Sure, review the NDIS, but what’s really needed are better housing options

The National Press Club speech yesterday from National Disability Insurance Scheme Minister Bill Shorten was light on detail but firm on rhetoric about the scheme’s future.

The speech in part responded to recent pressure to cut life-saving support from disabled people — pressure from his own colleagues, from the conservative media’s disinformation campaign, and from the federal opposition.

Shorten started by talking about how he first learnt how disabled people and their families are excluded from the Australian community, a topic he has returned to many times over the years. He mentioned 2012’s Shut Out report, reminding the audience what life was like before the NDIS for people with disability.

He went on to outline his six-point plan for systemic reform of the NDIS and made a small announcement that the National Disability Insurance Agency (NDIA) would fund a pilot program in WA with Telethon Kids to see if early intervention for children with autism would improve outcomes and reduce costs.

The first item on Shorten’s agenda was improving and fixing the NDIA, “getting the culture right to stop the staff churn”. He cited a recent interim inquiry report from the Joint Standing Committee on the NDIS, which heard “stories of pain, fear, anxiety, frustration and exhaustion experienced by so many participants, families, carers and advocates in their journeys with the NDIS”.

Next is a long-overdue implementation of longer-term plans. People with disabilities have support for only a year or less, having to reapprove their disability annually, often with rounds of expensive reports paid for out of their support package. There is an IT trial underway in Tasmania that will hopefully help this change, as the NDIA’s ancient computer system is part of the reason plans must be reviewed every year.

Shorten’s third idea was to “address spiralling costs”. Supports must be “reasonable and necessary”, as some disability providers overcharge for goods and services. Shorten said the NDIS was not “fair game for the doubling or tripling of prices” and that people with disability are “valued clients, not ATMs”.

There was no more detail about how this would happen. There was no mention of a serious market regulation mechanism to stop the price gouging or the urgent need for an independent, strong consumer body.

The fourth item was another review of supported independent living (SIL). This is funding mostly used to support people with disability who live in group homes, and is the biggest expense in the NDIS, running at nearly $10 billion a year to support nearly 30,000 people.

The NDIS Quality and Safeguards Commission’s recent Own Motion report found that group homes could be awful places to live, with disabled people being repeatedly hurt by workers and others they live with. Disabled people have told the disability royal commission they have little say over their lives, with service providers deciding what they eat, when they go to bed, who they see, and what they do each day.

People with disability end up “captured” by a single service provider that owns the house they live in, employs the workers they use for support, runs the day program they go to, and controls every aspect of their lives. Increasingly people with disability do not want to live in group homes — but there is often little choice for those who need substantial support.

A review is fine, but what is needed is for the NDIS to fund more — and better — housing options. Its home and living policy is overdue and it’s hoped will bring some clarity to this out-of-date model of housing for disabled people, particularly by finally separating housing and supports so that the same disability service provider cannot do both.

Fifth on Shorten’s list was to target the misuse of NDIS funds, including unethical practices, with renewed focus on evidence and data. Again there was little detail provided, but the NDIS does fund programs, such as employment training, whose benefits aren’t based in evidence and which don’t work to get people with disability into a job. Whether this is what he meant isn’t clear.

The final piece in this reform agenda is the need for supports to exist outside the NDIS so disabled people can get fair access to mainstream public services.

This last item points to what much of the noise and fury surrounding the NDIS. The NDIS’ funding agreements with the states and territories are being renegotiated, determining which level of government pays for what. It is a chance for the Commonwealth to put pressure on states and territories to get serious about including disabled people in services such as health, education and transport.

For example, there’s been a lot of fuss about the fact that 10% of boys and 4% of girls aged five to seven are getting individualised support through the NDIS. This seems like a lot, and it is, but the individual amounts aren’t high. What it does point to is a problem with how disabled kids are faring when they start school. What are the state and territory education systems doing about this? And how is this going to be worked out in funding discussions?

Shorten spoke of the need for supports outside the NDIS — for the NDIS to not be the only game in town. And he is right, but getting the states and territories to deliver those supports isn’t going to be easy. What will be the result of nearly all the states and territories now having a Labor government?

This reform blueprint Shorten laid out didn’t say anything unexpected or unknown to disabled people, many of whom are busy with the NDIS review looking in detail at how to make the scheme work better, with a report due in October. The disability royal commission also has its final report due in September and will make recommendations about the NDIS.

At the end of his speech, Shorten said: “There is nothing I will ever do that is more important than securing the future of the NDIS.” What that will look like by the end of this year is still unclear.