the origins of the ultimate fairytale

For anyone reading that is not from Australia, please be patient with me whilst I discuss a Australia specific topic. To start with, I need to tell a background story, how we come to discussing the NDIS.  Some time ago there was an inquiry into the state of disability services and funding in Australia. There is no surprise what was found when they delivered the results of their inquiry on the 10th August 2011. Some of the key points that they delivered were:

• Most families and individuals cannot adequately prepare for the risk and financial impact of significant disability. The costs of lifetime care can be so substantial that the risks and costs need to be pooled.
• The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system are growing, with rising costs for all governments.
• There should be a new national scheme - the National Disability Insurance Scheme (NDIS) - that provides insurance cover for all Australians in the event of significant disability. Funding of the scheme should be a core function of government (just like Medicare).
• The main function (and source of cost) of the NDIS would be to fund long-term high quality care and support (but not income replacement) for people with significant disabilities. Everyone would be insured and around 410 000 people would receive scheme funding support.
• The benefits of the scheme would significantly outweigh the costs. People would know that, if they or a member of their family acquired a significant disability, there would be a properly financed, comprehensive, cohesive system to support them. The NDIS would only have to produce an annual gain of $3800 per participant to meet a cost-benefit test. Given the scope of the benefits, that test would be passed easily.
• It would be the assessor and funder, but not the provider of care and support. Services would be provided by non-government organisations, disability service organisations, state and territory disability service providers, individuals and mainstream businesses. Increased funding, choice and certainty are the key features of the recommended scheme. Advocacy would be funded outside the scheme.
• People would have much more choice in the proposed NDIS. Their support packages would be tailored to their individual needs. People could choose their own provider(s), ask an intermediary to assemble the best package on their behalf, cash out their funding allocation and direct the funding to areas of need (with appropriate probity controls and support), or choose a combination of these options.
• The NDIS would cover the same types of supports currently provided by specialist providers (but with sufficient funding), give people more opportunity to choose mainstream services, and encourage innovative approaches to support.
• The Australian Government currently provides funding to the disability sector of around $2.3 billion, while state and territory governments provide funding of around $4.7 billion - a total of over $7 billion.
• A separate scheme is needed for people requiring lifetime care and support for catastrophic injuries - such as major brain or spinal cord injuries. Currently, many Australians get poor care and support when they acquire such injuries because they cannot find an at-fault party to sue.

For families living with a disability the summary findings of this inquiry are no surprise. As parents we live knowing our children have a diagnosis that the government both state and federal are providing token efforts at supporting them, in the end costing the country far more. Not many families are ever financially prepared for the cost of having a child or family member with a disability, I wonder if we could ever be. 

In the past I have discussed the lack of services for my children, the peak organisation that is supposed to support and fund services for disability in Western Australia has such strict criteria that most families living with disabilities are rarely offered the support they so desperately need. The issue of a strict budget associated with increasing need is an issue most governments have not had the wisdom to approach must less solve. Within speeches and policy statements the resounding message of a band-aid solution to the worst issues within the health and disability industries in our states. 

The conclusion, the disability services that are provided and funded for in this country are often of a third world standard. I say this because we live in a flourishing country, we are blessed. However our children struggle to speak because of the lack of funding for speech therapy, those with permanent neurological conditions such as autism lose funding for services when their child turns six. In a country were we are wise and we know what to do, we are disabled by our lack of funding and initiative to do no further harm. In the next post I will discuss how from a carer's perspective the NDIS may impact you and your family.