Family Faces ‘Devastating’ Loss of Support for Son with Disability

A mother says she faces a “devastating” loss of short-term accommodation for her son with disability, and is calling for greater access to this support under the National Disability Insurance Scheme.            

Louise Anderson spoke to Pro Bono News about her 18-year-old son Dean, who has severe autism, an intellectual disability and epilepsy.

“He’s non-verbal. He has challenging behaviours and he’s a very complex individual who has quite relentless caring needs,” Anderson said.

Dean regularly attends a short-term accommodation home for children with disability, run by not-for-profit Catholic organisation, Villa Maria Catholic Homes (VMCH).

This support, which Anderson describes as a “lifeline” to her family, has become a vital part of Dean’s routine and a means for him to build his social skills.

“This has become very evident in the past two to three years that he’s settled in there – it’s his home away from home,” she said.

“He loves to go there. He loves to come back home. We love him going there there because we know that he is well cared for, and it’s not just babysitting.

“Respite is not funded in the NDIS, but I see this short-term accommodation not as respite, but as an independent-living skills house where Dean can learn skills for life while having social inclusion as well.”

Anderson said the future of short-term accommodation for Dean was uncertain now he was 18, and would be forced to move out of the children’s home he was currently in.  

“A loss of this support would be devastating,” she said.

“And I’m facing that at the end of this year, because the way most of these houses are structured means you are thrown out to adults facilities when you turn 18.

“There’s not a lot of adult-facilities like this out there, and I just really don’t know how we’re going to survive as a family unit to be perfectly frank.”

Not only does Dean need the time away from his parents, they also need time away from him to have a well-earned break, Anderson said.

“We also need a place where he can actually learn these skills of preparing his own meals and making his own bed. All the sort of stuff away from home to prepare him for the future,” she said.

“And I just don’t know where we’re going to end up. There’s camps you can go overnight, but that’s not the same thing, they are a leisure activity. They’re good, but they’re not building the independent skills that we’re looking for.”

Dean’s NDIS plan originally capped short-term accommodation funding at 24 nights a year, and Anderson said while he was eventually funded for more nights than this, it was unlikely Dean would get this level of support again.

She called for greater access to short-term accommodation for NDIS participants who were not yet ready to transition into permanent Specialist Disability Accommodation (SDA).

“I’ve got this big vision in my mind, because currently we have these short term options or you have to jump completely into something like SDA, but Dean’s not up to that yet – he wants to go to this facility but he wants to come back from it too,” she said.

“And unfortunately at the moment, there has to be nights available for short-term accommodation, but ideally it should always be available so we can transition him. He might spend a whole month there and then come home for a week.

“I would like to see him spending more and more time there over a few years and then I can go ‘wow he’s ready for this full time’. But he needs to first show he can operate independently and outside of the family home.”

The National Disability Insurance Agency describes short-term accommodation as a service assisting participants with complex needs to maintain their informal supports to continue living at home, if this is their preference.

An NDIA spokesperson told Pro Bono News adult children with disability still living at home could continue to receive funding for short term accommodation supports.  

“Approximately 1.3 per cent of NDIS participants access short term accommodation supports. This funding tends to be used for short periods of time to enable participants to spend some time in a different environment before returning home,” the spokesperson said.

VMCH accommodation services senior manager, Kristy Simmonds, said there was a need both for greater short-term accommodation funding for NDIS participants, as well as funding for providers to build short-term accommodation facilities. 

“What families tell me is that short-term accommodation is needed, and while they have been offered – through the NDIS planning process – in-home respite, they still want out-of-home respite funded through the scheme,” Simmonds told Pro Bono News.  

“What the government isn’t doing now though, is providing funding for the building of facilities. So if a service provider such as us builds a respite house, we don’t get any government support for that.

“And if families with disability are saying they need it and there’s not enough of it, it highlights a need for families to be provided greater access to it in their local community, because they can be quite spread out depending on where you live.”  

Anderson said she desperately hoped she could find a suitable short-term accommodation option for Dean next year.  

“I really do want participants like my son to be as independent as possible, so there’s much less strain on the system later on,” she said.

“Dean’s goals are all centred around communication and independence and social inclusion in the community. And these houses are a really good way of cementing those goals.”