Rick Hansen's legacy hanging in the balance; he needs to address it ASAP

It has been five days now since the Vancouver Sun ran an investigative story on the Rick Hansen Foundation. (I have a link to it at the end of the post.) I feel I should write something … that I should have an opinion of what has been said. Because I consider him a friend: we met in 1979 when he was playing wheelchair basketball and I was a rookie reporter, and then I covered the Man in Motion World Tour for a total of three months for the Edmonton Journal.  Still, I don’t know what to say.

Hansen in Edmonton last March // PHOTO: Bruce Edwards, Edmonton Journal

Hansen is a Canadian hero. His tour, which began on a shoestring budget in 1985, created a multi-million dollar corporation. And that’s where the story is. Vancouver Sun reporter David Baines is known for his investigative work. Some say he’s the best investigative reporter in Vancouver. So for him to take on Hansen in a 4,100 word piece is, by itself, a statement. Haines allegations are quite alarming — even to me.

David Baines,  Vancouver Sun

I have always known Hansen as a man who faces challenges head on. It’s surprising to me he declined to be interviewed for the story. There was an e-mail exchange but, according to Haines answers were not short, or not answered at all. I cannot even begin to wonder why that is. But I know this: he has to respond to the story. And, soon. Because if he doesn’t, public perception will run rampant and the assumptions will start. Hansen’s legacy is in peril right now. Only he can change that. I guess a hero’s work is never done.

THE VANCOUVER SUN STORY

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The once soothing sound of rain is a subtle reminder how life can change

The sound of rain has always soothed my soul. I think of those summer nights when I was a kid at our family cabin in beautiful downtown Meota, Sask. Cabin, perhaps, is overstating the situation: it was a two-bedroom hose built in 1911 with a very thin roof on the bedroom. Hearing raindrops late at night before was a wonderful way to fall asleep.

But as we make our way through life, experiences change the way we see things, and how we hear things. The window in my den is open and it’s after 3 p.m. For the majority of the day I have been listening to the steady stream of raindrops landing outside. My first thoughts were how relaxing it is. But then I thought of our friends in southern Alberta and how heavy rains turned into floods — which turned into states of emergencies for many communities.

I think of so many people who lost everything. I think of the journey so many must face now to start over. I think of how many people will have to put their lives on hold for, maybe, months to get back to some type of normal. I think of the thousands of generous folks who continue to help in so many ways.

The soothing sound of rain I once loved so much now reminds me life can change in a second … and how we can’t take anything for granted.

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New home care contract could spell trouble for travel times

Donna loves her job as a health care aide, but she is concerned she is being literally driven out of her job. Six years ago Donna, not her real name, was inspired watching health care aids working with her mother, who became a paraplgegic. Donna quit her job as  to become a health care aide. For the last five years she has worked for We Care, a for profit company. We Care health care aides travel to work with clients in  ) in Leduc, Sherwood Park, Leduc County, Strathcona County and Bonnie Doon. “I love my job.”

But Donna is worried about the future with new changes from Alberta Health Services to We Care contract.. “Our industry is in turmoil,” she says of the pay structure changing for caregivers Aug. 1. “Previously we were paid for time in between clients if they could not book us back to back shifts and we were also paid mileage for driving to and from clients homes. The new contract that We Care has signed does not provide for call-out fees or for mileage. We are expected to work for only the time the client has on their care plan plus a small amount of travel time.”

What does that mean? Donna says: “The travel time we will be compensated for is up to the discretion of each client's case manager and is determined by distance from the closet home care office, she says. “The most troubling thing of the travel time is that this time comes out of the clients care time.”

An internal We Care memo Donna shared with Tait Talk says: “If you are allocated 45 minutes for a bath assist, 35 minutes will now be for the bath and related travel care and 10 minutes for travel.” Donna says it is impossible to do a bath assist in 35 minutes as was the example provided by We Care.

“Not only that we have now been told that client will no longer have any choices for specific caregivers, times of care, and care provided,” she says. “Whoever is available will be sent and whatever times that caregiver have available will be the time given for care. So for my mother that needs help to go to the washroom, she will have to wait for her morning care and wear Depends until the caregiver can fit her in the schedule. Unacceptable.”

Donna doesn’t fault We Care for this and thinks it is an AHS issue.

Coming up soon: what the loss of paid mileage means to We Care employees. 

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Home care and PDD as different as Edson and Lloydminster

Somewhere, long ago, a new friend — no more than minutes old — asked me if I knew his cousin who had Downs syndrome. When I said I did not he seemed a little miffed. He said, after all, I had cerebral palsy, and I should know every person with a disability in Edmonton and surrounding area. I explained people with disabilities have individual and unique lives.

For years people with disabilities have had to struggle in creating public awareness for our own disability. That has become very evident in the last two weeks. The provincial government is making changes to the way it is delivering services to persons with developmental disabilities, known as PDD. Changes are also coming for the way home care is being operated. But PDD and home care are not the same thing. Yet, some folks are thinking home care clients get PDD, and Albertans with developmental disabilities get home care.

Someone with a developmental disability may live in a group home. Someone with a physically disability may also live in a group home. But the support they get is as different as their disabilities: developmental disabilities are just that; physical disabilities are … just that. PDD and home care are two separate programs with very different needs.

And the battles, in both areas, are not over. Far from it. But there might be more public empathy if Albertans realize people with disabilities are unique and different … just like Edmontonians, Calgarians and all points in between.

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Tait's Eight: 8 ways Edmonton can help Calgary

We need to help our neighbors in Calgary and the surrounding area after the recent flooding. But how? Here are eight possible ideas, including one from you. If you have any suggestions on how to make some of these ideas work please let me know. All funds raised will be sent to the Red Cross.

1.   Alumni hockey game between Edmonton Oilers and Calgary Flames held at Rexall Place

2.   Local businesses contribute 50 per cent of all sales from a specific day

3.   A concert at Telus Field with Alberta performers like k.d. lang, Ian Tyson, Brett Kissel, Tommy Banks, Paul Brandt and others

4.   A 24-hour production from all Edmonton television stations broadcasting at the same time

5.   Benefit concerts at the Northern Alberta Jubilee Auditorium and the Winspear Centre: the Edmonton Symphony Orchestra at one venue and the Calgary Symphony Orchestra at the other, followed by Alberta’s biggest marshmallow roast at Hawerlak Park

6.   Fill every pothole in Edmonton roads with loonies and deliver the grand total to Calgary

7.   Every Edmontonian donate a day’s pay

8.   YOUR IDEA

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Hope, however small, is in southern Alberta

Dave Hancock sat in his office several years ago when he was education minister and made a profound statement over an early morning cup of black coffee. “I am in the business of providing hope,” he said — not only of the his specific role, but provincial government’s position in every day life. Hancock’s creed echoed throughout the province Friday as southern Alberta remains in a state of emergency after Mother Nature unleashed punishing blows.

Heavy rains cause unimaginable flooding from Canmore to Lethbridge, stopping in Calgary where, perhaps, damaged is felt the most. News reports Friday afternoon estimates 100,000 Calgarians are without homes. That number grows because many people in the surrounding areas are also at danger. It is horrible. The damage and repairs to southern Alberta will take decades.

Hope, though, is on the way.

Alberta premier Allison Redford and prime minister Stephen Harper — both with strong Calgary ties — toured the damage in a helicopter Friday. They promised both governments will provide financial assistance, and more importantly, moral support for the people who need it the most. It could very well be impossible for people to even think about the future when they have lost so much. We understand that, absolutely.  But we all need to be reminded people care and want to help. Nobody is going through this journey alone. Family, friends and total strangers will help. Two levels of government — governments who are criticized all the time — are providing a small glimmer of hope when it’s needed the most. And so Dave Hancock’s statement has a new meaning this weekend.

Photo via Twitter from Neal Barton from the premier's office taken from a government aircraft late Friday

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Giving pets dignity at that sad time

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One of the best parts of my day happens seconds after I set my head on my pillow, just before 11 p.m. My wife Joan puts our dog Thomas on our bed beside me. Thomas, a Chihuahu-Yorkie, scampers his way up to my pillow and gets comfortable for a 10-minute chat. Darn, he’s a good listener. Then, he walks down and retires for the evening at my feet. Thomas is my buddy and, sadly, I have thought about the day down the road when he will jump into Doggie Heaven: I know he had many years ahead of him.

But when that time comes I am comforted knowing there is a place where Thomas can be remembered in dignity. Because for years I have been troubled hearing people say “I took my pet into the vet today to have it put to sleep.” I imagined how terrible the car ride home must be.

It doesn’t have to be that way, anymore. Part of The Family Pet Memorial allows family pets to me remembered with one word: dignity. They offer the same funeral services as for human beings. There’s even a viewing room and a chapel for a memorial service. On Saturday, Part of The Family is having an open house from 1 til 5:30 p.m. for folks to learn more at 11904 - 113 Ave.

We all love our pets. And maybe the biggest thing Part of the Family does is soften that rough ride home after we say our farewells. It’s late, now — so I have to cut this short. Thomas is calling for me. 

PART OF THE FAMILY PET MEMORIAL WEBSITE

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"We both won, Papa": my grandson

 It’s just after 5 p.m. on Tuesday night when I wheel through the front door of my condo unit. There he is, our 10-year-old grandson Nicholas: hockey stick in hand, stick handling his plastic green puck on our kitchen floor. I can’t wait to tell him about the telephone call I got from Alison Redford’s office 4 ½ hours earlier, sharing news about the Alberta Health Services reversing the decision about home care contracts. I have cerebral palsy, use a wheelchair and have home care services in our condo — something AHS wanted to farm out to a new provider July 31, which could have meant dire changes. But after Thursday’s decision we can carry on with our user-driven program.

“We won, Nick,” I said. He smiled and then said: “I won, too, Papa. I went outside today at school and we had a paper airplane contest. So I built one and threw it. And it went all the way across the parking lot and it was the farthest anyone threw. I won, Papa.”

I hugged Nic, perhaps tighter than I usually do. I thought how precious that story was and how he told me as soon as I got in the door. I thought how, without AHS’ reversal, I could have had to move into a nursing home. I thought of Nic coming to visit me in a hospital-like room after supper, several hours removed from that paper airplane toss, and how some of the excitement would be gone. I thought of how lucky I am to be able to stay in my own home and have the honor of babysitting Nic, who lost his mother in March to cancer.

After our hug, I gave Nic our traditional fist pump. “We both won today, Nic,” I said.

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Today's timely tune: AHS reverses decision

Two weeks after Creekside Support Services, ArtSpace and Abby Road were told their self-directed home care contracts were cancelled by Alberta Health Services, the decision was reversed.

Here's the story

And the tune

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."

CLICK HERE TO SIGN THE HOME CARE PETITION

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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

CLICK HERE TO SIGN A PETITION FOR HOME CARE

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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.

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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.