Submission to the Joint Standing Committee on the National Disability Insurance Scheme regarding Independent Assessments

Committee Secretariat Joint Standing Committee on the NationaL Disabilitv Insuranee Schemev PO Box 6100 Parliament House Canberra ACT 2600

I am the mother of a 4-year-old autistic girl who is currently a participant in the NDIS. I am concerned with the federal government’s unilateral decision to impose independent assessments on current and future NDIS participants to assess their eligibility for the scheme.

The NDIS is not perfect; it can be frustrating and slow and it can feel like roadblocks are thrown at you along the way. I fully support the concept that every Australian who needs it should be able to get the proper support they need out of the scheme regardless of their socioeconomic status and agree that access should not rely on how many reports you can produce. But one model for all assessment is not the way to do this. Why can’t there be a Medicare code for speech therapy, occupational therapy etc., to be used specifically when a patient is being assessed for a diagnosis that will lead to them being eligible for the NDIS?

The NDIS was designed to be a personalised scheme that allowed participants and/or carers to choose the supports that best worked for them. I self-manage my daughter’s plan and we work with therapists she has a great rapport with and who have witnessed the improvements she has made in her speech and social skills.

I do not think it is appropriate for my daughters’ access to the NDIS to be determined by a short assessment by people who have never met her and have no knowledge of her complex needs. The historical underdiagnosis of autism in girls means the public is only just starting to realise that not only can girls be autistic but that they also present very differently to the stereotypes the community has about autism. ‘You wouldn’t know she’s autistic’ or ‘you can’t tell’ is a common response when I reveal my daughter’s diagnosis (even from parents of autistic boys). Because autistic girls are so much better at ’masking than boys, people generally don’t see the hidden difficulties they have. With my daughter all people see is a high energy friendly child. They do not see the arm biting, kicking screaming meltdowns that can last for hours and the exhaustion felt by everyone when she finally falls asleep at 11 o’clock at night. Just because her needs are not as visible as many other autistic children, it does not mean that she’ll be fine.

My main concern is that a short assessment with a stranger does not give my daughter the opportunity to be properly assessed for her unique set of needs. According to an email I received from the NDIA, an independent assessor would use a suite of standardised assessment tools to assess my daughter.

This is not always an appropriate form of evaluation. My daughter is an own agenda’ child and doesn’t like to be led into doing anything. When she had her last formal speech assessment her therapist was unable to use the standard assessment tools as she was unwilling to cooperate. This meant that she based her assessment on her own observations of my daughter across regular appointments along with information given to her by myself. If she is in a good mood she might happily follow the lead of her therapist during her 30 minute appointment and mostly do what is required. However generally this is not the case.

• My question is, if my daughter decides to cooperate on her assessment day, therefore potentially masking from a stranger how serious her needs are, how can you guarantee that she will receive the funding she actually needs? Or if the opposite occurs and she will not cooperate, what sort of report will be made? Also, will this independent assessor be experienced in dealing with autism or paediatric patients?

• We are told that qualified therapists will be undertaking these assessments. Do they realise the unintended consequence of taking so many professionals out of the system? When my daughter was being assessed we started the process in October 2018 and didn’t have a diagnosis until February 2019 due to the high demand for therapists. Trying to find a paediatric occupational therapist was extremely difficult and I had to join waitlists. If suddenly a huge number of therapists are working full time only doing assessments, it makes the demand for regular therapy even higher and those who need it will miss out.

• How can these assessments possibly be ‘independent’ when the government is paying these organisations to undertake the assessments? Also, since the state governments contribute to NDIS funding, has the federal government sought their input at all?

• Regarding the Independent Assessment Pilot, I was sent an invitation for my daughter to participate. Can I just say how disappointing it was that the link that was given to indicate you did not wish to participate did not work and instead took you to a page to register your details to be contacted for your assessment. I will be generous and assume that this was a mistake, but I am sure there were many vulnerable people who filled out that information and then felt quite pressured to comply when they were contacted to set up their assessment.

• I really hope that the government reconsiders the introduction of independent assessments and finds a different way to make the NDIS serve the needs of all the community in a better way. I would ask Minister Robert and other decision makers this question – if you had a loved one who required the NDIS, would you entrust them to a stranger when they are at their most vulnerable or to a trusted medical professional who already understands their needs?