Thursday, January 3, 2019

Navigating Ontario's Homecare system

Navigating Ontario’s Homecare System

For over three months since we returned home from the hospital we have been learning about the homecare services Ontario offers.  We have been completely floored by the variety of services available, and by the number of people you deal with in order to access these services.  It’s like we’ve discovered an unknown world behind the scenes, a world you’re not aware of until you need help.

There are 5 parts to the services the health care system provides.  First, there is a coordinator, who arrives about day two for a general conversation about your needs.  My top priority need is for assistance getting in and out of bed, since I am paralyzed from the chest down. 

For the actual services we have an occupational therapist who comes to consult with us about the mechanical lift I use, and my wheelchair.  We also had a physiotherapist and her assistant, who came to the house for about six weeks.  This is intended to give you time to find your own professional physiotherapy, which you will have to pay for.  Extended health care insurance often covers the cost of this physiotherapy.

What I think of as the fourth level is the Nursing Team.  They will visit once a week, and fill out a record of how we’re doing.  If needed, they will come more often, in the middle of the night if necessary.  Accessing all these professional services at home as needed seems quite remarkable to me, and very helpful for my continued recovery.  But it has left most of our fall a hectic schedule of appointments and visits - 19 in one week!  We've never been so busy.

The last level is the one we’re struggling with now, the provision of PSWs (Personal Support Workers).  These are the people who do the actual work at your bedside, getting you washed and dressed and overseeing any other personal care needed, and then using the lift to get you into your wheelchair.  Once I’m in my chair, I’m fine for the day, but I do need that personal help to get there. 

Two days before coming home we were told we would be getting help for two hours a day – great!  The next day we were told ‘oops, there are none available in your area, so you won’t be getting any help’ – not so great, in fact it’s terrible!  We realized in the very first week that we would need help with this, and in the first two weeks our only alternative was to hire a private ‘PSW’ who comes 6 days a week in the mornings.  She is both very competent and very pleasant.  She has saved our butt!

Only a month ago we started getting some evening support, at first just two nights, but a start.  Then we were told we’d be getting 6 nights a week.  That was encouraging, but so far the most help we’ve had is 3 nights, and over the holidays I think we only got support 3 nights in 12.  It would be very easy to rant and rave about the shortage of staff in this particular service program.  Finding more support to help us get me in and out of bed is our top priority right now.

There are also lots of scheduling issues with the PSWs too.  We often only hear the day before whether any help is available.  We’ve had offers of help at all hours of the day, but medically, my need is for a reasonable hour of help in the morning and evening.  Some days that is not available.

But before I mislead you, let me say that everyone who has come to the door, or been reached on the end of the phone, (about 25 people over 3 months) has been pleasant and as helpful as they can be.  They know the limitations of the system as well as we now do.  They just cannot fix the system any more than we can.

Out of this 3+ months of learning the system, I’ve reached a few conclusions.

      -It’s amazing that these services exist at all, especially at no cost to us (there are others you do need to pay for). 
     Given the $25.00 - $50.00 cost of keeping someone in their own home and the $500 - $1000.00 cost to keep someone in a hospital, it’s easy to see what’s economically sensible.
         The people we deal with have been uniformly pleasant and helpful. 
         But the PSW portion of the program faces a serious shortage of staff and funding.

     Tomorrow the services that you have to pay for.


  1. Keep sharing. Keeps things real. I learned a great deal about the system in BC when I was my Dad's care/find/do/get help person.

  2. You are answering questions I had...I wondered how you got in and out of your wheelchair...just could not imagine what you had to do. I will be interested in hearing the rest of your description of services.

  3. It is quite a lot to deal with, on more than one level, and I know there's a chronic shortage of PSWs out there.

  4. We hear a lot of talk about home care but it's not a complete system. there are too many cracks for people to fall between.

  5. Wow, a lot of answers for questions, as you said, you don't need until you 'need' them. You are a very laid back person, F.G. and the perfect one to inform us all. Others would not be so understanding and your post would have been more of a dissatisfied rant. Thank you for being sincere about your challenges and assistances.

  6. I am not sure of what care is available here, apart from support after an accident. We have had personal care, after Hugh had a shoulder injury when he fell and broke a small bone, showering was the most important, and when I had a knee and then a rib injury, home help was provided. I do know that down here, they try to keep everyone in their own home as much as possible.You sound positive about each area of assistance, and that must be a huge advantage in coping day to day.We are being realistic, and the first big renovation in our home now will be a new bathroom with a walk in wet floor shower.Maybe not needed right now, but an asset that will be a huge help maybe in the future.

  7. My husband works closely with PSWs - or care workers as they are called here - and they find the same problems in getting help to those who need it - always a shortage and scheduling is really hard to coordinate. While everyone is pleasant and helpful - it is still a hard job for all involved. Your attitude is great - I appreciate all that you share.

  8. It is tragic, the lack of budget for PSWs. My client has someone once a day. They are not as great as yours.
    We don't train them well, there is poor pay for them, and they don't get mileage, some are amazing, others, awful. Some gossip about clients. "The system" works well, but the investment in it is weak. Taxpayers and politicians just don't understand.
    I am very happy it is all working out for you, for the most part. It's been a journey. Thank you for sharing it.

  9. The system may be faulty in some ways, but it is head and shoulders above the care you would receive in most places in the US. There are many times I wish I was a Canadian! Thank you for all this information, I appreciate it.

  10. and I used to complain a lot about how the system was broken when my dear father was in need of services. I have a good friend who has stepped into the breach to help her friend who cannot get any help.

  11. Interesting how things have changed over the years.
    Thanks for the information.

    It's about time.

  12. So many things you have to deal with. I pray you get all the help you need.

  13. My sister dealt with such help for my parents as they aged. Dementia plagued then as well as my FIL. Hubby dealt with that mostly. Even took early retirement to be able to care for his folks. Eventually his mom had to be in full time nursing care at her own expense. A SIL developed MS in her mid twenties. She progressed to being a quadriplegic by her early 40's. They retro fitted their home in California. Later moved to Tennessee and had to do another retrofit for doorways, entrances and bath. She passed away in her mid 50's but had managed to raise two daughters. So glad you have many of the service expenses covered.