People with a disability and their families spoke about their grievances with the National Disability Insurance Scheme at a forum in Sunbury last week.



The Make It Work forums, hosted by grassroots campaigners Every Australian Counts, were in capital cities and regional towns across Australia aiming to help fix those falling through the gaps of the system.



NDIS participants, Shadow Minister for Families and Social Services Linda Burney and Member for McEwen Rob Mitchell attended the event, along with a large number of those in the region affected by the scheme.



Many spoke about the delays in the planning process that involves a ‘planning meeting’ to identify what supports and services people need to receive adequate support – this could include equipment, assistive technologies, home modifications, cleaning and housing.



Planning approval can take months or years for participants, with some never receiving a response.



One woman in the audience spoke on the expense of respite care for her son who has a disability.



“We have many problems with the NDIS. One of them is respite. He [my son] loves to go to respite but now it’s over $3000 for a weekend. We can’t afford that!” she said.



“The council are pulling money from disability. Where are we going to get the services from, he gets council support four days a week.”



Another woman discussed the difficulty in submitting and receiving feedback on her application.



“Communicating with the NDIS, is like writing your wishes on a piece of paper, screwing it up, throwing it over a brick wall and just wishing for someone to pick it up and do something with it.”



There were also solutions offered by a woman on the lengthy processes.



“Why can’t there be timelines for the decision making process? Why can’t there be a checklist?”



Campaign director for Every Australian Counts Kirsten Deane said people were waiting too long to receive their plans.



“When it works well, it does change people’s lives. But what we’ve got to do is get it working for everyone,” Ms Deane said.



“We absolutely believe that the problems can be resolved, it’s just a matter of the people who have been elected to represent us, to get their butts into gear.”



Ms Burney said she attended the event to hear first-hand from the carers to find out about the problems.



“The biggest priority is driving enormous cultural change in across the organisation, and to put people with disabilities and their families back into the centre of all decisions,” Ms Burney said.



“In a practical sense that means having people who administer the program coming to forums like this and to sit down and talk to people to hear firsthand of the issues.



“Labor has a very strong view of employing people with a disability and we want to make sure that it’s not just the case with taxation and environment, but with the NDIA also.”



A man in the audience summarised his experience with the scheme.



“If you take a thirsty man in the desert and show him an oasis but he can’t drink the water, that’s what the NDIS is doing to us,” he said.



“We [people with disabilities] are also humans and we are suffering.”