Parents of kids with disability more likely to be burnt out, study finds

Parents of children with disability more likely to experience psychological distress, survey finds A major Australian study has found parents caring for young children with disability are twice as likely to experience psychological distress and nearly twice as likely to say they are not in good health. The results also show they are 50 per cent more likely to feel parenting is demanding, compared to carers without children with disability. The figures were revealed in the Parenting Today study — a survey of more than 10,000 carers conducted by the Parenting Research Centre. "This has significant consequences, not only for the parents and their mental health, but for the safety and wellbeing of the children," Skye Kakoschke-Moore, CEO of Children and Young People with Disability Australia (CYDA), said. In her work with CYDA, Ms Kakoschke-Moore said she heard regularly from exhausted parents who were at breaking point. She said if support was not available, they may have to make difficult decisions. "They may be left with no other choice but to relinquish their child into care," she said. The survey asked more than 120 questions across seven topics including emotional and physical wellbeing, the types of support people were accessing and family structures. The results compared the experience of nearly 5,000 respondents who said they were caring for a child under nine years old. Of those surveyed, 600 were parents of kids with a disability. It comes as the government prepares to divert some families from the National Disability Insurance Scheme (NDIS) onto the new Thriving Kids program, which begins in October, and will be jointly delivered by the federal, state and territory governments. The reforms are intended to move some children with lower support needs into mainstream and community-based supports, while the NDIS focuses on those requiring more intensive assistance. In its first phase, the $4 billion program will provide general supports, including online information and parenting courses. Later stages, which are scheduled to be completely rolled out by January 2028, will offer more targeted supports such as access to therapies in places like preschools. But for some families, the changes have created uncertainty about whether the new system will provide the support their children need. Parents feeling loneliness, frustration and guilt The latest research has revealed 48 per cent of parents caring for children with disability experienced loneliness, compared to 31 per cent of parents whose children did not have disability. It also showed many often felt frustration, guilt or that they were not meeting their own expectations of parenting. "The risk there is, that when we're feeling frustrated as parents, we're more likely to escalate into more irritable, hostile, aggressive reactions to our children,"lead researcher Dr Catherine Wade said. "There's something going on for parents right now that's putting [them] under stress, that's making parents feel that they're not doing a good enough job," she said. She pointed to multiple factors adding to the strain, including cost-of-living pressures and confusion about where supports would come from. "[It's] a lack of assurance about what the future holds for them and for their child," she said. 'In survival mode every day' Sarah Galea is one of those parents feeling burnt out. The Sydney mum adores her three young sons who all live with disabilities, but she also admits managing their complex needs can be hard. "You just feel numb," she said. "I live in survival mode every day." As well as supporting the boys to navigate their emotions and at-times complex behaviours, Ms Galea also assists them with tasks neurotypical children of the same age would likely do independently, like feeding and personal care. Ms Galea had to change careers to be available to support her boys at short notice, if school or daycare called. "The phone will ring now, and my palms get clammy and sweaty, and the heart rate increases," she said. "You know you're managing the next major meltdown." While Ms Galea has seen her sons progress thanks to feeding and speech therapy funded by the NDIS, she does worry what will happen to those supports if they are moved onto Thriving Kids. "We just now have constant fear of the unknown because we don't know what's happening to our boys' plans,"she said. Medical professionals have suggested she seek help for burn-out but she said she was struggling to find the time. In a statement, a government spokesperson said the proposed model for Thriving Kids was designed by an advisory group consisting of experts from a range of sectors including paediatrics, disability, early education and healthcare. "Members also consulted through their networks and the national model proposed by the advisory group was tested with groups of families with lived experience," the statement said. "The advisory group recommends that Thriving Kids will be the best way to help parents and families build their own skills and networks and better connect with targeted services that support Australian children." Parents reach out to support programs Despite high levels of burn out, the parents in the surveyed group were actively seeking information or advice online and were more likely to participate in parenting or peer support programs. The My Time program is one such peer group providing support to parents of children with disability through fortnightly sessions, usually led by a facilitator. The program, which began two decades ago, operates 180 groups across Australia both in person and online. "It's a bit of a lifesaver," Senior Program Manager, Jenny Boadle, said. "They feel more connected, they have a sense of belonging and hope for the future." Each session is directed by the needs of the parents and focuses on the day-to-day challenges they might be experiencing, such as navigating sleep or continence issues. Ms Boadle acknowledged that time pressures and a lack of childcare options made it difficult for some parents to attend. But she said there were always people on hand at the sessions to mind preschool aged children so their parents could take part. "Parents that come tell us that once they realise taking a little bit of time out for themselves and connecting with their peers is just so valuable," she said. "They can go back and feel more confident in caring for their children." Ms Kakoschke-Moore said that parenting courses simply would not help everyone. "[They] can be really valuable, particularly when families are first embarking on their journey of caring for a child with disability," she said. "But parenting programs are no substitute for one-to-one support or respite and to prevent families from entering burnout." For Ms Galea, who already runs on an average of five hours of broken sleep a night, the idea of finding time to attend a peer support group or parenting course was laughable. "You need 24 hours in my shoes and then you won't offer me that course,"she said. Ms Kakoschke-Moore said that it went without saying that not all parents of children with disability were in distress or that these parents loved their children any less. "What it pointed to was that parents in this cohort needed to know support would be there for them when they did reach out," she said.