Challenges accessing spontaneous support and experiencing vulnerability within the NDIS

Submission No 141

INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES

Name: Name suppressed Date Received: 2 August 2018

Partially Confidential

To the Committee

I have been a participant of the NDIS since November 2017. I have a disability which has left me in a wheelchair. Prior to my disability I was a remote area GP, triathlete and an active member of my community. As such I came onto the NDIS with a unique perspective and insight. My experience to date with the NDIS has raised several concerns for me which I would like to outline in this submission.

1. The NDIS is currently not set up to support high functioning people with a disability. There appears to be a very specific shape that a person’s life must take to fit within the bounds of the NDIS. Because I am a capable and intelligent person I have found no end of frustration trying to make my life fit into the supports the NDIS currently offers. For example, I can organise one- on-one support for certain hours on certain days but this does not allow for me to do anything spontaneously. It also requires me to plan my life down to the finer detail on a regular basis, and I am no longer able to do anything outside of the times I have someone booked. I do not believe I am the only person this affects. The lack of flexibility within the system means I can’t respond to urgent needs, can’t visit a friend on invitation unless previously arranged, can’t work a job that has no set finish time (like general practice!), etc.

2. There are several gaps in the system that leave people with a disability wide open to abuse. I find these gaps leave me unnecessarily vulnerable. Some examples are: currently support workers do not need to have any training before starting work as a support person. Even when they do have training it appears it is grossly inadequate. Support workers are often sent to jobs they are not equipped to do eg to look after a person who requires a lifter without any training in using a lifter. Support workers are required to help me meet my goals but they have no training in how to do this. None of the support workers I have met in the past year have problem solving skills where they can break a problem down into its various steps to help me meet a goal. This would be the basis for a support worker to be able to help someone meet their goals. Many support workers maintain the status quo with their clients so their clients never meet their goals. This may be driven by ignorance of how to help someone meet a goal or laziness. There are many people flocking to become support workers because they perceive it as an “easy” job where they can do “fun” things with clients and be paid for it. There are no checks in place to protect clients of the NDIS from abuse. A police check and working with children’s check is grossly insufficient when people are coming from diverse work backgrounds and mostly have not worked this close with people before. I am a young vulnerable woman and I have male support workers in my home with me alone. I am aware of abuse but someone with a disability that affects their ability to discern what abuse is, communicate it to someone and stand up for themselves is infinitely more vulnerable than I am. There needs to be clearer channels to report abuse and not back to the organisation that employs the support worker. I have reported troubling behaviour of some of my support workers back to the organisation they came from and all that occurred was that the support worker was moved onto another client. This is exactly what allows abuse to occur and to go unnoticed.

3. Many support workers have no idea of the implications of breaking confidentiality or acting unprofessionally. In fact none of my support workers know what happens when they break my confidentiality or privacy and none know what professionalism is. They were never taught and as a consequence the most common complaint made to the organisation that employs them is about support workers talking about other clients while with another client. My support workers do it all the time and I have to stop them. Most people would not be capable of stopping them or not know what is right or wrong about this. If support workers come to the job with no training and organisations have no obligation to train their support workers then confidentiality will continue to be broken and professionalism will not occur. This brings me to another aspect of support workers - the majority are casual employees and so have no obligation to attend skills training sessions etc. Because these sessions are voluntary and not paid, no one attends. This has

happened with support workers attending lifter training and training on privacy and confidentiality and this is just an example of what is being missed.

4. Support workers are not required to wear uniform or identification when at work. This has led to huge confusion when I have been out with support workers in public. I have had people assume the support worker is my husband or my sister or my mother. I have had friends of the support worker stop and chat to them as if they met them on the street outside work because they have no way of knowing the support worker is working. I have had to cut conversations with my support workers off when this occurs. Agin this is a lack of professionalism. Wearing a uniform alerts others to the fact that I am with a support worker not a friend which allows people I am dealing with to know who to speak to and what the role of the person with me is. Otherwise I have people,e speaking to the support worker instead of me because they think they are my partner etc!

5. Local area coordinators have been of very little help to me. They usually do not have a background in disability and as such do not understand my situation or what might help. This led to a very poor first plan for me and then the stressful process of revision. This could be avoided if people were assessed by qualified disability workers.

6. The NDIS website list of providers is not useful as it does not go into detail of what they truly provide. This means many phone calls have to be made to find exactly what I am looking for. It is also weighted to cities so people in rural areas like myself struggle to find the appropriate support. This has especially been the case with Its who are accredited to do complex home mods. It is very difficult to find an OT in a regional area who can do this. A fairer distribution of resources needs to occur.

7. Support workers often drive clients to places they need to go in the support worker’s car. I have had many support workers with very old unreliable cars which does not impart much confidence in them. I have also had many support workers who are habitually bad drivers - speeding, tail gating, not indicating etc. There is nothing in place to protect me from unsafe drivers or people with unsafe cars.

8. My first plan was constructed by someone out of the area and as a consequence it did not account for the lack of public transport, the difficulty in finding Its etc. The second reviewed plan accounted for all this because it was done by someone local and the planner actually met me. Not having anything to do with a planner that is constructing a plan for me to meet my goals is absurd. Someone cannot constrict a plan that allows me to meet my goals in the way I would like to without speaking with me. Planners need to have contact with the people they are planning for.

9. wait times for reviews are currently unacceptable meaning needs remain unmet for substantial amounts of time. This includes simple things like replacing a wheelchair or getting urgent repairs or other equipment when circumstances change.

10. The 2hr minimum shift length for support workers means that my needs that take less time than this go unmet eg support to get up in the morning or prep a meal in the evening. These things do not take 2hrs so I can’t book a support person and the need falls to my husband who has been my carer.

11. Relationships with support workers seem to be ill-defined and again this is a lack of training issue. Support workers often befriend clients and have no idea about healthy professional boundaries. This can leave the client very vulnerable eg I have had many support workers tell me of personal problems or family relationship issues. This puts me in a very awkward situation and is totally inappropriate.

12. Those support worker I have had who have actually completed their Cert 3 or 4 in disability still have no idea one the issues I have raised. Their needs to be a specific course for support workers that trains them for the position - including how to enable someone to meet their goals.

13. There needs to be some sort of regular feedback that occurs about support workers to the organisation that employ them. Otherwise underperforming support workers or those who are repeatedly being inappropriate with clients will never be identified.

I would be happy to speak with someone in more detail about my concerns if that would help the enquiry. I am very concerned that if nothing is done to regulate support workers and protect their clients then systematic abuse will occur. It is already happening and will only get worse.

Regards,

Please remove my name before publishing my submission.