By Christina Ryan
The National Disability Insurance Scheme (NDIS) represents a major victory for disability rights activists, and particularly for those of us who are people with disabilities. The NDIS was envisaged by service providers and the parent / carer lobby but how it will look belongs to us.
The Scheme has been shaped within a human rights framework, aligning to key principles of the Convention on the Rights of Persons with Disabilities (CRPD). Most specifically, it uses the social model of disability to consider eligibility rather than rating people against a long list of accepted disabilities. This is a fundamental shift in the government approach to disability service provision, and represents a key victory for DPOs and Advocacy Organisations in Australia. The NDIS has a number of eligibility steps, but the key two are: 1. the level of support you require (in other words do you need a certain level of support to live with dignity, get by, etc?), and 2. is that need ongoing (is your disability with you for life).
These criteria are causing some confusion to people with disabilities and their families who are well conditioned to using diagnostic labels to navigate current service provision systems. The new criteria consider the barriers to being part of the community and living with dignity, and look at whether early intervention will increase a person’s ability to participate.
Another fundamental principle of the NDIS is individualised funding under the tag label “control and choice”. This is a radical change in Australia where “block” funding has been the standard model used. Block funding is given to service providers by government, who are then required to provide services to a certain number of people with disabilities. Most service providers are non-profit community organisations who have taken this model and used it to average services to as many people with disabilities as possible. Some of their consumers will need greater supports, and some less.
For many people with disabilities this has meant being forced to live with people they don’t choose, receive very rationed services, and generally accept whatever generic service a provider offers.
The disability movement in Australia fought hard to ensure that the NDIS would not perpetuate this old system, which has catered remarkably well to service providers, but which has left people with disabilities poorly supported and living lives over which they have no control. In fact in 2009 the Australian Institute of Health and Welfare identified that under half of people with disabilities were getting less than half of what they needed. Very few people actually had what they needed at the level they needed it. In other words, there was huge unmet demand in the disability community. When examining the need for an NDIS the Productivity Commission was clear that the current system is broken and should not simply be expanded with more money, rather a whole new disability support system must be established.
So, the NDIS will use individualised funding, where an allocation (based on assessed individual need) will be made to the person who will then make their own choices about how that money is spent.
For most people with disabilities individualised funding is such a radical concept that it will probably take years before they fully realise its potential. This will be particularly the case for highly institutionalised people whose lives have been largely managed by those around them. Many expect others to continue to do what needs doing to make their lives work and have no concept of how they might express their wishes or make their own choices. Disability Advocacy Organisations are working hard to ensure that this very marginalised group of people with disabilities are as prepared as possible for such major reform. Something that is being focussed on is increased access to self-advocacy training and supports to ensure as many people as possible are not left by the wayside when it comes to having control and making choices.
Service providers and families are working to understand how they will operate in a system that puts the person with disability as the key decision maker. Many seem to assume that nothing will change, and it probably won’t for a long time, others are being innovative and proactive in making the new vision a reality.
Australia is in for a brave new world where people with disabilities will have much greater access to supports, be more recognised as their own agents, and be more visible in the community. How this will roll out is anyone’s guess.
One of the key concerns of Advocacy Organisations is that people with disabilities DO actually have a role in making their own choices and decisions about what their supports look like. It will be very easy for everyone to just continue as they currently operate, but the NDIS is intended to be very different.
There has been some rush to get guardianship orders in place so that people’s access to their individual funding package is denied, or to ensure that their housing options (for example) comply with family and service provider preferences. This is worrying and is being monitored by Advocacy Organisations and by various arms of government involved in implementing the Scheme.
Perhaps there will be little change initially, other than increased levels of appropriate supports, but over time as people with disabilities become more active and engaged in the community we will become more in control of what is happening in our lives. As we become better practiced at making decisions about our supports we will be better trusted to do so.
Alongside this is the broader global push to replace substitute decision making with supported decision making. This concurrent activity in both areas may contribute to some acceleration as each relies on the presence of the other to make them viable. So, supported decision making will assist control and choice to be a reality, while more control and choice will reduce the perceived need for substitute decision making.
Some key areas being watched by DPOs and Advocacy Organisations are:
1. Will the NDIS result in less child removal from parents with disabilities as supports are provided in this area for the first time?
2. Will levels of violence and abuse reduce as people have better access to choices about how they live and who they live with?
3. Will employment and education levels increase because people can get out there and participate reliably?
4. Will women with disabilities finally get a more equitable share of the support dollar (at present the national rate is about 35%)?
5. Will forced sterilisation become a thing of the past once better menstruation management and supports are in place?
In short, the NDIS is keenly anticipated by people with disabilities and their supporters and we’ll be watching to make sure it fulfils expectations on greater control and choice, that it is about our rights, and that our brave new world becomes reality.
In 2014 there are four current “launch” sites trialling various aspects of the NDIS. Two further jurisdictions are about to launch the Scheme with full roll out across Australia by 2019.
About the author
Christina Ryan is the General Manager of Advocacy for Inclusion and the Chair of the Disability Advocacy Network of Australia. She is also a person with disability who uses support.