NDIA Accountability Project

Complex NDIS plans for children with multiple disabilities and acquired spinal cord injury

‹ PrevPage 1 of 5 · Source p. 1Next ›

SUBMISSION TO THE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (GETTING THE NDIS BACK ON TRACK NO. 1) BILL 2024

ALISON BARBER NDIS PARTICIPANT Email: Phone: DATE: 17/5/2024

PERSONAL STORY

My name is Alison Barber. I am a 59 year old mother of 3 young adult children and have recently celebrated my 36th wedding anniversary with my husband, . I have a 27 year old daughter, who lives and works permanently in London, a 25 year old son who is still living at home part time, and a 21 year old son who lives with us permanently. Both of my sons live with multiple medical complexities and disabilities which, between them, has resulted in approximately 30 brain surgeries, living with acquired brain injury, both having gastronomies and being tube fed for the majority of their lives, in addition to being on different levels of the autistic spectrum. They each have their own complex NDIS plans.

In addition to my life experience of having been a carer for the past 25 years, I personally acquired a C2 incomplete spinal cord injury in late 2019. I am now a permanent power wheelchair user, navigating life as a C2 incomplete tetraplegic. I believe the combination of my somewhat unique life experiences enables me to be able to represent multiple viewpoints with relation to the NDIS, and I pride myself in attempting to be the best advocate for those with both visible and invisible disabilities that I can be. As such, I am a convenor of one of the Queenslanders with Disability Network Peer Support Groups, State Carer Representative for Carer’s Queensland, a member of the Queensland Spinal Cord Injury Services Codesign Project, and am actively involved in numerous other advocacy projects.

I would like to thank you for the opportunity to present my personal submission regarding concerns I have around the proposed National Disability Insurance Scheme (Getting the Bill Back on Track No. 1) Bill 2024, and the reasons that I believe we need to Block this Bill.

As a self managed participant looking after my own complex NDIS plan, in addition to undertaking the role of nominee for my two sons’ complex NDIS plans, I feel that I am well experienced to present an informed, multifaceted viewpoint in relation to the impact of the various changes proposed in the Bill, in its current format.

PERSONAL CONCERNS-

Presently, I am finding myself experiencing a large degree of anxiety over changes that could result if the proposed Bill is passed in its current format. Whilst I totally understand the need for budgetary restraints, this is also meant to be an insurance scheme for those of us who live with disabilities. We are human beings, not numbers, and this proposed Bill appears to be a negative step for those of us who utilise the current scheme which provides us with the same choice and control as any other Australian. According to the Australian Institute of Health and Welfare, 4.4 Million people, 18% of Australians, lived with disability as of 2018.Whilst I acknowledge that many of these may not be eligible for NDIS supports, we all vote and all feel the need for the protection to be there, should we require NDIS supports in the future.

Firstly, how can we be asked to support legislation which makes regular reference to RULES which, as yet, have not even been written. In addition to this, the legislation gives the power for some of the decisions made, as a result of these rules, to not be subject to appeal or review in any way (eg Needs Assessments).

Access Requirements and Needs Assessments

The Bill grants the Government, via the Agency, extraordinary new powers to remove participants from the scheme at any time.

Under proposed clause 32L of the Bill, Assessment of Participant’s Needs for Supports, it clearly states that the “CEO is to arrange assessment of participant’s need for supports”. Concerningly, it goes on, in subclause 7, to give the power for the CEO to arrange for “replacement assessments” to be undertaken if they are not satisfied with the original report, which is then automatically upheld (32L(7)(e) and (f)). It appears that people with disability are not being afforded this same right of review. There is no provision being inserted for the participant to request a replacement assessment, nor have these “needs assessments” been inserted into the National Disability Insurance Act 2013 under Part 6 Clause 99 “Reviewable Decisions”.

If the participant does not provide or undertake the assessment, the Agency has the power to revoke their participation in the scheme. The costs of these assessments can be thousands of dollars, and the result is that you might be removed from, or denied access to, the scheme. If it is approved, the funding in the plan for a participant’s reasonable and necessary support needs is completely determined by the information contained within this “Needs Assessment”.

My concerns are that this sounds extremely similar to the Liberal Government’s previously proposed “Independent Assessments” which were blocked at the time, following a national uprising of objection to the proposal. An independent assessor, who is previously unknown to a participant, is only able to make an assessment based on a one day snapshot in time.

For this reason,

  • It is imperative that any functional capacity report or needs assessment be conducted by an experienced allied health professional who has, via a thorough relationship with a participant, gained knowledge and understanding of their disability, and how their impairments interact with their environment over time.

  • A budget based around the report of an independent assessor therefore risks designing a substantially inadequate budget and inappropriate level of support, putting people with disability at risk of harm.

  • Having the proposed legislation providing for no avenue for a person with a disability to seek review of the new proposed needs assessments is extremely perplexing, as it provides those of us living with disabilities absolutely no right to appeal insufficient supports. Cutting costs at the expense of services and people is not the answer.

APTOS/State Responsibilities Not Yet Agreed

Changes in the Bill allow for further legislative changes, creating new NDIS Rules and Ministerial determinations, that would not need to be passed by Parliament. These are in relation to such significant issues as the assessment tools and requirements, and included information that has not yet been established, (32L(8)), These new rules will enable the “Government of the Day” to more easily prevent access to the NDIS and to remove people from the NDIS who are currently eligible for support under the scheme. Alarmingly, this will occur in an environment where the States have ceased previously existing support schemes, putting participants at risk of losing supports altogether. This is extremely concerning, and demonstrates another reason that the current Bill must not be passed, as it would place Australians living with a disability at risk of harm. Bilateral Agreements regarding foundational supports must be in place, and established, across individual states before these supports can be removed from the scheme.

In my view, this Bill needs to be blocked in its entirety until such time as more information is determined and agreed to, utilising a transparent co-design process that involves people living with a wide variety of disabilities, the States that are to provide the foundational supports, and that is not requiring non-disclosure clauses to be signed in order to participate.

There are too many unanswered questions proposed by this Bill. These include (but are not limited to):

The Definition Of NDIS Supports

The new definition says the NDIS will only fund eight categories of supports (subclause 10(a)(i)- (viii)). These appear to be based on selected elements in the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’). However, the definition completely omits other elements of the CRPD, potentially excluding some human rights based supports from NDIS funding. For example, the CRPD recognises the right to work and employment, however section 10 of the Bill does not appear to include supports that would specifically facilitate a participant’s economic participation. It is also concerning that the proposed categories are too restrictive, and have been drafted in a way that could have unintended legal consequences - For example, the language found in Article 12 of the CRPD on equal recognition before the law, and Article 19 about choosing who someone lives with or where they live, doesn’t feature in subclause 10 of the Bill. This is extremely concerning in combination with my next point, and raises considerable uncertainty regarding ongoing provision of the current SDA scheme.

Proposed Funding for 1:3 Supports Only

At the DSC Conference held on the 26 and 27 March 2024, Minister Bill Shorten specifically said that, moving forward, SIL Supports will be provided on a 1:3 ratio. He also spoke about this not meaning that people would have to live in homes with 3 participants, but rather that participants might have to be creative with how they utilise their funding. Examples were given, such as apartment complexes with shared OOA, or grouping of villas and townhouses that shared supports. In reality, this would be in direct contradiction of Article 19 of the CRPD which clearly states that people with disability should have the right to choose who they live with and where they live.

For this Bill to “pick and choose” which of the Human Rights Articles under the CRPD that people with a disability are entitled to, and which they are to be denied, is yet another example of why this Bill must not be passed in parliament in its current form. Personally, as a high level incomplete spinal cord injury participant, I currently live with my husband of 36 years and two adult sons, who also live with disability. I require one on one supports for all activities of daily living. Is it proposed that I would be required to move into a shared living arrangement with two other participants in order to “share” 1:3 supports? If this is not the intention, then how am I to be expected to continue to live in my own home with my family, with only one third of my current support requirements? My family is unable to provide informal supports moving forward, at all, due to my husband’s own health complexities (facing open heart surgery for a triple bypass in the immediate future) and my sons’ own special needs. HOW IS THIS SUPPOSED TO WORK, particularly as supports to uphold my rights under Article 19 of the CRPD have been completely omitted from the definition of NDIS Supports?

Ability to Change Method of Plan Management

It is proposed that the NDIA will have powers to change the plan management type (for example, change Self-Management to Plan - or Agency - managed); if “the CEO is satisfied that section 46 (acquittal of NDIS amounts) would be unlikely to be complied with if the participant were to manage the funding for supports under the plan to a particular extent”. This is a very ambiguous power, which has the potential to significantly reduce a participant’s choice and control, vastly limiting their ability to be “creative with how they utilise their funding” to meet their goals, as Minister Shorten would suggest.

In conclusion, I reiterate that I do not believe we have been provided with enough information to be able to pass this Bill in its current format, as too many sections of the Bill refer to rules and ministerial determinations, which, as yet, have not been decided on. The Bill also gives the power for ongoing changes to be made, by this or future governments, without requiring further parliamentary process, let alone the consultation and co-design that such changes should demand.

WE NEED TO DO EVERYTHING IN OUR POWER TO BLOCK THIS BILL FROM BEING PASSED IN PARLIAMENT IN ITS CURRENT FORMAT.

Kind Regards,

Alison Barber