Parents with intellectual disability need more support

The Australian Institute of Health and Welfare last month released its report on people with disability. It shows two in three people with disability aged 35 to 44 years have parenting responsibilities and over one in five people with intellectual disability aged 15 to 44 years have children. 

While it is estimated 0.41% of Australian parents have intellectual disability, international evidence shows most people with intellectual disability who become parents are classified in the “low” to “borderline” intellectual functioning range. So they may not identify with a label of intellectual disability. The real percentage of parents in this category is likely to be higher. 

Child protection statistics are a sober reminder of the vulnerability these families face if they fall between the cracks of the National Disability Insurance Scheme (NDIS) and mainstream support services. Up to three in every five children with a parent or parents with intellectual disability are likely to be removed from their care according to research from around the world.

Parenting should be treated as an activity of daily living for people with disability and then supported – rather than ignored – to ensure the best outcomes for parents and children.

With the right help, parents with intellectual disability can and do learn what it takes to be a good parent. But their efforts to keep their family together can be undermined by disjointed services and the separation of parenting responsibility from disability needs. 

The NDIS is a key plank of Australia’s efforts to meet our obligations under the United Nations Convention on the Rights of Persons with Disabilities. This includes the right to participate fully in society, live independently, and have a family. In reality, families living with disability face perilous service gaps that undermine these rights. 

The NDIS does not fund general family support. Despite inclusion as a priority group in the latest National Framework for Protecting Australia’s Children, families with disability are only mentioned in passing in mainstream family support programs such as in New South Wales. 

We have noted in our previous research that, if a mother with intellectual disability is assessed as requiring support with living skills, an NDIS funded support worker may teach her to buy and prepare her own meals and do the laundry. But the same worker is often not permitted to teach her how to sterilise her baby’s bottles or wash nappies. 

If the first support a mother with intellectual disability receives follows a mandatory report to child protection, it is likely to be too little and too late. 

As one parent we spoke to explained:

I […] couldn’t keep up with the housework. So, community services removed them for that. And they took the youngest at three days old from the hospital, simply for the fact that the other kids were in care.

Disability Minister Bill Shorten has reiterated that the NDIS was never intended to replace mainstream services. Proper investment to ensure Australians with disability can access mainstream supports in their community is critical, but parents with intellectual disability need more intensive support to manage the varied, complex and dynamic tasks that come with parenting. 

If we recognise parenting as a fundamental occupation of daily living, NDIS funding can be used by parents with intellectual disability to learn parenting skills. 

Where NDIS supports are in place prior to parenthood, we should adjust plans for expectant parents with intellectual disability. 

The NDIS could fund assistance for personal and household activities to help parents learn what it takes to make a safe home for their child. Parents could also get NDIS help to access their community: to find out about local playgroups and new parents groups, and then help to join in so they can connect with other parents and services. 

For parents we spoke to, even knowing what services they could use their NDIS funding for was a mystery. One found out too late NDIS funds could have helped her get to contact visits with her children in care. As she told us: 

We didn’t really know the ins and outs of what NDIS does for you, and no-one explained to me, ‘Oh, the NDIS package can help you with a lot of different things’, like helping with my parenting capacity, helping me with getting to and back from visits, or catching up with meetings that I need to go to. 

Our review of support models showed what works is ensuring families are connected to supports early and not when they are in crisis. And that services work together and are family – not person – centred. 

In practical terms, the NDIS should have a special provision parents can use to supplement state-funded services. This is consistent with 2019 recommendations of the Independent Advisory Council to the NDIS. These suggested the NDIS negotiate with mainstream services on behalf of parents with intellectual disability and that child protection agencies lodge an urgent referral for an NDIS plan review if they come into contact with these families due to child safety concerns. In the three years since the report was released, there is no evidence the NDIS or state and territory child protection agencies have taken up these recommendations. 

Promises to improve the way NDIA communicates with the disability community are welcome. Governments need a clearer picture of how many families are headed by parents with intellectual disability, and how they can tailor support early to prevent these families reaching crisis point.

This article was written collaboratively by University of Sydney academics Dr Susan Collings, Dr Gabrielle Hindmarsh, Dr Margaret Spencer and Dr Nikki Wedgwood, and was originally published in The Conversation.