Michael Sullivan, chairman of the NSW Council for Intellectual Disability and board member of national advocacy group Our Voice.

Michael Sullivan, chairman of the NSW Council for Intellectual Disability and board member of national advocacy group Our Voice. Photo: Christopher Pearce

Michael Sullivan has his own name for the NDIS, one that he believes better explains the scheme's purpose.

Speaking at a disability conference earlier this month, he said a National Disability Insurance Scheme "sounds like something might go wrong".

"How would that make you feel?" he asked the crowd at Geelong's Deakin University, to boos and groans.

"I say the 'I' in NDIS should stand for 'investment'. We are worth the investment.

"To move forward we need people to believe in us, to back us up and create opportunities. When people have confidence in us then we start to believe in ourselves. We need to change the words to change the thinking."       

Mr Sullivan has an intellectual disability. Aged 49, and a leader three decades in the making, his speech has made something of a poster boy for the push to recognise that different types of disabilities have different needs, and require different types of advocacy and support.

Earlier this month the federal government announced details of a shake-up of the disability sector that will force a radical overhaul of how the sector is funded.

Where there were once 11 bodies – including Inclusion Australia for people with an intellectually disability and Vision Australia for people with vision impairment – there will be six bodies defined by demography, rather than need. Collectively, they will get $3.6 million, 40 per cent less funding than under the old model.

Mr Sullivan is board member of Our Voice, a national disability advisory committee that may now cease to exist, and chairman of the NSW Council for Intellectual Disabilities.

He is passionate about advocacy and, as shown at the Geelong conference of advocacy group Valid, a powerful voice for people with an intellectual disability.

But Mark Pattison, executive director of Inclusion Australia, said following the funding cuts there will be no more Michael Sullivans. Until now, he said, helping members such as Mr Sullivan develop into leaders has been a priority.

"We train them on how to speak on behalf of others and present ideas, how to negotiate with people in a policy development and implementation environment," he said.

"The Commonwealth government has clearly said to people like Michael, 'We don't value you. We don't want to listen to you and we don't want to give younger generations the opportunity to do what you've done'."

Stepping on to the Deakin University stage, Mr Sullivan looked diminutive, but his first words were firm and clear: "I am Michael Sullivan. I am here as one of you."

What followed was a rousing speech to an audience of hundreds of people from across the country with a mix of intellectual and physical impairments. It drew a noisy, enthusiastic response. People later thronged around him.

Mr Sullivan's idea of calling the program a national investment scheme became an unofficial theme for the three-day conference, embraced by Victorian Public Advocate Colleen Pearce and acknowledged by a senior representative from the National Disability Insurance Agency, which administers the NDIS. During her presentation Meg Parsons said "insurance" before jokingly correcting herself as the audience groaned. "Sorry," she said. "I hear it should be investment."

Mr Sullivan had many kindred spirits at the conference who determinedly speak into microphones, not letting cerebral palsy, severe speech impediments or cognitive impairments prevent them from asserting their views and championing their rights.

Like many in the sector, Mr Sullivan is angry at the government cuts. "But we need to get past our anger and do something about it," he said.

"We need to keep pushing and saying it's about us. Start pushing those doors open, sit in the gallery at Parliament and make our voices heard."