Home is where Ethan's heart is

The saying “Home is where the heart is” has never been truer for the family of young Lakelands artist Ethan Ford.

Ethan, who has cerebral palsy and is primarily non-verbal, captured the heart of the local community last year when his mum Ashlie Miles put out a call for canvases to help the passionate painter stage his first art show in Rockingham.

Now another dream has come true for Ashlie and Ethan thanks to the NDIS and a little-known type of special funding that helps keep families together when one family member has very high support needs or extreme functional impairment.

For many years, Ashlie, Ethan, and Ethan’s younger siblings Ella (2) and Ollie (1) had been making do in rental properties that failed to meet Ethan’s specific needs.

The improvised accommodation was not especially accessible, which made it harder for single mum Ashlie and a team of visiting carers to look after Ethan.

But deep-down, Ashlie knew that moving Ethan into shared disability housing and separating the family wasn’t the best option for her son.

“I’ve honestly never pictured my life without Ethan. He plays such an important role in our family,” Ashlie said. “It would have broken our hearts if he’d moved into a home without us there.”

Everything changed when Ashlie learned about Appendix H – Shared Living Arrangements, a relatively new addition to the NDIS.

Appendix H – Shared Living Arrangements enables NDIS participants to stay living with their primary carer, such as a parent or spouse, without losing their Specialist Disability Accommodation (SDA) funding.

Without Appendix H, the standard SDA rules have the potential to force households apart.

Once Ethan’s new NDIS funding under Appendix H was in place, Ashlie worked with GR8 Disability Housing, based in Willetton, to find a modern, four-bedroom SDA home purpose-designed for Ethan and the whole family.

“I had been praying for an opportunity for our family to stay together,” Ashlie said.

“We feel incredibly lucky, and Ethan, Ella and Ollie are super excited about their new home and all the memories we can make here.”

When the family picked up the keys in May, Ethan was smiling in excitement and couldn’t wait to chase his little sister down the super-wide hallways that easily accommodate his wheelchair.

Another big design feature is the accessible kitchen with its adjustable bench tops, where Ethan will be able to carry on with everyday tasks far more independently than before.

Since moving in, the family have been enjoying decorating their new home, movie nights and, of course, painting together.

Stephanie Virgo, Director at GR8 Disability Housing, said Ethan’s story highlighted what a difference accessible, fit-for-purpose Specialist Disability Accommodation could make to a family caring for a loved one with very high support needs.

“Ethan and his family now have a wonderful new home with the accessibility features and assisted technology that is going to make daily life easier,” she said.

“The NDIS can be complex and every participant is different, so getting help to navigate the system and find tailored accommodation solutions is vital.

“When Appendix H – Shared Living Arrangements was introduced into the NDIS it recognised opened up welcome new options for NDIS participants and their families.”