Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House
Canberra ACT 2600
Attention: Joint Standing Committee on the National Disability Insurance Scheme
Autism Awareness Australia welcomes the opportunity to prepare a submission for the NDIS regarding their proposed Independent Assessments.
Founded in 2007, Autism Awareness Australia (AAA) is a not-for-profit autism education and awareness organisation. Our goal is simple: To improve the lives of all Australians on the autism spectrum and the families who love them.
As one of the country’s leading voices for autism families, Autism Awareness Australia aims to spark positive change by increasing education and understanding of autism in Australia.
Autism Awareness’s campaigns and events have reached millions of Australians. We have delivered the majority of the programs free of charge across the country, including in rural and regional communities.
Autism Awareness Australia has long been led by parents of children with autism. Our CEO has a child with autism, as does 75% of our Board and 50% of our staff. Many contributors and volunteers over the years have either had autism or were the parents of children with autism.
Whilst I am the CEO of Autism Awareness Australia, it should be noted my son was in the pilot for the Independent Assessments, so our family has first-hand experience with the process.
In addition to this personal experience, AAA distributed a survey to our +130k community to seek their comments and inputs. This submission incorporates their feedback.
RESPONSES TO TERMS OF REFERENCE:
1. Independent Assessors not considered truly ‘Independent’
‘Independent Assessors’ are not seen as truly independent as they are funded by the NDIS. This inherent design flaw sets a relationship imbalance that will work against the collaborative planning which is required to determine what supports people with disabilities need.
2. A one-off visit with a stranger is inappropriate to determine needs
It would be clinically impossible for the Independent Assessors to determine the needs of people with autism (and other disabilities and comorbidities) during a one-off visit. The Assessor has no history with the individual and their family/carers and the blunt tool of a ‘one size fits all’ assessment will not be adequate to determine the needs and appropriate supports.
“This would not work at all for autistic people who often require many visits to develop rapport with practitioners such that they may accurately assess them.”
The location and timing of the assessment might also be critical for individuals with autism, so capturing this assessment in one visit will not result in a true assessment. Understanding the complexity and context for each participant is critical.
“An independent assessor who does not know the participant has no idea whether the participant’s responses are a true reflection of what they are able to do. Also, this can still result in inconsistent planning decisions because the assessor does not know anything about the participant.”
“No one assessment captures my son’s disability.”
3. Qualifications of Assessor may not be appropriate
Depending on the disability being assessed, will depend on what type of clinical input is required during the assessment. It would be inappropriate, for example, for a Physiotherapist to be involved in the assessment of someone with autism. Clinical qualifications, skills and experience are critical to determining needs and appropriate supports.
“I don’t think that the assessors will have sufficient skills to assess the needs of people with multiple disabilities especially mental health issues.”
4. Disregard for Clinical and historical expertise of Professionals already working with
participants
It is alarming that the NDIS would favour the results of a one-off assessment, over the clinical reporting and assessments of the Professionals who have a history and understanding of the individual’s needs, supports and goals. The disregard for this experience and professional input will reduce the quality of information required to determine what individual participants need in their plans.
5. Lack of consultation with the broader disability community
It is disconcerting that the NDIS has had such little consultation with the disability community as they designed and rolled out this I.A. process. Leading disability organisations have been universal in their messaging that this process will not be appropriate for many participants and their families nor adequately deliver the outcomes which are the key underpinnings of the scheme. The fact the I.A. tender winners were announced just three days after the public consultation process finished, leads us to be quite cynical about the NDIS’s intention to truly take on that feedback. It looks like lip service was paid to the community.
6. Mental Health of individuals through the assessment process
It seems that the rollout of the Independent Assessment process does not consider the mental health of the participants undergoing the assessment from a stranger. The assessment asks individuals to ‘rate their disability’ on various scales. It is deficit-based and subjective, not to mention it doesn’t take into consideration participants ability to answer questions about their disability in the context of the challenges it presents.
“Overall it’s detrimental to the health and wellbeing of people to be placed under this type of duress.”
7. Flawed appeals process
It is of great concern that participants will not be able to appeal or refute any of the outcomes of the one-off assessment. If the participant (and/or their family member where appropriate) felt that the assessment was flawed in any way, there is no avenue for appeal. Again, this will result in high levels of stress during the assessment for the participants and their families and sets up a power imbalance during the one-off assessment.
8. Little consideration for people CALD, Indigenous and rural and regional communities
Given this assessment is a one-off appointment, it is critical that the information shared encompasses all of the issues the participant and their families are managing. This could be very challenging for families with CALD and Indigenous backgrounds and would require assessors with additional skills sets and experience and certainly more input from all stakeholders involved in the participant’s life.
“Not appropriate… where are the cultural concerns taken into account? How challenging is it already for those with rural or diverse backgrounds? Is this done by an assessor who is understanding and open to their unique challenges?”
Autism Awareness Australia strongly urges the NDIS and the Australian Federal Government to halt the roll-out of the Independent Assessment program, consult with the disability community and roll out a more appropriate, equitable and humane process for Australian’s with disabilities.
Kind Regards
Nicole Rogerson CEO Autism Awareness Australia