I was amongst the second region to be added to the National Disability Insurance Scheme (NDIS). Having access to the NDIS has been life changing for me. I went from living with the stress of knowing I would never be able to afford to manage my disability, to being able to now potentially living with it; whilst engaging in some work and life.
My experience has been overwhelmingly good; yet there have been notable challenges along the way that I’ve observed personally and have also had relayed to me by frustrated patients and healthcare practitioners.
It is important to mention upfront that the stress and insecurity the system establishes through the rejection and review cycles alongside constant media discussion of NDIS precarity takes a large toll on people living with disabilities and their carers. Even the necessity for this submission and the disclosing of personal information when couched in a system where funding that makes such an immense difference to quality of life can potentially be cut or removed at any point, and often at the discretion of someone with no knowledge of your disability, is extremely stressful in an ongoing way. We live with long-term fear within it which is unhealthy and counterproductive to the otherwise important and great support that the NDIS is to our physical lives.
My NDIS journey began well. I felt supported by the planner in my initial process, the focus was on the impact of disability on my life, beyond diagnostic labels, and what supports could improve my access to a more ordinary life.
Once I received my Plan I began to encounter problems. As detailed below:-
- Self Management was not enabled, although specified as my personal choice.
- The allocated organisation who were being paid to help me in my first year were unable to work this out, recognise the problem or advise me how to use it or solve the problem. They continued to take a large amount of money from my Plan for not assisting me. It took many phone calls and months till a curious National Disability Insurance Agency (NDIA) call centre employee took a deep dive into what was happening, worked it out and got it resolved for me. Only then was I able to utilise my plan to its full capacity.
I have since received Plans where a Part which has always been Self Managed suddenly isn’t although not specified in the Plan, nor conveyed to me. Rather I’ve undertaken the service, gone to claim in the usual way, found it won’t go through and called the NDIA. On my third attempt to resolve an incidence an NDIA call centre staffer expressed that I had multiple options, the one suggested was going to require a lot of extra work from a Provider who hadn’t caused the issue so I enquired about the other options and was told that if I hung up and called back another person would answer my call and I’d be provided with different advice. I had to ultimately call the Commonwealth Ombudsman they ensured the issue resolved and the money reimbursed to me. It shouldn’t have to come to this.
Furthermore, on my initial plan some of the services I required for my disability were not adequately funded. I have hypermobile Ehlers Danlos Syndrome (hEDS) and regular physiotherapy makes an enormous difference to my proprioception, ability to stand, walk and participate in society. (This is a lifelong need) I was initially told that I was only allowed a base amount of physiotherapy hours as it was supposed to be used to train a carer to undertake my program and not for me to actually work with a physiotherapist longer term. The same was said about muscular release for my spasming muscles.
hEDS is an under diagnosed, complex and often extremely debilitating genetic connective tissue disorder. It requires experts to work very closely with people individually for any hope with management let alone building capacity. Without proper support people risk becoming further disabled and requiring even greater interventions (and resulting costs) longer term. Expecting a carer, with no to little expertise to be trained up to take the place of a professionally educated and experienced physiotherapist is negligent and dismissive of clients’ disability and the value of professional expertise.
I have been on NDIS for several years, initially a different Local Area Coordinator reviewed my case each year, it was the only contact we had and it was hit and miss whether they understood what was occurring with me or adequately put forward my support needs. My current LAC has been overseeing my Plan for a number of years and the difference is marked. They are clear and direct whilst also supportive and understand my disability needs.
I hear of many new applicants being asked by Occupational Therapists to pay thousands of dollars to be assessed in the hope of being approved. In many cases people with hEDS have doctors and physiotherapists they already see and work with that more than understand their limitations and can speak to the disability supports needed. I’ve also come across disability providers who charge higher rates if they realise the person is on NDIS.
As I am Self Managed I personally will not continue with any provider that charges different rates and would hope that this practice be addressed. I have heard from some of my regular providers that they hear from colleagues encouraging them to put rates up for NDIS clients thinking that rates mentioned in NDIS charts are what they should be charging not a maximum amount that would not be sustainable for any other clients they see and would reduce quantity of access NDIS clients have.
There appears to be no accountability for providers who steal from clients either. A fellow participant who was Plan Managed had a service provider who was claiming payments for dates they knew were false. The client noticed and took the case to VCAT - but why is this not a criminal offense? The funds were being stolen. Providers are able to rebrand and continue.
The sustainability of the NDIS is deeply important to me and others on it. It is allowing me to try and find ways back to working, paying taxes, contributing to life in many ways as well as enhancing my overall quality of life, within the clear limits placed upon it by the disabilities I live with.
We need those with complex disabilities beyond ‘a list’ to have their existing medical practitioners believed, and their reports respected. It should not cost applicants to NDIS
-
thousands of dollars in assessments with new health care professionals when established relationships are already in place, in order for potential participants to get the right reports completed to even begin the application process.
-
Perhaps early intervention packages could be considered with some conditions in order to prevent further disability. (and longer-term larger costs). Clear consequences to providers who overcharge and / or steal from clients also need to be realised.
-
Finally, we - The Participants deserve to not live in fear that our payments are threatened or not guaranteed. That they may potentially be slashed / removed at any review etc; this is vital to ensure we are able to get on with using the funds the way in which they have always been intended. To maximise our involvement in all aspects of our lives. To live an ordinary life instead of being forced into advocacy for the system.