‘Broken system’: NDIS plan leaves Geelong mum in crisis over what she says to be insufficient funding
A Clifton Springs mother caring for her adult daughter with two rare genetic conditions claims her new NDIS package fails to provide enough vital supplies including continence products.
A Clifton Springs mum says she has been pushed to breaking point after receiving her adult daughter’s latest National Disability Insurance Scheme (NDIS) plan, claiming it fails to provide enough funding to keep her daughter safe at home.
Keri East said the plan arrived in her mailbox at 4pm on October 6. She said she was so devastated by its contents and felt so helpless that within hours she had fallen into deep despair and was contemplating self harm.
“I just can’t see a way forward,” Ms East said.
“I’m at my wits’ end … exhausted, emotionally and financially.”
Her daughter, 26-year-old Baylie Foster, lives with two extremely rare genetic conditions – Phelan-McDermid Syndrome and Ring Chromosome 22 – which affect her mobility, communication and cognitive function.
A carer said Ms Foster had the abilities of an “18-month-old toddler in the body of a 5ft 9 adult.”
“She needs 24-hour supervision … due to her unpredictability and determination,” the carer said.
Ms East said her daughter’s health had declined since her new plan started, leading to three falls in the past few months.
“She’s unstable on her feet, falls frequently, has seizures, is non-verbal, incontinent and has no gag reflex,” Ms East said.
Ms Foster receives NDIS funding equating to more than $823,000 across 12 months.
But, Ms East said the plan did not include enough funding for basic items including continence products and catheter supplies.
According to a NDIS Plan Implementation sent to Ms East, Ms Foster is allocated 10 wipes per day which Ms East said “is not enough for someone who is incontinent”.
“Without proper support, she will end up back in hospital or worse.”
Ms East said she requested a review of Ms Foster’s plan in 2023 after her daughter’s health deteriorated following a three-month hospital stay.
“The NDIS should get out there and meet these people before making detrimental decisions” Ms East said.
“Maybe they could do yearly check-ups to see how they’ve progressed.
“That way they have more of an idea on where the money goes and who it’s more needed to.”
Despite an alleged 18-month process involving internal reviews and an appeal to the Administrative Review Tribunal, Ms East said the outcome was “outdated and inadequate.”
“This is about her safety,” Ms East said.
It is understood not all of the supports requested for Ms Foster were approved by the NDIA due to the current evidence not supporting those requests and some of the requests being for items not funded by the NDIS.
The prolonged battle, she said, has taken a severe toll on her mental health and left her fearing for the future.
“I’m doing everything I can to keep my daughter safe, but we can’t keep going like this,” she said.
An NDIS spokeswoman said ensuring participants, including Ms Foster, had access to the correct support was a top priority.
“Under the law we cannot provide funding for items that are not NDIS supports, such as medication,” she said.
“Participants or their nominees can request a review of a decision, or if their circumstances have changed, they may present new evidence to have a reassessment of their supports.”
If you or anyone you know needs help, contact Lifeline on 13 11 14.
More Coverage
Originally published as ‘Broken system’: NDIS plan leaves Geelong mum in crisis over what she says to be insufficient funding
Do you need to spend big for best NAPLAN results in Geelong?
