A Perth mother says trying to navigate the National Disability Insurance Scheme can feel like “banging your head against a wall”.

This lack of information has been largely attributed to the dismissal of Local Area Coordinators commonly accessed by families impacted by disability.

Vanessa Lennane, a mother and support worker for people living with disability, says the transition from the LAC system to NDIS’s current system has impacted on family’s access to information.

“Transferring over to NDIS now, they weren’t local at all and didn’t know the individual people,” she says.

“It just meant we didn’t get information. If you didn’t know about something, then you didn’t know about it.”

As of the December 1, 2022, the NDIS had more than half a million active participants, an increase of about 20,000 since September that year.

Of the half a million people signed up to the scheme, more than 92,000 are children under the age of seven, according to the National Disability Insurance Agency’s annual outcomes report.

Ms Lennane says the NDIS system is hard to navigate and lacks the information and support to help people access the funding they need.

“If you don’t have an LAC or someone equivalent, then you have no idea,” she says.

“It’s a terrible system. That part of it makes me really cross.”

Helen Whitford, mother to Devlin, similarly expressed concerns over a lack of information provided by the NDIS.

“Until you start searching, you don’t know those support services are even there,” she says.

“A lot of its word-of-mouth. When you talk to other people you start to learn what’s available.”

Cassie Cugley, a mother of three children – two of which are disabled – she faces similar hurdles.

“The process of accessing funding is incredibly hard, initial reviews are undertaken and very supportive, however, funding is often cut, reduced … due to one person’s opinion who has never met or interacted with the child or family at any point,” she says.

Ms Cugley says moving away from LACs has deteriorated personal relationships with support services and contributed to a lack of ability to receive reliable support.

“The process is very stressful on families,” she says.

“As a result families find themselves without the time, resources or support to follow the process through, and the child’s needs are then not met.”

However, families say it is not just this transition away from LACs impacting them and others in the community. They say funding cuts due to NDIS plan reviews have placed many families in precarious financial situations.

Helen Whitford, has had to appeal her son Devlin’s funding changes twice to NDIS.

In a phone call conversation with NDIS, Whitford says she was concerned about her son’s support needs and suggested he have a new plan and not roll-over his previous plan, as he transitioned from high school to adulthood.

“I tried to explain that he’d left school, so his support needs were changed and they completely ignored me and rolled over his plan with some small amounts of funding cuts as well,” she says.

“There seems to be an unwillingness on behalf of the NDIS or whoever provides the funding, to actually fund,” she says.

The NDIS has been contacted for comment.