Aging caregivers of children with disabilities “pushed to the breaking point”

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  • Patricia says:

    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.

  • LigaZ says:

    If you post without commenting, eventually your readers will move on to greener pastures.

  • Willard Warmack says:

    Can’t afford senior care?

  • Gary Labelle says:

    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!

  • Whitney says:

    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
    Thank you

  • Kay Crevier says:

    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.

  • Josephine safar says:

    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.

    • joan schnare says:

      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.

  • Jeannie says:

    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….

    • Vanessa Milne says:

      I’m so sorry to hear that. We definitely need more supports for parents like you.

  • Cindy Bruce says:

    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

    • Cindy says:

      I do work p/t as a teacher assistant, but $950 a month is not enough to live on.

    • Maria Moores says:

      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

    • Christian says:

      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.

    • Kay Crevier says:

      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.

  • Heather says:

    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.

    • Kay Crevier says:

      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.

  • Chuck Jolliffe says:

    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?

  • Shirlene Alveranga says:

    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.

    • joan schnare says:

      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.

  • Margot Kitchener says:

    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.

  • Fran Stewart says:

    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.

  • Jane Riviere says:

    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?

  • Paulette Husfeldt says:

    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!

  • Sue Hutton says:

    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.


Vanessa Milne


Vanessa is a freelance health journalist and a form staff writer with Healthy Debate

Sachin Pendharkar


Sachin Pendharkar is a respiratory and sleep doctor and an Assistant Professor of Medicine and Community Health Sciences at the University of Calgary.

Maureen Taylor


Maureen Taylor is a Physician Assistant who worked as a medical journalist and television reporter for the CBC for two decades.

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