People with intellectual disabilities can also be parents and carers – but the NDIS does not support them

The Australian Institute of Health and Welfare released its Disability Report last month. It shows that two in three people with disabilities aged 35-44 have parental responsibilities and more than one in five people with intellectual disabilities aged 15-44 have children.

While an estimated 0.41% of Australian parents have an intellectual disability, international data shows that most people with intellectual disabilities who become parents fall into the ‘low’ to ‘borderline’ range of intellectual functioning. They therefore cannot identify with a label of intellectual disability. The actual percentage of parents in this category is likely higher.

Child welfare statistics are a stark reminder of the vulnerability these families face if they fall between the cracks of the National Disability Insurance Scheme (NDIS) and mainstream support services. According to research from around the world, up to three in five children who have a parent or parents with a developmental disability are at risk of being removed from their care.

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

Read more: Mental distress is much worse for people with disabilities, and many medical professionals don’t know how to help

The situation of parents with disabilities

With the right help, parents with developmental disabilities can and do learn what it takes to be a good parent. But their efforts to keep their families together can be undermined by disjointed services and the separation of parental responsibility from the needs of people with disabilities.

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

The NDIS does not fund general family support. Despite their inclusion as a priority group in Australia’s latest national child protection framework, families with disabilities are only mentioned in passing in mainstream family support programs like in New South Wales.

We have noted in our previous research that if a mother with a developmental disability is assessed as needing life skills support, an NDIS-funded support worker can teach her how to shop for and prepare her own meals. and do the laundry. But the same worker is often not allowed to teach her how to sterilize her baby’s bottles or wash diapers.

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

As one parent we spoke to explained:

I […] couldn’t keep up with household chores. So community services took them out for that. And they took the youngest three days out of the hospital, just because the other kids were being taken care of.

Read more: Small changes could close communication and cultural gaps for people from refugee backgrounds who need disability support

Being a parent is part of life

Disability Minister Bill Shorten reiterated that the NDIS was never intended to replace traditional services. Appropriate investment in ensuring that Australians with disabilities can access traditional supports in their community is essential, but parents with developmental disabilities need more intensive support to manage the varied, complex and dynamic tasks that come with parenthood.

If we recognize parenthood as a fundamental occupation of daily life, NDIS funding can be used by parents with developmental disabilities to learn parenting skills.

When NDIS supports are in place prior to parenthood, we need to adjust plans for expectant parents with developmental disabilities.

The NDIS could fund support for personal and household activities to help parents learn what it takes to create a safe home for their child. Parents can also get help from the NDIS to access their community: to learn about local playgroups and new parent groups, then help join them so they can connect with other parents and services.

For the parents we spoke to, even knowing what services they could use their NDIS funding for was a mystery. It was discovered too late that NDIS funds could have helped her secure 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 me with my parenting ability , helping me get to and from visits, or catching up on meetings I need to go to.

Read more: What the NDIS must do to restore trust, in the words of people who use it

Family-focused supports

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

In practical terms, the NDIS should have a special provision that parents can use to supplement publicly funded services. This is in line with the 2019 recommendations of the NDIS Independent Advisory Board. These suggested that the NDIS negotiate with mainstream services on behalf of parents with developmental disabilities and that child protection agencies file an urgent referral for review of the NDIS plan if they come into contact with these families in due to child safety concerns. In the three years since the report was released, there has been no evidence that the NDIS or state and territory child welfare agencies have followed these recommendations.

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

Comments are closed.