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.
The comments section is closed.
Thank you for this! We had to leave Canada for the United States in order to have any sort of services (and therefore a future) for our nonverbal autistic son. In Toronto, I was treated like an incompetent (first-time) parent and kicked out of every government-run free babies and kids venue because I couldn’t get my young toddler to sit still or stop stimming or running. It took 13 months to access a developmental pediatrician (who referred to my Asian husband as “yellow” because she was racist) for a diagnosis. After receiving a bunch of smeary mimeographed-looking papers about how most autistic people are mentally retarded and pointing me to a bunch of useless charities (like, we could offset the cost of private services costing up to $50,000 per year with $5000 SPREAD OVER FIVE YEARS—who in Canada has this kind of money? Definitely not “ethnic” visible minority immigrants like us who were highly educated and unemployed and severely underemployed due to polite systemic racism and general lack of white-collar jobs). And then we got put on the multi-year waiting list for essential services that we had a chance of getting kicked off of after the long wait. The services we COULD access after a number of months: a well-meaning lady or two coming over every couple of months, watching our son run back and forth and attempt to elope and eat inedibles, and then chirping brightly, “have you considered taking him to the pool or cooking with him? Have you considered letting him walk outside on his own?” The worst part was when we got a spot in a terrible integrated “special needs” nursery school run by a teacher who frequently made reference to our “sponging off the system” explicitly because she didn’t like non-Christian non-white immigrants and didn’t think they should be getting income-related daycare subsidies. This nursery school was a “half day” that was actually two hours and fifteen minutes long. The social worker who oversaw our subsidy lectured me about not slacking and finding a job for the time he was in school, as if it was possible that someone would want to hire me for that specific hour and a half remaining to me after dropoff and before pickup. Eventually, I found my son in a life-threatening situation during a school Christmas party due to some unsafe conditions in the classroom related to the festivities and brought it up politely with a teacher, with some more special-needs-toddler-safe suggestions for next time. She acted like I was waging war on Christmas and called the Children’s Aid Society fabricated three fictitious events, and told them I was mentally unstable and she feared for our son’s safety. During the investigation process, I learned from many other visible minority acquaintances and friends, as well as a visible minority colleague of my husband’s who works in the Ontario school system, that this is the standard procedure in public schools when parents who are nonwhite/ethnic, low-income, and immigrant have complaints against the school. (She said it was the most depressing part of her job and she hated it.) Fortunately, the CAS worker who investigated us realized quickly that the allegations were bad-faith and the case was closed, but as always happens, I’m now on a permanent database of “suspicious” parents. If anyone else were to make a call, including someone who merely didn’t like us and knew of this experience, the outcome would likely be a lot worse for us and our son.
I mention this all just to illustrate the complete lack of support, and the negative events that occurred as a result of attempting to get even the inadequate services available to a young “moderate to severe” autistic child in Toronto.
We decided to concentrate our efforts on leaving Canada instead for the United States, where I’m a citizen. Within a month of our moving there, my husband got a well-paying job, the likes of which was unavailable to us in Canada, and our son was in intensive early intervention (ABA, OT, speech) for the next three weeks until he turned three, after which he had an automatic free spot in a self-contained classroom in a local public school, where he got (and still gets, several years later) six hours of instruction, including ABA, PT, OT, speech, wonderful class trips, art, gym, tech, music, intensive toilet training (that is not really possible without professional intervention given his challenges), and more. It’s not without some rough patches, but is overall great. We could have waited years for some of this to be available to him in Canada—or not as the case may be—and instead all of it was available to us within a few weeks of moving to the US. Now we have to worry about lack of gun control in schools, but he also has a future, and WE have a future, that we never could have had in Canada due to lack of supports for parents as well as children. We also get up to 40 hours per month of respite care from the state between two organizations. We’re Canadian citizens and would move back to Canada if it was literally a matter of life or death, but with the full knowledge that it would be the end of an even somewhat fulfilling life for him, and for us, especially me as the primary caregiver. I was supposed to get a job while receiving a subsidy in Toronto, but I noticed that the only mothers of the nursery school students who worked either had a relative at home for free childcare, which we did not, or were wealthy and had a nanny, which we were not. Now at least I have the hope of future employment in the US.
Lack of resources for special needs families, especially when compounded by systemic racism, benevolent and otherwise, ruins lives. I fervently wish for something better for fellow Canadians in this situation.
We are parents of an 25yr old adult child with multiple diagnosis, it has been a challenge since day one, now 25 yrs later, there are different challenges more intense challenges: mental health, physical disabilities and intellectual disability; plus many many other issues; As parents we worry about our generic children but for our special needs children the future is a very scary subject to think about, plan and discuss
We are very lucky to have a younger daughter who will be taking care of our eldest when the time comes, but we dont wish it to be a burden. But in the mean time, we are 56yrs and we are starting to get tired of all the paper work, the one on ones, the meltdowns after meltdowns, the extra work we need to put in, the mental health issues, the waiting lists after lists,, what do we do,,, there will come a point where hopefully our daughter will be able to take care of us, that’s the dream,, we are aloud to dream, maybe just maybe life will get easier not more difficult,
There needs to be programs for us parents to help us prepare and get relief, more program for the parents and for their special needs, there should be a different program than the present ODSP system, there should be more money available for our children, we are missing so much for these amazing extraordinary parents and people
Parents of children with developmental disabilities need to start early to plan for their child’s future care and yet are often dismissed or judged by educators, health care providers and others. I remember feeling stung when a professional at a high school planning meeting leaned across the table and asked “Don’t you want _______ to live with you?”. My stunned response was less than articulate, but here’s what I came up with in my head as I made my way home: “Is your greatest dream for your daughter to live with you in complete dependence until you can no longer care for her or until you die trying and then to be cast into the next available “bed” no matter how inappropriate the setting is to her needs, interests and abilities? My dream is for my daughter to eventually live in a setting where she can learn and interact with peers, develop new relationships and competencies, take some risks, maximize her independence, and explore adult parent-daughter relationships with her father and I, without our being cast in the perpetual caregiver role.” I recall a former Community Services Minister in our home province of Nova Scotia stating that “most parents of children with disabilities want to keep their adult family member at home”. Well, even if that were true, which I don’t believe it is, it would only be because the alternatives often involve “placing” young adults in nursing homes and institutions, rather than in safe, appropriate and supported homes in their communities. I don’t know many who would choose that. Our family is so fortunate in that our daughter is now supported in a L’Arche home in her home city. But for so many others, the wait goes on and on as successive conservative and liberal governments drag their heels decade after decade, when there are plenty of families and organizations willing to create new homes and options for our adults with developmental disabilities, right now while they are young enough to benefit.
It is great reading this article and the comments. I have a 5 year old daughter with DS and we live in a little island of Honduras (Roatan), and a group of parents just strated like 5 years ago in the island to work for children and young adults with learning differences. Our family or friend member with a disability in our country has no chance in our country and the family members have no support, yet little by little people are.starting to stand up for their love ones, because everyone deserves to have a chance!! And reading articles like this opens our eyes that not only the child or person with disability needs attention (we tend to forget because of the imidiate attention our child needs) but the parents and family members as well. We all have so much to learn, and so much to do.
We have to stop looking at this problem in terms of economics or how much we save if parents look after their autistic children
What will happen after the parents pass on ?
Canadian society needs to look at it as a Canadian family issue and no family member should be left out because of an illness or measured the outcomes in dollars
We should have a solid plan for the afflicted individuals to ensure a happy and meaningful long life for them long after their own families passed on
No parents should worry about the faith of their children left to the care of the government
Marian Podlovsky
We certainly need to get better at supporting parents and caregivers. We have a son with an intellectual disability/mild cp and seizure disorder. He is high functioning but with cognition challenges but we have had struggles with healthcare throughout his life. We have never had a funding to help him progress in his life. Now we are in a struggle again with his health and housing future. We had been turned away many times by healthcare and actually at one point went to the States. He works a few hours a week and we struggle to find him programs to help him develop. We have had to spend much on occupational therapy and physio.
We as a community need to be more supportive and caring for each other. I am trying to form a advocacy parents group that can address some of these issues.
https://youtu.be/WrbTbB9tTtA
Hello. I just finished reading the entire article. My name is Marcia and I have a 19 year old autistic son who is reasonably high-functioning and has, with a lot of help, managed to earn credits for high school which I am very proud of. However, he has considerable behavioural issues at school and at home and that is the most concerning issue, in my mind, of how he will cope out in the world, in a job etc. We are now trying to plan his future and I know that I will most likely have to continue to parent to some degree. I am also 62 years old. As I read the article, I became quite emotional as it is rare to hear that much validation of the stress and distress that the parent of a child with disabilities experiences. We spend years advocating, dealing with highly volatile situations at times, problems at school and in the home, and have adapted to coping with these high-stress situations for so long that we probably don’t realize the toll it has taken. So it was very comforting on some level, to hear it validated and supported. Hopefullly, this compassion and study can be put into practice and that the governement will acknowledge the huge task of taking care of a child with disabilities and on into adulthood. I am a fairly strong and resilient person but only human. I have done as much as I can to help my son and will continue to, however, as the article states, as we age, it not only becomes harder physically but emotionally as well. We want to get on with our lives, our partners, travel, enjoy life and not just be caregivers. We do need support, emotional, and help in navigating the system and all the ways mentioned above. I congratulate both these people who have done this research and brought this incredibly important issue up to the forefront. Thank you.
This is such a crucial issue and conversation that needs to be had. I will be sharing this article to my circle. As service providers/workers we are so focused on supporting the child, youth, adult that all too often parents and caregivers are forgotten, yet they are just as important. Thank you for your research and expertise.
As a self-appointed family advocate I have been singing this song for over 10 years and it fell on deaf ears until recently. I single-handedly got Community Living Ontario to change its mandate two years ago, and have maintained a personal contact with Dr. Helena Jaczek, Minister of Community and Social Services. CLO is now taking a family-based approach to its advocacy work because they are finally convinced that when families are supported they are better able to care for their children with disabilities. The Ministry is now working with CLO to find ways of better supporting families before they reach a crisis point. It has been a long, hard fight but I’m finally getting somewhere. It was thrilling to see others like you championing family support. Please keep me in the loop, and may the Force be with you!
The biggest problem in not getting help is the people in charge do not have children with disabilities of any kind there fore they are not interested or are unable to consider all the possibilities the families face and the financial help that is required. More people need to take an interest even if they do no have this problem themselves. Everyone needs to be on board.
I agree with everything in this article and don’t see much to debate except this: Families like mine need more support: more respite, more clinical services, etc. But what we need the most (in my experience) is not mentioned here. We need support to develop a vision for how our child will contribute to their community. Most clinical support services only reiterate the ways that our children are a burden, to us as society and to us as a family. Receiving support depends on exhaustive data collection of everything we can measure that is wrong with them. As families, we need support to see all the ways that people with developmental disabilities are realizing their potential to live meaningful lives. We need to learn from these people and we need support to identify and remove the barriers for our own sons and daughters, even when WE are one of the barriers. We need support to maintain that vision when the service system seems determined to reduce our child to a list of deficits and a number on a waiting list.
I don’t see anything changing substantially for families and our sons and daughters until our society stands up and says “Dammit! We’ve been waiting too long! Our communities are impoverished by the absence of our neighbours with developmental disabilities! How can we support them, what barriers can we remove, so that we can all appreciate their contributions?!”
So long as the support for families is rooted in a fundamental presumption that our children are burdens, we will always be supplicants for funding and support rather than the vehicles to help our sons and daughters thrive. The biggest barrier to my family is the constant, pervasive idea that our daughter is an unfortunate (but cute) mistake, rather than a contributing member of a society that is lacking when she is absent.
Raising a child with a developmental disability is hard. But dealing with a service delivery system that perceives her as a constant drain on resources is the most soul-crushing part of that experience.
Very True! We are building networks of support for our two adults with the help of independent facilitation. It is a worthwhile investment and our adults benefit from it. They do get to know their neighbors and neighborhood and involve in the community the way they wish. Our hope is that they will become contributing members of our community. So far with one of them we are succeeding.
Susa
Thank you for that statement, Erin. I’ve never read anything like this in a public forum. We need more people like you.
Wow! It’s great to read this perspective!! I’ve been advocating for support for families for almost 30 years, with very limited success. Another piece to this is the need to build capacity for our communities to embrace and support people who live with labels and their families. It truly does take a village!! I was saddened when, at the AGM of our local Community Living Association, there was a declaration to go back to 20th Century ways of supporting people with intellectual disabilities, rather than focusing on building capacity to support these people as meaningfully contributing citizens. It looks like my years of advocacy are not over yet!!
Well articulated! Thank you for bringing this forward. Each time you create awareness, you advocate for persons with disabilities and their families.
Thank you Dr. Lunsky for this research and awareness. This certainly hits home and highlights care for the caregiver while recognizing the invaluable role of families becoming mediators. Well done.
important and relevant research. thank you once again Yona and colleagues!!
As the parent of a 24 year old with autism, I am appreciative of this opinion piece. I think the authors have identified well the challenges associated with parenting the developmentally disabled individual as we age. Not a day goes by where we don’t think about the future – for our son, for ourselves, for our daughter. I used to think the younger years would be the most challenging, however as time goes by I realize that in our case, many of our challenges are just beginning. We have been fortunate to be able to access supports through our local Community Living agency and dual diagnosis services, but there are still many gaps and many unknowns for the future. Where will W. live? How will he adapt to that major change? When will be the right time to consider a move? Forget retirement plans – we are still too busy actively parenting our special-needs child. Our hope is that we are able to continue to do so for a good number of years to come.
Well said! We at Community Living Ontario see both the great need to support parents and family members and the great benefits when it’s done well. By meeting families “where they’re at” on their journey and walking with them, we provide validation to their hopes and fears, we create opportunities to connect with other families, and we’re able to provide safe spaces for conversations to happen. Low and behold, when these types of supports are provided, families become more stable and resilient. They are able to dream of and plan for good contributing lives in the community for their sons and daughters; their brothers and sisters. Access to quality health care, respite, education, etc., are all very important, but ultimately, they are the services that merely support good lives. Without foundation supports to families, we’ll continue trying to put puzzle pieces together without any idea of what the picture is supposed to look like.