NDIS... Have you written your letter? Update

Hello All,

After yesterday's blog, I had a facebook friend make a really good suggestion in regards to writing your letter.

As well as writing your letter, it would be really good if people could print the 'Every Australian Counts' poster and have their photo taken with it, like I have below.


You can find the poster here

ACT NOW: Write your letter, maybe try and keep it within 2 pages and email it to maddles_456@hotmail.com, I am going to need them to be to me no later than Sunday 5th June 2011.

NDIS... Have you written your letter?

I realised recently that all of this jumping up and down (metaphorically speaking that is ;) ), that I have been doing recently in regards to making people aware of the NDIS and the need for it is all well and good, however I realised two things:

1) People with a disability need to be more involved and more stating their needs

and

2) Signing the Every Australian Counts campaign is an excellent start, but really we should be following that up with a letter to Prime Minister Julia Gillard, telling her our story, saying why we count, and asking when the NDIS will be implemented.

So after realising all of this I have written my letter to Julia Gillard and I want everyone else to do the same.

I know it takes effort to write, print, fold, envelope, stamp and address a letter, SO what if I said all you had to do was write the letter and email to me instead? That is what I am offering: If you write the letter and email it to me at maddles_456@hotmail.com , I will print and send everyone's letters together.

If you are thinking okay, good, but what do I write? Well below is just my letter and what I wrote, use it as a guide, but really say whatever you think, but we need to not ask IF an NDIS will be implemented but rather WHEN an NDIS will be implemented.

My letter:

Dear Julia,

My name is Madeleine Sobb, I am 21 and I am from Melbourne. I was born with a rare bone growth disorder resulting in short stature. I was also born with both of my hips dislocated and scoliosis in my spine. I am able to walk short distances but I mainly use my electric wheelchair for daily living.

I am studying a Health Science degree in Disability Studies at RMIT University. I am a Para Equestrian Dressage Rider, and a disability rights activist. I spend much of my free time working on many disability related projects.

I am writing to let you know how much Australia needs a National Disability Insurance Scheme.

I am sure you are well aware of the Every Australian Counts campaign towards an NDIS. There is so much in politics and the media about equally and making sure people of all ages, race, sex, religion, gender etc, get a fair go and have a life that counts.

If I counted, I wouldn’t have struggled so much in mainstream education to receive adequate teacher’s aide funding.

If I counted, I would’ve received post school funding to help me to achieve my goals, rather than being told, I wasn’t ‘disabled’ enough to receive assistance.

If I counted, I wouldn’t spend copious amounts of time filling out forms, making phone calls, and fighting hypocrisy just to get my basic needs met.

If I counted, I would receive all of the funds to pay for the $75,000 modified vehicle I need to achieve complete independence.

If I counted, my siblings wouldn’t be financially disadvantaged because my parents are having to plan for my security in the future.

If I counted, my parents wouldn’t spend time worrying if my needs will be met after their time.

In Wayne Swan’s Federal Budget speech he said: “Australia has many capable hands, we don’t want a single pair to go to waste.” Without an NDIS, you cannot be certain that will be the case. We NEED an NDIS and we NEED it NOW! Its not about wanting anymore, its an urgent need.

So my question to you is, WHEN will we see the implementation of an NDIS?

I will look forward to hearing from you in regard to this matter.

Yours Sincerely,

Madeleine Sobb

ACT NOW: Write your letter, maybe try and keep it within 2 pages and email it to maddles_456@hotmail.com, I am going to need them to be to me no later than Sunday 5th June 2011.

National Disability Insurance Scheme... want more info?

My last blog was about what do people with a disability really want and the need for a National Disability Insurance Scheme (NDIS). I spoke about my needs and wants and why it would benefit me but also a general overview of the kinds of things everyone with a disability wants and how we could benefit from an NDIS to fulfill those needs.

I have been asked by some people where they can find some other information about the NDIS. Below, I will do my best and showing you the places where I've found the most helpful information:

Most people don't have the time or energy to read the 800 page NDIS report from the Productivity Commission. If this is the case you can do one of two things:

1) Watch the presentation given by Patricia Scott (Productivity Commission Representative) from the National Disability & Carers Congress. NOTE: This presentation goes for 50 minutes!


2) Read a brief overview of how it will work, and what are some of the concerns expressed by the delegates at the National Disability & Carers Congress. This was written by Dr George Taleporos for the DiVine Community. View it here

For personal stories of people with a disability and their carers, on why the NDIS is needed:

Watch the following videos:

Robert & Mary's story:


Billie & Heike's story:


Bart's story:


Peter's story:


Claire's story:



Visit ABC's Ramp Up and read the following articles:

Time to Speak Up - Carl Thompson

Now is the time to make Every Australian Count - Bruce Bonyhady

The NDIS and NIIS, what's the difference? - Tony Jones

Changing the Climate of Disability - Stella Young


And lastly, if you are yet to stand and say that Every Australian Counts, please click the image below - It takes no longer than 30 seconds!

What do people with a disability really want?

I’ve procrastinated about writing this blog, purely because I didn’t know where to begin and how I would condense what I wanted to say. This is my first blog since attending the National Disability & Carers Congress (NDCC) and I will be covering in this blog some more of my experiences from that and some other disability related things I’ve read about recently and formed opinions on.

I found that the NDCC was very beneficial for my knowledge as someone who wants to work in the disability sector when I finish studying and from a personal perspective as someone with a disability. Before the congress I was never someone who understood much of or followed politics until then. I found I learnt much about the important people in government who have or have had something to do with disability. As a result of this I now seem to find myself getting online to see what the latest is in politics especially where opinions and discussion around disability reform are concerned.

At the NDCC we heard from Patricia Scott from the Productivity Commission who has been apart of the team of people who have written the draft report on the National Disability Insurance Scheme (NDIS). I knew of the NDIS before the congress but I now feel much more informed about what it will involve if it is to be implemented. I always agreed with anything that was potentially going to improve disability services within Australia but I was then able to confidently say I supported the idea of an NDIS. I was ready to say that I count; that all Australians count and no one should be living second-class lives because their basic needs are not being met.

Last week when the Labour government gave the federal budget speech there was much uproar by people with a disability, their families and carers about the intentions the government has to focus on getting more people with a disability into employment and less on the Disability Support Pension. The strategy they want to implement is to allow people on DSP to work double the amount they were allow before losing some of their payments. They will now be allowed to work 30 hours per week instead of 15. People who claim the DSP will be made to attend regular interviews and training sessions with Centrelink to ensure they are still looking for work whilst claiming benefits.

What bugs me the most is that I feel (and I know so much others do as well) that the government seem to be missing or ignoring the real needs of people with a disability. I do agree that there are many people with a disability claiming the DSP when in fact they could be working in some capacity but that doesn’t mean everyone on the DSP are sitting at home because they can’t be bothered doing anything else.

There are so many other underlying issues that people with a disability face everyday that prevents them from working or looking for work. We need the following:

- Suitable public transport system

- Education where everyone gets the support we need regardless of how ‘severe’ our disability is in the eyes of others.

-Aids and equipment that not only do they need for basic living but just for anything that will increase independent living.

-Enough attendant care that will allow us to live the lives we dream of and not just to meet our basic needs.

-Disability awareness programs in schools and workplaces to help reduce stigma around disability.

-Independent living options – we don’t want to live with carers and family for the rest of our lives nor should we have to, we need choice!





Looking at Maslow’s Hierarchy of Needs, some people with a disability don’t even have the physiological needs meet. Once we have those basic needs met, then of course we can look at employment, until then though the government shouldn’t be putting a blanket fix over us and hoping that this will keep us quiet. I assure you Julia Gillard, you are making us more angry than ever by ignoring our needs! We need an NDIS.

There are a bunch of things I would like to achieve in my life but my main roadblock is funds. I spend money on this that the government should provide instead of investing in my future goals. Some of the things on my list of goals include (not in any particular order):

- Purchasing a car, having it modified and learning to drive it.
- Travelling overseas.
- Skydiving
- Getting married
- Adopting children
- Writing a book
- Being a public speaker
- Representing Australia at the Paralympics in dressage

The list goes on forever but Wayne Swan said in the Federal Budget speech that "Australia has many capable hands. We don't want a single pair to go to waste."

My question to Wayne Swan, Julia Gillard and any other Politician reading this:
How about an NDIS and then they won’t?

National Disability & Carers Congress - Day #1

Today was the first day of the National Disability & Carers Congress where I represented the Every Australian Counts community as their Social Media Congress Champion.

The first person to speak was the Honorable Bill Shorten MP who was the Parliamentary Secretary for Disabilities. He came and spoke about his time in this position and his personal connection to fighting for the rights of people with a disability and their carers. He spoke on how he feels how incredibly wrong it is that people with a disability are living second class lives. He gave the statistic that with the amount of people with a disability in Australia, we could populate Adelaide. Most of what he had to say was very good expect for when he started to highlight what good things the government is doing for people with a disability and he was mainly highlighting services for children. I was thinking what about adults? Don't we matter? I guess his speech writer needs to think about all areas next time.

Next was the presentation from Patricia Scott who summarized what the Productivity Commissioner's Report on the feasibility of an NDIS would be. The summary included:

The introduction of 2 schemes - one to cover disability as a result of injury. It would cover 800 cases in its first year and gradually build up to 20,000 per year. It would cost the government 685 million and it would start in 2013.

The second would be an NDIS for universal cover. It would help those with reasonable need. There were questions today about what reasonable need meant as everyone's definition on what reasonable need is can be very different. It would also be an individual package that would promote choice.

There would be three tiers to it. The first tier to cover social participation for everyone, the second for information, referral and web services and the third tier for individual support packages.

The individual support packages would address core activity limitations eg communication or mobility etc. The individual support packages would cover everything expect public housing, education, and health except for early intervention.

The scheme would be commonwealth funded and therefore there would be tax cuts off mortgages etc from the State governments because there would be less need for funds to cover services if they are coming from the commonwealth government.

Senator Jan McLucas the current parliamentary secretary for disabilities, then spoke about the future of disability. I felt she spoke straight off the page with absolutely no passion. I really don't know how she will be an effective advocate for people with disabilities and their carers. The only she said that I thought was interesting was that there has been 11.5% increase of disability in Australia since 2003.

There was a question and answer panels of four people and the question put to them was: Describe in 5 words how you would like to see the disability sector in 5 years from now?

The speakers were Sally Richards (carer & advocate), Damian Giffis (works with people with a disability who are of aboriginal descent), Rosie Crossley (carer & advocate), and Stella Young (Disability Rights Activist & Editor of Ramp Up).

Sally's five words were: Time to stop the hypocrisy!

Damian's five words were: responsive, community development, medical responsiveness, advocacy, and breathe

Rosie's five words were: loose the labels!

Stella's five words were: She ignored the question! She wants equal rights for people with a disability. The main issues she touched on were education, employment, enough attendant care, stop fear against disability and stop seeing it as a negative thing. She thinks the disability system is currently based on survival. She wants basic needs met, but she also wants people with a disability to live a fulfilling life where they can have aspirations, desires, goals and dreams. She wants the NDIS to come to fruition with our dignity still intact, she wants the NDIS to come from a sense of our rights and not for it to come from pitty on us. She wants parents to stay parents and not for them to be carers!

The honorable Mary Wooldrodge minister for mental health, women's affairs, and community services, Senator Jan McLucas and Senator Mitch Fifield all spoke and answered questions as well.

The point of today is that we count! All of us! If you agree, go to everyaustraliancounts.com.au and sign the campaign petition towards an NDIS and forward it to you your friends!

I'll have more updates from the Congress tomorrow. Follow me on Twitter at twitter.com/tinymads for live updates. Otherwise here tomorrow night and youtube.com/tinymads.