Building relationships to ensure quality care
QUESTION:
When accessing NDIS funding, how can clients arrange case management support for their child? Our child is 21 and is on the Autism spectrum. He is answering the assessment questions saying he has capacity in areas that we know he doesn’t. He is an adult and we don’t seem to have a say.
ANSWER:
It is incredibly difficult to navigate systems for your child when they are an adult, and equally require support due to disability or illness.
On one side, as an adult, your son is entitled to confidentiality from his workers. His welfare will be their priority and while they may not be able to talk to you about all the matters relating to your son, it is about trying to find a way to work together and build relationships for the wellbeing of your son.
The panel recommends that you talk to the case workers about your concerns and how you may be able to support your son’s wellbeing. It is also important that you as a parent continue to be the advocate for your child’s best interests. You may wish to seek your own counselling supports to talk out ways of approaching difficult discussions with your son. Externalising the conversation to be one about how the funding works, rather than his capacity, may be a way forward. An example may be how listing a particular part of his disability in an open and transparent way can provide the right funding for support needed, minimising can result in reduced funding.
The NDIS would require independent assessment by your son’s doctors, specialists and support workers, as funding is not based solely on self-reporting ability or disability. Being part of these conversations, where possible, may support your son’s wellbeing also. Your son could possibly get help from Autism SA (autismsa.org.au) or from Headspace (with a referral from a doctor). Headspace is a free and confidential service where young people aged between 12 and 25 can access qualified youth mental health professionals, visit headspace.org.au for more information.
Getting some support for yourselves from Carers SA (carers-sa.asn.au or phone 1800 242 636) may also be helpful, especially around your son’s transition from youth to adulthood. Remember too that all young adults need to make some mistakes, as mistakes help provide a frame of reference for future learning, and this is an important part of moving to adulthood.
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