Submission to:

My name is . I live in the Ipswich area of Queensland and am a researcher in the field of family advocacy, a lecturer in Human Services (USQ), and the mother of four children, the youngest of whom (6yo daughter ) has Rett Syndrome.

        is non-ambulatory, non-verbal, and has limited functional hand use. She uses an eye gaze communication device (thankfully purchased pre-NDIS) and has been receiving regular supports through DSQ for three years.

As a researcher who has been active in this field for the past four years, I am confident that I know about as much as anyone else in the professional sphere about the policy and processes of the NDIA, even with the understanding that the sands are shifting at a rate that it is almost impossible to keep up with. (For example, in preparing a professional development session for prospective service providers, I sourced information from the NDIA website. Six weeks later (on the day of the seminar), a significant number of the links had become inactive or processes had been changed.)

I felt quite anxious going into our planning sessions. Part of this is due to feeling as though my own family’s experience of the NDIS should be smooth and positive – that I should be able to put my skills and experience into practice with relative ease. After all, if I couldn’t do it, what hope would there be for the families I was working with? Unfortunately, our own reality has been fraught with delays, wasted resources, unreasonable burden, and welfare-type stigma. And doesn’t even have her first Plan yet.

Some initial observations:

-  The ECEI partner (      in this case) has been incredibly supportive and helpful, but staff are as frustrated by the lack of consistent information from the NDIA and the rapidity of process changes as I am;
-  The policy that prohibits supply of draft documents to families:
    -  Prevents simple sense-checking and genuine collaboration and co-design;
    -   Is in opposition to the central philosophy of the Scheme;
    -  Denies PWDs and their families the basic dignity of access to their own information;
         and
    -   Exhibits distrust – fostering a ‘them and us’ mentality from the beginning of the relationship.
-  Equipment purchasing is unnecessarily complicated and not timely:
    -  Assessment and quote processes currently trigger full plan reviews, meaning that a person with a complex Plan may experience this stressful review process several times in any given year;
    -  Plan reviews are systemically and administratively costly;
    -  Equipment is not received when it is needed, putting PWDs and carers at risk;

Our Family Experience

In our case, we completed all assessments and quoting processes prior to draft Plan submission to help expedite the processes. However, we are still being subjected to requests for further assessment and layers of scrutiny. An understanding of the need for equipment in the case of young children with complex Plans is severely lacking within the ECEI pathway – to clarify, NOT an issue with the ECEI partner, but with NDIA’s own ECEI team. These processes began in June 2017 and first Plan is not yet approved in November.

Our non-ambulatory daughter has been travelling to and from school by contracted bus service without a wheelchair (in a stroller she has outgrown) for a year. This is a problem:

-   For             scoliosis (no support);
-   For the transport provider (the stroller cannot be tethered legally in the bus so 25kg must be manually lifted out of it and into a car seat for every journey); and
-   For           access to her communication device, which cannot be mounted on the stroller but will be mounted to a wheelchair. Without this, Charlie has no way of communicating.

We are now being asked by the NDIA to further justify all of the “extras” on the quote – this demonstrates a real lack of understanding about equipment in general as none of the items are ‘luxury extras’ outside the prescription – they are simply a reflection of needs and are already well articulated on the assessment forms (eg. thoracic support on the chair, tilt-in-space capacity, foot rests for stability, eye gaze mounting arm etc).

Our team has since been asked to articulate the “risk to if this equipment is not approved” - this should be clear to anyone who has read the assessment and draft Plan where we provided significant supporting information. Also, the NDIA’s own assessment form does not include this component.

Each of these requests for extra information costs our family money – for professional services etc – and costs valuable time as her scoliosis progresses and she struggles in school without access to communication. There are also significant fall and carer injury risks inherent in the regular transfers in and out of her current stroller during the day.

We have requested three considerable pieces of equipment in Plan: wheelchair, walker/gait trainer, and high-low chair for dining and activities at home. At every point we have been reminded to “seek out the middle of the road solution – not the Rolls Royce, but not the clunky old banger either”. This is a ludicrous suggestion given that this is all PRESCRIPTIVE equipment relative only to needs. This repeated reminder gives the impression that the NDIA perceives us as asking for unreasonable luxuries rather than necessary equipment. We have also been asked why “such a young child” would need a wheelchair and a gait trainer. This once again demonstrates a complete lack of understanding within the ECEI team. This question was very clearly addressed during our planning sessions with and I can only trust (since we are not afforded access) that this information was accurately reflected in the information supplied to the NDIA on our behalf.

This type of feedback led us to decide NOT to request other necessities such as shower/toileting solutions and hoisting equipment because the very clear message has been that we are expecting ‘too much’. We have since purchased the aforementioned two pieces of equipment privately but most families do not have this option. We will need to look at our own family transport options

When

does eventually receive her wheelchair, but the very thought fills me with dread. The

NDIS is not welfare, but a similar stigma is tangible and strips families of dignity.

Due to age, we have had the support of as we navigate this complex space. I can only imagine how much harder this would be for those afforded only a single planning session and no consistent point of contact to wade through it.

Overall, this experience has been frustrating and is taking far too long. is without much needed equipment and the process has felt very much like welfare or charity in that we should be grateful for what gets but not ask for too much. On top of this indignity we are repeatedly revisiting our professional team and making them feel as though their own expertise and credibility is in question when their professional assessments are not accepted.

The NDIS has a long way to go in achieving its own ideals of choice, control, dignity, and full and equals citizenship for people with disability in Australia.