Inequality faced by parents with intellectual disabilities

The federal government and five state governments in Australia have now apologised for forced adoption of babies from mothers in the 1950s, 60s and 70s. During those times there was a belief that young and unmarried women were and 'incapable' of parenting.

Today, it is parents with intellectual disability who face the consequences associated with being labelled 'unfit' and 'incapable' of parenting.

Researchers from the University of Sydney's Faculty of Health Sciences, along with the Parenting Research Centre, have conducted research and highlighted the needs of parents with intellectual disabilities for many years. Together, they coordinate Healthy Start, the world's only national strategy for children of parents with learning difficulties, which is funded by the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.

In a recent submission to the New South Wales government, the Intellectual Disability Rights Service (IDRS) made recommendations aimed at avoiding the need for future governments to again apologise for treating another group of birth parents without compassion when they most need care and support.

"Parenting remains the last taboo for people with intellectual disability," says Professor Gwynnyth Llewellyn, Director of the University's Centre for Disability Research and Policy and Co-Director of Healthy Start.

"The group of adults with intellectual disability who choose to parent are largely those who benefit from inclusive practices around disability. They have attended mainstream schooling, live in the community and had access to employment opportunities. They have grown up believing that they can have a normal life. Then they become parents, and society says this part of normality is off limits," she says.

According to the IDRS submission, this is a breach of Australia's obligations under the UN Convention on the Rights of Persons with Disabilities, which enshrines the right of people with disability to create and maintain families.

Parents with intellectual disabilities face removal of their children in disproportional numbers. They are more likely than other at-risk populations to have their children removed when they are very young and often straight after birth.

"The assumption into care of their babies at birth often comes with little or no forewarning. Parents are interviewed by child protection authorities within hours of giving birth, often without access to support or an understanding of the legal ramifications," says Professor Llewellyn.

Parents are often also provided with written or verbal legal advice and access information which is very difficult for any parent to comprehend.

After assumption, mother and baby are separated, with the mother only given the opportunity to see her infant under supervision in the hospital nursery. Extended family and the father are also granted only restricted access.

"This is a critical issue in Australia and around the world. When babies are taken away from their mothers early on and the mother doesn't really understand why, then you have the potential for very distressed mothers, parents and families," says Professor Llewellyn

Along with grief and loss counselling services for parents whose children are removed, recommendations in the IDRS submission include the development of removal protocols that focus on both the safety of children and the needs and feelings of birth parents.

Mothers whose babies are removed are also often not given important post-natal support, including assistance to manage lactation or advice around post-birth recovery. Without access to family planning counselling, they are also often unable to avoid further pregnancy - of the parents known to the Intellectual Disability Rights Service Parent's Project, 32 percent were pregnant within two years of having a baby or child placed under the care of the Minister.

While acknowledging some parents with intellectual disability may not have the capacity to care for children, the submission urges that all parents, regardless of their childrearing capacity, should be treated with compassion and with regard to the immense trauma of losing a child.

"There is very little evidence anywhere in the world that parents with intellectual disabilities abuse their children," says Professor Llewellyn. "Our concern is that mothers are not given a chance to learn how to parent their children. We've shown in randomised controlled trials, as other researchers have, that parents with intellectual disabilities can learn to satisfactorily parent children."

The submission also recommends the establishment of a supported accommodation facility for parents with intellectual disability to demonstrate and develop the confidence and competency to raise their children.

Along with the jointly running the Healthy Start strategy, the University of Sydney has recently established its Centre for Disability Research and Policy, which is entirely focused on generating evidence and bringing it to the policy process to improve evidence-based strategies to support people with disabilities, their families and carers.

"The Healthy Start strategy is a great success story for Australia, and other countries including the Netherlands and Sweden have both introduced their own national strategies based on our model," says Professor Llewellyn.

"Our strategy is regarded as a world first, so in that sense Australia is ahead of the curve. However, if you ask whether we've really managed to provide adequate support and services for this group of people, sadly the answer is a categorical no," she says.