01 Jun Mums with an intellectual disability already risk family violence and losing their kids
Coronavirus could make things worse for those with an intellectual disability report Susan Collings and Margaret Spencer
The coronavirus pandemic is keeping us at home due to widespread unemployment, school closures and social distancing. This has already led to concerns about an upsurge in domestic and family violence. But women with a disability, particularly those with an intellectual disability, are at even greater risk of gender-based violence, affecting not only them but their families.
Intellectual disability affects a person’s cognitive functioning in many varied ways. For some people, the effect on their ability to learn may not be severe enough to meet a threshold for clinical diagnosis but the impact on everyday life can be profound.
Some people with intellectual disability do not identify with the label of intellectual disability or wish to be defined by it. If they become parents, trying to “fly below the radar” can mean they avoid seeking help.
Researchers say about 0.4% of Australian parents have an intellectual disability.
This equates to at least 17,000 parents who already face more challenges than other parents. The COVID-19 pandemic could make things worse – particularly for mothers who are often socially isolated and at risk of violence from a partner.
Victims of abuse
The control and coercion partners use on these mothers may not conform to typical patterns of domestic abuse. It may involve withholding medication or using their fear of judgment about their disability to control them, so the violence can go undetected.
The following example is from research (by one of us, Susan) and shows how this can happen.
Caroline (not her real name) was in special classes at school but did not receive any disability services. She was single and living alone in her mid-20s when she became pregnant. After she was hospitalised with post-natal depression, the child’s father got full custody.
Caroline was devastated and alone and the man preyed upon her vulnerability, forcing Caroline to trade visits with her child for sex. He warned her to keep her mouth shut or she would not see her child.
When Caroline became pregnant again, she was terrified she would lose this child, too. She confided in a friend and, with the help of her church community, she was able to bring her baby home. The sexual abuse, however, continued.
Caught in the courts
Parents with intellectual disability come to the attention of social services at high rates and usually due to factors related to poverty, disadvantage and social isolation.
For example, they make up almost 10% of all care matters in the New South Wales Children’s Court. Internationally, up to 60% of children are removed from a parent with intellectual disability. Parental neglect is the most common reason for child removal, which is the case for many families living in poverty.
What brings these parents to the notice of child protection officials is rarely the intellectual disability alone. It’s usually other compounding factors such a domestic violence, social isolation, limited resources, or adverse childhood experiences.
Once in the system, the parent’s disability tends to become the focus and concern. There is reliance on assessments that equate IQ with parenting capacity, despite the best evidence to the contrary. These parents can be seen as a risk to their child’s development but studies show they actually experience normal feelings of love and connection toward their parents.
Our research shows parents with intellectual disability feel they are made to jump through invisible hoops, with child protection workers failing to make their expectations clear.
One parent told us: When they come to our home, we feel like we’re doing things that are wrong. We were so confused.
Pandemic reduces parent support
While the COVID-19 pandemic is affecting all Australian families, some services for vulnerable families have restricted their operations to minimise the spread of the virus. For example, some are offering video chats instead of home visits during the crisis.
The effects of self-isolation and physical distancing will compound existing problems for mothers with intellectual disability and their children who are at risk of failing to get the help they need.
These families are losing access to crucial educational and family supports at this critical time. They are also likely to be affected by changes to the provision of disability services during the COVID-19 crisis.
The National Disability Insurance Scheme (NDIS) now recognises parenting as a support need. But there are complex eligibility requirements that assess individual functioning and may miss or minimise the impact of, say, housing instability and lack of social support on parenting capacity.
The pandemic is creating challenges and placing constraints on the provision of community-based and in-home disability services. NDIS participants are being asked to evaluate what services they “can’t live without”.
As services pivot to target high-risk groups like those needing help with self-care, and primarily become focused on health-related needs, supports for mothers with intellectual disability are at risk of being reduced.
We need to protect those families where the primary caregiver is a mother with an intellectual disability. If we fail to do this we are likely to see a spike in the incidence of child removal – something that takes generations to heal.