Travis & I are VERY excited to announce that Ottawa is hosting its first ever, Inaugural Ottawa Hike for ALS and Family Day.  The hike will be held on Saturday, September 29th at Mer Bleue Conservation Area on Ridge Road in Ottawa.  On our 9 Year Wedding Anniversary!
 
Mer Bleue is the largest bog and natural area in Canada’s Capital Region and the second-largest bog in southern Ontario. 
 
Participants at the Ottawa Hike for ALS will be able to choose from hiking the Mer Bleue Boardwalk which is a  1.2 km universally accessible boardwalk or  hiking a 2.5 km trail or taking part in a trail run of 7 km’s.  There is something for everyone.
 
The hike will also include fall-themed refreshments, a raffle of nature or Canadian made products and a scavenger hunt for the children.
 
Registration begins at 9:00 a.m. at parking lot 22 and the hike starts at 10:00 a.m.

Date: August 2, 2018
Author: Dafna Izenberg, Francine Buchanan & Claude Lurette

When Lisa Crigger advertises for staff on Kijiji, she’s mainly looking for people who can follow direction. Crigger has cerebral palsy and uses a wheelchair; she needs assistance with bathing, housekeeping, and child care. When her first child was born nearly eight years ago, she initially relied on attendant services from a Toronto-area agency, which she found frustrating. “The agency would tell you when the staff were available,” she says. “I don’t like to be told I have to be home by 7 or my kid is not going to have a bath.”

Things improved in 2013, when Crigger became a self-manager with Ontario’s Direct Funding program, which allows adults with physical disabilities to employ their own attendants. That means recruiting, hiring, and sometimes even firing people. “My staff will tell you I was pretty scary when they first came to meet me,” she says. “I didn’t want them to think they could mess around with me and not show up for work.” But Crigger is confident her staff would also describe her as a good boss; two of them have worked for her from the time she entered the program. “They just need to understand that [things need to be done] my way, and this is the way it’s going to be. Because it’s my house, and my children.”

For some people with disabilities, Direct Funding is a highly desirable alternative to government-funded home care, a system in which the number of hours and type of service a person receives is determined by case managers at the local health integration network, and the provision and scheduling of services is handled by private or not-for-profit nursing agencies which employ nurses and personal support workers. For other people, DF can be the difference between full-time inpatient care and being able to live at home. The program has served about 1,600 people since it started more than 20 years ago. In the mid-1990s, it had a roster of about 100 participants and an annual budget of about $4.4 million; in 1998, its budget was increased to $18.7 million, and the program grew to include about 700 people. In the past three years, DF has received an additional $5 million per year from the Ministry of Health and Long Term Care, so that it presently serves almost 1,000 people on a budget of $45 million a year. Here’s a look at how it works and whether its reach is wide enough.

Who is eligible for Direct Funding?  

Rooted in the independent living philosophy, Direct Funding operates on the premise that “consumers are the experts in their own disability,” says Leanne Larmondin, the program’s provincial coordinator at the Centre for Independent Living in Toronto (CILT). To be eligible, a person must be at least 16 years old, reside in Ontario, and hold a valid OHIP card. They must need physical assistance with essential daily activities such as eating, dressing and using the washroom as the result of a permanent physical disability. Participants must demonstrate an ability to direct and manage their own care—identify exactly what they need, train staff to provide it, and manage all aspects of the employment of their staff. There is no means test; people can qualify regardless of their income or other financial resources.

When applying for DF, potential participants must provide a very detailed proposed schedule and budget—how much of an attendant’s time, down to the quarter-hour, they need each morning, evening and bedtime. Their budget will depend on the kind of care they need at different times of day. For direct, hands-on service, DF provides between $16.50–$19 an hour; if a participant needs someone to just be on hand in the afternoon, they can budget for minimum wage; if they need an attendant to sleep in their home but not provide direct assistance overnight, they can budget for a flat rate of about $50. For most applicants, the maximum number of hours allowed per month is 212 (or seven per day). The program also provides significantly bigger budgets for people with higher needs—those on a ventilator, for example. Of the 962 people currently participating in DF, 75 might otherwise be in an ICU bed, Larmondin points out. An average budget is roughly $4,000 a month. Some participants receive more than $14,000, and others as little as $500.

After applying, potential participants are placed in a queue for an interview, and can wait as long as a year before being contacted. Currently the wait list has nearly 500 people. If a person’s circumstances are exceptional—for example, if DF would allow them to move out of long-term care—they can move up the line. Interviews are typically held in one of 11 local independent living centres across the province. Potential participants are interviewed by a panel of three—typically there is one representative from the Toronto office, one from the local centre, and one local DF participant. “That peer part of the interview is really important,” says Larmondin. “They know what it’s like to recruit and hire and manage staff in the local area, what it’s like to try and staff a bedtime shift in the middle of February, for example.”

The interview lasts between two and three hours, with the panel asking about a person’s knowledge of Ontario employment law and how payroll deductions work. “It’s more of a negotiation process than an assessment,” says Larmondin. The panel may also ask for more information about the proposed schedule—“That sounds like a little bit long for shower; can you explain why it takes so long?”—so as to come to a mutual understanding about what the budget should be. After the interview, the panel meets to determine eligibility, and they sometimes turn people away. “[For] some people who are new to their disability and to receiving services, directing their own attendants might be a little bit foreign to them, so they might need a little bit of life skills in order to meet the eligibility for that category,” says Larmondin.

How does Direct Funding work?

Once in the program, participants receive monthly payments via direct deposit. They pay their staff every two weeks, often with the assistance of a bookkeeper (most budgets provide $170 a month for this service). They report every three months to the Direct Funding office, providing an account of how all the money was spent. Participants are expected to ensure that staff are receiving vacation pay, are compensated properly for public holidays and that CPP, EI and income taxes are deducted.

Participants can employ whomever they like—their attendants need not be trained personal support workers or health care professionals. For example, they can hire a neighbour for one hour at bedtime—not always the easiest shift to fill. “My best attendants are not qualified,” says Eddy Lefrançois, who lives in Dubreuilville, Ont., a town of 650 three-and-a-half-hour drive north of Sault Ste. Marie, and has lived with ALS since 1992 (more than 20 years longer than doctors expected). “They are just good, hard-working people. I train them to my needs, and I am more than satisfied.” 

When a DF participant isn’t happy with an employee’s performance, there’s no third-party to phone and complain to. Lisa Crigger calls her staff into her bedroom for sensitive conversations. (“Is this how your kids feel?” one of her staff joked to Crigger during one of these talks.) She says she’s always been good at speaking frankly with people, but she doesn’t always relish being “the boss.” “To be honest, it’s really hard to do,” says Crigger. “It’s hard to be a mother, to be a wife, and have people come in and out of your house every day. But you have to make it work somehow.”

Does Direct Funding reach as many people as it should?

Larmondin has heard DF described as “the best-kept secret in health care.” The program is always trying to recruit new participants, visiting MS and ALS support groups and making presentations to LHINs and care coordinators. “We tell them, ‘We can take people off your caseload if you know anybody who might be suitable for the program,” she says.

But why go out in search of new participants with people waiting a year or longer for an interview? “We never know when a funding increase is going to come down the pike,” says Larmondin. When she started working in DF seven or eight years ago, people were waiting nearly five years to get in. “How big could the program grow? I guess we are almost limitless. The administration of Direct Funding is quite lean and most of the funding goes to participants’ budgets, so as our funding increases, so can our number of participants.”
Lisa Crigger knew about DF for years before applying and thinks it’s well advertised in the disability community. Some people she knows who might be eligible for DF have told her they aren’t interested in the program. “They like that somebody else is in control,” she says. “They don’t have to worry if staff don’t show up.” At the same time, she wonders if people who aren’t eligible for DF might benefit from it—people who themselves aren’t able to direct their own care, but have a parent or spouse who could.

This question is one which Tracy Odell, an executive on the board of directors at the advocacy organization Citizens with Disabilities Ontario, has considered as well. The requirement that people be able to direct their own services was critical to the program being approved initially by the government, she says, because it offered a measure of protection against abuse and liability. “But now [the program has] been running for a while, it’s more mature, the safeguards are in place,” she says. One of her family members looked into applying for DF for his wife—who recently developed a disability—but was told they wouldn’t qualify because his wife isn’t able to direct her own services. “Somebody who’s older, they need help to figure it out,” says Odell. “They don’t really know what’s the best way to pick me up and help get me on the toilet” (an example of the type of instruction DF participants are expected to be able to give their staff). Odell wonders whether DF would allow some older people who live with a competent family member to stay home. “There are people in hospitals and institutions who would want to be free,” she says.
​
Eddy Lefrançois thinks the wait time for DF is a significant barrier. He knows someone who has ALS who needs DF now; the financial burden of paying for extra services is taking a toll on this person’s marriage. “I once read that it was cheaper to have DF funding than pay to have people with disabilities live in a hospital,” Lefrançois says. “I can attest that being home is much more pleasant and rewarding. This has become a survival need for me. I would be confident to say for others too.”

For years I have been wanting to take Travis to see the Dave Matthews Band.  We have been long time fans and Travis enjoys their South African connection.  Imagine my delight when I discovered they were coming to Ottawa to play at our annual Bluesfest concert.

We have attended Bluesfest several times (Tragically Hip, Crowded House, The Killers, Cypress Hill! to name a few) and have always enjoyed it.  The last time we went, I was living with ALS and it was difficult with the crowds, parking etc.  I noticed the wheelchair section, however, it was off to the side, people are penned in like cattle and are only allowed one friend (they call it companion).  Instead, I wanted a  way to make Dave Matthews a special experience.

I learned about a VIP section, where you pay double the ticket price, however, have room to move around and have your own bar and bathrooms.  So I called Bluesfest directly and asked about wheelchair accessibility in the VIP zone.  The person on the phone informed me that although the reserved seating section is not accessible, the "standing room" part is, and that they would have staff who would find me a spot where I could see the stage.  I thought great, freedom to move around, allowed to have more than one friend and a VIP experience, perfect!

Travis had a friend who upgraded her festival pass so she could join us in the VIP section, and I had a friend I was hoping to say hello to in general admission.

We made our way to the VIP Tent and explained our situation to the people at the gates, they gave us both accessible wristbands as well as VIP wristbands and stated that there was a wheelchair platform in the VIP zone and assured me having another friend was no problem.  They let us know that the platform was first come first serve and that if I wanted to save my place, not to leave.

We found a spot, staff brought over two chairs for Travis and our friend, and chatted happily for TWO hours (mindful of the fact I was told not to leave, I didn't want to lose our spot), waiting for the concert to begin.  

As soon as Dave Matthews started performing a staff member approached us and told my friend that she couldn't be there as I was only allowed 1 companion.  We explained that we had called ahead of time, Bluesfest staff at the VIP gates told us where to go and that staff on the platform brought over chairs and we had no problem for the past two hours.  Of course, there was plenty of room on the platform behind us for more wheelchairs.  She stated that she needed my friend's chair for another wheelchair companion.  Travis took her aside to explain our situation further and found another chair for the other person!  She told Travis that despite what other staff told us, she had been there for 15 years so she was right.  As soon as another wheelchair came on the platform, she told my friend she had to leave.  I wasn't about to have her attend alone when she spent extra money to be with us, so the three of us left the platform to go on the grass in front of it.

We noticed cocktail style tables and stools where some very boisterous, drunken festival attendees were and Travis asked if we could use one of their stools.  As soon as they saw me, they generously put us in front of them to make sure I could see.  Point being, drunken people were much kinder than the staff!

Now we are at about the 4th song and another staff member in a grey shirt approaches us claiming to be the head of accessibility issues.  I thought to myself "what great service, someone noticed what happened and is coming to fix the situation", so I tell her what happened, and with a blank stare she states "I'm not sure about any of that, but I noticed your wheelchair and you aren't supposed to be in the VIP zone".  Caught off guard, we stare blankly at her, and she states "your husband doesn't have the wristband".  Travis lifts his wrist and shows her both his wristbands.  "Well, I need to see your tickets".  Ummm, okay so you are telling us you think we snuck out of the wheelchair section to be in the VIP zone, and I guess stole some wristbands???  I show her my tickets and ask her about what we've been through.  "I can't do anything about that, write a letter" she states.  She leaves, and I break into tears, embarrassed, and publicly shamed!

I've said it before and I'll say it again, don't complain without being a part of the solution!  Don't expect others to do for you, if you want something to change, be a part of that change!

So of course I wrote to Bluesfest, the Dave Matthews Band, and seeing as the Ottawa Citizen is one of Bluesfest's biggest sponsors, my friend Kelly Egan of the Ottawa Citizen who has written multiple articles on my struggle with ALS.  I have included my letter below if you are interested.

I was happy that the Executive Director of Bluesfest, Mark Monahan, personally called me upon receiving my letter.  He offered to refund my ticket and offered me a free ticket to Cityfolk.  I had attended Cityfolk last year (it is much more chilled than Bluesfest!) and commented on the fact that I appreciated that I could bring an attendant for free.  Mr. Monahan then informed me that for Bluesfest, your companion gets the VIP Zone for the price of a regular ticket.  I couldn't believe it, then why wasn't I told that when I called asking about VIP Zone and wheelchair accessibility?  Why did we pay full price for VIP if we didn't have to?  And why, oh why, when we ended up in the VIP Zone off the platform, were we told we didn't belong there because we had a wheelchair?  Why is this not written anywhere on the website?  I think this is a policy that nobody knows about!

I explained to Mr. Monahan that while Bluesfest makes an attempt at accessibility, people with disabilities do not have the same rights (Equity vs. Equality).  An able bodied person may also lose their spot if they move, however, chances are they will be able to find another spot to see the stage from.  So how about creating a space where people with disabilities are allowed more than one friend (as other attendees can have, equity!), and can move around?  A simple solution, have more than one wheelchair platform!  Also, how about training the staff, especially those in the disability section, a lesson on compassion.

Instead of a free ticket to Cityfolk, I asked if he would be willing to donate a Bluesfest Pass to our Curling for Carol Bonspiel in March, which we could raffle off to raise money for ALS Canada, and he agreed (I also invited him to bring a team)!
 
So despite the fact that we had a ruined bucket list experience, I'm stoked for the raffle prize, and take it as a win.

I also offered to be a voice for those with disabilities for those attending Bluesfest next year, whether it is training staff, or organizational issues, so hopefully others will be treated with dignity and have an awesome festival experience, despite their disability.

...I'm still waiting to hear from Dave Matthews...

Dying Woman brought to tears at Dave Matthews Band Concert by Ottawa Bluesfest Staff 
Cc: Mark Monahan, Dave Matthews, Kelly Egan (Ottawa Citizen)
 
My name is Carol.  I am 46 years old.  I am in a wheelchair and living with ALS, a terminal, neurodegenerative disease, which progresses as I lose all muscle function in my body.
 
I am married to Travis, a South African, and a caregiver to me.  He is loving and supportive to me during all of the devastating challenges we face.
 
I was thrilled to be able to take him to see a bucket list concert for both of us, The Dave Matthews Band.
 
As I had been to Bluesfest before, I was aware of the wheelchair section and policy of only being allowed 1 friend.  I also don’t like to feel trapped and penned in like cattle so wanted the freedom to move around.
 
So this year I called in advance and discussed with staff the Metropolitain VIP Zone.  I was told that the reserved seating zone is not accessible, however, the party zone is, and that there would be staff who would help to place me in an area where I could see the stage, and I would not be limited to being with only 1 person.
 
My husband and I had 1 friend who upgraded her pass to be able to be with us in the VIP Zone.  When we arrived, we discussed our situation with the staff at the VIP gates and they assured us that 3 of us wouldn’t be a problem and that there was a wheelchair platform in the VIP Zone.  They also told me to not move once I get my place as it is first come first serve basis and if I left, I would give up my spot.
 
Staff on the platform sat us and brought over 2 chairs, one for my husband and one for our friend.  All three of us had accessibility wristbands as well as VIP wristbands.  We stayed in our spot with no problem for 2 hours.
 
As soon as the concert began, a staff I had not seen before came up to us and told us that my friend could not be there as I was only allowed 1 friend.  My friend had on an accessibility wristband.  I informed the staff member that the Bluesfest staff in the purple shirts had put us there, and that I had called before I bought my VIP tickets to ensure that this was possible.  She told me I misunderstood.  I told her I was just doing what the Bluesfest staff advised me to do, all of this happening as Dave Matthews was singing so we were missing the concert.  Then the staff member said she needed our chair as there were none left.  There were 3 stacks of chairs sitting at the tent in front of us.  She told my friend to leave, although there was plenty of room for more wheelchairs behind us.  So the three of us left.  After spending 2 hours waiting on the platform with no issues.
 
In and amongst the crowd (where I could not see) in the VIP section, another Bluesfest staff came along wearing a grey shirt and stated that she was in charge of accessibility issues.  I thought she was there to discuss what happened, that I was literally thrown out of the wheelchair section.  She basically told me she didn’t care and that she noticed my wheelchair and wheelchair people aren’t allowed in the VIP section.  She said my husband didn’t have the proper wristband.  He did as he had on both the yellow accessibility wristband as well as the yellow VIP wristband as we all did.  I guess she didn’t believe us because she asked to see my tickets, which I showed her.  Being the head of accessibility issues, as she claimed, I thought she would care about our situation, but she didn’t and told me to write a letter.  I felt publicly humiliated and spent the rest of the concert in tears.
 
Living with ALS is extremely difficult.  I had chosen Dave Matthews as I only have enough energy for 1 concert. I purchased Museum parking and VIP tickets to reduce any stress and difficulty I might encounter.  I was anxious about attending the event all day, but I was looking forward to providing my husband with a dream concert.
 
I did everything the Bluesfest staff told me to, from the first phone call in which I was told to buy VIP tickets and never told that a wheelchair section was literally in the VIP Zone.  In the end, I felt like a second-class citizen, “separate but equal”.  I do not have the same rights as other concert attendees, and was shamed publicly.
 
You turned our dream come true into a nightmare and have increased my already heightened anxiety about going out into crowds.  I already have a limited life and you are taking more away from me.
 
Sincerely,
 
Carol Skinner
(613) 558-2999
rolyskinner@gmail.com
www.livelovelaughwithcarol.com