I’ve been a financial planner for over 20 years, but no experience has taught me more about my profession than raising a child with a disability. My son Brady was just 18 months old when he was diagnosed with autism and an intellectual disability. Brady is now 21 years old but cognitively he’s like a three-year-old. This means he can’t plan for himself, make decisions and isn’t always aware of danger.
When he was first diagnosed it was devastating. It’s like grieving the loss of a child. All the dreams and goals that we had for him were taken away – my husband would never be able to kick the football with his son the way he had dreamed of. But eventually, we had to let go of our dreams and focus on how we could make a meaningful life for him.
Brady is a real outdoors kid. He loves going fishing and camping – the rougher the better. He’s also incredibly affectionate and loves a cuddle and head massage. My son is a very sweet man who’s 21 going on 4.
Our life has revolved around Brady, and it involves a lot of planning and organising a multitude of carers to look after him every day. As he’s got older, this has actually become more difficult. As a child, he went to a special school for children with autism where there was a range of services available. But once he turned 18, the system treated him like he was an adult even though he couldn’t write his own name.
Navigating the system is like a puzzle and everything falls back on the parents to work out where each piece goes. Like most families, we use multiple agencies to help us look after Brady. To give him the care and support he needs I’ve had to learn multiple systems like the NDIS, Centrelink and other agencies. This means Brady isn’t just reliant on his family for support, he has a range of other people who can help him live a meaningful life.
While Brady gets a disability support pension, this isn’t enough to provide everything that he needs and he will never be able to work. So as a family we need to plan to support him for the rest of his life. The rest of one’s life is a very long time span, so we’ve had to think about things like estate planning, insurance and other financial issues much earlier than families who have neurotypical children.
This is challenging, but I’ve been able to use my knowledge as a financial adviser to find some gems in the legal and financial systems that have been built in to support families like mine. These can actually make a significant difference to your child’s life.
I now use this specialised knowledge to help people just like me who are dealing with challenging and often difficult circumstances. Most families who have children with disabilities have to think at least 10 years ahead. So when their child starts secondary school, their mind is already racing ahead to plan for their 20s.
With Brady now in his 20s, we’re working on creating a positive future for his adult years. We want him to have all the support he needs in place and know that he is taken care of financially if something was to ever happen to my husband and I. In October, Brady will move into his own place and live with a peer, just like other people his age do. They’ll both have the support they need day to day and won’t need to rely on my husband and me every day.
This project has been five years in the making. By engaging the right professionals, from legal advisors to agencies, we’ve been able to put the right strategies in place for Brady. This has given my husband and I comfort that we’ve done everything we can to make sure our child is happy and living a life that is meaningful to him.
Kathy Havers is an Executive Advisor at Viridian Financial Group Melbourne