Rise in Heating Costs Affects the Ontario Disabled

The recent spike in heating costs has sparked a dominoes affect for those stricken with disabilties and in particular those who are extra reliant on heat and hydro.

Dan Philion, featured in a CBC piece produced by an award winning documentary Producer and Hosted by Amanda Margison Sat Jan 25 on the affects of the rising costs of heat, is a barometer to that effect. in fact Dan is like a barometer on wheels, as he can reel off to you the various upcoming weather reports in seconds. Weatherman Dan. Ha

Dan incognito in happier times
Stricken with Muscular Dystrophy, Dan is affected more than "normal" people in reaction to cold and needs to keep a warm atmosphere to lessen his everyday pain, being that he's unable to take pain meds due to also having a heart condition.

He relies on not only having heat for which he uses natural gas, at a higher temp than most, but also hydro, to keep his powered chair and various lifts working for which he relies to get in and out of bed and shower and up and down his basement stairs and even his door. In the recent winter ice storms I can tell you he was more than a little concerned and there seemed no emergency plan in place for if power was lost. He'd have had to fend for himself,
especially since his care service providers refuse to supply someone to put him into bed at night.

Dan troops on though, and hopes to guest DJ in between band sets at an upcoming event which if the dances take off could lead to an ongoing part time job opportunity for him - doing something he likes too.

YRT transit costs are the highest in country
Until then, his ever dwindling left over money after paying his bills, will have to suffice for a proud guy who once walked and worked hard and who didn't ask for this life. Awhile back they actually took over his gas bill payments because he was in arrears as the costs escalated. Now they take it right off the top before he sees anything and after paying his bills he's left with about $150 - all for food, transportation, meds not covered etc. He puts on a brave front but I know he feels more pain and anguish than he lets on, and his diminishing physical health adds a dimension of insecurity an independent guy who raised two kids, mostly as single dad - and from a wheel chair - maybe we could all learn a little from him.

Please watch the CBC piece and support more than a 1% raise for ODSP recipients. If he can work he will. he doesn't need being forced and it took the Region 7 years to provide him transportation at night to even do so - precious time lost to use his ever receding physical limitations.

Disabled in York Region Council - Home Care Issue fails dignity test

I just got back from a stop in at Dan's - you might remember Dan Philion who is confined to a wheelchair by muscular dystrophy and whose simple request over Christmas to have someone put him to bed at night, as he cannot do it unassisted, has been ignored by the government appointed "caregivers" who claim they "don't have anyone available" to do this at night time. That confused me since most people go to bed at night, and if they are the community care access centre in charge of putting our disabled to bed, then you'd think they'd do that. Apparently not?

After personally assisting Mr Philion myself for the past month to bed, because his service providers apparently cannot and he has no immediate family able to,  I got fed up with the various excuses they've been feeding him. For one, if they don't have someone for that time I suggest they get someone, as obviously there is a need, and if it's happening to Dan - where people's dignity is being controlled by some company claiming they don't have the staff and "get what we give" you types of attitudes - then you can bet it's being done to others - and especially the most vulnerable who may not have anyone speaking up for them like Dan does.

YR's $4 transit rates highest in Canada
But I can tell you right now I will not let up on this issue - this I promise you! As I watch the way our seniors and vulnerable disabled are treated and expected to have a certain level of suspended rights and dignity because of their conditions is just wrong. PACC hosted both the Square Table on Poverty which included MPP Frank Klees and MP Belinda Stronach (although she usually sent a pair of stand ins) and Newmarket York Regional Councilor John Taylor among some including the now Mayor of East Gwillumbury, and as well hosted and prepared a social audit report outlining these issues which the region endorsed, but has since ignored. Questions of dignity and treatment of clients was a number one reported issue but little has changed to address it still. All I hear is fluff about how wonderful the same charities and care givers are doing, whilst people like Dan cry out to no one listening or face waiting lists too long to wait for. People need to go to bed every night.

He's spoken up before, as a participant in both the social audit, while in proces of having his child taken at birth based on his disability, and as well as part of that "Square Table on Poverty" so many years ago now it seems. His issue then was that he couldn't work because he deejayed and they had no transit service to get him there and back. That was 7 or 8 years ago - in 2014 they just finally began offering service to disabled after 10 pm after more PACC noise.

One idea that sprang from the Square Table was that they were also going to help start up a non-profit business that Dan was instrumental in seeing a need for, which was the trend toward people throwing out returnable bottles and a service that would pick them up. At the time, during the Square Table on Poverty which included someone from every level of government, MPP Frank Klees had a restauranteur that was interested to have the service he'd said and Stronach's person insisted they wanted to help make it so and would arrange a meeting there. Well it never happened that's all we know. I don't care who walked across what floor politically; all I know is nothing got done from ther on in so we folded the group. For years Dan asked me about that business that never was and the meeting that never happened. I guess a guy can dream. Meantime we complained about transit so he could DJ at least on occasion.

Virtually the same crew still runs the ships he's complained to, and PACC's efforts have been ignored or stifled, so he's been feeling helpless, even depressed. Imagine losing all control of things around you, and none would be so if not for your disability. You'd even have privacy for the most basic of needs like going to the bathroom.

HE STILL GET'S NO ASSISTANCE TO BED TODAYDEC - Jan 19 2014

THAT'S OKAY I'M KEEPING A TAB AND WILL BE BILLING THE COMPANY LATER FOR MY 'TEMP' SERVICES AND THEN DONATING THE MONEY TO DAN SO HE CAN MAYBE BUY SOME GROCERIES.

Dan relies on charity organizations just to get out his door. Well, guess what? They've shown up once all this desperate winter and he's now, in addition to that dilemma, had to deal with getting to bed, but today was a last straw for me - for this service provider company to now tell him they can't have anyone come and get him out of bed until 12:30 pm Sunday, when offering a to bed service time at 7pm, is outrageous and cruel. They don't give him a choice either, he is simply informed they don't have anyone today and that the end of it. Not today!

I referred Dan's dilemma once again to MPP Klees' office and as yet have heard nothing back. MP Lois Brown told Dan exactly what I told him she would whixch was that "it wasn't her department but she'd make some calls". Regional Councilotr John Taylor - the one with the most influence on the issue at hand and it's state - has thus far informed Dan about the new later service available for transit now and will get back to him regarding the CCAC / Caregivers issue and getting to bed. I hope he figures it out soon because I'm sure Dan is not the only one being forced into these vulnerable and inhumane conditions. This is Canada for Gosh sakes have we forgotten everything we stand for in our rush towards the " Canadian Dream?" And what pray tell is that dream anyway? To make excuses for everything wrong we do? Or to make results? I don't know anymore.

I plan to take action to raise a petition to have this company removed as care givers of our disabled. It is disgraceful, and when clients or patients tell these companies they are not being treated with respect - by repeat offenders - we also expect action not reward with new contracts because they are the cheapest. Shop around. You want to be in the human care BUSINESS you better be into it for the right reasons or get out!

Too much charity...not enough care.

Stay tuned!




Person with Disabilty being pushed to a Care Home over Bed Time Assistant

Room with a View
Happy New Year! I had a great time ringing in the New Year among friends, except Dan, who didn't come because, being in a wheelchair all day, all the holiday season, took a toll making him incapable physically of enduring the long night. Too bad. Before his partner of five years left him, she would assist him with this as well as getting into and out of bed at night and in the morning. Since then it's been a struggle for him having to rely on the possibility of getting a neighbour to assist him each and every night - something that should be done in dignity for those with disabilities and in this predicament - by a care provider.

Everyone deserves hope for the new year
About 3 am, New Year's night, after I got home, I had to go help Dan into bed as no one showed up to assist, who'd said they would. Of course, when it's a volunteer. you really have no recourse but to hope you can get someone else to help - and that your phone  / power works. Heck, he can't even be guaranteed his driveway will be cleared unless there is at least 4 inches of ice / snow and even then it's volunteer, so they may or may not show or by when you need out.

The system supplied someone to help him into bed for the first couple of weeks after his spouse left, but then told him they didn't offer the service past 7- 8pm. He explained he cannot go to bed then in his condition, especially when they cannot gurantee someone to assist him out of bed before 11am the next day.

" We don't have anyone at that time" he was told. That sense of helplessness beginning to take hold.

WELL GET SOMEONE THEN!

The system would rather he go into a home instead at exorbitant cost. He would rather they just supply someone between normal bed time hours of 11pm and 1 am to assist him into bed, which by the way, is already fixed with a pulley-like mechanism that allows him to be Velcroed in and raised / lowered with minimal effort. A child could do it. He then needs a couple of things plugged in. More rocket science. Yet they can't get anyone to do it? Replace them. P.A.C.C. will be happy to take over the service for them.

Make Wages, ODSP, and Assistance Rates an election issue
If C.C.A.C. wants to continue to be the chosen government sourced provider of care to our most vulnerable of our disabled and elderly, then they better be prepared to do it while offering them the best care possible,  including all care providers being able to speak English or the language of the attendee - and including dignity - and dignity includes feeling in control of going to bed at a time you are used to and a time that allows your body to physically handle it - being the intricate nature of your ever worsening muscular dystrophy.

He's has to call the ambulance guys a few times, more indignity, to put him to bed when he had no other choice. One guy told him,

" You need to go in a home".

"You go live in a F@@#$ home!" Dan yelled, just me in the room; wishing it upon the insensitive attendant.

Dan assisting community clean up best he can

The March of Dimes has a program that would assist in this case, however they have a five year waiting list. Should this guy have to disrupt his life, friends, home & supports he has because they would rather have him in a home? Or does it make more sense to provide a service to put him to bed? The answer is obvious. Meantime he's worrying about who will help tonight....and tomorrow night...and tomorrow night...and....

Frankly he's had it with our system and life in general. The little income he does get from ODSP - reduced further now as a single person with subsidized housing - leaves him little and relying on kindness sometimes for a good meal. It's outrageous. Anyway don't count a hunger strike out as at this point Desperate Dan is a nomer that fits the bill.

Politicians..over to you!

Tom Pearson