As we transition to the National Disability Insurance Scheme there is a real fear advocacy services will become harder to access. This, at a time when their services will be needed most, writes Ya'el Frisch.
If you had to choose right now what your "reasonable and necessary" requirements for a good, productive life would be what would you say? It's a hard one.
If pushed, you might say food, water, clothing and housing - perhaps access to work and activities that make you happy?
It's a big question and it's one that I and many people with disability across Australia will grapple with as we transition to the National Disability Insurance Scheme (NDIS).
It's both an exciting and uncertain time. The system is undergoing perhaps the biggest change it has ever experienced and in the middle of it all we are making some pretty important life choices.
One of the biggest sources of uncertainty remains what will happen to disability advocacy services in this mix. While there is a huge focus on services that provide choice and control, when asked the big questions about life your first instinct isn't likely to be, "advocacy fees, thanks! Assistance with understanding my rights and ensuring they are protected!"
Unfortunately, when the NSW Government committed to handing over 100 per cent of its disability funds to the Commonwealth National Disability Insurance Agency (NDIA), that also meant the money that funded advocacy services.
Their contracts with the NSW Government expire in June 2016 and advocacy will become a Commonwealth responsibility.
At the same time, NSW has obligations under its recently released Disability Inclusion Plan to encourage the inclusion and participation of people with disability. Whether the Commonwealth will be happy to fund advocacy that helps NSW agencies meet their own legislated obligations is unclear.
At COAG, Australia's disability ministers recently agreed that some support related to individual advocacy would be funded by the NDIS on a "user-pays" basis.
I will be eligible for an NDIS funding package to cover my personal care supports but is it right that I am asked to choose between a daily shower and money for advocacy, "just in case" something goes wrong?
The need for advocacy will become more acute as people with disability experience increased choice and control under the NDIS and the best way to do this is for state and commonwealth governments to fund these services outside the NDIS.
Here's three reasons why.
Firstly, when asked what your "reasonable and necessary" requirements are it will be almost impossible to predict how much individual advocacy you may need. If a tenant with intellectual disability needs to move between social housing properties, they may need assistance with negotiating with Housing NSW, signing a lease and changing address. This kind of support is often unexpected and unlikely to be "budgeted for".
The big worry here is the people who need advocacy the most won't be able to access it. This worry was backed up by the Productivity Commission in its 2011 Report into Disability Care and Support, which recognised that relying on an individual's capacity to privately pay for advocacy is likely to render it unobtainable to the most vulnerable.
Secondly, a lot of advocacy work is about making systems work better for people with disability generally and cannot rely on an individual to drive or pay for it.
It took a collaborative campaign from a range of disability advocacy organisations to make it mandatory for general practitioners to install and use height adjustable examination tables that could meet the needs of all patients.
Advocacy organisations supported parents of children with disability to campaign for education policy and infrastructure changes that meant they could access the same quality education their peers could.
The Supported Living Fund, that provides housing support allowing people with disability to create living arrangements that suit them, is the result of the work of advocacy services currently facing funding uncertainty.
Finally, advocacy organisations need to be funded outside of the NDIS because people with disability who are ineligible for individual support packages under the NDIS will also require advocacy services. There are about 4,230,000 people with disability in Australia and it is estimated only 400,000 will receive individual packages under the NDIS.
It is unfair to cut the remaining people off from advocacy services. Without individual funding their need for advocacy may be greater.
Advocacy is a crucial component of making society an accessible place for people with disability to lead meaningful lives, but it only works if it is accessible to people who need it, when they need it.
We need to see both state and commonwealth governments provide much needed certainty in this brave new world.