For years, Dan Collins looked after his mother Ros as she got older.
But the tables turned two years ago when he acquired a permanent brain injury, forcing his mum — now 95 years of age — to become his full-time carer.
“Dan used to call in every single morning on his way to work to … see if I was alright. Now the situation is reversed,” ms collins said.
Dan, now 66, became ill in 2023 after contracting meningitis. The infection spread to his brain and he spent several months in hospital, including two months unconscious.
He needs support initiating most tasks, including those around the house, and requires supervision.
Ms Collins thought her son would be able to get support from the National Disability Insurance Scheme (NDIS), but because he’s over 65, he’s not eligible.
The day someone turns 65, they can no longer apply for the scheme. Dan was unconscious in hospital on his 65th birthday.
The age cap on the NDIS has long frustrated those it precludes and been the subject of discrimination claims. The government has repeatedly said the scheme was not set up to cater for older Australians and that is what the aged care system is for.
After trying various aged care options and finding them inappropriate, Ms Collins decided to bring her son home.
While Dan’s savings and superannuation currently pay for a private carer and other services such as day programs, those funds will soon run dry.
Ms Collins said she was furious Dan could not access the NDIS and was worried about what would happen to him when she died.
Carolyn Smith, senior advocate at the Council for Intellectual Disability (CID), said it was common for elderly people who have adult children with disability to have those kinds of fears, even if they’re eligible for government support.
She said while planning for death was difficult to think about, it was critical to not leave it “until it’s too late”.
“If a person with [complex] disability doesn’t have a plan for their future in place, the risk is that other people will make decisions on their behalf, and those decisions might not be what that person wants.”
‘I want to know he’s safe’
Giving her son Eli autonomy over his own life has been a huge focus for Perth mother Jaquie Mills, 56.
Eli, 34, was born with Angelman syndrome, a genetic disorder causing developmental disability and nerve symptoms, which impacts every aspect of his life, including cognitive function and speech.
He loves music, theatre, trains and volunteering at the Perth Fringe Festival every year.
“What I really love and respect about Eli is his passion for life. He’s got so many interests and he’s so enthusiastic about them,” Ms Mill said.
Eli has been living in his own home for 15 years, sharing with a long-time school friend of more than two decades and his wife.
“He has a really terrific life. It’s really important that [is] maintained into the future,” ms mills said.
To try and ensure that, Ms Mills set up a “microboard” — a group of people selected by Eli to assist him to make decisions for his future.
Microboards are legally binding, have a constitution and are usually made up of friends, family members, professionals or long-term community connections who are not paid.
“They’re an intentional strategy to prevent social isolation for people with disability and to ensure that they’re not left with only paid supports and services in their lives,” Ms Mills said.
“They’re also a really important safeguarding strategy. Members check in on people regularly and take note if there are any areas of concern … and they can take action.”
Ms Mills is now managing director of a non-profit organisation called Microboards Australia, which helps other families create communities around people with disability.
Though she knows Eli best, Ms Mills said bringing others into the fold to understand her son’s needs, preferences and communication style would be vital in maintaining his control over his future.
“When I’m no longer here, I want to know Eli’s safe … there’s so much potential still for him to fulfil,” she said.
Wills, trusts and family
Lawyer Stephen Booth, who has spent three decades helping families with loved ones with intellectual disability, said putting plans in place — even if they weren’t perfect to start with — was vital.
Mr Booth said carers stuck on where to begin could do so by answering basic questions, such as how many assets they have, how many children they have and how assets will be divided.
That process might also involve thinking about family dynamics and explaining to other children that an uneven split of assets wasn’t because of a lack of affection or consideration, but based on a child with disability having a greater need.
As well as a will, Mr Booth said one of the most common arrangements parents put in place was setting up a trust.
“People often think of trusts as a very complicated sort of thing … but it’s very simple” he said.
“It’s saying, ‘here’s some money or property, and I’m giving you, the trustees, the power to look after that for the beneficiary, the son or daughter with a disability’.”
When appointing a trustee, Mr Booth said it was important to consider their age, as well as their connection to the person with disability and ability to consult with them on decisions.
Mr Booth said many families opted for Special Disability Trusts, which offered potential tax and gifting concessions for those receiving the Disability Support Pension, but which also have higher administrative requirements.
Above all, Carolyn Smith from CID said the most important thing was to make sure the person with disability was given the tools to make their own decisions, whatever that looked like.
“Parents need to have those conversations regularly and early with all the right people so that everyone gets to know the person they love and their skills and so their voice is heard in those conversations.”
As Ros Collins finds the best way forward for her son Dan, his happiness and safety continue to be her top priority.
With help from Dan’s younger brothers, her aim is to find him a suitable place to call home and ways to fund the assistance he needs to pursue his passions, with support from carers who have become familiar to him.
“[I want him to have] dignity, choice and freedom,” she said.
Places to start
- Try to empower your person and give them the tools to be involved in the decisions about their own future.
- Think about the different networks of support that your person can be tapped into — from friends and family to others in your wider neighbourhood.
- Draw up a will and don’t leave it too late. It might not be perfect, but you can always amend it.
- Create a profile for your person so trustees can turn to it when trying to understand their likes or preferences.
- Appoint a trustee. When doing so, consider their age and connection to the person, and include in the terms that trustees consult with the person with a disability.
- Think about possible conflicts of interest, perhaps appoint multiple trustees to ensure siblings do the right thing.
- Figure out what the best housing option is, ensuring it keeps them healthy and safe.
By national disability affairs reporter Nas Campanella and the Specialist Reporting Team’s Evan Young
