Newborns of Ontario women with intellectual and developmental disabilities are 30 times more likely to be taken into protective custody than the rest of the population, according to a new study that says these separations can be harmful to both babies and their mothers.
The study, published in the journal Pediatrics on Tuesday, found more than one in 20 babies of women with intellectual or developmental disabilities, or 5.7 per cent, are discharged to child protective services directly from hospital after birth, compared with 0.2 per cent of newborns of women who do not have such disabilities.
“We know that this is quite a high rate, and we also know from other research, that maternal-infant separations have negative consequences both for moms and for babies because what they do is they disrupt maternal-infant bonding and breastfeeding,” says the study’s lead author Hilary Brown, an assistant professor at the University of Toronto and adjunct scientist at the Institute for Clinical Evaluative Sciences (ICES).
She and her team point to previous research that shows such separations may lead to an increased risk of suicide among mothers and developmental problems among children.
Their findings suggest a need to provide support for mothers with intellectual or developmental disabilities, both for those who lose custody of their infants, as well as for those who go home with their newborns, Dr. Brown says.
One in every 100 women has an intellectual or developmental disability, which is a group of conditions that affect cognitive abilities, including problem-solving, and adaptive abilities or social skills and communication, the researchers note in their study. Examples of disabilities they identified include autism, Down’s syndrome and fetal alcohol syndrome.
While previous studies have suggested between 40 per cent to 60 per cent of women with these disabilities lose custody of their children at some point, Dr. Brown and her team focused on the newborn period, for which little was known.
The researchers analyzed health and social services data from ICES for the newborns of 3,845 women with, and nearly 380,000 women without, intellectual and developmental disabilities in Ontario, between 2002 and 2012. They found women with these disabilities, who also had a mental illness, lived in poverty or had poor prenatal care, were at particularly high risk of having their newborns removed from their care.
Since mothers who are separated from their babies at birth often suffer from mental health problems, Dr. Brown says, services are needed to support their mental health when such separations occur. For the women with disabilities who do go home with their newborns, she says, "we need to make sure there are supports in place that can help them with breastfeeding, infant care, parenting, that sort of thing.”
Moreover, high-risk subgroups of women with intellectual and developmental disabilities who also experience poverty, social isolation or poor mental health may benefit from existing, evidence-based programs designed to address their needs, Dr. Brown says.
An example of such a program, she says, is the Parenting Enhancement Program at Toronto’s Surrey Place, which helps parents with developmental disabilities.
Deborah Bluestein, a therapist with the Parenting Enhancement Program, says clients often lack positive social support, such as friends and family members who can help them with parenting. The program is customized to each client, and connects them with the services they need, which can include family doctors or childcare. It also teaches them basic parenting skills by taking a task, such as preparing infant formula, and going over it, step by step, she says.
“They might need to be shown how to do that, hands on, multiple times, until they’ve learned it. But we found they can learn it in that manner, and quite effectively,” she says.
Ms. Bluestein says there is a real demand for programs such as hers. Surrey Place is the only centre in Ontario that offers such support for parents with intellectual and developmental disabilities, she says, noting that the waiting-list for a spot in her program is more than a year long.
She says a common misconception is that individuals who have a developmental disability lack the ability to parent.
“That’s actually quite false,” she says. “Many of these parents can successfully parent their children as long as they have the appropriate and effective support.”