A visit from ALS rep

[Firefighter58]

Hi Pals, I had a visit yesterday from my ALS rep. She advised me of a program in Ontario called Direct Funding Self Management Attendant Services. This is a program where the government opens a bank account in your name and deposits money in the account every month enabling you to hire and pay your care givers. This sounds like a good program, I was wondering if other ALS groups offer something similar, if not may be they should. This is not a loan or any thing like that. But is taxable income but you can write off all your expenses.
I was also told ALS will supply me with an electric wheelchair, an electric scooter or a lift or a lift chair. I have asked for a lift chair.. Again I was curious as to if your ALS offers all this.
Al

 

[Vincent]

Being in Ontario as well, I have all this available too. Most of the funding comes through Walk for ALS in various communities throughout the province. The Direct funding is run by the Ministry of Health completely separate from ALS Canada. Apply now, it can take up to 2 years to get approved. You are also responsible for paying the caregivers taxes, CPP, WSIB, and all that jazz. Basically you need to set up a payroll department. You also aren't allowed to hire family. A good program but kind of labour intensive. ALS Canada is a great resource for equipment. I was told to try them before buying anything. I haven't been shut out yet. The regional managers are also excellent resources for info and such. It's an expensive disease, on average it costs north of $32,000 a year out of pocket, every year. Even with all the stuff government covers, it will bleed your bank pretty fast. Any free stuff is welcome.
Vincent

 

[Firefighter58]

Thanks for the info Vincent.
Al

 

[Angiegal]

I heard about this at the support group here in Kitchener.... It sounds (to me) like it would be great for someone who has management experience. It's something I'm thinking about, but still looking into it.
Anyone else here from Ontario?

Angie

 

[Gotty]

Hi there, This is Gott,y from Toronto. Greetings Canucks!
A fellow PALS at the Sunnybrook Hospital clinic ( my 'club') is on this program. She swears by it! Just think of having consistent care by the same peeps everyday! You hire, train, pay and it works really well for her. She has several people lined up to do various things whether errands, personal care, anything at all. Always a backup in place should something come up with someone's schedule so they cannot make their shift. No limit to the assistance she requires.
I understand you have to write a proposal/plan and budget to apply. Then, attend a meeting to discuss your plan with a committee. I highly recommend applying as there are limited funds to go around and as Vincent mentioned above, a few year's waiting period.

One reason I am hesitating is the personal/business management (payroll, and all), though I presume I can find someone to assist in the set-up. Another reason is that I am not sure I can anticipate what I will need for assistance.
That said, I am sure I can take a stab at it. I'd be happy to share with you all at that time if anyone would like...
Good luck with your planning.
Gotty

 

[Angiegal]

Thanks Gotty....
Like I said, I heard about it at the support group here in KW. I plan on asking the team at LHSC more, next time I'm down there.

 

[frankb]

Congrats to our friends in the great white north. What a great program. Haven't heard of a like-program down here "south of the border."