Personalised Lifestyle Assistance (PLA)

2/18 Floriston Rd Boronia, VIC, AUS 3136. Phone/FAX: +61 03 97398333

Response to the Productivity Commission Draft Report on 
Disability Care and Support

PLA is a small grass roots organisation that strives to assist people with disabilities to have lifestyles that are personally meaningful, community inclusive and empowering. PLA exists to educate, inspire, inform and provide advice to people with a disability and their families to enable them to have opportunities typical of other citizens in the community. 
Personalised Lifestyle Assistance would like to commend the Productivity Commission on the Draft Report on Disability Care and Support for acknowledging the issues that may prevent people with disabilities having a full life in the community. However, we have some comments on the need for more than funding to address this. Finding solutions in funding could potentially have the effect of filling people’s lives up with specialised programs, professionals and bureaucracy rather than seeking out and fostering supports that naturally occur in the community. For the direction of such a scheme to provide valued opportunities for people with a disability resources will need to be directed towards building the capacity of people to think in ways that enhances personalised and authentic community based options and create equal access to opportunity and housing, rather than relying on out-dated models of congregate care and clustering people together in arrangements which prevent community connectedness. They also affect how the community views disability and ultimately how we support and engage with each other.  
We have a number of points to make in relation to this proposal and the role of the National Disability Insurance Agency (NDIA) that reinforce and elaborate on points made in our earlier submission. The page references below relate to the Overview and Recommendations version of the Draft Report. 
Comments on the Key Points (p2)
“NDIS would have other important roles, including mustering community resources, providing information to people, quality assurance, diffusion of best practice among providers, and breaking down stereotypes.”
While it is important to provide good information to people with disabilities and their families, there is a need to go beyond information to build the capacity required for individuals, families and communities to be able to make best use of available funds. It is our experience that providing funding and information is not sufficient to enable people to imagine the possibilities for a full life in the community which has often been limited by low expectations of what is possible. The process of supporting people to “think: and “do” differently not only requires inspiring examples of alternatives but having creative and well informed people/leaders who can assist people to develop a vision for a good life and guide them through each stage. For example many people who PLA assists have never dreamed they could live in a more personalised living arrangement. Once inspired they are unsure of where to start and what/who might help. This requires thoughtful support to guide people over a number of years. With such capacity building, it is possible that less funds may be required and greater use made of existing resources within the community. 
 “People would have more choice in the NDIS.  e.g.  - cash out their funding allocation and direct their funding to areas of need they think are most important.” 
The ability for people to self-manage their funding also requires an investment in capacity building. Recent evaluations of personal budgets in the UK have recognised the importance of developing leadership and providing infrastructure and supports to assist people to make the most of their individual budgets (In Control (2010) www.in-control.org.uk). It’s important to also recognise that money on its own will not automatically bring people a good life. If people are not informed about what is possible through opening up their imagination then they will rely on models from the past that have excluded people from the community. 
On page 6 the report comments that “Approaches to delivery of supports, therapeutic services and administrative processes are only weakly evidence-based, despite the billions of dollars given to such services each year.” We would propose that there is a significant body of evidence on what works to support the inclusion of people with disabilities that is not utilised by services. There needs to be a greater investment in disseminating this knowledge, not only to services but also to people with a disability and their supporters.
On page 11, the report outlines the 3 tiers of people who the NDIS may address in different ways. 
Tier 2 is all people with, or affected by, a disability.  The proposal is that this group could approach the scheme for information and referral, but only a smaller sub-group would be eligible for funded support. However it is our belief that to enable people to meaningfully access generic community supports it requires more than just information and referral. 
On page 21 Report in Box 2 the report outlines the types of supports that may be provided by the NDIS.
Specialist Accommodation Support such as group homes and alternative family placement. Supports to assist people with disabilities to live in a home of their own with a range of individualised supports, rather than a group living environment is a much better way of meeting people’s unique needs – especially when people have complex needs or are labelled as having challenging behaviours. PLA can provide examples of where this has been a successful strategy for people with a range of disability types, including those with high support needs for less cost than “specialist” accommodation that groups people based on their disability. 
On page 23 the Commission has raised the possibility of an entirely new model for housing for people with long-term disability…  PLA would strongly support the pursuit of this option, enabling people with a disability to live in home of their own with people of their choice and provided with the support needed to do so. Such support may be a combination of formal and informal supports such as sharing with a Housemate. 
On page 25 of the report the Commission recommends giving people power and choice.  For people with disabilities to have real power and choice the service system needs substantial transformation to be responsive and flexible to be able to respond to such choices. People with disabilities also need assistance and reassurance to be able to exercise their choices, as it has not often been their experience to date. This had been our experience in supporting people in Victoria to make the most of their individualised funding arrangements.
On page 26 (dot point 3) we would assert that the kind of support required is more than videos and written material. For example, individuals and families who have had experience of crafting new opportunities in the community can be developed as leaders and mentors for others to help them exercise choices and create new opportunities to participate in community life. People also require, as mentioned above thoughtful guidance while they implement their vision.
In summary, PLA would encourage the Commission to consider the importance of capacity building activities, especially investing in people with disabilities and families, to enhance the potential for the NDIS to improve the lives of people with disabilities and their full inclusion in community life. 

PLA Management Committee and Staff
May 2011