A core aim is to better support families in their caring capacity, ensuring that the role is nurtured and can be sustained. 

When you look at the many factors surrounding intellectual disability, the scheme is way overdue.

It’s not only people with intellectual disability who are impacted – their families and carers endure considerable financial hardship which has a flow-on effect on physical and emotional wellbeing.

Last year, along with University of Sydney colleague Professor Stewart Einfeld, I wrote a research paper looking at the costs associated with intellectual disability – it ultimately won an Australasian Society for Intellectual Disability award.

The study, the first of its kind in Australia, collated information on the use of health and social care services, accommodation and living situations, income, employment and benefits.

These out-of-pocket expenses were compared to government expenditure on services related to intellectual disability.

The findings demonstrated that much more needs to be done to alleviate the economic burden.

Expenses required to raise a child with severe disability were at least three times that of raising a child without a disability. In dollar figures, the average annual cost to families for a child with a mild disability is estimated at $15,000, increasing to $18,000 for a child with a more severe disability, beyond the cost for a typically developing child.

Families can spend up to 52 hours each week caring for a child with a mild disability, increasing to 85 hours if the child has a more severe disability.

Service use increases according to severity of intellectual disability, ranging from an average of 45 visits to primary or community care services over a six-month period, down to 25 to 40 visits for people with mild and moderate disabilities.

Nearly 70 per cent of all families reported losing income or reducing the number of employment hours as a consequence of the care they provide. Indeed, one of the key findings of the study was that parents often had to sacrifice their jobs in order to provide the appropriate care.

Accordingly, we factored in the opportunity cost of these hours, which was estimated to vary between $64,000 and $105,000 for a mild and severe child respectively.

Participating families were also asked about the social security benefits they, or the dependent, received. The reported average annual benefit received ranged from $5650 to $7000 for a mild and severe child respectively.

Putting these estimates together we concluded that the average family caring for a child with a mild disability is behind around $73,000 each year, increasing to $116,000 if the child has more severe or profound disability.

When these numbers are multiplied by the proportion of the Australian population with an intellectual disability – in excess of 430,000 – the total society cost is estimated at $40.55billion.

By contrast, total government expenditure on services and assistance for people with an intellectual disability is estimated at $3.786billion annually.

I must add that there was no consideration of intangible costs associated with the value of lost output, pain and suffering, the loss of role performance, and the loss of social participation. Nor did we include such items as the cost of replacing damaged toys and furniture, certain food, and expenses for special care, medication, and transport.

The end result is that the economic cost of intellectual disability in Australia is exceptionally high, with families carrying the bulk of the burden. 

As the severity of the disability increases so does the financial cost and the degree of physical and emotional stress.

This hardship has implications beyond a measurable economic cost. Further research is required to better understand the full implications of caring for children with intellectual disability and the impact this may have on families.

The NDIS may be a timely and welcome step in the right direction but the onus is also on the government to evaluate the scheme and ensure that money is being spent in a rational, equitable and efficient manner.  If more needs to be done, then so be it.

Professor Chris Doran is Health Research Economist with the Hunter Medical Research Institute and Hunter Valley Research Foundation.

Professor Stewart Einfeld is chair of Mental Health, Faculty of Health Sciences, at the University of Sydney