The Summer Foundation recently held a forum on young people living in nursing homes and the National Disability Insurance Scheme (NDIS), a discussion about reality, expectations and the unknown.
The questions asked by both the facilitator and audience all made for a stimulating discussion on the new NDIS world. We are very grateful to the many people who shared their wisdom and insights. One of the key themes to come out of the forum was that of systems change, and the complexity of transitioning to such an ambitious Scheme.
Given the regular negative media about the IT and infrastructure associated with the NDIS and the frantic activity to transition so many people into the Scheme, it was timely to refocus on what we are all working so hard to achieve.
NDIS – Why?
The NDIS is a big idea. It turns the current service system on its head and requires a complete change in the way services are delivered. Through the NDIS, 460,000 people with significant disability will receive the supports they need to live an ordinary life. For many people with disability who have lived for years with limited choices and opportunities, this will be extraordinary.
The NDIS has made a huge difference to Kirby Littley who at 29 found herself living in a nursing home after a brain aneurysm. Kirby was able to move from the nursing home to living with her parents with support from the Scheme.
Kirby said, “Being home really motivated me. I missed my family, pets, music and anything connected to my old life. I didn’t have the conversation with young people around me. I could have these things at home. The NDIS has provided me with the equipment, and the support workers which has enabled me to progress my goals…. to talk and walk, to go back to my own home and ultimately to go back to work.”
The NDIS replaces the current welfare system with an insurance-based approach which invests early rather than waiting until people with disability and families reach crisis point which is much more expensive. The old state-based disability service systems are too complex, not transparent, unfair and inefficient. The Productivity Commission said that the NDIS had to happen because the old system was broken. Funding was allocated centrally on an annual basis with a “command and control” mentality. In the NDIS, the funding is allocated to the individual. People with disability are experts in their own lives. Giving them choice and control over services will be a more efficient use of resources. The NDIS takes a long-term perspective, investing in people over the course of their life to foster social and economic participation.
Dr Peter Gibilisco provided valuable first-hand insights into the disability service system. He highlighted that the welfare system is often focused on providing the cheapest and safest options for people with disability. We currently have very limited research to tell us which services are cost-effective and deliver economic and social participation for people with disability.
The insurance scheme’s approach to supporting people with disability and the data that is being collected is an exciting element of the scheme. Insurance schemes are data-driven and invest in research – they are important drivers of social change. After a few years, the data collected by the scheme will provide an evidence base for the delivery of quality services and better outcomes for people with disability. Ultimately the NDIS will lead to great social outcomes and reduce the stereotypes associated with disability.
What is not working well today?
The NDIS is ambitious and disruptive. Three years in, we are part-way through pulling apart the whole disability service system and putting it back together. The principles of the scheme are fundamentally sound. However, operationalising these principles so that they are a day-to-day reality for people with disability nationally is an enormous challenge.
The NDIS started with trial sites because it needed to learn by doing. It rolled out to a small number of locations so the NDIA could test the ideas, learn and move forward. The challenging part of this approach is that the scheme is constantly evolving and changing. This is a great approach to learn and iteratively improve the NDIS, however it comes with a necessary frustration that the scheme is constantly changing.
A key role of people with disability, families and advocacy organisations is to keep providing the NDIS with feedback. Part of this feedback process is supporting people with disability through the review and appeals process because this is an important mechanism to get the scheme right. For example if crucial elements are left out of someone’s plan, the review and appeals process is crucial to make sure they get the things they need.
Kirby Littley’s mother Carol explained, “We have to keep telling the NDIS what they are doing right and what they are not doing right because we can’t make things better if we don’t let people know. We don’t have to be mean and nasty and scary but we need to give feedback both ways so we can improve it.”
Choice and control over services is a terrific concept. However, if there is not a market out there to purchase the specific services you need then your plan is not going to come to fruition. It is going to take a long time to develop a mature market with the range and scale of services to meet the diverse preferences and needs of people with disability. Service providers are working to reengineer their operations to be person-centric and deliver more services within a different funding framework. Developing a mature market will take time and there will be gaps in the meantime.
What does success look like?
We are looking forward to seeing people with disability being empowered and independent and making as much choice as possible. However as Melbourne City Mission’s Peta Fensham-Cobb said, “We have got a lot to learn about how we facilitate this ordinary life for people”.
We are also hoping to see a community that evolves to be more inclusive of people with disability. “Success in a few years time will be when our communities are really accessible and you don’t need disability specific supports because you can get around anyway,” Esther Kerr-Smith said.
What did we take away from the discussion?
As social affairs writer for The Australian, Rick Morton is passionate about making government accountable and seeing that the NDIS lives up to the hopes and expectations of people with disability. Rick said, “The NDIS is working and when it rolls out, if there are any kinks left they will be ironed out over time. We have seen the success stories now ‑ we are moving young people out of nursing homes. To me that’s phenomenal. We have been talking about that for 15 years in this country, probably longer and nothing ever got done…So we just have to get to the end and success will be that economic and social participation that the Productivity Commission talked about and if people have control over their lives and can leave the house when they want, job done.”
Information is key. People with disability and families need timely access to practical information. There is still instability but there is also a huge amount of goodwill and excitement about the potential of the NDIS to change lives.
While the NDIS experience today for people with disability does not meet our hopes and expectations we need to focus on the principles and continue to work together to build the systems that make social and economic participation a daily reality for people with disability. As Esther Kerr-Smith said, “We are all motivated to work through the lumps and bumps along the way.”
Thanks to the following people for a stimulating and thought-provoking discussion:
- Kirby Littley, NDIS participant
- Carol Littley – Mother of Kirby
- Dr Peter Gibilisco, Disability activist and researcher with extensive personal experience with the current state disability service system
- Lynne Foreman, NDIS Participant in Barwon NDIS trial site
- Gordon Irvine, NDIS Participant in Hunter NDIS trial site
- Colin Irvine, Brother of Gordon
- Fiona May, CEO of the ACT disability aged and carer advocacy service (ADACAS)
- Esther Kerr-Smith – General Manager, markets and providers, NDIA
- Peta Fensham-Cobb – Senior Manager North East, disability services division, Melbourne City Mission
- Rick Morton – Social Affairs Writer at The Australian
- Tom Worsnop – Executive Manager, Summer Foundation
- Luke Bo’sher – Head of Policy and Strategy, Summer Foundation
Our host this year: Beverley O’Connor, Presenter of The World on ABC News 24.