Submission 2081

Dear Senators Could you please consider my submission to the senate community affairs legislation committee. Many thanks. Yours faithfully

Dear Committee Members I write as the parent of a profoundly disabled 19 year old daughter with a progressive neurological disorder.

Our beautiful and beloved daughter was born with great misfortune of suffering repeated functionally impairing strokes as a result of her lifelong condition. Despite excellent medical care these have continued unabated, and so has her progressive loss of function.

   was born prior to the introduction of the NDIS. My husband stopped his work as an engineer to care for her. He has not been able to return to work as her health remains fragile and tenuous. I have continued to work to my capacity to support our family.

The NDIS became available to at age 9. It was life changing. Her wheelchair and mobility aids became accessible (we had wondered how we would fund them prior). We were able to attend events with our son, which had not been an option prior and I was able to increase my work hours. This was due to a combination of support and equipment funding. She commenced regular physiotherapy, and speech therapy. Her world expanded and our options as a family also expanded. It was, and continues to be life changing for us all.

   still doesn’t sleep well, and as it turns out, nor do 90% of people with lifelong neurological disorders. If she is up, then one of us is up, as she requires support for all of her ADLs and has no understanding of safety. We have done this 2 to 4 nights a week (at times 7) for almost 20 years. We need to know exactly where she is and what she is doing 24 hours a day to ensure her safety. She continues to have uncontrollable seizures and recurrent strokes. She is non verbal and mobility and intellectually impaired.

My husband and I will support at home as long as she is alive and we are able, but the toll of that on us is significant. Being able to access in home support, along with the wonderful programs of capacity building she attends during the week since she completed special schooling, keep it just manageable for all of us. Once a year she attends “camp” for 3 nights. We are incredibly grateful for the NDIS funding she receives. It also fills us with optimism for her very uncertain future.

The NDIS was born out of a desire for our nation to support our most vulnerable to live fulfilled lives and reduce exclusion and discrimination. It was designed to support lifelong disability and in fact, in the early stages, was designed to support disability that arose in early life.

Submission 2081

Bit by bit, the state governments stepped away from their support services, including that provided by DSS, DDS and public health services and bit by bit people had no option but to turn to the NDIS. Many of these recipients were not the intended target of the NDIS, BUT, there were no alternative options.

Unscrupulous providers (and much less often recipients) cashed in. The NDIS price guide does not discriminate between a physio with 30 years experience and a physio with 1 year experience. The former is underpaid on the price guide and the latter is overpaid. This lead to an influx of unscrupulous providers. There was no oversight of the quality of services provided. Often NDIS recipients were charged differently to others. Unfortunately the nature of being an NDIS recipient sometimes meant that advocacy could be difficult. has been very lucky to have parents who advocate for her, at times have refused providers with what we considered “sharp” practice and who have managed her funding as carefully and frugally as we could.

There are all sorts of organisations taking their cut, but not offering value for money. This includes plan managers who pay bills without due diligence, support coordinators who add nothing meaningful, allied health professionals who offer inexperienced therapists whilst encouraging them to charge top dollar, often providing superfluous reports and overuse of non face to face charges. All these people take their cut, but many add nothing to the quality of life of the recipient. Many providers see it as a government funded meal ticket and have limited regard for the recipients, with lifelong disability, just trying to live a life closer to that of which many Australians take for granted.

The NDIS grew and started to move away from its roots and intended target group. Now we are in a situation where that target group, are fighting for their very existence. There are no state government services to turn to, their lives depend on the NDIS (in fact remaining alive often depends on the NDIS) and it is incredibly frightening. It’s not just inconvenient, it is frightening. We know families who understand how murder suicide might look like the only option. We know many families who have separated due to the demand and pressure of caring for their disabled relative. We know families in the depths of despair trying to advocate for their relative to the NDIS, which continues to request unnecessary reports, unreasonable and unfair statements from a wide range of “interested parties”, which then are either not read, or if they are read, ignored by delegates of the NDIA. In what world do we think a delegate on the end of the phone, who has never met the recipient, has more knowledge and understanding of a person, than a trusted health professional. Not only is it incredibly disingenuous,it is wasteful of the NDIA resources to request these reports and then ignore them. A functional capacity assessment, which seems to be the desired tool of the NDIA can cost up to $10,000. To then ignore that report could be considered a liability.

Yes the NDIS spending needs to be contracted, but our daughter was the intended recipient of this scheme right from the outset. Her

Submission 2081

options, and our options in caring for her are limited and the NDIS has made that manageable.

We implore you to consider carefully both inclusion and exclusion criteria, stop wasting this precious funding on unnecessary reports, discriminate between providers to ensure the most experienced providers are appropriately acknowledged and remunerated, and provide timely and appropriate funding to the intended recipients of this wonderful scheme, which should be the most functionally impaired with lifelong disability. By doing this, along with a return to state funded services for the less impaired, the NDIS would return to it “roots”.

I am grateful for your consideration of this submission and am happy to be contacted and speak further, should it require clarification.

Your faithfully,