USA
Foster care is intended as a temporary solution for children whose
parents cannot care for them. At any one time, about half a million
children in the United States are in foster homes.
The foster
care system has a reputation as a place for children who are victims of
abuse or neglect; this reputation is only partially deserved. About half
of children in foster homes have a chronic disability that can make
caring for them difficult. In fact, many of these children enter foster
care because they have complex medical needs that their families cannot
manage, often because of limited resources.
When children enter
the foster care system, they are automatically enrolled in Medicaid, and
their foster parents receive funds for their care. As a result, this
system is becoming a critical component of caring for children with
disabilities.
We have found that children with autism are
particularly likely to end up in the foster care system.
Long-
and short-term outcomes for children in foster care are not good:
Children who spend any amount of time in foster homes are less likely
than their peers to graduate from high school and more likely to end up
homeless, in the criminal justice system or in long-term residential
care.
Foster care may be an even less desirable place for
children with autism, given their special needs. Although foster parents
may receive some specialized training, it is generally not nearly enough
to help them adequately care for these children.
Disability
policy, especially that specific to the healthcare and child welfare
systems, should be designed to help the children’s biological or
adoptive parents care for them and keep them in their homes.
Moving out
Because all children in foster care
are on Medicaid, using Medicaid claims is one of the best ways to study
the prevalence and healthcare experiences of children with autism in the
system. In our first study using national Medicaid claims, in 2008, we
found that 7.3 percent of Medicaid-enrolled children with autism were in
foster care. This is well above twice the proportion of all
Medicaid-enrolled children in foster care1.
Last year, my
colleagues and I decided to address this question in a more rigorous
way. We wanted to know how the prevalence of children with autism in
foster care is changing over time. We also asked whether children with
autism are more likely to enter foster care than their neurotypical
peers.
To see if there is something specific to autism that puts
a child at risk for ending up in foster care, we compared children who
have autism, intellectual disability or neither.
We found that
the prevalence of children with neither condition in foster care was
stable from 2001 to 2007, ranging from 3.5 to 3.9 percent. The
prevalence of children with intellectual disability was more than twice
as high in 2001 (8.3 percent), but went down over time to 7.3 percent in
2007.
The prevalence of children with autism in foster care
started out slightly lower; it was 7.5 percent in 2001. It climbed to
10.5 percent in 2005 and then declined to 9.1 percent in 2007.
When we statistically controlled for children’s age, race, sex and state
of residence, we found that children with autism were 2.4 times more
likely, and children with intellectual disability 1.9 times more likely,
to enter foster care than typical children2.
We don’t know why
this is so, but we see at least three possibilities – all of them
related to the challenging behaviors that often accompany autism and the
difficulty in obtaining high-quality care.
First, raising a child
with autism is stressful for families, as the condition is unusually
difficult to manage effectively. Some parents may simply not have the
skills and resources to do so. This may result in neglect or abuse – and
placement in foster care. Alternatively, families may voluntarily place
children with autism in foster care because they can’t handle the
children’s behavioral problems. Third, parents may relinquish custody so
that their children can obtain Medicaid-funded or residential care that
they otherwise cannot afford.
These three scenarios are known to
happen among other children but have not been studied in those with
autism.
Help for families
To lower the
chances that a child with autism will land in foster care, clinicians
working with these families should talk openly about the stresses of
raising a child on the spectrum. They should ask how that stress is
manifesting in the family, and assist the family members in getting the
support they need.
In addition, all U.S. states should offer home
visits from professionals or short-term breaks for parents of children
with autism. (Only a handful currently do.) Home visits and respite
services have been shown to lower the chances of psychiatric
hospitalization among children with autism, and also may reduce the risk
of foster care placement3.
Foster care arrangements may involve
care from a relative, from a stranger or in a residential facility.
Public funds pay for all of these placements, which can cost between
$30,000 and $50,000 per child per year. That means that if we can
identify children at high risk for foster care placement, we could
intervene intensively and still save money.
Beyond cost savings,
we have an ethical obligation to help families care for their children
with autism. We can and must do better to help these most vulnerable
children and their families.
By David Mandell
9 January 2018
David Mandell is director of the University of Pennsylvania’s Center for Mental Health Policy and Services Research.