28th May 2024
Submission to: The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 To the Committee and Senators considering changes to the current Legislation, The National Disability Insurance Scheme Act 2013.
Dear Committee and Senators Along with many others I have a very personal interest and was involved in the formation of the NDIS and its legislation prior to it becoming reality. My oldest son, who has complex disabilities is now 51 years old and had a medical prognosis that he would not live past his teens. My wife and I, his aging parents, and he, depend on the NDIS to provide him with effective supports for his very existence. Our son has very complex needs, he is non- t verbal and has apraxia, severe epilepsy, poor cognition and relies on others for all his activities of daily living and for support to access his community. He has had an amazing journey, both prior to and after the NDIS became a reality. Segregated initially with others with profound disabilities at age 13 he was able to attend his local state school and with the full support of the education department, continued to year 12 where he completed his VCE over four years. It was at this point he indicated he never again, wanted to be placed with others with disabilities, but wished to have the same opportunities as others. Whilst he is non-verbal, he communicates and writes with support, having had three poetry books published to date. With my support, he spoke about his needs to the Productivity Commission prior to their report on the NDIS coming out. Poetry is one of his passions and he expressed what the Productivity Commission and the introduction of the NDIS meant to him in the following poem.
NDIS National Disability Insurance Scheme Started by Julia Shared bipartisan support Government agreeing For once
Attending the review Input Listened to Respected Warm Productivity Commission
Our son was one of the early participants in the NDIS which has dramatically changed his life for the better. He currently lives with the full support of the NDIS in his own home in a rural area of South Gippsland in Victoria. Many of the proposed changes to the legislation, however, are counter to the very existence and purpose of the NDIS and will place our son’s, and many other people with disabilities, well-being and lives at risk. Following are some of the points that concern me. I hope my responses and reasons are considered by the committee and the senate so that the changes in their current form do not go ahead. Division 2—Preparing participants’ plans Concerns with the Note in red following here
Subsequent plans Note: The CEO may suspend the preparation of a new framework plan if information or reports requested for the purposes of the undertaking of an assessment under section 32L are not received (see subparagraph 36(3)(b)(i)). Reports and information take time and are complex and expensive when working with some people with disabilities. This is a cost that is often placed back onto the participant. To give the CEO the power to suspend a person’s plan without providing them full support to acquire these reports will place many people at risk. The legislation should ensure that people with disabilities are not disadvantaged by its very process. Under proposed changes to 32 L there is no requirement for the CEO to consider what is already on the participants file. All information on a participants file must be open and considered fully to ensure participants are NOT disadvantaged. This must be addressed fairly in the legislation. Any information the participant wishes to submit should be allowed and discussed fully with the participant. The Productivity Commissions report on the NDIS identified the mix of Government departments that provide supports for individuals. These include but are not restricted to housing, health and education. These other supports should be taken into consideration when determining NDIS funding. To consider the responsibility of other areas of support outside the NDIS is an essential exercise. It establishes a basis for what is the responsibility of the NDIS and what is the responsibility of other agencies and the states. In the report, levels of funding responsibility were shown as tiers 1, 2 and 3. o Tier 1 is for everybody and provides a lifeline for all Australians, should they become e disabled in their lifetime. (Page 158 Productivity Commissions report) o Tier 2 is for people with or effected by a disability. (Page 159 Productivity Commissions report) o Tier 3 is to provide access to funded individualised supports. (Page 159 Productivity Commissions report) Some sections of Tiers 1 and 2 were to be shared between the States and the NDIS. Early intervention, Housing, Education and Health specifically. Regrettably this has not occurred, with the states now appearing to leave all things disability to the NDIA.
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This is where some of the blow outs in NDIS costs are coming from. With the states reneging or not understanding their responsibilities, many of the costs have been pushed onto the NDIS. Professor Bonyhady who was one of the lead people in the implementation of the NDIS, while co-chairing a new independent review of the scheme, said the desert of support was taking an enormous human toll on the individuals and their families and putting the NDIS under further financial strain.
In an exclusive interview part of its We need to talk about the NDIS series,
Professor Bonyhady said the absence of a proper second tier was making people
"unnecessarily" more disabled, which increased the likelihood of them needing
to join the scheme in the future. “We’ve effectively got an insurance principle that’s operating for the 550,000 who’ve got the NDIS, and we’ve got a complete failure to invest in support for people who are not eligible for the NDIS, with the consequence being that they’ll become more costly to the NDIS in the future,” he said.
"It is just poor public policy."
The Productivity Commission identified there should be better interaction between various government departments to ensure more effective outcomes for people with disabilities. This rarely occurs. This needs to be built into the NDIS legislation and ALL OTHER Government Legislation. Meaningful discussions need to be held between the Federal and State bodies to ensure NDIS costs are reduced and people with disabilities are fully supported. The following would ensure Australia becomes a true and effective leader in supporting our disabled citizens as outlined in the charter of United Nations Convention on the Rights of Persons with Disabilities. All other aspects of the United Nations charter on the Rights of Persons with Disabilities must also be considered and included in the legislation. Housing is one example where the Housing Commission could ensure all community housing includes a mix of general and disability housing. With around 15 - 20% of the population identifying as disabled, this proportion could be part of all future builds. This would avoid the need to discuss options of group homes for people with disabilities, which by their very nature result in segregation and exclusion of our disabled citizens. The cost and viability of the NDIS Some of the proposed legislation changes are to address the cost and future viability of the NDIS. It has been my experience that current excessive costs of the NDIS, comes from overdue diligence from the agency, not engaging and listening carefully to participants, and from employing expensive lawyers and a multitude of bureaucrats to avoid providing reasonable and necessary supports to ensure participants are safe and not placed at risk. The Productivity Commission, in its report prior to the NDIS becoming reality, identified that to not provide necessary supports to people with disabilities, costs would be greater in future.
In the 2011 Productivity Commissions Enquiry Report Section 20.2 Evidence suggests that
the potential economic gains from the NDIS are large, outlines the deficiencies that the NDIS will fix for people with disabilities and society as whole. These include:
- Low economic participation.
- Inefficiency
- Intangible impacts The proposed changes to the legislation will have the effect of moving the country back to these three deficiency areas. By moving back to pre NDIS times this will impact my son and others directly. The country will also be impacted, with costs blowing out with no productive outcomes for people with disabilities and their families. Other areas where cost savings could be considered include:
- Stopping some allied health and providers who are overcharging participants.
- Allowing providers to claim costs without due process. In some cases, without participants knowledge or permission.
- High cost of equipment from some suppliers when suitable products could be purchased at a much lesser cost.
- Supporting Australian companies to manufacture disability aids, currently sourced from overseas at high cost.
- Stopping price gouging from unscrupulous providers.
- Allowing anyone to become an independent support worker who then proceed to claim the full NDIS price rate. There are many other factors I could comment on in this paper, but time is against me as I need to keep concentrating on my sons current needs. The current changes to the Legislation should not proceed and should be withdrawn. Proper consultation and co-design must occur with the disabled community and their allies with an interest in better and more effective outcomes. Thank you 4