In recent weeks we often reported about some of the challenges the healthcare sector is expecting for the roll-out of the National Disability Insurance Scheme (NDIS). Natasha Mitchell, Presenter at ABC Radio National’s program Life Matters recently spoke to two mothers and first participants in the NDIS. Their experience has been overwhelmingly positive and we thought we summarise some of their valuable insights and share them with the healthcare sector.
Vanessa McCallum, one of the first participants in an NDIS trial:
I have a six year old daughter Taylor who has a genetic abnormality which manifested in her having delays in all areas. She can’t walk or talk and needs help in these areas, but she can sign. Before the NDIS we had limited amount of respite. We had access to 16 hours per month which we saved to use over the school holidays. With a dual diagnosis of autism we also had access to two years of speech and occupational therapy.
What has changed?
When Taylor went into the NDIS, rather than having 16 hours per month to cope with she now has carers that cater to her needs. She has carers every morning to help get her ready for school and attend to her personal needs. On the weekend she has carers both on Saturdays and Sundays to help her enter into the community. She goes to the local swimming centre, she is going to the shops, she is having an absolute ball and she is thriving. And as a result of that we are thriving too. Instead of the 2 year window of opportunity for therapy, she now has the opportunity to receive therapy all her life until she is 65. She gets occupational, speech and physio therapy.
The NDIS also helped solve some practical issues. Taylor is fully incontinent and nappies were starting to take a financial toll on the family. Before the NDIS the family received a one off $500 allowance for incontinence issues for a child who is over 5 years old. Now we receive a much more realistic budget to help us with her continence. Another huge thing is that we now have is home to help us get Taylor to the goal of not being permanently incontinent. We are working to get her to the goal of being as independent as possible.
What hasn’t worked?
In the beginning it was a little bit hard to find the right service providers. The plan has been very good. However, it is a launch site and it is new to the community. The service providers have to themselves understand the process. My daughter’s carers are excellent. However, it would be wonderful if there was more flexibility so that different respite places have different capabilities. We have had to jump between a few to make it work. The biggest issue we had so far is the service providers keeping up with the NDIS.
The full interview also contains insights from Rebecca Casson, Executive Director, Committee for Geelong and Elly Stewart, who works in disability accommodation and has a son with autism and intellectual disability and a daughter with Asperger’s Syndrome. You can listen to the full interview on the ABC website.