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Nothing about us without us – are we there yet with disability rights?

14 Jul 2022, by Amy Sarcevic

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“Nothing about us without us” – the idea that policy shouldn’t be designed without first consulting the people it targets – has become a prominent mantra in the disability rights space in recent years.

However, while the idea may have gained traction, it is yet to have altered the approach of some policy makers, argues disability advocate Graeme Innes – a keynote speaker at this year’s National Disability Conference.

He believes issues surrounding employment, leadership, and the National Disability Insurance Scheme (NDIS) remain as a consequence, and talks to us ahead of his speech about the impact this is having.

Reduced NDIS impact

Despite the longevity of the NDIS, Mr Innes says the scheme has become an “oasis in the dessert”, with people desperate to get on board, following measures taken by the former government that make it harder to qualify as a participant.

At the same time, the scheme’s social impact has plummeted, he says, with plan values dropping 4 percent over the last twelve months, as a result of budget cuts from the Coalition.

“Under the Coalition, we saw funding wound back dramatically – without consulting the disability community – and the positive benefits of the scheme significantly underplayed,” said Mr Innes ahead of his speech.

“Of course, the scheme must be sustainable and not exceed its funding envelope, but when you look solely at financials, socioeconomic benefits are often not considered.

“That’s a shame because research has shown that for every dollar spent on NDIS, $2.25 goes back into the economy. By comparison, defence spending has a negative return with only 90 cents coming back for every dollar spent.”

Alongside alterations to funding, former governments have also attempted to introduce new features to the NDIS without consulting the disability community, Mr Innes highlights.

Independent assessments are one such feature. In 2019, former NDIS Minister Stuart Robert released a plan to improve the scheme, which included an intention to implement this new method of qualifying for NDIS support.

Eventually, independent assessments were scrapped, with Robert’s successor, Senator Linda Reynolds, instead following recommendations from the NDIS Independent Advisory Council and agreeing to “work in partnership with people who have a lived experience of disability […] and co-design a new “person-centred model”.

However, Mr Innes believes Robert’s attempt to introduce the measure has caused lasting damage, in spite the outcome.

“They [the Coalition] tried to bring in independent assessments, despite strenuous opposition from the disability community. This has destroyed trust in the scheme and done a great deal of damage,” he said.

Employment and leadership restrictions

Employers – including the Australian government – are also failing to include people who live with disabilities; and this under-representation is weakening the voices of disability rights within workplaces and national policy, Mr Innes highlights.

Despite 50 percent of the general population living with some form of disability, people from this cohort are employed 30 percent less than those who do not live with a disability. Within Parliament, this under-representation is more pronounced with only one out of 200 Parliamentarians currently living with a notable disability.

The issue has persisted as unemployment rates hit an all-time low, begging the question, ‘when – if ever – will positive change occur?’.

“If ever there was a time to find employment for people living with disabilities it is now – but it is still not happening,” Mr Innes said.

“Statistics show that people who live with disabilities make for better employees. We take less sick leave, make fewer workers’ compensation claims, and remain in our positions for longer. Yet we are still being held back by limiting assumptions about what we can and cannot do.”

By the same token, statistics show that people who live with disabilities are missing out on leadership or high profile roles.

“We are significantly under-represented in senior management, on screen and in the media, which is a shame given the value we bring,” Mr Innes said.

“Moreover, there is a saying in the gender equality movement which also applies to disability: ‘you cannot be what you cannot see’. While there some examples of high profile people that live with disabilities – Dyllan Allcott, Kurt Fearnley etcetera – you can count them on one hand.

“I am concerned that if we don’t have enough examples of leadership amongst this cohort that people who live with disabilities will not feel inspired to push themselves forward into leadership or prominent roles.”

In light of these issues, Mr Innes says it is vital the community takes bigger steps towards embracing people that live with disability.

“The needle isn’t moving with our effort alone, so we need a big change in our collective mindset to make sure positive change happens,” he concluded.

Graeme Innes is a Board Director, Human Rights Activist and Cricketing Legend who proudly lives with disabilities.

Hear more from him at the National Disability Summit hosted by Informa Connect, where he will join a stellar line up of speakers, including NDIS Quality and Safeguards Commissioner Tracy Mackey and 2021 QLD Australian of the Year Dr Dinesh Palipana.

This year’s event will be held 15-16 August at the Crown Melbourne. Learn more and register your place here.

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