Without this program, I don't know what we would do. Travis would have to stay home to care for me, which would mean giving up his career, his ambition, his escape from all things ALS and of course his pay check. Without his pay, we would not be able to afford rent. Also, I can stay home, hopefully forever, without needing to go to a long term care facility, which, at my age, is not something I can even consider. Besides, no one is keeping my kitties from me!
The application procedure can feel overwhelming, there were many times I almost gave up, and the wait list can be daunting. Some people living with ALS may feel it's not worth it as they may not live long enough to use it. I would encourage you to look into it anyway, as there is help throughout the process. My ALS regional manager come over to help me with the application, and a staff member from the Ottawa Independent Living Centre (OILC) also came to my home to help me prep for the interview. I am always happy to be a resource for people as well. Once you have the program up and running, they provide funds to hire a bookkeeper, who assembles the pay checks and helps prepare quarterly reports.
My only pet peeve is that being a government program it feels like they are stuck in the 90's with paperwork as they make you write cheques for everything and will not allow direct deposit. Silly, as in my mind that would be an easier way to track funds and I am losing my handwriting ability. Go to Staples and purchase a signature stamp while you can!
It can be difficult to accept help, and have people in your personal space. You may think you are able to get by now, but day by day ALS steals our abilities. Once I made it through the application and interview process and was accepted into the program, it has made such a positive impact on our lives.
What has made the difference for me with my stubborn, independent, like doing things my own way personality in embracing this program, is reframing it from having an "attendant" or "personal care worker" to having my own personal assistant! Makes me feel like a CEO instead of a person with a disability!
I have been so fortunate with my personal assistant, she does it all; washes my hair (hair dresser), gets me dressed (stylist), helps with muscle circulation (masseuse), takes me to appointments (driver), dissects Handmaid's Tale with me (therapist), and so much more, she even brings me chai lattes!
Direct Funding means freedom for many people with disabilities. Is it accessible enough?
Author: Dafna Izenberg, Francine Buchanan & Claude Lurette
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.”