NDIA Accountability Project

Experiences with NDIS supports and coordination following polio diagnosis

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Submission in response to the Inquiry into General issues around

the implementation and performance of the NDIS

Joint Standing Committee on the NDIS

Introduction

Thank you for the opportunity to respond to your inquiry into general issues around the implementation and performance of the National Disability Insurance Scheme (NDIS).

I survived polio in my infancy (1954), and this resulted in a life-long disability with paralysis and quadraparetic weakness. Given my age - now 70 years, I am fortunate to be a self-managed NDIS participant, having been eligible before my 65th birthday to be accepted onto the Scheme. I am so grateful for this support, the benefits of which have been significant and lifechanging.

I provide this submission in order to share my experience and express some concerns about the implementation of, and for the future NDIS performance. I am making commentary on four issues where I have personally been involved/affected.

1.  Support Coordinators value and effective self-managed participation
2.  Choice and control engaging unregistered service providers and supports
3.  Older Australians with disability not included in the NDIS
4.  The benefits of self-managed participation

The Value of Skilled Support Coordinators for Self-Managed Participants

Since coming onto the Scheme in 2018, most of my supports and equipment needs have been made possible, and my quality of life is much improved. As a self-managed participant, it is my experience that the support coordinator role was fundamental for me as a “bridge” between myself and the NDIS, especially when I did not understand how the NDIS worked. For this reason, a support coordinator should be included at the earliest possible part of a plan. How effective support coordination works for me is as follows:

  • assists with clarity for participant’s interface with NDIS
  • is an advocate for a participant (informally when dealing with service providers and at times with NDIS)
  • assists with plan reports and reviews to ensure adequate funding levels are sustained for supports
  • is required during plan utilisation (connect with services, advise on appropriate use of funds, coordination of supports etc)

Support coordination is only as good as the support coordinator’s skills, and funding may need to be flexible for times when support coordination is required or necessary and other times when it is not. I recommend that this important support role be sustained in future NDIA planning and the ongoing implementation of the Scheme.

The Positive Case for Self Managed Participants and Unregistered Supports

Self managed participants must retain the freedom to select the supports that best suit their individual needs. It has been my experience that these are mostly informally sourced and not necessarily NDIS registered.

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I have often found NDIS registered service providers to be inadequate, unreliable and of poor quality. To demonstrate these problems I can provide a history of my five years participation on the Scheme too long to include with this submission, however the following generally apply:

1.  NDIS registered support worker agencies work force – untrained, temporary, underpaid
2.  NDIS registered home modifications builders – unreliable, unsupervised poor work quality

On the other hand, unregistered support workers who I have been able to find informally through friends and work colleagues:

1.  Learn quickly and have a range of skills which match varying support needs of the participant
2.  Are adequately paid (without agency percentage)
3.  Proven work standard, supported by recommendation from other clients

Not all NDIS registered service providers are inadequate, for example, the physiotherapy and occupational therapists groups seem to be well-trained and satisfactory. However the important issue is that the participant must have choice and control for who and what they need for support, and as such, I recommend that self-managed participants maintain the option to source unregistered supports when appropriate for their personal and functional needs/goals. The importance of suitable supports is essential for quality of life, and the success of the Scheme.

Include Older Australians with a disability as NDIS Participants

The National Disability Insurance Scheme when established, deliberately excluded those Australians with disability over the age of sixty five years. The purpose of exluding this demographic was the unfounded idea that the Aged Care system in Australia would have the capacity to provide the services and care required.

However this is manifestly not the case.

It is a cruel fact that people who have endured many years with severe life-long disabilities come to a more difficult time in late life facing little or no support. Aged care packages are not created with disability in mind and are therefore inadequate. An elderly person with disability will require essential equipment and supports as their ageing condition degenerates, and this level of support has been denied them by the NDIA. Currently, many aged care programs are being cut from local government where they have been administered for many decades, leaving the frail clients to fend for themselves in the commercial service provider field. There is often no access to affordable specialised equipment at a time when an elder with disability may need these items more than ever. This leaves older people with disability in the precarious position of dependency on the goodwill of family or supported residential so called “care” environments.

The Benefits of Self Managed Participation on the NDIS

In this final section of my submission I would like to express how ideal it has been to be a self- managed participant. One of the key features of the NDIS has been for us participants to have choice and control over our supports. This has been fundamental to accessing appropriate supports to sustain our Plan goals and reach our potential as individuals with a purpose, and who have something to contribute to society more generally.

It is crucial that this is upheld and valued as one of the key recommendation of this Inquiry into General Issues Around The Implementation and Performance of the NDIS.