Questioning the NDIS

| December 6, 2017

Sunday 3rd December was International Day of People with a Disability (IDPwD). It’s a United Nations sanctioned day to remind us to listen to the important voices of people with disability around the world and to celebrate their achievements and contributions to our community.

Given the international significance of IDPwD, I thought it was an ideal time to share with you the story of Jenny Stanzel, the original founder of IDEAS (Information on Disability Awareness & Advocacy). IDEAS is a not-for-profit organisation that provides important information for Australians with disability and their families, helping people with disability make independent choices in life.

The inspiration behind IDEAS

In 1981, Jenny Stanzel was living in Tumut, NSW. As a person with disability living in a rural community, Jenny knew firsthand the value of access to independent information that would help her make informed decisions about her life.

However, there were no available services providing this kind of information in Jenny’s area. So she decided to do something about it.

“At that time, information in country areas was basically non-existent for people with disability,” Jenny explained.

“In 1983, I joined an association and we decided we would apply for funding through the federal government. We were successful and were funded to have phone and computer services with information available to people with disability, all around Australia.”

IDEAS was formed on the basis that people with disability, and their families, need assistance navigating a complex healthcare system.

“IDEAS gives people a look at the bigger picture to see what’s possible for them. For example, I don’t think a lot of people know the full availability of equipment that would suit them. If you don’t know where to start looking, you may never attempt to research equipment that can make it easier for you to use IT, wheelchairs, cars etc.”

IDEAS is facing an uncertain future  

In 2018, the NSW government plans to cut funding for IDEAS. The justification is that with the onset of the National Disability Insurance Scheme (NDIS), independent information providers for people with disability are no longer needed.

Jenny disagrees.

I’m very concerned about the NDIS and their way of thinking. De-funding IDEAS will have a negative impact because information for people with disability needs to be independent of government interest,” she said.

“I’m at an age now where I need to access these services. You can ring a government agency and they don’t understand the diverse needs of people with disability. I get this feeling that government agencies think all people with disability have the same needs. That’s wrong: it’s the complexity of the needs that are so critical because every person is different.”

Providing a voice for people with disability

Jenny believes that the NDIS can’t replace IDEAS because people with disability need to have a voice that’s free from government interest – and the government has no viable replacement.

“If the NSW government has decided that IDEAS isn’t worth funding, that’s when the crunch will come for people with disability. How are they justifying it? What is the government going to replace it with?

“People need to have a voice that is not attached to government interests. Someone they can call to ask for more information when they need it. If IDEAS is gone, how can people decide whether the service they are getting is what they need? If they can’t compare it to another service or ring them up and have a chat, who do they turn to?”

Message to the Premier

Jenny’s message to the Premier is to think again about the consequences of de-funding a valuable service like IDEAS.

“My message to the Premier is to continue funding IDEAS, because independent information might just save someone’s life. IDEAS has the full scope of information, they understand its importance and they want to grow each year to give people the confidence to keep phoning or emailing or going on the website. Please don’t de-fund IDEAS.”

The NDIS will only support around 400,000 people with disability, yet there are 3.96 million people with disability in Australia. What will happen to those remaining – especially when they no longer have access to information about the services they need?