Jane Rosengrave banged the table to emphasise what she was saying.

“I don’t like institutions at all. I can imagine that if it was the government that lived in these institutions in those days, I can imagine that if they were sexually or physically abused—had soap rubbed in their mouth—I bet they would not like what we had to put up with. I bet they did not like that at all. I can imagine if the government was living in these institutions and the children in the institutions were living on the outside. They would know what we went through in these institutions, with sexual and physical abuse, having soap rubbed in your mouth, and having the strap—’Charlie the strap’—and all that.”

The Senate committee inquiry had just heard Jane’s detailed testimony of the abuse she suffered in a variety of institutions from the age of six. Her anger was palpable, as was her courage. The story of what happened to her, and other children, was appalling and a reminder that this was, and is, the reality for many disabled people.

Her words have rung loud in my head since the committee hearing. They echo Rayna Lamb’s words at the previous hearing.

“One of the most profound ways that people with disabilities are left vulnerable has nothing to do with our disabilities. Our disabilities do not inherently make us vulnerable. Attitudes towards us, and the value that is placed upon us by society is what makes us vulnerable. We are not seen as second-class citizens. That would be a step up. We are seen as third-, fourth-, or fifth-class citizens. We are seen as less than human. We are seen as mistakes. We are seen as everybody’s fears or nightmares. We are seen as fates worse than death. We are not seen as human.

It is this that leaves us vulnerable, not our disabilities. We are left vulnerable because we have no power over our lives, because able-bodied people design and maintain the systems that control us, that keep us disempowered. All of the agencies and organisations—the nursing homes and the institutions—that we are dependent on are developed, staffed and managed by able-bodied people who do not have to live in our world.“

And I wonder how much is really changing. Last week, the NDIS kicked off in the Blue Mountains and Penrith with much fanfare from the Every Australian Counts campaign. Parents, politicians and service providers all talked about how wonderful the NDIS is and how much will change for people with disabilities. One person receiving supports from the NDIS spoke, outlining how much things were much better. One.

The shut down of all NSW public disability services didn’t rate a mention, nor the proposed sale of Home Care. The lack of housing options for disabled people wasn’t part of the celebration, nor the limitations of the NDIS.

The NDIS is intended to provide vital supports for disabled people to make sure that they can have access to the same kind of life that non-disabled people have. But the NDIS is legislated specifically to not cover issues such as health, education or housing. The NDIS won’t fund the local council’s aged and disability worker, or accessible train stations, or disability workers at school, or support when leaving prison, or advocacy, or training, or, well, you get the idea.

All of those areas of our social supports are intended to be covered by other public services, but in NSW, the future of those services is unclear. The National Disability Strategy is intended to deal with this, by mandating accessibility, action on transport, jobs and attitudes, but the ‘Driving Action 2015-18’ part of the strategy is nowhere to be seen. In NSW, all state government agencies and departments have to do a Disability Inclusion Plan by the end of this year, and local government by 2017. But excuse my cynicism about yet another plan, with little or no money involved. There wouldn’t, of course, ever be a degree of cost-shifting between state and federal governments because that never happens.

Already, a million NDIS forums and open days and seminars have come to town, to explain how the NDIS works. The focus for this part of the NDIS is people under 18, so some of this conflict around who funds what will inevitably arise, particularly in education, as NSW disability services hand over to the NDIS. These open days are also spruiking various service providers and what they have on offer – choice and control, after all, is to be found as a consumer purchasing what is needed in the marketplace.

To date, there’s been no data on exactly how this magical disability market is working – whether there has been a ‘cherry-picking’ of people with specific disabilities, or actual choice being offered.

There’s no information about whether ‘people on the fringe‘ are being supported or even know about the NDIS. When asked, a spokesperson for the NDIA said:

“Many DSOs will run peer support groups for people with an intellectual disability. Others are implementing strategies to reach beyond traditional networks and connect with sometimes marginalised and vulnerable individuals, such as those living in boarding houses or involved in the criminal justice system. Both NSW CID and First Peoples Disability Network are funded to act as a DSO. A full list of DSOs is available at http://www.ndis.gov.au/document/1176“

There’s little information about which organisations are providing services but plenty of anecdotes about large services muscling out smaller ones.

In the meantime, people can pay $9900 to go to a special School for Social Entrepreneurs NDIS Accelerator course to learn all about the ways to make a profit out of disabled people, because of course that’s what the NDIS is all about.

Perhaps, instead, it’s worth asking what would services look like that were designed by Rayna and Jane? How many service providers in Australia are led by disabled people, like this model in Wales? How many put the rights of disabled people first, second and third; the right to live somewhere they choose, to be safe in their home, to not be seen as mistakes or broken?

Asking some of those questions, rather than just accepting the hype about the NDIS, should be the norm, rather than the exception. With a social reform as big as this, and on which so many hopes rest, isn’t it worth making sure that this is an NDIS that works for everyone?