Keeping up a lifetime of care

Parents can call on a range of resources to provide ongoing support for a child with a severe disability

- Susan Hely

Katherine and Guy have always worried about how their son, Roman, would manage without them. Roman, who is 18 years old, lives with a severe disability and his parents manage most of his needs.

A perplexing issue for Katherine and Guy is who to appoint as Roman’s trustee, because managing his care can be fullon. They put off drawing up an ongoing care plan in their will, but when Katherine found out she had breast cancer, they decided they had to act.

Instead of leaving Roman a lump sum or the house in their will, they need to protect the funds to provide an income to support Roman as he ages. He has severe spina bifida and an intellectual disability and is incontinent. He uses a wheelchair.

The National Disability Insurance Scheme (NDIS) has really helped, giving Roman care services and freeing up Katherine’s caring role for several hours on certain days, but NDIS doesn’t provide accommodation or food.

Disability pension

Roman has turned 18 and qualifies for a government disability pension, but it won’t cover all his needs. It pays $503.50 a fortnight for 18- to 20-year-olds and $987.60 for those who are 21 or older.

Katherine and Guy want Roman to have extra income to help pay for his accommodation, therapies, food, medical emergencies and recreation. But the funds could disqualify him from the disability pension because of its assets and income test.

Roman loves his computer and electronic gadgets that connect him to his friends through chat rooms and has passions such as basketball. He is much loved by his parents and his healthy, neuro-typical brother and sister. He lives at home, but he could live in supported housing as an adult.