SUBMISSION on Independent Assessments

29 March 2021

Dear Committee Members

I am a self-managed NDIS participant and am writing to express my grave concerns about the NDIA’s proposed Independent Assessments. I have a complex neuro-immune disorder that causes a severe physical disability and a cognitive impairment.

Since I have been on the scheme, my life has drastically improved and I am no longer just surviving, but am now able to start living. This support is critical to my safety, independence and wellbeing. I feel so lucky to be in a country that values the lives of disabled people. I am very concerned that the proposed Independent Assessments will exclude people from the scheme and reduce critical supports for those already on the scheme.

My road to accessing the NDIS was extremely long and stressful. Despite my disability being confirmed as permanent and causing a substantial incapacity by every medical professional I saw (four GPs, two specialists, two occupational therapists and others), the NDIA continually rejected my application. I was finally granted access on the morning of my first AAT case conference, more than two years after my initial application.

This experience was traumatic. Trying to convince people with no experience of my disability to believe the people who did have experience and relevant qualifications was very difficult. I am concerned that going through the Independent Assessments will result in the same issues – having to justify and explain my disability to allied health practitioners with no training or experience of my disability.

I understand that the Independent Assessments involve a questionnaire conducted by an allied health professional. Information regarding the nature of these questionnaires has not been provided to participants, so it is difficult to know whether they are even appropriate. I have asked my Local Area Coordinator for information regarding the Independent Assessments and she has told me she does not know what is happening and referred me to the very sparse information on the NDIA website.

There are many situations where questionnaires will give completely incongruous outcomes. Many capacity questions may be difficult to answer. For example, if an assessor asked me if I could walk 50 metres. The answer is ‘yes’. But the answer is also: ‘if I do that, I won’t be able to shower or heat food or do my physio stretches that day. And I won’t be able to walk 50 metres for the rest of the week’. The experience of living with a disability does not fit neatly into absolute categories. It is my understanding that once these Independent Assessments have been conducted, the reports are not automatically provided to

• participants. This is concerning and does not offer transparency to participants about how and why decisions are being made about their futures.

If the purpose of the Independent Assessments is to ensure that access is available to everyone, regardless of finances and education, then surely the best way to achieve this would be for the NDIA to fund the reports for applicants to the scheme by their chosen professionals. This way, the applicants can be sure that the person providing the report knows their history, capacity and is qualified to judge their disability. This also means applicants do not have to subject themselves to the demeaning process of being questioned about their limitations by an unqualified stranger, who is not accountable to them for their assessment.

If the NDIS is trying to increase efficiency or eliminate the possibility of fraudulent participants, I would suggest that Independent Assessments are the wrong approach. If someone wanted to fraudulently obtain access to the scheme, it would be much easier to fool an allied health professional who does not know them or have experience of their disability than it would be to fool medical practitioners qualified in their disability, who are subject to strict ethical and professional guidelines.

I am gravely concerned about how the Independent Assessments will be conducted for people with intellectual disabilities, neuro-divergence and cognitive impairments. All of these people have impaired capacity to answer the questionnaire accurately for the purpose of determining support. Everyone has a tendency to put a positive spin on their struggles and this is a particular risk for people in this category, including myself. By underplaying our limitations or attempting to be optimistic out of ingrained pride and politeness, we may be unknowingly signing away our critical supports. This is why experts who know and understand us and our disabilities need to provide the reports.

By paying companies of allied health professionals to complete these assessments, the NDIA is setting up an incentive for these professionals to reduce access to the scheme and existing supports for participants. If these companies continually ‘save money’ for the NDIA they will continue to be contracted and more people will miss out.

This will leave disabled Australians like me without the support the scheme is designed to provide and return us to mere survival and struggle.