A LAKE Macquarie grandmother says she has had to relinquish the care of her severely autistic and disabled grandchild due to the lack of funding, support and respite offered by Family and Community Services (FACS) and the National Disability Insurance Agency (NDIA).
The woman, who cannot be identified, said her grandchild’s National Disability Insurance Scheme (NDIS) package had been slashed from $96,000 to $32,000 in April. The funding was supposed to cover some services, equipment and respite care.
“The NDIS offered the new package in April. I told FACS it wasn’t going to work, that it wasn’t enough,” she said. “They refused to appeal it. That package lasted for nearly two months before there was nothing left.”
She said their situation had been complicated by her own ill health, and because she had been unable to work for four months while recovering from a motor vehicle accident.
The respite funding had been chewed up during her subsequent hospital stays, and neither FACS nor the NDIA had been willing to offer further support.
“I couldn’t get out of bed, and we needed 24/7 care,” she said. “The respite service provided respite, but then they couldn’t do any more because there wasn’t enough funding, and they were owed more than $50,000.
“She is a wonderful kid, but she requires a lot of care. She has high support needs.”
A FACS spokesperson said decisions regarding the supports within a person’s plan were the responsibility of the NDIA.
“Should a participant or their family/carer feel that their plan does not meet their support needs, they are able to seek a plan review through the NDIA,” the spokesperson said.
The grandmother had relocated from the central west of NSW to Newcastle to become the child’s guardian in October, 2016. But the situation became untenable about a month ago.
“I wasn’t coping,” she said.
Once the woman made the “heartbreaking” decision to relinquish care, FACS had put her grandchild into a motel room with 24/7 care. She understood it cost FACS about $15,000 in total to house and care for the girl each week, although FACS would not confirm this.
The woman said it would cost the NSW government far less to let the child remain in her care with “adequate” funding for respite than it would to keep her in out-of-home care.
“I work full time, and study part time – I am doing a masters in autism studies,” she said. “We don’t have a family network that can come and help out. The respite was adequate with the previous package, but it just wasn’t enough in the latest one. It dropped down to four hours a week, which, for the problems my grandchild has, and our situation, was just not enough.”
The woman feared many children were “slipping through the cracks” and being placed in out-of-home care due to the lack of funding and support.
To have to wait for the NDIA and FACS to stop arguing over who was responsible was “insanely cruel,” for both her, and her grandchild.
“They are not doing their jobs,” she said. “All my granddaughter wants is to come back home.
“I know NDIS funding has been cut right across the board. And I know I’m not the only carer or guardian who has had to relinquish care of their child because of the shortages in funding.”
A FACS spokesperson said they were committed to providing vulnerable children in NSW a permanent, loving home for life.
“The cost of out-of home-care depends on a variety of factors, and placing children into emergency accommodation is considered a last resort only when short-term carers are not available,” FACS said.
An NDIA spokesperson said decisions about the type of supports included in a participant’s plan were made based on what was deemed “reasonable and necessary” for them.
“If a participant thinks a decision made by the NDIA about them is wrong, they can submit an application for an internal review,” the spokesperson said.
“Responsibility for the voluntary out-of-home care needs of children continues to belong to the state government. Where the child has a disability, the NDIA will work closely with child protection services to continue to provide reasonable and necessary supports for any additional needs arising from the child’s disability.”
The grandmother said she was unable to ask for a review because her grandchild was in the minister’s care.
“I made the decision to not take over guardianship so that FACS would legally assist us,” she said.
“Previously she was in my care for three years, and I had taken guardianship. Besides the enormous court costs, getting assistance through DOCS – at the time – was difficult because I was the legal guardian.
“FACS’ response to my requests for a review was that they would do everything to maintain [my granddaughter’s] placement with me.
“This obviously did not happen.
“They are now stopping me from seeing her more than once a fortnight, and won’t tell me where she is.”