Richard Larsen

To the Council,

I write to you regarding the review of the Specialist Disability Accommodation initiative. As a quadriplegic living at home with my wife, I am keenly interested in seeing this policy deployed so that it brings the broadest, fairest supports to persons with disability and their families. Specifically, I do not believe the policy enables participants to exercise choice and control. Furthermore, the current policy does not enable providers to develop quality accommodation or generally provide value for money. In fact, as I read the most recent clarification, it appears to be downright regressive.

I am not alone in this reading. The Summer Foundation has released a number of working papers describing specific examples where the SDA works against inclusiveness and independence. The policy, in an attempt to limit “warehousing” of disabled persons, brings to bear unintended side effects which not only break up families and existing support networks, but could easily add to costs by forcing participants to draw deeper from their planned budget to cover housing expenses and additional aids which could be more easily — and cheaply — be delivered informally. Bluntly, the policy reads very much as if the NDIA is expecting and planning that high-needs disabled persons should live in group homes. While shared accommodation can certainly be suitable for some people, the current SDA policy all but requires a recipient to live in group accommodation with strangers as opposed to an independent residence with family. This is evidenced by the NDIA’s own projection that only approximately 6% of participants in the NDIS would be eligible for SDA support, and of that fraction, practically all have been approved only for shared accommodation.

Let me use myself as an example of how wrongheaded this thinking is. Diagnosed at age 33 with multiple sclerosis, at 48 I am now almost completely paralysed from the chest down. In the intervening 15 years since my diagnosis, I have worked continuously, full-time in a demanding, highly technical field. As my mobility has deteriorated, I have increasingly relied upon informal and finally formal supports to maintain my life, my work and my family. I remain the sole breadwinner for my household, while my wife has left the workforce to support me. This is been a positive outcome as far as it goes, and I am very pleased with much of the support we have received through the NDIS and other schemes. The aggressive nature of my illness predicates that I will not be able to work forever. When the time comes to reduce my workload, my family and I will need to investigate supported housing, as we own no property and are lifetime renters (like many Australians). I believe that we would be prime candidates for SDA, but in order to qualify, I would need to leave my family and move into shared accommodation, as payment to the SDA-accredited developer is cut by more than 60% if my family joins me. I have it in writing from a local developer that this disincentive is enough to reject my application out of hand. This is obviously not acceptable, fair or, arguably, value for money.

Here we clearly see how current policy works against providers and scheme participants. Instead of a safety net where the NDIA works with participants and providers to form a comprehensive, inclusive framework for families with disabilities, the SDA would separate me from my wife, house me with strangers and require an increased financial commitment from the NDIS to fill gaps in support which would have otherwise been provided at lower cost either informally or by existing supports.

Overall, the recent clarification on SDA policy undermines the promise of choice and control for NDIS participants. It introduces crippling uncertainty for developers in the supported disability accommodation market. It mandates selection criteria which boil down to group housing by another name. It is my sincere hope that this submission and others can demonstrate the need for a review of the policy for SDA with a mind to provide appropriate support is not only to persons with disabilities, but to their families, all while working with the marketplace of developers and disability supports to provide the best quality support for a reasonable cost.

Thank you for your attention.

Richard Larsen & Emma Heseltine