Subject: Incontinence in autistic Australians

Date: Thu, 14 Mar 2024 12:07:49 +1100

From: Bob Buckley (Co-convenor) <convenor@a4.org.au>

To: Continence@health.gov.au

CC:hannahhogarth@hma.com.au, Falkingham, Rebecca <Rebecca.Falkingham@ndis.gov.au>, The Hon. Mr. Shorten MP <Bill.Shorten.MP@aph.gov.au>, Amanda.Rishworth.MP@aph.gov.au

Hi

I see that you are  charged to

‘research incontinence in Australia and conduct an independent evaluation of Government funded continence initiatives.’

I  write this short note on the subject of incontinence, autism and the NDIS in relation to the issue. I was part of a group involved in "co-design" of an NDIS response on the issue of creating a panel of service providers for continence products for the NDIS. I have concerns about the whole issue. In my view, creating a provider panel does not address the central issue for autistic Australians.

Continence issues for most autistic children lie in the area of behaviour; some severely or profoundly autistic children are difficult to toilet train since the usual approaches are not effective for some autistic children.

I have been contacted by a number of parents of autistic children who have asked for behavioural support, especially evidence-based applied behaviour science, for toilet training autistic children as part of the NDIS Statement of Participant Supports (their NDIS Plan) and were denied those supports. Some of the requests were for toilet training as parts of an evidence-based or best practice early investment/intervention program and other were for discrete toilet training programs. In none of the rejections did the NDIS give credible reasons for refusing to fund the program.

In our view, toilet training is an essential part of early education. And effective early education is a child's right under both the UN Convention on the Rights of the Child, and for autistic children it is also a right under the CRPD.

The impact of the NDIS failing/refusing to fund essential toilet training is usually life-long. A4 is not aware of systemic alternatives to the NDIS for such supports. Incontinence severely limits a person's social and economic participation. It substantially increases their support costs throughout their life. It imposes a enormous burden on Informal Supports.

Support for toilet training for autistic children needs to be universal, automatic and unquestioned. Please do what you can to help.