To support children with developmental disabilities, we must support parents
Like a car, we are built to be able to do so much. We go through wear and tear, and repairs are needed as we go. And as parents, we are built to do our job for only so many years. As we age, we are much less able-bodied than when we were younger.
But for parents of children with developmental disabilities, like those on the autism spectrum or those who have intellectual disabilities, even though they’re not built any differently, they are expected to keep running longer than other parents. This is despite that they’re driven much harder and have less time and money to take care of themselves. For these parents, the joys and responsibilities of parenting often come with a greater degree of stress, advocacy, care provision, navigating the system for supports, financial resource juggling and planning. And this lasts well beyond the time period expected – well into adulthood and often for the parents’ entire lives.
We have to pay much more attention to supporting parents of children with developmental disabilities from the start. In a recent policy report from Alberta, it was estimated that if caregivers were paid, the annual costs of caring for an adult with autism could reach $158,000 per year. When funding is not available, much of the caregiving is done by unpaid family members.
Ideally, these parents should have access to ongoing case management and family supports from the time of their child’s diagnosis, as part of their health care, but this is typically not the case. Currently in Ontario, some families are linked to children’s treatment centres or children’s mental health centres, but these services end by age 18 or 19 although the caregiving continues. Some parents cannot access either service, because the centres are too far away, or because their child’s disability isn’t considered severe enough. The school system provides educational supports, but very little support outside of school. At age 16, parents can begin the process of applying for adult services, but criteria for adult services differs from children’s services, and the main focus of these services, like those for children, is on services for the child, and not the parent.
Attending to caregivers is good for them, certainly good for their children, and good for society. It saves us all money and helps make people happier. So why don’t we take this more seriously?
Recently, both Health Quality Ontario and the Change Foundation released major reports on the distress of caregivers, which included the concerns of families of those with disabilities. Healthy Debate published a feature article that highlighted the fear of baby boomer parents who don’t know who will take care of their children with developmental disabilities when they’re no longer able to do so. But challenges faced by families extend beyond the homecare system, and are not limited to aging parents. Even younger parents, having been exposed to chronic care demands without enough support, can go into crisis. In a CBC documentary, one family described having to call the police to take their young adult son to a hospital, because when they went to the emergency department seeking help prior to that, they were repeatedly turned away. This month, CTV profiled a case of a young man with autism who has been in hospital for over a year because he cannot return safety back home. An Ontario Ombudsman investigation was announced in 2012 in response to several high profile cases of abandonment as well as stories of individuals being treated inappropriately and for longer than necessary in hospital because there is nowhere safe to discharge them to.
In our research, we have found that families of youth can reach a crisis point because they don’t seek help when problems start, because it can be difficult to ask for help, because the system is hard to navigate, or because they hope the problem might resolve on its own. Perhaps even more concerning, we have found that families reach crisis points in part because prior negative experiences with accessing care makes them reluctant to engage with health services even when needed. Had these parents had health care providers who were monitoring how well they as parents were managing, combined with information and a pathway through services for them and their child, it is possible these crises could have been averted. By failing to invest in fostering family resilience, we are doing little to avoid future breakdowns.
Our research following hundreds of Ontario families has shown that parent distress and experiences of negative life events increase the likelihood of mental health problems in children, as well as in parents. Left unaddressed, these very issues lead to a downward spiral of increasing crises. We have to attend to children if we want to take care of parents and we have to attend to parents if we want to take care of children. Promising models of parent-based interventions are available and we have some examples of them locally. Some research has even shown that parents themselves can be trained to be mediators or facilitators to support other families.
By not providing help to parents when needed, we simply pay for it later, and at a much higher cost. Families are our greatest asset. Their needs have been well documented, and we know of solutions to meet their needs better. It is time to pay attention to parents’ wellbeing.
Yona Lunsky is the Developmental Disabilities Lead in the University of Toronto Department of Psychiatry and directs the Health Care Access Research and Developmental Disabilities Program (www.hcardd.ca) at the Centre for Addiction and Mental Health. Jonathan Weiss is an Associate Professor in the Department of Psychology at York University and holds a CIHR Chair in Autism Spectrum Disorders Treatment and Care Research (asdmentalhealth.ca).