Peter Gilmore (Gilly) with Helen at the new Lifeflight hangar under construction in August 2018.
Peter Gilmore (Gilly) with Helen at the new Lifeflight hangar under construction in August 2018. Bev Lacey

'IN LIMBO': Families fear struggle from reported NDIS change

A BID to improve access to specialist care won't address serious transport problems that remote stroke victims such as Peter Gilmore face.

Since October last year, Mr Gilmore has been able to access a range of disability supports through the NDIS.

But last week, he and his wife Helen were reportedly told the level of cover they would receive for transportation would be dramatically reduced under a new NDIS funding model.

Mrs Gilmore said the new $68 transport stipend would only cover one trip to Warwick each fortnight.

"That means that four days of care will go down to one," she said.

An NDIS spokesman said a participant's core budget included transport, but Mr Gilmore had elected to self-manage the transport funding in his NDIS plan.

"Mr Gilmore is unable to shift funding from other core budget supports to increase his transport funding," he said.

But Transport Development and Solutions Alliance business manager Jennifer Leigh said a number of NDIS clients reported receiving advice that transport costs would but removed from the core category.

"That's what we seem to be hearing from people," Ms Leigh said.

With Mrs Gilmore unable to work, the financial stress of frequent check-ups at the Gold Coast has been huge for the Goomburra since her husband's stroke in 2017.

She said life had changed dramatically.

While neurologists continue to assist Mr Gilmore with recovery, his wife said their lives were "in limbo".

"Specialists don't make any full decisions on if you can return to work and what you can do in the first two years while the brain is still trying to heal," she said.

Mrs Gilmore said the situation had put her family's mortgage insurance at risk.

"We are in limbo on whether they are going to keep paying our mortgage insurance. It makes you stressed," she said.

She also called for more recognition and support for people in caring roles.

"Everyone forgets the carer," she said.