it's crazy isn't it. Two of the countries that you would most expect to be able to care for their people are doing a very shoddy job!

Fancy your husband (and you) going through all that just because of bad organisation. Isn't it frustrating?!

Mrs B said...

I so hear you on this. My son has a "mild" disability (dyspraxia - affects gross & fine motor, speech, motor planning, memory) but he requires 7 hours of physio and ot per week (when he was diagnosed last year it was 18 hours per week). But because it is classified as "mild" we can get no assistance of any kind.

My DH works 2 jobs so that I can stay home and do his therapy and take him to appts.

And I hear you about fighting. I never realised how much you have to fight. A great physio really inspired me to keep up the good fight when she said what we fight for will change his life (or not!!).

I admire your post!!

Linda said...

How strange Mrs B. I was just discussing dyspraxia today! I don't know much about it but was talking to a woman while buying brocoli at the nursery. Her son has it quite severely, and I was sharing with her that our principal's twins had dyspraxia. They are now young teenagers and are doing SO well!

Yes it's tough but I agree with the physio. I fight tooth and nail because I believe we can drastically change outcomes by the work we put in. Your attitude is great. Good on you!