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As you read this lonnnnng "send out,"
if you want the bottom line first,
just scroll to the bottom to
"The Results and The Bottom Line"
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When I started to write this particular “send out” some weeks ago, I felt that I was being forced into making a decision (and an announcement) that I ABSOLUTELY DID NOT WANT TO MAKE and never want to make, but very thankfully things seem to update constantly, (sometimes daily) so for now, the time for that decision and subsequent announcement has not yet come; and NO ONE is happier & more grateful for that than I am.
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Let me explain how I got to this point:
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Since my divorce at the tail end of 2015, maintaining the physical assistance I need to live where I want to live, and where I believe I should be able to live (without fear of losing my choice to be where I can thrive and do much good in this world) has been an incredible challenge, but make no mistake about it, I've taken this challenge on by choice and it’s one I feel I’m meant to take on; not only for my own sake, but for others like me.
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See, for me, living in any kind of facility (nursing home, group home, etc.) IS NOT AN OPTION!!!!! And I’ll ask, why should it be? Among my endless reasons fors my stance, is that stats show that those in nursing homes generally only live another 5 years maximum. Residents are neglected, not respected, not encouraged to be fully engaged, etc. They are treated as children, being spoken to in a condescending manner, not to mention the "invisible abuse".
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I've always said that only "the stupid places" partake in physical abuse. Physical abuse can easily be seen in bruises, bumps, scrapes, cuts, etc., but abuses of an emotional, intellectual, spiritual, and psychological nature are much more difficult to see & prove, and much easier to explain away - often as mood disorders, behavior outbursts, or depression.
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After my divorce and moving into my own apartment, I made an absolute solemn vow to myself that I would NEVER AGAIN live in such a place. I had lived in such places in my childhood and young adult years, and I have experienced and seen things that I may never speak of, because honestly, unless you've seen and experienced such things first hand, one would never believe they could be real. I've lived it and I'm still tempted not to believe those things actually happened, although I know well they did happen.
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Yet I consider myself one of the fortunate ones. I managed to survive! I'm not talking physically. That's the easy bit! What I'm talking about are things like: I still know my value in this world - I know my value to the God that I firmly believe in, and my value to those who know me best. I have my self-confidence and my self-esteem. Very sadly, I've known many who metaphorically "didn't make it out alive." There was a girl I knew well. We were only a year apart age-wise. She was a close friend of mine. Although she used a wheelchair full-time, physically she had the ability to be completely independent. Yet by age 27, she was living in a nursing home. Her mother was a control freak. The institution's staff always told her what she should and shouldn't do, what was best for her, and in the end, she couldn't decide her way out of a paper bag.
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A Little More Background:
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For the past 8 years or so, I've been able to get government funding to hire my own attendants. Has this always been easy? NO!!!!! Sometimes it's downright terrifying. - Good people leave and move on; people quit on the spot; people sometimes have institutional attitudes about what they figure my life should be like; and I almost NEVER hire the likes of CCAs, WSPs, or any such "professionals" and I refuse to use such terms as: “care" or "caregivers” etc. To me, these terms are highly offensive, patronizing and demeaning. From my perspective, such terms falsely raises the status of the person providing assistance, while downgrading the status of the person needing assistance. Instead I use words such as "attendants" or "staff." Also, I feel that such so called "professionals" almost always think they know more about what I need (because they're "trained") than I do, and trust me, that's never the case. No siree bob! I'd MUCH RATHER hire someone with absolutely zero experience, but someone who has an open mind and a willingness to learn first hand from me.
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More often than not, I hire people who are a little off-beat and unique, because I know what it's like to be underestimated. I identify with their circumstances. I regularly hire people who run into employers with unconscious biases in relation to: disability, sexual orientation/transgender, mental illness, recovering addictions, new comers to Canada who's first language is not English, international students, as well as people who have made mistakes in their past but have learned greatly from those mistakes and "have paid their debt to society." I find that a great deal of these people now make excellent staff. Who they were then IS NOT who they are now. - Now they are extremely reliable, always punctual, BUT THEY ARE NOT comfortable with a lot of people (especially government bureaucrats) knowing their personal circumstances. My attendants/employees trust me to maintain their confidentiality and I, in all good consciousness, cannot, and will not, betray that trust.
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As an example: A few months back I was talking with one of my attendants, when this person simply blurted out: "Gerianne, to be honest, there's only three people in this world I trust.” This staff named two people and then I heard this person say "and you Gerianne. I trust you." I sat dumbfounded for a moment. Then not wanting to make this staff feel awkward in anyway, I pretended not to hear my name mentioned as the third.
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So as I said, for roughly the past 8 years I've been able to get government funding to hire people of my own choosing. That funding has come from two separate government sources: the Nova Scotia's Health Authority's "Direct Funding" (formerly the "Self Managed Care" program {gotta love that patronizing name}) and the WorkPlace Attendant program, which was administered through the province's Department of Community Services (DCS). Between these two programs, I pretty much had the hours and funds I needed to maintain the assistance/staff I rely on - the physical assistance that I quite literally cannot live without.
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So, here’s what happened (or is happening)
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Lets start with DCS's WorkPlace Attendant program. Initially this program’s sole purpose was to provide persons with disabilities who need physical assistance while at work - in a conventional employment setting; i.e. if one worked in an office or bank or wherever, and if the employee needed physical assistance with such things as using the washroom, eating lunch, moving papers around, etc., one could have a WorkPlace Attendant for this purpose, funded for up to 20 hours per week. I forget exactly the year but I believe it was 2017, after a TeamWork personnel and myself met with three DCS upper staff, I, along with the TeamWork rep., managed to convince WSP-A to use me as a "test case" to expand the program to include "self-employment."
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So since then I had been receiving funding to hire attendants to physically assist me with my writing projects - as an example: I sometimes dictate compositions to my staff. They then send it to me, where I edit it, make corrections, changes, additions, deletions, etc. This cuts down on the time it takes me to physically type things out. It's still my original writing, it's just the mechanics are speeded up somewhat.
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In 2023, DCS transferred the administering of the WSP-A program over to TeamWork. At first I thought this would be a good thing and to me it made much sense. But it seems to me anyway, that with the influence of TeamWork's other offspring - GO-3D, WSP-A has become extremely "sales" focused. While on one hand I understand this, I also feel that things like effort, activity, and making a difference to others, should count as well. In some sense, I honestly believe there should be a third category in our economic system - something in between a “business”and a “non–profit” a category where effort and helpfulness is recognized.
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In my situation, although I have a good number of avid readers, I rarely have any real opportunities to make "sales". So in June of 2024, I was cut off WSP-A, which means I've lost 20 hours of physical assistance per week, that translates into just under $2,000.00 per month. (Actually, I was given one extra month’s funding, for July, but I am not expecting any further extensions from WSP-A.)
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Yet even though I’ve been cut off WSP-A, I'm still doing what I do. I'm still writing, (obviously) still creating awareness on disability matters, still having an impact, still educating others, etc., only now I'm struggling to maintain the physical assistance I desperately need. I mean, it’s not as though I can magically do more on my own physically, and it's not as if I'm sitting in my apartment doing nothing all day (despite what those who don’t know me may think, and those who have the stereotypical assumption of what life “must be like” for someone like me. But for people who do know me, (even slightly) the idea of me not working on something, not contributing in some meaningful way, is laughable. That notion would have countless folks rolling on the floor with tears in their eyes from so much laughter.
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Still in my opinion, the greater hardship has been brought on by the new Direct Funding Program, under Continuing Care.
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When this program was called “Self Managed Care,” I was verbally told during several annual reviews, that I would NEVER lose that funding stream, unless I started making over their allowable income limit. (I think it was over $30 or $35 grand annually - a figure I’ve only achieved in the mid 80's, while working in Toronto, and even for that job, the pay wasn’t that high.)
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Also under “Self Managed Care,” I had found a way to give the funders the financial data they wanted and needed, without revealing my attendants personal identifying information. After all, government funders and “the public” don’t need the names, addresses, etc., of my attendants, if I am doing the hiring, firing, payroll, etc. All those entities need is proof that I’m paying my attendants, which can be easily verified with bank statement and other financial statements.
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During the switch over to “Direct Funding,” (which coincidentally seemed to coincide with my 65th birthday) I received a “Letter of Understanding” that I was told to sign.
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After reviewing it, there was no way I could sign it as it was/is written, so I crossed out the items that were/are absolutely unacceptable to me. I initialized each, and explained in detail my rational for doing so, and submitted it.
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At the start of July, when no funds came from the Direct Funding body, I inquired as to what was happening. I was informed that unless I signed the Letter of Understanding with it’s exact original wording, I would not receive any further funding.
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In response, I wrote yet another email, stating that I thought this was a completely deplorable tactic on their part and why. In my opinion, this was a pure intimidation (bullying) manoeuver - a “do as we say, or suffer the consequences” attitude. (So among those I’m closest to, and with tongue-in-cheek, I started referring to them as “DIScontinuing Care.”)
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In my email, I stated that without funding, I cannot pay my attendants/employees. If I cannot pay my attendants, they will have to leave my employ to find other jobs (whether they want to or not.) They have bills to pay, rent to pay; they need to buy food, clothing, and so forth, so they’ll have no choice but to leave; and without further funding, I will not be able to hire any new attendants/staff; and without staff to assist me physically, my survival would literally be/is in crisis. I cannot live very long without physical assistance; and as I have made that absolute solemn vow to myself; well, one can easily see a scenario end for this story. So, the cold, cruel reality is by cutting off funding, they will be convicting me to death.
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Up front, lets get one thing straight, right here and right now! This IS NOT some “right to die” bs. I am NOT a supporter of MAID or any such thing. I’m actually saying the exact opposite. I’m fighting for my right to LIVE, to contribute, and to be part of this world! I value, enjoy, and immensely appreciate the life that our God has given me. I have done, and am doing, things that NO ONE ever expected me to do. Also, I DO NOT have a terminal illness. My disability IS NOT a progressive decease. My disability is a physical limitation which I’ve had since birth, and except for stuff that anyone can get with aging - i.e. arthritis, or kidney stones, (which I’ll write about my recent fun with those little buggers in a separate article) I am extremely healthy! So why should I, or anyone, be forced into any facility, where we’re left to stagnate, whither away, shrivel up and die?
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And pllllllllllease don’t spue me the “cost”crap! That rational will only hold any weight with me when our governments, big businesses, and others stop misusing public funds. Lets stop spending millions on political campaigns, one hundred thousand dollars plus on one fireworks event, dignitaries who stay in 5-star hotels while on “business trips,” etc. And when governments can honestly say that any of our humans who wants a home has one, when no one gets told to leave our hospital’s Emergency Departments because that person is homeless, (I’ve seen this happen) and when no one has to choose between paying rent and paying for their meds, then and only then, will I maybe again listen to any person who tells me that I AM costing the government too much money; that I AM a burden on the tax payer’s dollars; and before anyone attempts to convince me of such a theory, I’ll suggest they consider this:
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With the funds I receive, I hire an average of 4 part-time attendants - that’s 4 part-time jobs. (Sometimes I might be down to 3. Other times it might be 5.) Those I hire learn a lot from me - whether it’s a young staff away from Mom for their first time, a new to our culture person, or another scenario, they learn a lot from me, whether it’s how to cook or do laundry, how to budget, how to do their income tax, and more. They also develop confidence, maturity, and how to take on responsibility. So, I know I’m bias, but I’d say that not too bad of a return rate on the tax payers’ investment.
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The Results and The Bottom Line:
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As a result of so many emails going back and forth, the Finance Department at Direct Funding have given me their maximum funds for August and it is hoped that we can come to a mutual understanding on how to best address those concerns of mine, but whether or not I receive funding after this month remains to be seen. Another reality is without WSP-A, I remain negative some 80 hours per month, which translates into a loss of slightly under $2,000.00 a month.
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So, here comes the bit that everything inside me SCREAMS: "NO GERIANNE!!! DON'T DO IT!!!!!! DON'T YOU DARE ASK!!!!" Yet despite my repulsion to do so, I feel I have no choice but to reach out and ask for help in the form of financial contributions.
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I'll now share some financial realities, that depending on one's perspective, can either seem like HUGE sums for an average individual person. Yet for a corporation, foundation, service club, philanthropist, or many individuals combined, the sums can be considered rather small.
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I've already mentioned the roughly $ 2,000.00 loss that was coming from WSP-A that provided 80 hours of "workplace" physical assistance per month. In addition, if I am cut off Direct Funding permanently, I'll lose approximately another $ 5,125.00 per month.
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If after reading this particularly lonnnnnnnnng send out of mine, you find yourself wanting to bestow a financial gift of any amount, (or if you're associated with whether a corporation, foundation, service club, philanthropist, etc.) it's a one-time contribution, or a recurring gift, it'll be extremely appreciated by myself and my staff. Know up front though that I CANNOT give "donation receipts" for income tax purposes, as I am not a registered charity. Now that I've been fully transparent with that info, here are ways you can contribute at your own discretion:
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E-transfer to: e-trans@gbhull.com ; or gbhull@gbhull.com ; or 902-880-7085
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(Note: This is my text # only. I do not answer voice calls on this number.)
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I can also accept money orders, and even cash, but please, no cheques. (in the past I've had some bounce, and I've been left having to pay NSF charges.
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Until next time, and with peace & love,
Gerianne
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