While most couples in their 60s are planning for retirement, Louise and Darren Catton have been preparing for the day they can no longer care for their 22-year-old daughter, Mary.<\/p>\n
The Caboolture couple has spent years curating a care plan for Mary, who is non-verbal, that accommodates for her cerebral palsy, epilepsy, mobility issues and autism.<\/p>\n
But Ms Catton said their plans were up-ended earlier this year when they received notice that Mary’s National Disability Insurance Scheme (NDIS) care plan would be cut dramatically.\u00a0<\/p>\n
Ms Catton is 60, while her husband is 63.<\/p>\n
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The Cattons discovered in August that Mary’s annual NDIS funding would be cut by almost $250,000. (Supplied: Louise Catton)<\/p>\n
“As we got older, we needed to set Mary up as best we could so she could live her life as independently as possible from us,” Ms Catton said.<\/p>\n
“We know that we can’t retire just yet, or maybe ever, because now we don’t know what the future holds.”<\/p>\n
While the NDIS says adjustments to plans are carefully made to suit each participant’s needs, disability advocates believe Mary’s case is a drop in the “tsunami of cuts” to plans being experienced across the country.<\/p>\n
Funding cut threatens overnight care<\/p>\n
In a decision that has since been reviewed by the NDIS, the Cattons discovered in August that Mary’s annual NDIS funding would be cut by almost $250,000.<\/p>\n
Mary’s care plan included one-on-one, around-the-clock care from a support worker, with two support workers periodically assigned to help take her to appointments or to socialise.<\/p>\n
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The Cattons requested the NDIS carry out an internal review of Mary’s case. (Supplied: Louise Catton)<\/p>\n
The family said the looming funding cut meant they may not be able to afford overnight care and allied health services for Mary, and threatened the removal of two-on-one community access support.<\/p>\n
“With her uncontrolled epilepsy now, she needs two staff to safely support her outside of her home,” Ms Catton said.<\/p>\n
“If she has a seizure, we need two staff. If she has a meltdown, she needs two staff \u2026 she can become aggressive because of anxiety.”<\/p>\n
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The Caboolture couple has spent years curating a care plan for Mary. (Supplied: Louise Catton)<\/p>\n
In a statement, a spokesperson for the National Disability Insurance Agency said its priority was to ensure every participant had access to the services they required.<\/p>\n
“Participant support needs may go up and down,” the spokesperson said.<\/p>\n
“Providing time for a gradual adjustment to any changes to current supports ensures this is done carefully over time, with a focus on maintaining the needs of participants while building their capacity.”<\/p>\n
Process takes a toll<\/p>\n
The Cattons requested the NDIS carry out an internal review of Mary’s case, which this week saw her funding increased by almost $70,000 \u2014 but not restored to its previous amount.<\/p>\n
“We should not have had to have made the number of complaints we did to be heard,” Ms Catton said.<\/p>\n
Ms Catton said the internal review process had taken a toll on the family.<\/p>\n
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Ms Catton is concerned she may have to fight for her daughter’s funding each year. (ABC News: Lucy Loram)<\/p>\n
Mary is the youngest of four children. Her older siblings are Emily, 30, Oliver, 27, and Grace, 25.<\/p>\n
“Mary became so depressed that she was sobbing through the night due to the cuts that the NDIS made back in August,” she said.<\/p>\n
“Is the expectation that Darren and I have to mount this battle every single year? Are they going to be looking at cutting her funding every time even though nothing is changing?”<\/p>\n
‘Tsunami of cuts’ to plans<\/p>\n
Matilda Alexander, a human rights lawyer and chief executive of Queensland Advocacy for Inclusion, said the number of NDIS recipients reaching out for help to review their funding cuts was increasing.<\/p>\n
“This is a very worrying trend. We’re seeing a real tsunami of cuts to plans,” Ms Alexander said.<\/p>\n
“This has huge implications on day-to-day living and the ability to keep trusted long-term workers engaged in support employment.”<\/p>\n