‘Heartless’: NDIS turns down request to help autistic brothers

A local mum is pleading for help after the NDIS turned down requests for extra support to assist her two young sons who both have severe autism. THEIR STORY >>

ALTHOUGH she gets by on just two or three hours sleep a night, Katie Willing is an energetic and doting mum to her two young sons who have severe autism.

Every day is a challenge as her sons, Lincoln, 8, and Hudson, 6, have a range of health issues including a rare chromosome disorder which affects only 14 people world-wide, and are non-verbal.

They don’t sleep well, are easily distracted and upset, and Hudson has coeliac disease and risks malnutrition because of his diet.

It is a struggle to get the boys into the car and to school and to their many appointments with speech and occupational therapists, dietician, physiotherapist, psychologist or GP or to enjoy simple activities such as swimming or going to the park.

Ms Willing is shattered that the NDIS has turned down requests from herself and expert health professionals for extra support.

NDIS FUNDING

“We don’t ask for anything we don’t need,” she says.

“We’re fighting now so the boys can grow up safe and secure and when we’re no longer here to fight for them they will be able to live on their own and not be so dependent on the NDIS.

“The NDIS planners could read the reports from the educated professionals who work with our sons.”

Ms Willing’s husband Stephen has epilepsy and works full-time so is unable to help with the boys during the day.

She said only Hudson was allocated respite care overnight once a month.

“I still can’t get a break from my 24-hour, seven-day-a-week carer role, as only one child has respite.

“The NDIS could fund respite for both boys so I could get one full night of eight hours sleep per month, every month of the year.

“The boys need one on one care to ensure they are safe.”

Ms Willing said she did not want the boys to share their funding support because that “takes away their individual human rights”.

“If I could do all this by myself, I wouldn’t need to ask the NDIS for help,” she said.

Ms Willing has done 14 online courses on autism, disability support and the NDIS as well as co-ordinating countless reports on the boys’ NDIS plans.

“I want to be the best parent I can be and make sure I’m holding myself at the highest standard in the supports I provide them on a daily basis, so they are able to achieve an independent life as possible.

NDIS FUNDING

“In Hudson’s plan they actually call him Hunter twice. This shows how much attention they are putting into these plans and I was horrified that they couldn’t even get a simple name right.”

An NDIA spokesperson said it continued to provide both boys with a significant level of funding.

“Funding for a participant’s plan is based on the reasonable and necessary supports a participant requires.

“It is important to note that in some instances, it may be appropriate for participants living in the same home to share supports.

“Hudson currently has funding for overnight respite, and additional funding for Lincoln to also receive overnight respite support has not been funded, as at this time, there is no evidence this support cannot be provided to both boys, through Hudson’s existing plan.”

The spokesperson said decisions can be appealed.

Franklin MP David O’Byrne said the decisions being made by the NDIS were “heartless and do not take into account the genuine needs of her sons”.

“They are in direct contradiction to the medical recommendations and are at odds with the underlying purpose of the NDIS scheme.”

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