End Deadly Discrimination campaign

#DeadlyDisabilityDiscrimination sees Health Minister act on preventable deaths

Budget announcement June 2018

Our campaign to end #DeadlyDisabilityDiscrimination saw $4.7 million funding for specialist intellectual disability health services announced in the state Budget on 19 June 2018.

The $4.7 million is not enough but it is a great start and will enable the expansion of specialist intellectual disability health services in NSW particularly in rural and regional areas. Read the Government's budget announcement about this funding.

Key elements in the announcement:

  • Three more specialist intellectual disability health teams will be established to bring the total number to six.

  • In districts without a health team nine new specialist intellectual disability nurse or allied health positions will be funded across NSW.

 These new services will mean:

  • Increased availability of specialist health assessment for people with intellectual disability and complex needs; expert advice and support to NSW Health Staff, GPs and staff in hospital emergency departments.

  • Expansion of specialist intellectual disability health services in rural and regional areas.

 

The story of Michelle Mcllquham on ABC 7.30 report who had an intellectual disability and died from meningitis after being discharged from hospital twelve hours earlier for an alleged temper tantrum, first brought this issue to the public’s attention. It has become the first of many stories of misdiagnosis and discrimination in the health services for people with intellectual disability which have been brought to Council for Intellectual Disability (CID).

We will continue to campaign for specialist health services to be fully funded and we will be calling for the new $4.7m to increase to $17 million per annum by 2022. You can still take action to help us in this. Find out how to take action below


About our campaign

Too often we hear horrific stories of people with intellectual disability being misdiagnosed or misunderstood by doctors and health workers. This must stop! 


"I have a daughter with Down Syndrome and multiple health issues who would have died twice had I not persisted in getting third and fourth medical opinions. What will happen to her when I'm not around?"


A landmark study by UNSW Professor Julian Trollor found that our health system is failing people with intellectual disability:

  • People with intellectual disability die 27 years earlier than the general population.

  • 38 percent of deaths of people with intellectual disability are potentially avoidable.

  • Many of these avoidable deaths are incorrectly attributed to an individual’s disability.

  • Professor Trollor says "We must invest more into improving the health of this group who are among our most vulnerable."

"I was told by four different GPs when my daughter was not eating enough to grow and survive that this was ‘nature's way’ of taking care of things!"


What we need to do now

Over 50 eminent academics and health professional have signed the Open Letter to the Health Minister, Brad Hazzard, which calls for “urgent and strong action to address the physical and mental health inequalities experienced by people with intellectual disability.”

The commitment of $4.7 million is a great first step but we need to continue to  campaign for specialist health services to be fully funded and we need your help to ask the Health Minister to commit to increasing the new $4.7m to $17 million per annum by 2022.

 

How you can help

Can you please phone or email the Minister for Health, Hon Brad Hazzard:

Please tell him it is encouraging to see him step up and take significant steps towards addressing the health service inequalities experienced by people with intellectual disability.

Please thank him and ask him to make a commitment to increase the per annum funding for specialist intellectual health services to $17 million by 2022.

Take action now:

  • Phone Minister Hazzard on 02 8574 6000

  • Email Minister Hazzard at This email address is being protected from spambots. You need JavaScript enabled to view it..


"I have an intellectually disabled brother who is often misdiagnosed due to his disability. He was recently in hospital for herniated discs in his back and the only pain relief they wanted to give him was Nurofen. The doctor asked how do I know he is in pain. I said the fact he is crying is a good indicator!"


More ways you can help

Sign our petition and ask your friends and family to sign.

• Put up posters in your area to raise awareness: download our poster now (841KB).

• Can you meet with your local MP? Here are some tools to help you: a How to Lobby your MP guide and a Briefing Paper for MPs.

• Contact our Advocacy team at This email address is being protected from spambots. You need JavaScript enabled to view it. and let us know you would like to help on our Deadly Disability Discrimination campaign.

• Share our campaign on: Facebook, Twitter and Linkedin or your preferred social media.

• Follow us on Facebook, Twitter and Instagram.

Sign up to our email updates


"When my late beautiful sister, Debbie, had a fall and fractured her vertebra the medical staff put her inability to stand down to her having Down Syndrome and being stubborn. It took 5 weeks for them to get a specialist to see her and a simple CT scan to show that her spinal cord was compressed and she was unable to stand."


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