Part 2: No more 24 hour care at Abby Road

SHAWN McCLOSKEY // PHOTO: John Lucas, The Journal

Shawn McCloskey is one of 14 residents with a disability at Abby Road Co-Op. After administrating their own home care for over 20 years, Alberta Health Services informed the residents several weeks ago their contract would not be renewed, and Revera would be their new provider. And this is where it gets downright scary. We’ll let McCloskey explain in his own words.

“As of right now, we have not been guaranteed 24-hour care (with Revera). There are multiple ways in which this has not been guaranteed as well. Right now, people at Abby Road who need home care services have a schedule when staff show up to do those services. In between those scheduled services, which can be multiple hours apart, people can need non-emergency help for a number of reasons. Dropping keys on the floor, putting on jackets, getting a glass of water, closing and opening windows. Abby Road users refers to these requests for help as "on calls" .

“We call the support service office, leave a message and wait for a staff member to come to our suite. We rarely wait long than 30 minutes. The staff is able to accommodate these "on calls" due to being let out of scheduled services early, or by having small gaps in their schedule between services.

“Revera has told us since these "on call" services are not scheduled by AHS, they cannot provide them. Revera gets paid on a pay-per-service basis and our "on calls" don't fit into that kind of model. Our block-funded model does however, quite well. What this will do is deny us the flexibility to go to work, school, community events. It hamstrings us to the point where we cannot effectively participate in society.

“More troubling is what this means for us and overnight care. Currently, we have two staff members working at night 7 days a week. And we desperately need two people working at night. The staff, at night, are largely just turning people over in bed who cannot turn themselves over, but it is back-to-back: one service right after the other. And then, when you add in "on calls", it is very busy. The problem is that there is lull in services between 2 and 5 A.M and Revera does not consider "on calls" at all, so it appears on paper as if our staff have less to do. That makes no business sense for Revera, so they won't pay for two staff members at Abby Road overnight. And the reality of that is if there is not enough help here at night for people who really need it, they cannot live here. At Abby Road, we have 14 residents with high level needs. If there is no overnight care or the flexibility of "on calls" at Abby Road, we (I am one of the 14) will be forced from our homes into long-term care facilities … essentially a hospital room."

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New home care provider won't cook meals: user

SHAWN McCLOSKEY // PHOTO: JOHN LUCAS, Edmonton Journal

Fourteen residents residents with physical disabilities of  Abby Road Co-Op in Edmonton are very tense as they prepare for a new home care provider. Their concerns range from Revera, the new care provider, not cooking meals to not providing 24-hour care to people with high needs. Resident Shawn McCloskey emailed Tait Talk with his concerns.

McCloskey says Revera has already made it clear they would warm up frozen or microwavable dinners. But not cook for residents, Revera says it’s “industry standards” and their staff is not trained to know temperatures. If Revera staff cooks something and a resident gets sick the are liable. But McCloskey says that’s only one issue. By only heating up meals, who will prepare them in the first place? Family members? What if a resident doesn’t have a family member in Edmonton. “What if we eat food that needs to be prepared but not warmed up - particularly at breakfast and lunch? Do we go without food? Ultimately what this will do is make us more dependent on other people.”

McCloskey goes on to say Revera is “implicitly acknowledging that the members of Abby Road are losing the right to control their home care and thereby their own lives. “As it stands, I am perfectly capable of knowing when my burgers are grilled enough, my potatoes baked enough and my vegetables steamed enough,” he says. But the mistake Alberta Health Services made by giving the home care contract to Revera, says McCloskey, is this: “Givng away my right to decide these things. This is not about food exactly. The larger issue here is that, with Revera, we are unable to determine what is best for ourselves.”

NEXT@NOON: PART 2 – NO MORE 24-HOUR CARE AT ABBY ROAD

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Redford meets us for coffee; home care discussed

Alberta premier Alison Redford accepted our invitation (CLICK HERE TO READ OUR REQUEST) for coffee Sunday morning to discuss changes in the delivery of home care across the province. Three of us from Creekside Support Services — Larry Pempeit, Heidi Janz and myself — met with Ms. Redford for 30 minutes in a second floor meeting room at the Alberta legislature. Human Services minister Dave Hancock was also in the discussion who said he was going to relay the information to health minister Fred Horne.

We shared out concerns about how Alberta Health Services came into the condo building we all live in and tried to implement a new home care provider without even consulting with us. Ms. Redford was especially interested in how this was handled. “I want to make sure I understand this,” she said several times while her aides were busy making notes. She said she was unaware of how things were handled, especially when CSS users have direct input in the care we get. We told her we plan to fight the battle to the end, when our contract runs out July 31.

Ms. Redford said she will look into the Creeskide situation as well as Abby Road and Art Space in Edmonton. “We have work to do,” she said near the end of the meeting. We couldn’t help but feeling a new sense of hope for our situation — and the willingness of Ms. Redford to have an open discussion on the matter.

We would like to thank Neala Barton, Director of Media Relations and Spokesperson in the premier’s office, for responding to our request the day after it was on the Talk Talk blog. Heidi also sent it out to the premier’s office and Mr. Horne.

THE TAIT TALK CONNECTION. CLICK HERE!

Guest blogger Nic Good: Stop cuts. NOW!

Fred Horne,

Minister of Health

Government of Alberta

Dear Sir:

I would first like to commend you on a job well done. Your decision to fire the entire AHS board was an excellent one. With your position as health minister comes great power. It is up to you to choose how you direct that power. The AHS board deserve nothing less for defying your recommendation to withhold the bonuses, especially amid all the cutbacks and deficit reduction that you are placing on the backs of persons with disabilities. I am a person with a disability and you are putting in place a plan that will greatly influence my quality of life in a negative way.

You and the premier Alison Redford have stood at the podium and repeated time and time again that the quality of care we will receive after giving the contracts to a for-profit agency will remain at the same standard and high level that I am receiving right now. You have said that we should trust you in this changeover. You have said that the well-being of the people receiving the care is your utmost concern. Please explain to me how the following situation is possible.

Revera is the for-profit agency that is taking over the contract for care at Abby Road. The very first day that Revera was on site to announce their scope of work they said that they will provide the service of warming up meals; however they do not do meal preparation. The Abby Road agency did meal preparation AND heating. Explain to me then how this is not a reduction in the quality of care? How is this possible when you have stated over and over the quality of care will remain the same? On the first day the agency taking over announces their scope of work to be inadequate compared to the previous agency! On the first day!

Are you kidding me?! There are only going to be more shortfalls. There will only be a growing number of persons with disabilities receiving inadequate care with your new system. Here is another situation that requires a decision to be made by someone with immense power. That person is you. I strongly encourage you to fix this before it even gets started. I strongly encourage you to make an exception for Abby Road, Art Space, and Creekside. Renew their five-year contracts, let them keep their existing caregiver agency, let them remain fully in control of their care. You have the authority to allow these people to continue living with the caregivers of their choosing! Any reduction in quality of care has an equal affect of reducing quality of life. Please stop this change now!

Regards,

Nic Good

CLICK HERE TO SIGN THE ONLINE PETITION!

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From guest blogger Brenda Currey Lewis: wheeling backwards

 Brenda Currey-Lewis:

I am outraged at the cutbacks being forcefully changed for the worse, for disabled persons. Just imagine the Redford government being hailed for maintaining one of the best, open-minded set-up in the country for disabled people living their lives the most independently and most successful as they can.  Making their lives as close to normal while still not being extravagant. Well, that can no longer be on her record.

Is that the problem? Do you think disabled people are taking advantage of the set-up in place to being independent are using and abusing the system? Think about it!! God forbid you or someone you love having a life changing accident or debilitating disorder that can show up no matter what the age, having to be in the system. Striped of abilities they once had, a schedule they had control over, coming and going as they see fit, the opportunity to hold down a good job, enjoying a good social life, all being thrown away. Now having to eat at a pre-set time, get out and in to bed at a pre-set time, have to be set a time to eat everyday or else going without. It’s happened in other situations. Would you be content with them living in a nursing home or perhaps you would quit your job to look after that special someone or vice-versa? Wouldn’t you want that person to enter the system with the opportunity to have control over as much as their life as possible instead of fighting a system that do not have the best interest at heart?

I’m disabled. But fortunately do not need help getting in and out of bed every day or help with other bodily functions. But, that may be the case someday. I am still in the system and the stuff I go through and deal with on a daily basis is stressful enough without having to face the consequences of cutbacks. I have many friends who will be affected by these changes. Chills are rushing up and down my spine.  Now I hear it is not up for discussion!  Well, disabled people may be viewed as one of the weakest links in the chain, therefore an easy target for cutbacks but I’d re-think that. We have so many other things to fight for but if you would like to add to that, I think we’re up to the challenge. Ms. Redford has said to ‘trust her’, but as my good friend, Dr. Heidi Janz, has already said, trust needs to be earned first and sadly there is no foundation to build trust on anymore!

A very concerned citizen,

Brenda Currey Lewis

CLICK HERE TO SIGN THE ON-LINE PETITION

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Put the $3.2 million from AHS bonuses back into home care

We may have found $3.2 million for Alberta Health Services to re-invest into home care. And since AHS is saying they need to cut $18 million from Home Care, according to my math, that figure could change to $14.8. Provincial health minister Fred Horne fired the entire AHS board Wednesday after they rebuffed his request not to award 99 executives with performance bonuses, totaling $3.2 million.

So we have $3.2 million that could be very easily invested back into the system. Three point two million dollars, folks! Home care users are being told by AHS their care providers are going to change because of finances. But $3.2 million could also point a different spin on this, absolutely. Imagine what $3.2 million could do in retaining some home care staff who have been working with home care users for years. Think of what $3.2 million could do to keep those long and trusted relationships going.

And we have another suggestion: since Horne fired the entire 10-member board, the same board that initiated these home care cuts, we ask the cuts be reversed. Make them null and void. Because obviously the board wasn’t doing their job.

If they can’t make them null and void, perhaps they could revise them. After all, there’s $3.2 million which could be put to very good use.

CLICK HERE TO ADD YOUR NAME TO THE ONLINE PETITION

"They're my second family" — health care aide

Genita Bailey has worked as a personal care aide for Creekside Support Services in the Mill Creek area in Edmonton for the past 12 years. But it’s more than a job to her: it’s like a second family. Genita says she has worked in nursing homes and hospitals before, but there’s something different at Creekside. “I really feel close to the people I work with,” she says. “I know them on a very personal basis and if they’re having a few challenges, I pray with them and try to help.”

CSS was in danger of losing their contract from Alberta Health Services. However, AHS reversed their decision last week, meaning Genita and the other staff kept their jobs.  “We’re a team here,” Genita says. “If someone needs some help we ask other people to help us. I just don’t do personal care — I get to cook for people and help them with meals. I really enjoy that.”

Personal care aides are a very special breed of people. Not everyone can perform what they do with ease and dignity. Genita is one of them. She loves her job for many reasons but here’s the biggest: “My daughter is sick and I can’t be around hospitals because of infections I might pass on to her. But I can work here, and help people — and not worry about passing an infection to my daughter.”

Guest blogger Vivian Ross: What will happen to me?

Vivian Ross:

I have ALS and require total physical assistance. These supports enable me to remain in the community as a full participant, something that would not be possible in extended care. Our Creekside staff are wonderful caregivers who respect us and don't view us as patients.

The news about this redistribution of contractors is absolutely terrifying. I have been left out in the dark of the decision-making process and am very fearful. What will happen to me? These imposed changes to our care will not merely result in the replacement of one PCA for another, but will also lead to a restrictive, dehumanizing, lifestyle change.

CLICK HERE TO SIGN AN ON-LINE PETITION

An open letter to the provincial government from Bill Cummings - 3 p.m. - June 10

Good afternoon;

The above named housing co-operatives stand united in opposition to the proposed change in funding and structure to their current living assistance program. 

As the son of one of the residents I know first hand how much interaction is needed, and how well the current AHS block funding non-profit system works. Currently the system that is in place runs smoothly and efficiently to provide these people with help at home, their homes, and their lives, the Alberta Government has decided that these people no longer have the right to choose whom it is that enters their homes, handles themselves physically, and is bent on "consolidating" such services to an agency for profit. I would like to make a couple of points here:

a. Why is the Alberta Government meddling in these people's personal lives and taking what little control they have away from them? The current system is effective, comfortable, and runs very smoothly.

b. If any one of you, were in these people's shoes, wouldn't you want to have some control of who enters your home, of who is helping you on a physical level, and who you are to trust?

c. The current system in place runs within budget, and there is no real benefit to this change other than some political corporate dealings.

I realize that the government enjoys controlling any and every aspect of our lives, but again I ask you, if you where in these residents shoes, which system would you rather have, do they not deserve some control, some dignity. This government has a track record of mis-spending, and running down Alberta's surplus. Making a decision that affects people who have suffered different degrees of disabilities is not going to correct, or replace mislaid funds. This action is set to take place August 1st, 2013. This is not going to go unnoticed, and as the date draws nearer, more and more opposing actions will be taken including making this whole situation as public as possible, so I ask you to do what you can to stop, and reverse this action that applies to 25 disabled Albertans.

I would like a response to this letter, including where you stand on this situation, and what you can offer to help correct it.

I remain,

Bill Cummings

PLEASE CLICK HERE FOR THE ON-LINE PETITION, AIMING FOR 1,000 NAMES BY TUESDAY AT 4:30 P.M. 

Coffee, Ms. Redford?

Dear Ms. Redford:

Let’s have coffee this week. We have a lot to talk about, you know. People with disabilities have yelled, and screamed and slammed many doors last week in frustration hearing the Alberta government is making changes to home care. We are scared. We are nervous. And we are wondering why this is happening to us when we weren’t even consulted.

But we are willing to put that behind us. We want to talk about the future and we want to ensure the best future for ourselves and our families … just like every other Albertan. We want to work with the government, have open discussion and tell you, face to face, why there isn’t any need to change it. We want to show you how we can, in fact, save the government money with non-profit groups.

We are not alone in our view. We began an on-linepetition Saturday, and as of 1 p.m. Monday, we had 375 people sign it. And it’s growing.

All we want to do is talk, and share ideas. Please consider this. And, given the home care cuts, suggesting the government doesn’t have much money, how about this: we’ll even buy coffee.

Concerned persons with disabilities.

CLICK HERE TO BOOK COFFEE.

Home care worker speaks out against cuts - Monday 12 noon

Kokila Ram:

I have worked as a Health Care Aide with Creekside Support Services for the last six years. Providing personal care to people on a daily basis is, of necessity, a very intimate relationship. Our clients/members allow us into their homes every day; we become part of one another’s lives. In this way, the clients and staff of Creekside have bonded together as a family. I have never seen our members as stressed as they are now, after hearing from AHS that their freedom is being taken away. I ask this question to those in government who made this decision: If, God forbid, something happens to one of our members because of all the stress that they are now under, WHO WILL BE RESPONSIBLE FOR THEIR LIFE?

There have been no consultation or any kind of discussions. Instead, this change is just being forced on people who need assistance with personal care. People who are in authority and have good and healthy lives cannot even imagine what it’s like to sit in a wheelchair all day and not be able to move without help. People with disabilities need and deserve to have people they trust to assist them with personal care. The proposed changes will bring fear and threat to the lives of our Members, who are being pushed into this against their will.

When I came to Canada, I thought it was a free country. Now, I’m not so sure.

CLICK HERE TO SIGN A PETITION AGAINST HOME CARE CUTS

Clients will be at risk: home care worker

Carlene Bellerose has every reason to be worried about her job. But that’s the least of her concerns. For the past 12 years she has been a personal care attendant at Creekside Support Services providing personal care for people with disabilities. CSS was told 10 days ago the provincial government would not be renewing their contract and a new care provider would take charge in July.

“I’m worried some of the clients I work with might end up in the hospital because of the change. And I’m worried they might not survive,” Carlene said in an interview last week. “I think the government is doing the wrong thing. I know the people here, and I know what they need. But I’m afraid if another home care company comes in, they won’t get everything done in the allotted time and there could be trouble.”

Carlene says she is empowered by people with disabilities with the self-directed care concept. “It’s not like being in a nursing home and the nursing staff telling you what to do. I like coming to work every day because I get to work with individuals.”

Carlene says working at Creekside is like a family environment. And it is a safety net for her. “If something ever happened to me and I ended up in a wheelchair I would want to live at Creekside because I know I would get cared for.”

CLICK HERE TO SIGN AN ON-LINE PETITION TO STOP THE HOME CARE CUTS

Guest blogger Cathy Asselin asks what "community" really means

Friday morning I watched Alberta Human Services manager Dave Hancock take his best shot at doing damage control on Global TV’s Morning News regarding the Redford government cuts to services for people with disabilities. He talked about how cutting $42 million from the funding for persons with developmental disabilities (PDD) would benefit program users by giving them more opportunities to be part of the “community”. As often as he used the word, I’m not sure Mr. Hancock understands what “community” means.

Community is when you sit with your physically disabled neighbors and listen to three representatives from Alberta Health Services tell you that the block funding for your support services program has been eliminated in favour of a cookie-cutter, zone designed, profit-driven, privatized, service delivery system. I Googled the name of the agency we were told would take over our care by the end of July. I looked at a site called “Rate Your Employer – Revera”. It was not pleasant reading.

I live in the Abby Road Housing Cooperative. It is truly a community in that it is a cooperative whose members are responsible for the running and upkeep of the building as well as the co-op bylaws; has an age range of residents from elementary school to early 90s; able and disabled members. Of the 50 apartments in the building, 23 are adapted for people with physical disabilities. I am one of them.

Abby Road was the brainchild of six physically disabled individuals whose creativity, ingenuity, hard work and perseverance imagined a home that would support their independence. They instituted a support services program for the disabled residents in the co-op so that they received the assistance they needed to live full lives whether they went to school, had jobs or volunteered in the community. Such a place was a first in Alberta and Canada. It has existed since 1988.

Over the past 25 years, Abby Road’s successful model led to the creation of two other similar projects in Edmonton:  Art Space Co-Op and Creekside Condominiums. These two communities also had their support services programs eliminated this week.

Allison Redford has asked that we “trust” her government’s wholesale cuts. Trust is when you are at your most vulnerable and another person takes on the sensitive work of helping you accomplish the most intimate details of your personal care. Caregivers, who have worked with us for years, believe in the value of what they do every day and we value them.

With Abby Road, Art Space and Creekside, the Redford government has an opportunity to build on a successful, well-established concept for delivering services to those who are physically challenged as well as support their caregivers. Premier Redford should try trusting us.

Cathy Asselin

CLICK HERE TO SUPPORT A PETITION AGAINST HOME CARE CUTS!

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Shadows or the horrid past from GUEST BLOGGER Dr. Heidi Janz

What a Deranged Man with a Knife Didn’t Do, Alison Redford’s Government May Just Accomplish

Heidi Janz, PhD

Five years ago, a man entered my apartment, demanded money, and began choking and stabbing me. He later, reportedly, told police that he had raised his knife to stab me in the chest, but  a bright light appeared out of nowhere, scaring him so much that he stopped and fled.

Five years later, my existence is once again being threatened. But, this time, the threat isn’t coming from a deranged knife-wielding man; it’s coming from a provincial government that, I thought, was sworn to uphold my human rights. And I am becoming increasingly convinced that, once again, nothing short of Divine intervention will save my life, as I know it,

I live in Creekside Condominiums, and have my Homecare service provided by Creekside Support Services (CSS), a user-run cooperative for residents of Creekside who  require homecare. With the support that CSS has been able to provide over the past 16 years, our members have been able to go to school, work, volunteer in the community and are participating fully in society. In my case, the flexible support that CSS has provided me has made it possible for me to work as a Professor at the University of Alberta, travel to speak at conferences, etc. The demise of CSS will in effect herald the end of my active career. This is my ultimate reward for a lifetime of striving to be a contributing member of society.

The unilateral decision of AHS to force all Albertans needing Homecare to entrust themselves to multi-national, for-profit service providers amounts to a willful negation of more than 3 decades of struggle by Albertans with disabilities for full inclusion in society. We are totally frustrated by the lack of consultation by Alberta Health Services and their failure to even let us know that this move was contemplated.  Through the implementation of this policy, AHS will remove the flexible  model of service delivery that has enabled us to participate in society.  We will again become isolated. Furthermore, we will no longer have any real say in how, when, or by whom our essential personal  care services will be provided. This  poses a very real danger to our safety.

In fact, my 89-year-old father is so worried about my safety  once my current caregivers are forced to leave that he is making plans to move into my condo to help care for and protect me.

My parents grew up in Germany under Adolf Hitler. I grew up listening to their harrowing storie of human rights evaporating as strangers barged into their homes at will and informed them of what they were to do. My parents also talked about people who had (or were thought to have) disabilities randomly disappearing from their villages.

These days, to my disbelief and horror, I find myself relating to these stories in ways that I never have before.

Is this really the kind of province that Albertans want to live in?  For all our sakes, I pray not.

PLEASE CLICK HERE TO SIGN THE HOME CARE PETITION

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New home care provider to make $12 an hour profit: home care user

Daniel Lidgett lives in Edmonton and gets home care. Here's his response on looming home care cuts.

Why are you making the changes? I am a tax payer as well! I need the services the "not for profit" support services grant me — Abbey Road Support Services, now your taking them away. Instead, I will be getting Revera a "for profit" organization.  Why are you trying to fix something that isn't broken? If I bowel accident, I have help from Abbey Road Support Services in minutes. How long would I have to wait for Revera, minutes? Hours? In my own filth!

I wish everybody in the provincial legislate had to live in are shoes/wheelchair for one day. It’s not not easy. We need help 24 hours a day.

Getting up, having a bowel routine which lasts for two hours, and then getting dressed. Being disabled is a full time job.

Then there's the staff of support services: they make about $20 an hour, not enough for what they do, but a living wage. Now Revera  — and they are for profit, remember — will get $25 an hour, but they only pay their staff $13 an hour it. So Revera is making a profit of $12 an hour. What’s up with that? So, taxpayer is paying for a big company.

Abbey Road Support Services is non-profit, and all the money is spent in-house. Please reconsider your decision to have it replaced.

PLEASE CONSIDER SIGNING AN ON-LINE PETITION AGAINST HOME CARE CUTS

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Fifty-three year old woman told nursing home next option

C

Meagan Sykes lives in Edmonton and shares...

I live in assistance Co-operative Housing, with 24-hour assisted help in case we need it.  The co-op has been open for 23 years but on May 13 we were told by the  Alberta Health (AHS) that on July 31 is our last day for the contract. Then we are turfed to bidders. Agencies workers will come in and help us with our personal care, then they will go. This means our Co-op Artspace in Edmonton won't have anymore 24-hr care. AHS told us that the ones who can't survive this I will be in a nursing home, and I'm only 53.

Why is AHS putting us back to 50 years when we were hidden. 

Thanks Alison for all the frustration and hardship YOU CAUSED. 

PLEASE CONSIDERING SIGNING AN ON-LINE PETITION ON HOME CARE. CLICK HERE!!

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Cam 'n Eggs - Home care user says no appeal process

My name is Shawn McCloskey, I'm at Abby Road Housing Co-op and I have a lot of concerns about the proposed changes.

For instance, after the not-for-profit care that I control, that affords me dignity and independence is gone, should I drop out of university and give up on trying to start a family? Because without the 24 hour care I have now, I am unable to do those things. And in all the meetings I've been to with AHS, I've heard of no assurances that 24-hour care will be available. This move takes away the independence of otherwise highly productive members of society. Some of our residents will lose their income without round the clock care, while others will be unable to participate in hobbies or social functions within the community. This is wrong.

More specifically, once my current care is gone, can the government assure me that I can even get out of bed in the morning? Shower? Get help going to the washroom? What if staff do not show up to for my care? Now we have back-up's upon back-up's to ensure someone will be there to carry out essential services. We work directly with our staff to make sure everyone is cared for. Does a for-profit agency really care about any of this? The relationship the Abby Road members have forged with their staff is directly related to the high quality care we have now.

And my last concern involves the very nature of my own government. They seemed to make all of these changes, and additional hardships to a group of people who already have enough to deal with, in the name of "bureaucratic efficiency", so managing the homecare system was easier on them. The government is supposed to work for the people: it is supposed to give people the means to become independent individuals, not take away those means. There was no conversation with us, no working relationship — nothing. "And if you don't like our decision", the government says, "too bad, because there's no appeal process". What does that say about us as a province?

PLEASE CONSIDER SIGNING A PETITION AGAINST HOME CARE. CLICK HERE!!!

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