‘If I don’t get this, they’ll die’: Gidgegannup mum fears the worst for her twins over lack of NDIS support

A Gidgegannup mother fears her profoundly disabled 17-month-old twin daughters could die because of a lack of NDIS support. Maddison Robson’s daughters Milly and Daisy have severe dysphagia and global development delay, meaning they rely on being attached to feeding pumps 24/7 and have the emotional regulation of a 0-3 month old. Keeping them alive comes at a huge cost as the pair need to be monitored around the clock to stop them from choking or getting tangled in their tubes. In the latest review of the twins’ disabilities, which was requested by Ms Robson, the National Disability Insurance Scheme would not fund 24/7 care, only providing both children with an additional six hours of overnight support worker assistance. This amounts to 11 hours of overnight care per week plus three hours of care every weekday. Ms Robson and her partner have been funding support workers for the rest of the hours as it’s not feasible for her to monitor the twins by herself 24/7. She said her family only had less than a week’s worth left of savings before they were out of options. “We have support workers, two at night and then two in the day,” Ms Robson said. “We have about $20,000 in savings and we use about $30,000 a week so we’ll get through this week and that’s all I’m thinking about right now. “We’ll have to go to hospital but even going to hospital we will still have to pay support workers because their needs are so high. I don’t know what we’re meant to do.” Feeling like there was nowhere else to turn, Ms Robson sent a letter to Federal Health Minister Mark Butler calling for an urgent escalation of her case. “To me this is a black and white situation, like I don’t see how there is a grey area . . . this is a necessity,” Ms Robson said. “If I only feed them for the amount of time that we’re funded, they will die from dehydration within 48 hours. If I monitor them myself, then they will die from aspiration, because it’s not safe and they move.” In its decision, the NDIS said overnight care was a normal part of caring for children and the twins’ medical conditions had “unestablished permanency”. Doctors suspect the twins’ condition is caused by a genetic abnormality but that can take years to diagnose. “Interrupted sleep and overnight care, although highly undesirable, is an expected part of caring for young children, particularly twins, and the NDIS does not fund supports to alleviate parental sleep deprivation,” the outcome report read. The NDIS assessor also mentioned that support to manage their acute medical risks fell under the health system and suggested whether being admitted as an inpatient or having community nurses visit the home was an option. “Alternatively, self-funded options such as an AuPair may suffice for an interim period of time,” the report continued. Mr Butler’s office has referred Ms Robson’s concerns to the National Disability Insurance Agency. NDIS Minister Jenny McAllister said “correspondence regarding serious matters is referred to the NDIA as a matter of priority”.