Tanisha has a very rare genetic disorder which has left her with intellectual and physical disability. As part of her disabilities, she has Dysphagia, meaning she struggles to swallow her food and is at risk of choking every time she eats a meal. 

Tanisha’s Mum, Bronwyn was relieved when the NDIS plan initially allowed for a speech therapist and an occupational therapist to come regularly to help with Tanisha’s swallowing. As a result, her swallowing muscles were strengthening and her technique for swallowing without choking was improving.

When Tanisha received her second NDIS plan in September, the swallowing therapies had been removed. As a result Tanisha has started choking again. Without her regular therapy, Tanisha’s swallowing muscles have weakened and she has a significantly greater risk of choking.

Tanisha needs 24/7 care to ensure she doesn’t choke.

Tanisha and her family were not consulted before the swallowing therapies were removed. They are now seeking a review of this decision but that may take many months which will put Tanisha at even greater risk. Read a Guardian Australia report about Tanisha and our campaign.

If you would like to take action to help Tanisha and others like her, check out our campaign actions.

Ellen is in a similar situation to Tanisha. Watch a video about Ellen.   


The issue

There is a dangerous gap in funding for swallowing therapy.

The NDIS has the funds for the specialist swallowing therapy that Tanisha needs. In Tanisha’s case they were funding these therapies up until September when the NDIS said the health system should fund swallowing therapy. The problem is that the health system does not have the specialised skills nor does it have the funds – all the NSW disability funding went to the NDIS.

The NDIS has got it wrong and this is dangerous for people with disability.

The impact 

Many people find it hard to swallow as a result of their disability. This makes it difficult for them to get adequate nutrition and puts them at risk of pneumonia, choking and even death. If a person cannot safely eat a meal, then their whole life is disrupted. Tanisha currently requires 24/7 support to ensure she is safe from choking.

The solution 

Assessment of a swallowing problem and developing an eating and drinking plan is a team effort with input often required from a range of professionals. This and the ongoing swallowing therapies must be funded by the NDIS. It is disability support.

We are asking Australian Families and Social Services Minister Paul Fletcher to please resolve this problem and confirm that the NDIS will fully fund vital swallowing therapy.


How you can help

Contact your Federal MP: 

1. Find the contact details for your Federal MP.

3. Contact (via phone or email) your Federal MP. Here are some suggestions about what to say and what to request.

 

More ways you can help

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

  • Phone or email the Minister responsible for the NDIS, Minister Paul Fletcher. Tel: 02 6277 7560; email This email address is being protected from spambots. You need JavaScript enabled to view it.Here are some suggestions about what to say and what to request.

  • Distribute flyers: to order flyers, email us at This email address is being protected from spambots. You need JavaScript enabled to view it..

  • Put up posters: download our poster now.

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

  • Watch Ellen’s story as well and read about Ellen’s story in the Sydney Morning Herald.

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

Ellen's story

Take action for Ellen, Tanisha and others at risk of choking.


Update: Have you or someone you know lost vital swallowing supports?

CID is in discussion with the Government about addressing individual cases until this issue is positively resolved.

Here are our recommendations on what you can do.


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