Submission to the inquiry on general issues around the implementation and performance of the NDIS
16 July 2020
Endorsed by
- Huntington’s NSW ACT
- Huntington’s QLD
- Huntington’s SA/NT
- Huntington’s TAS
- Huntington’s WA
Submitted by
Lewis Kaplan CEO Huntington’s NSW ACT
16 July 2020
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SUBMISSION
Our primary concern is that the needs of people with progressive neurological conditions such as Huntington’s disease are not well met by the NDIS, starting with the way the NDIS Act is worded.
Currently many people progressive neurological conditions complain that they cannot access suitable services or appropriately qualified staff. They cannot persuade their mainstream service providers and support coordinators to deliver services which meet their needs.
The NDIS Act is philosophically geared toward increasing community participation and registrants’ employability by “… investing in people early to build their capacity to help them pursue their goals and aspirations resulting in greater outcomes later in life”. 1
Selected Objects of the National Disability Insurance Scheme (NDIS) Act 20132 (our italics):
(c) support the independence and social and economic participation of people with disability; and
(f) facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability; and
(g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community;
However, people living with progressive neurological disease are losing their capacity to participate in the community, are becoming less employable, and are less and less independent.
Thus, there is an inherent built-in conflict between the NDIS Act and Principles and the needs of people living with progressive neurological disease.
Recommendation
We believe it would be right for the NDIS to ascertain what proportion of participants are living with disability caused by progressive neurological conditions. Once ascertained, an equivalent proportion of NDIS resources from planners right through service coordination and service provision, SIL and SDA etc. should be allocated to and specialised towards this cohort. It is only in this way that people with progressive neurological conditions will be provided with the quality and quantity of services they need, with reviews as required due to their inherent increasing levels of disability.
1 NDIS Operational Guidelines, Principles, Section 4.3 2 https://www.legislation.gov.au/Details/C2018C00276