Carlo is in a wheelchair thanks to a condition called myositis. Now that he’s nearing 50 and “almost non-mobile,” he receives home care and lives with his parents who help take care of him. But that’s becoming more difficult: his father has cancer, and his elderly mother has her own health problems. “My mom helps me as best as she can, but she’s pushing 80, she has diabetes,” he says.
He has no siblings and little other support. He’s not sure what will happen when his parents pass away. “I’m sure in a pinch I can get help, even just for a few weeks,” he says. “We’ll cross that bridge when we get there.”
Many adult children with disabilities now live in the community, and are likely to outlive their parents. The push for home care over the past several decades has allowed people who might previously have lived in institutions to stay at home, most notably people with developmental disabilities.
This is a positive shift, as community-based care is more cost effective than institutions, and it’s also preferred by people with chronic health conditions or disabilities. But major cracks have appeared in our system, with clients not getting enough access to respite, supportive housing or home care hours.
In many instances, family members have stepped in to fill the gaps, becoming the de facto front-line health care providers. “It’s often assumed that people with long term chronic conditions have their needs met through primary care, community based mental health, or disability support services, and that families pick up around the edges,” says Michael Bach, executive vice-president for the Canadian Association for Community Living. “But 75% rely primarily on family care.”
So what happens when we all cross that bridge – when those caregivers, many of whom are Baby Boomers, become too old to continue to look after their adult children?
Families stretched thin
The number of adults in Ontario with developmental disabilities is growing, and their health needs are higher, because they develop age-related issues, like frailty, up to 30 years earlier than the general population. That’s increasing the pressure on our system.
“People with developmental disabilities are living longer, productive lives in which they are fully included in their communities,” says David Jensen, communications officer for the Ministry of Health and Long-Term Care. “More need our support out in our communities, along with their families and caregivers.” In response, the Ontario government announced in 2014 it would invest $810 million over three years into developmental services.
Ideally, aging caregivers would be able to lean more heavily on developmental services and home care for support when they’re unable to provide the same level of care as they used to. (People with developmental disabilities receive services both from the Ministry of Community and Social Services and from the Ministry of Health and Long-Term Care.) Unfortunately, both systems are stretched thin.
A 2014 Ontario report from the Select Committee on Developmental Services “heard repeatedly that individuals and families who need developmental services and supports are in crisis. We heard that after struggling to obtain services and enduring waitlists for years, many families feel pushed to the brink of disaster.”
In the most extreme cases, families who have been unable to stitch together a solution have left their adult children at the doorsteps of government offices or at emergency departments. There are no Canada-wide numbers on this, but between 2001 and 2013, 44 people over 11 were “abandoned” in Ontario’s Peel and Halton regions alone.
Concerned about situations like these, and “a surge in complaints to our Office about urgent, disturbing cases where adults with severe special needs were ending up in jail, homeless shelters and hospitals, because no care or services were available for them,” Ontario’s Ombudsman is investigating the services available for adults with developmental disabilities.
His 2014-15 report said 1,300 complaints had been received and found that parents are frustrated that adult children who are living on their own don’t have access to adequate assistance. “We continue to receive complaints from families of adults with developmental disabilities who have been placed in hospitals or psychiatric units while they wait for an appropriate residential placement – sometimes for weeks or even years,” the report reads.
The home care system is also widely acknowledged to be inadequate, with long wait times and inconsistent service depending on client’s locations. Ontario’s home care system is a target for reform under Minister of Health and Long-Term Care Eric Hoskins. A government discussion paper on the subject released in December reads, “Some families find home and community care services inconsistent and hard to navigate, and many family caregivers are experiencing high levels of stress.”
A report out just this week from Health Quality Ontario also found that 33% of primary caregivers in 2013/14 “expressed feelings of distress, anger or depression or were unable to continue providing care,” more than twice as many as did in 2009/10.
Looking for long-term answers
The Select Committee on Developmental Services interim report identified the lack of supportive housing as a key issue to caregivers. “Aging parents are pushed to the breaking point of physical and emotional exhaustion as they continue to care for adult children at home,” it reads.
“It is likely that growing numbers of people with developmental disabilities will outlive their parents and require supportive living arrangements in the community,” it continues. “Aging parents worry that when they die or become incapacitated, their grieving child will be abruptly moved away from their home and community…”
The report says respite care – which many parents describe as a “make-or-break” service – is also limited. Respite care allows parents to care for their children for longer, and it can also be used as a transition to having others care for adult children.
Families in Ontario can also apply for individualized funding through the Passport Program, which lets people with developmental disabilities decide how to spend their money on supports and services. It also includes more residential options for adults with developmental disabilities and urgent needs.
“Different things work for different people,” says Yona Lunsky, a clinician scientist at CAMH who studies the health of people with developmental disabilities and their families. “For some people, having individualized funding might be one way to do it. For others it might be much easier if a community agency is responsible for all the care,” she says.
But over time, inadequate funding has left us with a “reactive” system, Lunsky says. The system prioritizes families in crisis – including those who have an ill caregiver, or whose caregiver has died. And that makes it hard for parents to plan ahead. “We’re often having to deal with the most complex difficult cases in a very reactive manner, and we’re so busy focusing on that that we can’t go upstream and offer more support to families, such as respite or support, to prevent crises,” she says.
“Twenty years ago, people would put an individual’s name on a list when they were young,” says Keith Tansley, executive director of Community Living Mississauga, which supports people with intellectual disabilities. “Maybe it’s 20 years until they get into a group home, and during that time we could work with the family, help the person develop skills.” But families today don’t tend to get access to services until they’ve been prioritized because they’ve reached a crisis point.
Because of that, people can end up in hospitals or long-term care homes for the elderly. In the worst-case scenarios, they can eventually be homeless or in jail. “We’ve heard of people coming to the attention of services for the first time after their parents had a health crisis or even after have died,” says Lunsky.
“The non-senior disabled community and parents of children with disabilities do not favour placement in long-term care homes,” reads the Canadian Healthcare Association’s report on Facility-Based Long-Term Care. “Still, there are younger disabled persons residing there, often inappropriately located in environments with confused elderly residents.”
Instead, the transition away from parental care would ideally be a staged process, where adults minimize their dependence on their parents as other services are put in place. “We have to get better at creating networks of community based support, formal and informal, paid and unpaid, so that as parents age out of being able to provide support, people don’t end up being in either crisis or long-term care facilities,” says Bach.
“We rely on families to be the front-line of care, and as they reach their limits, far too often people end up in the wrong places.”
The comments section is closed.
While years have passed since this was published, the subject interests me because in the USA, I am still a huge part of my physically-disabled son’s life. While he has found his niche and created his employment to pay for a 24/7 caregiving staff in our home, inevitably there is constant turnover, requiring my support at a moment’s notice. As a mother that is reaching her mid-60s I face these challenges with him. He has proven to be self-sufficient, but let’s face it – when all you can do is move your face, and you’re depending on a paid staff – you need a back-up plan of family to cover the gaps! He and I both wonder what will happen when I am gone, and even though I think he’ll pull through, I know it will be incredibly difficult. Meanwhile, he is a business man with desires and needs of his own that far surpass what his mother can help him with, and there are social challenges for both of us as we navigate the best possible future for us both. We are very blessed, but still fall into the category of the people mentioned in this report.
If you post without commenting, eventually your readers will move on to greener pastures.
Can’t afford senior care?
I’m reading an April 7th 2016 paper and in 2019 and I am in this position as a guardian to my 32 year old severely disabled daughter. Is there a more recent paper….the situation has probably not changed at all from what I am seeing here in Ottawa. Most group homes that are accepting adults on the waiting list are not suitable for my daughter who need 24/7 care. They are over crowded and usually staffed by minimum pay care givers who don’t hang around very long once they experience the working conditions and the severe disabilities they are expected to care for.As a parent guardian I am wondering if it would not be better for some severely disabled adults who require 24/7 care but who can communicate with their facial expressions and body language and who would benefit from and give benefit to the company of senior adults in retirement homes where staff are better paid and trained and willing to accept the care giving responsibilities of special needs adults until a dignified ending to their lives. Most Ontario group homes that the average middle income special needs adult will end up are more like mini institutions as per the past larger institutions like Rideau Regional in Smith Falls Ontario. While the idea of moving them out into the communities was a good one and the homes established are nice…..they still eventually end up institutionalized in group homes with access to much fewer mental health and physical therapeutic services. Oh dear…I am preaching to the preacher!
My mother is currently at her breaking point. She has been unable to find any resources to help her with my brother. He is severely handicap with a rare condition called Lissencephaly
Pachygyria. He’s 21 and much much bigger then my mother. She had found a home in Ontario but was turned away because my brothers disability was far to severe for their staff to handle. As of right now my mom find it’s just easier to do it herself and just deal with it. But it’s beginning to ware her down thankfully with the help of my younger sister who is a single mom herself my mother has a respite worker (my sister) My brother has severe seizures daily and still in diapers. He has rages some times and hits my mom and has hit my sisters son, out of frustration due to his lack of ability to communicate what he wants. My mom needs some help, I wish I could help her but I’m in Alberta and don’t have the money to just pick up and leave to Ontario to help. If there is anyone who can point us in the right direction please email me wlethbridge88@gmail.com
Thank you
I know this situation well. I have an autistic adult child with prevasive disorder as well. I worry every night what will happen to him. His father has re-married and has left him out of his will leaving the house which I left my half in our childs name at time of divorce.
I clean for a living and will be sixty in two years. I support him as well as I can with feeding on the weekends plannning outings getting outside help to help him learn to keep a house cook his meals as such at 145.00 a week. I recieved a flat no told to take him to court on what I have nothing left. I spoke to legal consel and it was recommended that I sue on my own…really?! I am going to get beaten by 3 high priced ones on his side…good luck. I am in dispair of this situation. He will be homeless and penniless. the rent for his apartment is 900.00 a month on 1100 a month leaves very little for food, hyrdo or getting a haircut. If i die i have a small insurance policy for him but if left to his own devices it will be gone in less than a year. Help me please.
Hi i am single mom my self i have 47 years old i have 24 years old daughter with disability, i been taking care of her all my life i cant work because i am the only care giver to her i am on social assistant i was wondering if their is family care giver benefit, that help me with some financial, because i need some help i cant work because of this reason my financial life is very low ,please let me know if you know any government agency that i could apply .thank you so much.
Hello Josephine you have probably by now found out that caregiver benefit only benefits those that are not parents and who have been working and have lost income due to their caregiver duties.Not those of us who have never really been able to work because of their childs disability.I am in the same situation my son is now 28,but really he is a child.Ontario works is temporary help.It is not for someone to try and make a go on it for 24 yrs.They need to have something else for longtime caregivers.I don’t need more passport I need a raise in basic expenses.Take care of yourself.
Our daughter is 20 with Rett syndrome I care for her 24/7 with the help of my disabled husband and her brother and sister. She can not dress,wash,feed,or care for herself. At risk of wandering off if left unattended at any moment. Does not sleep hardly,has behavior issues ,anxiety, PTSD from caregivers during age 4-6 after that we kept her home. I have been unpaid caregiver which is cruel….disabled husband and daughter is enough and yet poverty is the straw on our back. There’s no savings or respite….
I’m so sorry to hear that. We definitely need more supports for parents like you.
I am a disabled 51year old female. My housing through BCHousing after 17 years, did not allow me to stay because it was a 3 bedroom and only 1 child and myself were there, causing us to be overhoused. I moved in winter from Ft. St. John and have been in a travel trailer with my belongings under a tarp 1000 miles south. I do not know anyone, but my mom who brought me here. I had a complete breakdown, with Lupus, and could not even speak. 9 months later I am on medication for ADHD now, and have no home. I am scared, have thought of suicide, and no hope. Cindy
I do work p/t as a teacher assistant, but $950 a month is not enough to live on.
Please don’t take your own life! If you’re fealing at all suicidal, talk to your doctor. If you don’t have a doctor, please go to the ER as at least you will have some shelter, and there may be a social worker on call who can help you out with your living situation. Prayers and gentle hugs! Maria
Cindy – I’ve had my battles with depression, too.
When you lose all hope, you can turn to Jesus Christ. We have not been given anything mire than we can bear, when we put our faith in Him and gather our strength and courage from Him.
It can be difficult to see, but however difficult your challenges may be, if you look at them closely, you’ll find greater opportunities within them.
God bless.
Go to the womens shelter in your area they will help you and give you shelter and food. It is a safe place to be and they will help you attain housing and keep you till you do. Many churches like Salvation Army have places also and they can provide a hamper as well. This is not the time to be proud but be humble. They as a group will help you on your rise back.
We have been on the crisis end of this discussion. My 34 year old developmentally delayed son was in a group home for 10 years. We have had problems from the beginning. Some people who work with the mentally challenged are amazing people but many are not. They don’t give people space, they push the wrong buttons, they set your child up for failure. Final result for us is my son ended up in a mental health locked unit. Spent five hours waiting within that unit told he would have to spend at least one night. Thank God the busy psychologist finally talked with us and we were on our way within ten minutes. Even he realized it was his environment and he hardly knew us. It sure opened my eyes to what can happen if the developmentally delayed person doesn’t have someone who can advocate for them. So very very sad. Group home says if they have problems with him again they will call the parents second. I want to be first because I love him, at the end of the day he is just a job to them. The group home and our family are still in conflict. He is home with us and doing wonderfully.
My son was raised in group homes thanks to my ex husband. They are a scary place many are there for the cheques but there are the bright stars. My son was over medicated and was abused and raped by others it took me over 10 years to get him normal again before that treatment happened and if it was not for his therepist calling me just before his 18th birthday and telling me to get him on that day he could been there for ever. They are horrific at least it was for him.
kudos to you and yours for taking him out of there.
In general, through no fault of your own, you are required to take care of a disabled individual- often your child- in perpetuity. If it’s a child, it is as if you are required to pay in perpetuity for trying to renew society, but failed. The social agreement between society and it’s citizens needs to be clarified.
Many disabilities are completely random, and as such, it should be possible to buy insurance: none are offered. Political?
I am a single parent. I have been caring for my son who is nonverbal and legally blind (developmentally around age 3) for 35 years. I also raised 2 other children & moved to another country to support them(only option at the time). We have recently been offered a group home bed in our community and I feel very blessed by this; I sincerely mean a lot of heartfelt prayer went into this happening, when no one was responsive. I have waited 2 years for Passport funding and feel we could have continued at home if we had been given the dollars to give him opportunities outside the home & respite for me. As it was, I hit bottom with fatigue & depression & had to admit that in order to get help. Parents keep telling themselves they can do it when no one else will until something caves. The governmental agencies(DSO) are so removed from personal contact and unresponsive that parents are left only to support each other as best they can, which also takes needed energy. Add to that, the worry about what will become of your child as you get older (over 65) and develop chronic illnesses and it becomes a heavy burden. Developmentally disabled adults are not being supported financially to the extent they should be by our government (provincial) and as a result a crisis is building for which there is little advocacy. The only agency I can commend for filling the gap are local, VON and to our relief Community Living. I would also like to commend our local MPP & his office for their efforts to advocate.
Thank god for VON.I think without them the health care system would collapse. When they seem to throw extra passport funding I wish they could apply that to administrative costs so that each family’s situation could be looked at individually.Right now I have more than I can use.Because I have to spend it to get it back.I am on Ontario works my son is on ODSP .So we live month to month.What I would put out I would need backright away.WHat I can get covered for is not what I need.
My daughter is also on waiting list for housing through DSO. it is very frustrating. She wants to move out and get on with her life. but the wait goes on.
We have a son Kyle who is 26 yrs old. I have just retired but he lives at home and has a part time job. He receives around 950$ a month. He is quite high functioning but has health issues, seizure disorder – needs medication, help with finances, help with meals. He battles depression and anxiety very much so. We have had a few supports thru high school for about 1 to 2 hours a week. Rec;d about 800$ a year for respite. We are on the list for passport funding but as we have been told we will probably never receive it. He is not severe enough even though if we are not here he does not know how to take care of his health needs or his finances . He does not want to end up in a group home or hospital. He has a brother in Alberta but may not be able to care of him. He would Ike to stay in the community he has grown up in. There needs to be more housing in our area of Hilton at the moment there is none. And why on we being told he will not receive funding> . I know so many other families in our area who are also in the same predicament. He cannot live on 950$ a month. Not possible and what about his health(depression, seizures etc.). quite frustrated at the system but I am working with parents in my area and a coordinator to build alternative housing with supports in place.
Our daughter is 28yrs old next month and receives $2000 or year for passport funding the same amount she was approved for ten years ago while she was still in highschool. On wait list with DSO for housing….literally waiting for someone to die.
How is this serving the needs of individuals and their families?
Agreed!!! I have been the primary caregiver fir my son who has Downs Sydrome and numerous health issues. As I age and being a single parent for most of his adult life, I worry about what will happen to him if I cannot continue to care for him. I have done some financial planning for him and hopefully his siblings will continue to advocate for him but I am unsure of what his living arrangement will be. It is definitely a worry!
Yona Lunsky speaks truth to the situation. The crisis is at the breaking point far too often for far too many families. We need to be upstream. Thank you Yona – you do endless work to help show the world how the system needs to improve how we help families.