Stories about the Direct Funding Program

Testimonial

Greg Maskwa, Self-Manager, Sudbury

Direct Funding gave me a fresh start. I am very grateful to the program. It allows me to stay in the comfort of my own home. That is huge.

The Direct Funding program enabled me to hire a hand-picked team. Under my direction, my brilliant staff give me the very best of care. They know my house, where things belong and what my preferences are. They know me. They brighten my day. They lift me up and inspire me on days when I feel disconnected from my muse. The difference is astonishing. I am a better person because of it. Every day, I look forward to seeing them, and I am ready for the day's routine. I have more control, and this empowers me. I am a proactive participant in my own healthcare. I am overwhelmed with amazement at all this program offers.

I am spoiled. I could never go back to the revolving door of healthcare workers that came from an outside service. There is simply no comparison. The continuity of having the same trusted attendants allows me to establish a deeper connection. My team has set up a program that is designed for my specific needs, maximizing my care.

As a result, I have more free time to splash some paint on a canvas. I am convinced that without Direct Funding my creativity would be compromised. The freedom it gives me is awe-inspiring.


Greg Maskwa became a Self-Manager in 2016. He was also an artist who donated one of his award-winning paintings, Things Could be Worse (Self-Portrait with Pain) to the Integrated Chronic Pain clinic at his city's Health Sciences North hospital.

This article was originally published in the Winter-Spring 2022 edition of The Self-Manager newsletter.

Since the original publication of this article, the program has been made aware of Greg's passing. The article has been reposted here with permission from Greg's family.

Posted by CILT Memos on Monday, June 5th, 2023

Memories Last a Lifetime

Melissa Webster, Self-Manager, Peterborough

I am so thankful I was able to travel this summer to Edmonton and then Haida Gwaii. I spent three days visiting people in the Edmonton area. We had originally planned on going to the Yukon, but there was a washout on the road. So, we decided to continue west and drove through Niska territory. The landscape was incredibly powerful and beautiful. The mountains hung over us like mothering angels, and the air was fresh and enlivening. We drove down Highway 16, part of which is known as the Highway of Tears (many Indigenous women have disappeared or were murdered along the sad route). We arrived off the ferry and instantly felt the healing energy of the islands. We met wonderful people, ate incredible food, and allowed the stunning landscape to quietly heal our hearts. The trip was very therapeutic, and I hope to return to the sacred territories of the Haida again soon.

This article was originally published in the Winter 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Monday, June 5th, 2023

Attendant Has Deep Roots with Direct Funding Program

Tammie Moretton, Self-Manager, Ottawa

Self-Manager Kevin Shaw with his attendant, Kyle Moretton.

I have been a Self-Manager since 1995. My husband is also a Self-Manager. After adopting our eldest son, Kyle, we were provided with much needed nurturing assistance through Direct Funding (DF) to help us with caring for a very busy toddler. Without the DF program we would not have been able to adopt our children who truly enrich our lives. Kyle, now 20, works as an attendant for another Self-Manager, Kevin Shaw. Kyle has grown to be a kind, caring, and helpful individual who knows the challenges we face as individuals with disabilities and the many possibilities we can achieve given the opportunity.

This article was originally published in the Summer 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Monday, June 5th, 2023

Testimonial

Jayme Lunt, Self-Manager, Innisfil

Jayme, a Self-Manager on the Direct Funding program, with her tower garden.

Jayme Lunt has a tower garden in her house that allows her to enjoy accessible gardening. She used to love gardening outdoors when she was able to, but now the tower garden, a gift from her husband, has allowed her to enjoy gardening in a way that is accessible to her.

Being a Direct Funding Program participant allows her the freedom to cultivate wellness in a way that works for her. Jayme gets to garden safely and even enjoy the fruits of her labour, literally!

This article was originally published in the Summer 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, May 26th, 2023

Testimonial

Jennifer Viklen, Self-Manager, Thunder Bay

I heard about the Direct Funding Program after I was in a life-changing car accident. I went from being a busy working wife and mother to a person with a disability and wasn't sure how to navigate life. After I was found eligible at my interview, I was very happy that I was able to handpick and hire the attendants who were best suited to my needs. I'm so thankful that I was able to regain most of my independence back. I'm now able to clean my house and cook for my family, have assistance at some of my appointments, and have all of my personal care needs met, all with the help of my attendants, because to me these were now the important things in life.

Being able to control when I have my attendants instead of relying on an agency's schedule has been such a blessing. I currently have three attendants, and I'm able to choose the right one based on my needs for each day. I didn't have that choice with an agency. After building trust with my attendants, I'm more comfortable with personal care. It is not easy to be that vulnerable but being able to build that relationship with my attendant was easier, because I was able to handpick them myself and work on the relationship over time.

Direct Funding has also helped me feel more confident by being in a leadership role and being able to manage all the responsibilities related to being a Self-Manager. There is definitely a learning curve involved, but knowing that I'm not alone and have help from my local Independent Living Resource Centre office as well as the Centre for Independent Living in Toronto office, I feel comfortable, and I believe their goal is for me to be successful as a Self-Manager.

Being a Self-Manager is such a blessing. It's both rewarding and challenging. Over these past few years, I've learned that being a person with a disability with all of its challenges can be manageable, and independence is possible. I'm so thankful I was approved to be a Self-Manager because now that I have the right team of attendants, I'm more independent and live a more fulfilling life.

This article was originally published in the Summer 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, May 26th, 2023

Sharing Attendants

Stuart Kidd, Self-Manager, North Bay

Hello from amid the winter cold and COVID. Last October, I almost passed on a CILT sponsored Zoom call for Self-Managers to talk about common issues and concerns. However, it turned out to be very positive.

A number of us on the call talked about staff shortages, perhaps aggravated by the pandemic. I asked if there were other people in my area who had similar problems and who had staff who might be interested in work with other Self-Managers. Two other managers in my area (Wilson Libita and Sally Harper) confirmed similar problems and that they had staff who might be willing and able to add more people in open parts of their schedules.

Within a month, three of us enjoyed the benefit of sharing staff to fulfill our support care needs. Personally, the changes also made improvements to the scheduling for each of the three people who work with me. Ashley M., our longest serving care worker, of about five years now, myself & Duncan are shown below.

The result of that one Zoom call has been a good win for all three Self-Managers and their staff as well.


Stuart, a former Self-Manager on the Direct Funding program, with his attendant, Ashley M., and his dog, Duncan.

This article was originally published in the Winter-Spring 2022 edition of The Self-Manager newsletter.

Since the original publication of this article, the program has been made aware of Stuart's passing. The article has been reposted here with permission from Stuart's family.

Posted by CILT Memos on Friday, May 26th, 2023

Testimonial

Della Gauthier, Self-Manager, Capreol

How can I best explain the profound impact the Direct Funding Program has had on my life? I guess it's the little things that most people take for granted, like getting out of bed when you want to, having a refreshing morning shower, and going out looking your best because your hair and makeup are done with two healthy, steady hands. It's having the people you choose to help you with your most intimate self care - the little things that mean so much to someone who can't manage these things themselves.

Direct Funding gave me back my husband, too. The community care nurses were fabulous, but only had time to help with the absolute necessities a couple of days a week. So, my husband took on the role of caregiver, housekeeper, and cook. He did it without complaint, but our relationship was no longer as partners, but as a patient and carer. Since Direct Funding came into our lives, my husband is once again my partner and best friend. We laugh together, support each other, and do things we had stopped doing when he was busy taking care of me and everything else by himself. Direct Funding gave me back my dignity and freedom.

This article was originally published in the Summer 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Tuesday, May 2nd, 2023

Making a Pitch for ALS Awareness

Peter and Zachary Wood with Blue Jays pitcher, Julian Merryweather, and Blue Jays mascot, Ace.

Self-Manager Peter Wood and his son, Zachary, were invited to throw the first pitch at the Toronto Blue Jays game against the Chicago White Sox at the Rogers Centre on June 2, 2022, Lou Gehrig Day. (Gehrig was a star player for the New York Yankees who was diagnosed with amyotrophic lateral sclerosis in 1939. His name later became synonymous with ALS.)

"It was great fun and a unique experience that we won't forget," said Peter. "I was overwhelmed by the support of the crowd at the Rogers Centre as we took the field."

This article was originally published in the Summer 2022 edition of The Self-Manager newsletter.

Posted by CILT Memos on Thursday, April 27th, 2023

Parenthood

Gabriella Carafa, Self-Manager, Woodbridge

Gabriella, a Self-Manager on the Direct Funding program, with her baby, Giovanna.

Becoming a single parent by choice was not a decision I took lightly. In September 2021, my daughter Giovanna McKenzie Carafa was born, and in that same month I moved and had to hire new staff. So many transitions happened very quickly! With the support of the Direct Funding program, I am able to care for my baby exactly how I envisioned, and I'm empowered to be the best mother I can be every day. Like any new mother there are definitely challenging moments and days, but overall this transition has been rewarding and full of love (and baby cuteness).

This article was originally published in the Winter-Spring 2022 edition of The Self-Manager newsletter.

Posted by DFadmin on Friday, April 21st, 2023

Direct Funding Participant shares her story

Program allows people with disabilities to retain precious independence

At 73, retired developmental psychologist Audrey King leads a rich and fulfilling life.

She travels, attends a book club, chairs committees at her local church and shares her expertise as an advocate and guest speaker at professional gatherings.

A polio survivor who hasn't been able to use her legs or arms since she was a child, King has also spent part of her retirement years caring for her aging mother, Maisie, who died in 2012, just shy of her 101st birthday.

King was able to keep Maisie at home in the Don Mills-area condo they shared thanks to an innovative provincial program that allows people with physical disabilities to hire their own personal attendants to help with dressing, grooming, bathing and other activities of daily life.

A recent funding boost will allow more people like King to live independently.

"For most of my professional life, I was the breadwinner while my mother kept the household going, got me up in the morning and looked after the meals," King says.

"Suddenly, the roles were reversed."

The direct funding program - which was just being introduced in 1995 when her mother's health began to deteriorate - allowed King to hire her own personal attendants, so that she could co-ordinate home care and other supports to meet Maisie's medical needs.

"My mother had a much better quality of life living with me - at a fraction of the cost of a nursing home," King says. "And look how long she lived."

Even though she sometimes wondered if her mother should be in a nursing home, King couldn't bear the thought of moving Maisie from her familiar surroundings.

"I couldn't do it. In her confused state, I would never, ever want her to feel abandoned," King says.

"After all, she never abandoned me." Without direct funding to help her manage her own needs, King says it would have been impossible to care for her mother.

Managed by Toronto's Centre for Independent Living, the Direct Funding program is now in its 22nd year and serves about 850 people with physical disabilities across the province. About 400 people have inquired about funding and more than 100 are on the wait list.

An additional $5 million in provincial health ministry funding this fall will expand the annual budget to $43 million and extend the program to another 150 people. By March 2018, more than 1,000 people will be part of the program.

"We are tremendously proud of this work and the invaluable support it provides individuals, many of whom would otherwise have to move to care facilities, and not be able to stay in their homes and communities," says Susan Fitzpatrick, CEO of the Toronto Central Local Health Integration Network (LHIN) which oversees the funding for the health ministry.

Unlike personal support care givers provided by an agency or a Community Care Access Centre, direct funding allows people with a physical disability to become the employer and manage their own attendants.

Prospective "self-managers," as they are called, are interviewed by a panel of three people who assess their readiness as an employer to meet the obligations of the Employment Standards Act.

Self-managers negotiate a budget with the centre, manage their attendant services and have a back-up plan in case an attendant is sick or otherwise unable to show up for work.

They determine the number of hours they need and pay their attendants based on the ministry mandated hourly wages of between $16.50 and $19.

The average self-manager uses just under five hours of attendant care a day and the current average monthly budget is about $4,200, including money for wages, benefits, employer taxes, postage, bookkeeping and miscellaneous costs, says program co-ordinator Leanne Larmondin.

But there is a broad range. Some who need alternate days or just several shifts a week, use as little as eight or nine hours a week while a person on a ventilator may need as much as 24 hours a day.

Those with physical disabilities are eligible from age 16 and the oldest personal manager is in her 90s.

King loves the program because there are "no agency 'policies and procedures' to interfere with the assistance you need or how it happens."

"The attendant can go with you to a cottage, on vacation, to help with shopping or trying on clothes in a store," she says. "They can take you to appointments, help you get your mail, use the phone, organize your files, whatever your daily needs might be," she says.

"As an employer, the accountability and responsibility between you and your attendant or attendants is direct. There is no middle manager off-site," she says. "As a result, you respect each other and care about each other more."

It also fosters longer-term commitments, notes King, whose weekend attendant has been working for her for 16 years.

Her weekday attendant was with her from 1995 until she retired two years ago.

For Derren Whiteman, 45, the program allowed him to move out of his parents' home and into his own condo three years ago. "To me, it is freedom," says the technical writer and website designer who became a quadriplegic after a car accident when he was almost 17.

Since agency attendants don't work overnight, Whiteman says he could never have lived on his own without the flexibility of the program. Now, if he gets a cold or is otherwise unwell - which he says rarely happens - his attendant can stay overnight and help clear his airways, if necessary.

"It's really changed my life so much for the better," he says.

About 10 years ago the program allowed a GTA-area father who was diagnosed with ALS just after his wife died to stay home and look after his two boys.

He was worried that if he went into long-term care, his kids, who were entering their teens, would have been orphaned and put into foster care, says the centre's associate director Ing Wong-Ward, who has spinal muscular atrophy and uses the direct funding program herself.

"This man got on the program not knowing what the outcome would be. But we were recently sent a photo of him at his son's wedding," Wong-Ward says.

"He is on a ventilator. He cannot move most of his body. But he has survived long enough to see his oldest child get married. And we have every reason to believe that he will be around to see the birth of his first grandchild."

More recently, the program enrolled a participant who came out as transgender male to female and has been able to hire people she knows who are trans-friendly.

"When people are seeing your body naked, you don't want to be judged. If someone is imposed on you from an agency, even if someone is trained and professional, it's still the subtleties that are really tricky," Wong-Ward notes.

The program has even funded a First Nations man in Northern Ontario who used an attendant to help him prepare game in the traditional way in keeping with his culture, she adds.

As advocates mark the United Nations International Day of Persons with a Disability this month, King and others hope the relatively small direct funding program continues to expand and change perceptions.

"There is this sense that people with disabilities need to be taken care of and I hate that," King says.

"The program helps us take care of ourselves. The program gives us the power.

"Every other adult is in control of their own lives," she says. "This program helps put people with disabilities in the driver's seat."

https://www.thestar.com/news/gta/2016/12/08/program-allows-people-with-disabilities-to-retain-precious-independence.html

Posted by Disability Resource Centre for Independent Living (DRCIL) on Thursday, December 8th, 2016

Neil Allen talks about the DF Program

Independent Living Centre program allows people living with physical disabilities to arrange their own assistance

http://www.thewhig.com/2015/03/31/independent-living-centre-program-allows-people-living-with-physical-disabilities-to-arrange-their-own-assistance

Posted by Disability Resource Centre for Independent Living (DRCIL) on Friday, April 24th, 2015

Direct Funding program touted as alternative for home care

Richard Migneault relies on personal support workers due to his spinal muscular atrophy. He manages his own care through the province's Direct Funding Program.

http://www.northernlife.ca/news/localNews/2014/01/30-richard-migneault-sudbury.aspx

Posted by Disability Resource Centre for Independent Living (DRCIL) on Thursday, January 30th, 2014

Funding increase will help Ontarians with disabilities live independently

The Ontario government is expanding the innovative Direct Funding Program to help more people with disabilities live independently in their homes.

http://www.neads.ca/en/about/media/index.php?m=PF&id=122

Posted by Disability Resource Centre for Independent Living (DRCIL) on Friday, January 24th, 2014

Ontario announces direct funding

The province is expanding the direct funding program, which enables people living with disabilities to manage their care based on their individual needs.

http://www.ckreview.ca/2014/01/ontario-announces-direct-funding-for-people-living-at-home-with-disabilities/

Posted by Disability Resource Centre for Independent Living (DRCIL) on Monday, January 20th, 2014