End Deadly Discrimination campaign

"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?"

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

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!"

The Solution

We are calling on Health Minister Brad Hazzard to commit to taking real and urgent action to save the lives of people with intellectual disability. Read our open letter to The Hon. Brad Hazzard, Minister for Health NSW.

The NSW Government currently supports three small pilot intellectual disability health teams. The Government must expand the success of these programs to establish a statewide network of intellectual disability health teams.

Specialised teams can reduce the preventable death and suffering of people with intellectual disability: they can act as consultants to help doctors understand the health needs of people with intellectual disability, and they can drive change across the health system by acting as advocates for people with intellectual disability.

CID is seeking an immediate investment of $9.5 million in the 2018 NSW Government budget; this should increase to $17 million annually after four years.

"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!"

How 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 advocacy 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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