NDIS, a happy ending?

AS he accepted a shiny Golden Globe, Hugh Jackman spoke of his creative struggles shooting Les Miserables and how close he came to quitting.

If there was an award recognising the struggles of humble movie buffs, it would undoubtedly go to Canberra husband and wife David and Jenni Heckendorf.

While a date night at the cinemas is a simple pleasure most Australians take for granted, it's a near impossible feat for the Heckendorfs.

The couple are wheelchair bound, profoundly disabled with cerebral palsy, and rely on carers to visit their home each day to feed, dress, shower them.

The condition affects their movement, muscle control and speech, and Jenni also has epilepsy.

Jenni and David had their hearts set on seeing Jackman's stellar performance on the big screen this week.

But such an outing depends on whether they can get disability funding to cover the expense of a carer and the carer's availability and willingness.

They asked one of their disability care providers, Tandem, for an extra half hour of care time, worth about $15 in funding, so they could see Les Miserables, Jenni said.

"We're not going to the pictures, there was no extra time available," Jenni told AAP.

David said under the current system, disabled people are pitted against each other.

"It is very much a competition between potential and actual clients as to who has the greater need," he said.

The National Disability Insurance Scheme (NDIS) - which begins at launch sites in some states from this July, with a full rollout expected in 2018 - in theory will offer disabled people more flexibility, choice and control over their lives and care.

Jenni and David hope the scheme will make it easier to treat themselves to the occasional movie.

Tandem chief executive Cheryl Pollard told AAP it was heartbreaking not being able to fulfil such requests but the disability provider, which has 300 adults and 300 children on its books, could only do its best within its budget of government funding.

"There's no extra hours to put out, unless it was for an emergency. We always find money for emergency responses, but to go to the movies isn't unfortunately an emergency," she said.

Ms Pollard said at this early stage it was unclear whether NDIS money the couple could receive in the future would cover their primary care needs, let alone the odd leisure activity.

"The big question is, the money assigned through the NDIS ... for people like David and Jenni, is it going to be as much as they currently get?" she said, adding that the couple would be in the top category of need.

"This is my concern, that it won't go far enough ... I hope people aren't misplacing their hope."

Back in the Heckendorfs' kitchen, Jenni and David have bigger worries than missing a Hollywood blockbuster.

Their circumstances have changed recently, with David's part-time job requiring him to travel to Brisbane and Melbourne every month.

While his communications business, specialising in technology for the hearing impaired, covers the support staff he needs while away, the couple are struggling to get any extra hours for a carer to stay overnight to help Jenni, who requires more physical assistance than David.

On a wall hangs their wedding photo from 22 years ago.

They met as youngsters in Sydney.

"She's a cradle snatcher," David joked.

They share a laugh over who wins their wheelchair races.

"Mine's fast but not as fast as David's," Jenni says.

"Jenni actually beats me," he says.

Wheelchairs can cost the same as brand new family car.

A basic one costs about $18,000 but chairs with custom features can exceed $45,000.

David had to wait three years for a new chair but there's hope the NDIS will change that.

"Being in a wheelchair for 12 to 14 hours a day, it's important having the right one that's comfortable," David said.

"Imagine buying a pair of shoes, half a size too small and having to walk around in them all day everyday, that's what a wheelchair is like if you don't get it just right."

Canberra woman Michelle Lee, who also has cerebral palsy, knows how painful it can be in the wrong chair.

Michelle had to wait six years for her new hot pink wheelchair, which is worth $30,000.

"I suffered shoulder pain from my old one," she told AAP.

Unlike the Heckendorfs, Michelle lives with five flatmates and receives 24-hour support from Hartley Lifecare.

Her dream, once the NDIS is up and running, is to live independently in her own house with help from carers.

For more than 20 years she has lived in a group house with other people with disabilities.

"I love being able to do some things for myself, but I wish I could do much more," Michelle said.

"I want to be able to choose what I want to eat and not have to eat what everyone else is eating."

Michelle works three days a week selling the Big Issue magazine.

"I usually sell up to 15 issues a day," she said proudly.

"I enjoy myself and have lots of regular customers."

Earlier this month, Michelle came second in a sailing competition in Canberra.

"I love getting out of the wheelchair onto the boat and putting my arms in the water to cool me down," she said.

She wants to join a bocce club, but that's contingent on her carers being available to take her.

Her message to federal and state governments is simple: "Pull your finger out and give people with disabilities the opportunity to live happy and free lives."

Once fully operational, the NDIS is expected to cost about $15 billion a year.

For both sides of politics, there's been a heavy focus on where the money will come from.

David says it's important people look past the price and focus on how it will revolutionise lives and have a stimulus-like effect on the Australian economy.

"It's not a handout, it will help boost the economy and will create jobs for more carers," he said.

"It will help people like us participate more in general, like go to the movies every so often."