Louise Anderson’s son, Dean, has severe autism, an intellectual disability and epilepsy. She is brutally honest about what life would be like for her family without the regular overnight breaks they receive from caring for Dean.
“I wouldn’t be married. We’d be divorced. We simply wouldn’t be a family unit. Dean would be over to the system. I hate to say that and I don’t want to say that. There isn’t a parent I know that wants to even think about that, let alone verbalise it. But that’s the truth. It’s where we’d be.”
Louise describes her teenage son’s daily care needs as complex and relentless, and says short-term accommodation was the answer to their prayers.
“It’s essential, it’s important. It is a lifeline to our family. It really is.”
At least 50 families relinquish their child with a disability each year in Victoria. Could the creation of more short-term disability accommodation options help some of these desperate families?
Dean attends a short-term accommodation home for children with disability, run by not-for-profit Catholic organisation, Villa Maria Catholic Homes (VMCH).
VMCH Accommodation Services Senior Manager, Kristy Simmonds, says while there is a move towards providing people with a disability support in their homes, short-term accommodation still plays an important role for many families.
“Short-term accommodation options outside the home are crucial for many families to continue to be able to support their child with a disability,” she said.
“Families need to have the choice about the type of short-term accommodation that is right for their child and family. Overnight support in the home is not the right option for all families.”
Louise says Dean’s time at Lilydale is a lot more than just a break for mum and dad. Louise jokes that Dean also gets a break from his “nagging parents”.
It’s even more than that. The family works closely with the team at Lilydale to help Dean develop skills that help him become independent as possible.
“It really is a warm, safe, caring environment where he can generalise those skills that we are working on at home as well. And hopefully eventually move to where he can actually be as independent as he possibly can be,” Louise says.
“Our aim for him is to be as happy and independent as he possibly can be and this house provides the interim step.”
Children develop and learn so much when they are in a safe and fun environment away from home and their family – whether it is at camps or sleepovers. Children with complex disabilities are no different except they are included in these activities a lot less frequently. Without short-term disability accommodation, many would miss these chances to socialise, play with other children and learn new skills away from mum and dad.
On the day Louise drops Dean off at Lilydale short-term accommodation, they both look comfortable and relaxed as they say goodbye to each other. Dean gives mum a peck on the cheek before she leaves.
Over the next three days, Louise plans to recharge and re-acquaint herself with her husband. Tonight is a pyjama night with a glass of red wine.
Meanwhile, Dean will be given the chance to enjoy different activities. Disability support staff will also work with him on goals determined by his parents. He will be expected to do many things independently or with a bit of support.
It has taken a long time to get to this place, Louise admits.
The Andersons live in an area with few short-term accommodation facilities available. They chose VMCH because it had an outdoor area that included a playground and trampoline. She says the family stay because of the staff.
Louise points to a staff member who is helping a young boy struggling to zip up a jumper. The carer is slowly and methodically working with him to complete the task. She encourages him and gives him step-by-step instructions as they get the job done together.
Louise said that this is typical of how staff treat each child.
“They grasp very early on that this is an opportunity to teach children independence. They don’t just come here and get away with no boundaries, no rules. Anything that I have asked them to work with Dean on – like his toileting … his rewards program. They have just carried on seamlessly here. It’s great.”
July marked the fifth anniversary since the NDIS started at four trial sites in Australia. The $22 billion scheme aims to give people with a disability choice and control in every aspect of their life and one area in need of attention is housing.
About 28,000 Australians with disability are expected to be supported by NDIS funding for Specialist Disability Accommodation once the scheme is fully rolled out. It will create a $5 billion disability housing industry boom in the next five years. It is still unclear what impact the NDIS will have on short-term disability accommodation.
Kristy hopes to see more short-term accommodation options for families in Victoria. She says VMCH would like to increase its own stock of short-term accommodation houses. Currently it runs four for children and one for adults.
“VMCH sees these services as a lifeline to many families who might otherwise feel so overwhelmed in their caring role that their only choice is to relinquish their child,” she said.
“Demand for short-term accommodation is increasing for families juggling a child with a disability, other children and their work commitments.”