National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 148

As an aging primary carer of a young adult with profound and multiple disabilities, I am concerned about the NDIS proposed changes to funding levels for “High Intensity” complex support needs and other matters.

Specifically, I am gravely concerned about the following. Namely,

• That should the increased rate not be available to pay service providers of people with complex and challenging behaviours, such as my the young person for whom I am Plan Nominee, that Service Providers will move to an unprecedented and unjust degree of cherry picking participant clients that are far more easy to provide services to and

• That as such, both participants and aging primary carers will suffer further physical and emotional strain resulting in participants being without: i) proven protective informal supports, and also ii) without equal opportunities to engage in social and economic activities compared to people without disability but also compared to their peers with disabilities who do not have complex behavioural needs.

3. Already, Service Providers, such as one nationally Registered Implementing Provider that I know of, is asking participants with Complex and Challenging Behaviours to pay for additional behavioural supports out of their Core Funding allocation and stating that they, (uncertified trainers), must charge participants for “specialised” support from Core funding. In my view this is a duplication of funds for behavioural supports as they claim these are non-face -to-face fees to support their staff to support someone with Complex and Challenging behaviours. They have, however, in writing, called their “specialist” training “generic” . This is in my view an oxymoron. Moreover, they should, as Formal Service Providers, ensure that their staff are competent and safe without passing that responsibility onto the participant or their Plan Nominee or their Informal Supports.

This is in direct conflict with the NDIS Code of Conduct and the UN Convention on the Rights of Persons with Disabilities right to have access to service providers who provide formal support that: i) do not cause harm and ii) who exhibit both competency and care . Furthermore, as this is a compulsory fee, a participant has no recourse but to further endanger their safety and the health and well-being of their informal supports. In my circumstances, where I had to look after the participant for 3 days and nights straight, I contracted a condition directly caused by this that was literally life threatening and had to be treated urgently.

4. Furthermore, the same organisation has just proposed to increase the level of fees for “experienced” Formal Supports, a level that they determine, but at the same time that have a pecuniary benefit from making as high as they so choose. This is a conflict of interest

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 148

5. Will the removal of High Intensity Behavioral Supports category mean that those participants will not have access to Complex Case managers? This is not clear in the legislation.

6. I note that the Bill does not allow provision to enable participants to receive a draft of their plan, despite repeated requests for this for a decade now. This means that should the NDIS Planner make a mistake and they often do, that the participant cannot remedy the issue for months or even sometimes, for 5 years or more. This is a failure of Natural Justice.

7. I note that in terms of Home Modifications and maintenance, as soon as a building company hears the term NDIS, they increase their charges exorbitantly. How are taxpayers protected from this price gouging? In an example I know, the cost of the reasonable and robust home modifications cost more than it would to rebuild the entire house twice over.

8. Furthermore where one has taken the NDIS to the AAT, and it has taken several years to complete the process, just one Home Modifications Support increased from 250,000 to 750,00

9. Lastly the NDIA persistently and in my view actively hide their funding calculations from participants, Support Coordinators and Plan Nominees. For example, either an advocate and a Support coordinator has had to chase a regional director and a complex case manager to give the breakdown of the funding provided. As you would be aware, the legislated time frames for the NDIA to respond to participants lodgement of complaints and avenues for remedy are

10. It seems that the lack of choice and control forced upon participants and their Informal Supports particularly in the area of support from Allied Health Professionals and Activities of Daily Living is regression into the previously inequitable Block Funding Model where the Government told persons with disability what they needed rather than the reverse backed by professional assessments. For example, in one case where the NDIA called for three independent assessments and the finding of those assessments not only substantiated the participant’s reasonable and necessary support needs but recommended higher supports, the NDIA failed to follow the advice of their own experts and locked them into untenable so-called “flexibility”. This is “flexibility” as lip-service and platitude rather than enabling any opportunity of a real and equitable life.

11. Lastly, where in the legislation are the options for participants to stay in their own homes when their aging informal supports can no longer perform arduous day to day care? Particularly when despite being disproportionately physically, economically and financially disadvantaged compared to other Australians who are not informal supports of participants and who often provide homes for participants become aging informal supports are widowed sole family members or incapacitated themselves?

Thank you for the opportunity to express my concerns.

Yours Faithfully