Australian of the Year and disability rights advocate, Dylan Alcott, wants to restore trust in the National Disability Insurance Scheme (NDIS) by focusing on the lived experiences of people with disability and putting them at the centre of all NDIS decisions.
This week, Mr Alcott led the release of NDIS 2.0: A disability led plan for the NDIS, a new report filled with key recommendations for NDIS Minister Bill Shorten.
Mr Alcott was quick to praise the NDIS as an “incredible scheme that has done some great work in its first ten years of existence” but acknowledges the program has “not worked for everyone”.
“There is this rhetoric around it that [the NDIS] is really costly and ‘it’s a bit of a pain’, ‘a bit of a problem’, when it’s actually not for the majority of people,” Mr Alcott told Sunrise on 7.
The former tennis champion believes there is still plenty of work to be done, so everyone can get “the support and care they need to flourish”.
The NDIS is making a positive impact
NDIS 2.0 report highlights key benefits for participants and families. This includes the first-time delivery of disability support services to 280,000 people and more than doubling the number of young adults with disability working 15 or more hours a week from 27 percent to 57 percent.
It also reveals the number of families and carers receiving professional support to care for an adult participant has jumped from 56 percent to 79 percent.
Children are among the most supported with 90 percent of kids receiving developmental support prior to school, and 60 percent of older children showing increased independence.
Additional research into the overall economic impact of the NDIS was recommended, with preliminary estimates stating that the NDIS provides a $52 million economic benefit. This equates to $2.25 of economic benefit per every $1 invested through employment and business growth.
Mr Alcott says the economic impact “should not distract from the Scheme’s core goal of including people with disability in the economy, just like everyone else”.
Reaching its full potential
In falling short of delivering “meaningful choice and control, independence, and social and economic inclusion for everyone” the NDIS has not yet reached its full potential, according to the report.
This is partly put down to a tightly controlled market for products, care and supports, and too many gaps in support for individualised funding and mainstream support.
For the NDIS to reach its full potential, Mr Alcott calls for greater inclusion of people with disability in the decision-making processes, including young people and families of children in the Scheme who make up the majority of NDIS participants.
He also says there must be improved processes when accessing and changing plans to ensure support is delivered in a timely manner.
Improving community-based supports for people with disability that are not on the NDIS is also essential, particularly for Australia’s Indigenous population living with disability who require culturally safe support.
Mr Alcott believes there should be less of an emphasis on the cost-benefit outcome of plans and supports, and a greater focus on the individual needs.
He highlighted the cost of participants appealing changes to their funding in court, where the National Disability Insurance Agency (NDIA) had at one point spent $28 million on legal fees over a six month period.
“For the people that need to be on it, they need to get the supports,” Mr Alcott told The Project.
“Often the money is caught up in the red tape. People are going to court to try and defend themselves [at the Administrative Appeals Tribunal].
“[The NDIA] are spending so much money that could go to families of kids who are neurodiverse so they can get carers, or so young people with a disability can have a shower everyday.”
Ten recommendations, first one ticked off
Among the wide range of recommendations are ten major ones Mr Alcott has presented to the Federal Government and Minister Shorten.
Mr Alcott is calling for the Government to commit to meaningful change to “develop a renewed contract with people with disability to rebuild trust that people with disability will get a fair go”.
One recommendation has already been achieved, and that is Minister Shorten’s appointment of Kurt Fearnley as chair of the NDIA Board.
The disability-led NDIA Board also features a historic five members with disability, creating more representation at a high leadership level, a move which has Mr Alcott excited over what’s to come for the NDIS.
“I’m really buoyant,” Mr Alcott says.
“When Kurt Fearnley was named as the Chair, I can’t tell you how excited I was. Lived experience is getting listened to.
” [In] our report, the main thing is to put people with disability back as the leaders of the conversation… but also listen to the participants. If they need more flexibility with how they spend their money, give it to them, cause they know what they need.”
The other commitments he wants to see are as follows:
- Do not make decisions about Participants without their input
- Remember what the NDIS is for
- Put Participants-first at the NDIA
- Improve the role and performance of Scheme “navigators”
- Change the narrative about costs to benefits
- De-politicise the Scheme’s institutions and rebuild trust
- Improve the availability of supports
- Increase the ability of Participants to make choices
- Focus on the impact for Participants
- Connect Participants with their communities to improve safety
Each one is multi-faceted, but ultimately, there is a recurring emphasis on more individualised supports, disability-led decision making and improving the overall quality of supports provided to every participant.
Mr Alcott says it’s important to also empower people working in the disability support sector to better understand disability and provide improved support.