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.
Campaign update December 2018
Thanks to campaigning by our supporters and media coverage in The Guardian Australia, the NDIS decided to reinstate Tanisha’s swallowing therapies.
This is fantastic news.
However, there is much more work to do. Many more people, including Ellen, have not had their swallowing therapies reinstated – this needs to happen urgently. And we need to ensure interim funding for swallowing therapies becomes permanent.
If you would like to take action to help secure NDIS funding for swallowing therapies for the many people like Tanisha and Ellen who remain at risk of choking, check out our campaign actions.
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.
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.
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.
3. Contact (via phone or email) your Federal MP. Here are some suggestions about what to say and what to request.
CID is in discussion with the Government about addressing individual cases until this issue is positively resolved.
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