Stories about the Direct Funding Program

A Wedding Dream Come True

John Marrone, Self-Manager, St. Catharines

John Marrone (above, top photo) recently accompanied his daughter, Amanda, down the aisle at her wedding; he credits his attendants, Glenda & Tyler (above, middle photo) with their support through the wedding day.

John Marrone, a Self-Manager in St. Catharines, recently wrote to Anne Marie Covello-Baxter, his Direct Funding Resource Facilitator, about how his attendants helped him participate fully in his daughter's wedding:

Hi Anne Marie,

It was a perfect but fast-moving day! I was thankful for all the support to get me ready and where I needed to be to meet my goal - to accompany my daughter, Amanda, down the aisle to her groom, Brian!

Glenda and Tyler (my attendants) did a great job blending into the background while helping me get from all the places Amanda wanted me, Penny, and her brother, Joe (in bridal party) to be. I needed to get to four different locations: venue house, ceremony by a pond, cocktails under an orchard tent, and the dinner reception by crossing a bridge to the Kurtz Orchards' rustic and warm market building. I'm just glad Penny took on the move to the podium for the welcome speech! I only needed to park and call for a drink to smile and raise a toast to her happily ever after love story! I'm happy, and it was a proud father-daughter moment with a wedding-Thanksgiving Day blessing of clear blue skies and sunshine for my baby girl!

Much thanks and appreciation for the Direct Funding Program and all its staff who help make dreams like this happen! A toast to all of you, too, for being part of our village!

This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

A11yTO Conference

Jessica Oddi, Self-Manager

I'm Jessica Oddi (she/her), a freelance disabled designer working in accessibility. On October 20th, 2023, I attended the A11yTO Conference at the CIBC Square building. I had the honour of presenting a short talk, titled Work in Disability Progress, where I outlined how businesses can make their work process as accessible as their final products or services. We went through accommodations for meetings, summaries, guiding clients with tutorials, and changing the standards. It was such a great experience to network with talented accessibility designers and fellow creatives with disabilities. A11yTO set me up in a hotel so I could attend the conference. I was extremely happy to have an attendant referred to me by a friend who is also a Self-Manager. Hiring my employee gave me the ability to attend the conference by myself and make sure I was ready. She went above and beyond to make my experience easy.

Working in digital accessibility has been a real passion of mine, and now I get to share my practices with others in more places. It's because of Direct Funding that I can attend more work events like this, and I hope to continue in the future!



This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

Good Sports!

Photo by Karen-Ann Xavier.

Linda Clarke, a Toronto Self-Manager, competed recently in the Mobility Cup, an international, inclusive sailing regatta for people of all abilities. She was one of four Direct Funding Program participants who took part in the event that was held in Toronto; other competitors included Self-Managers Tracy Schmitt and Beau Hayward.



James and Loretta Davis, two Self-Managers in Thorold, recently received a Community Impact Award from ParaSport Ontario. "Their commitment to ensuring that there are opportunities for adapted sport for anyone who wants to play is non-stop," the organization said of the couple, who both organize, coach, play, and promote multiple sports.


Photo courtesy of Boccia Canada / Sportability BC.

Two Self-Managers brought home gold medals from the recent Canadian Boccia Championships in Richmond, BC. Lance Cryderman (centre), from Val Caron and James Davis (not pictured) were part of the Ontario team that won gold. Lance also won a gold medal in his individual event. Boccia is a Paralympic sport that was designed for people with cerebral palsy, but is now enjoyed by players with a variety of disabilities.

This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

Self-Managers on Screen and on Paper

Feelings of Invisibility

An award-winning documentary about a longtime Self-Manager is now available to view online. Feelings of Invisibility, described as, "An intimate portrait of an invisible woman," features Anne Abbott, a Toronto artist, painter, and Self-Manager since 2006. The documentary has been an official selection at 10 international film festivals and won awards for both the film and the director, Charmaine Kachibaia, including Best Documentary Short at the Lunenburg Doc Fest. It was recently released on Vimeo, a free video platform.

The full film, which is just over 12 minutes long, can be found at: vimeo.com/856247704

As I Live and Breathe

Self-Managers Ayesha Zubair and Gabriella Carafa recently had essays published in As I Live and Breathe, a collection of short stories that was written, and illustrated by youth with disabilities. The book, a project of Holland Bloorview Kids Rehabilitation Hospital in Toronto, aims to offer representation for children and youth with disabilities. Gabriella, who lives in Richmond Hill, said of her essay, "Deciding to have a child by yourself is something that is now gaining more popularity, however, deciding to have a child by yourself with a disability is still quite uncommon. I wanted my story to give people hope that they can dream up the life they want. Although we can't control everything in life, knowing that there are options out there for people with disabilities to become parents is so important. Having this opportunity to write this story allowed me to reflect on what my life was like before becoming a parent, what it is now, and how eternally grateful I am to have had the experiences of the past and to be living this life with my daughter and be able to share this journey with others."

For more information visit: hollandbloorview.ca/our-services/programsservices/transitions-recreation-and-life-skills/youth-engagement/i-live-and

The Wheels of Life: (dis)Ability Poetry Collection by Cassandra Liviero

Cassandra Liviero, a Self-Manager who lives in Caledonia, recently published a book of poetry. In the introduction to The Wheels of Life, she writes, "I don't think that I know everyone's (dis)Ability experiences. When I refer to 'I' it is because 'I' am speaking from my heart. The use of the word 'YOU' does not suggest personal responsibility but references wider society. In my opinion, this poetry continues to be unfinished. No matter how many readers pick up this book, no single experience is the same."

This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

My Copenhagen Trip

Susie Matthias, Self-Manager, London

The Association of Mouth and Foot Painting Artists of the World (www.vdmfk.com), consisting of disabled artists, came together to discuss the business of the association at a conference in Copenhagen, Denmark. Through the Direct Funding Program, I was able to travel and stay during the conference this year from June 30 to July 9, where I had the opportunity to do some sightseeing with my attendant, Rosa.

As a group, we went to see our art display called the International Art Exhibition, which was held on the evening of July 4th in the Royal Opera in Copenhagen. I was very proud to see one of two oil portraits paintings on display of my Uncle Graham and to view other artists' artwork as well; they are quite amazing.

I also took the opportunity to do some sightseeing in Copenhagen, such as the National Art Gallery and the well-known statue of the Little Mermaid sculpted by Edvard Eriksen that was unveiled in 1913. The Little Mermaid was made famous by Copenhagen's writer Hans Christian Andersen.

I had a wonderful time seeing and meeting wonderful places and people in Copenhagen. I hope to return one day.

This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

Baby News

Priyanka Choudhary, Self-Manager

Self-Manager Priyanka Choudhary, pictured with her son, Brij, writes, "I am very thankful to CILT & Direct Funding for providing support in caring for my baby. It has been extremely helpful."

This article was originally published in the Winter 2023/2024 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, January 5th, 2024

Working in Concert to Make Family Trip Happen

Dorothy Willis, Self-Manager, Toronto

Dorothy and grandson, Daniel, touring Montreal.

My attendant, Teresa Young, and I recently organized a trip to Montreal for a weekend in May to see my grandson perform in a symphony orchestra. We also planned an in-person get together with my friend, Mona Arsenault, a fellow post-polio person and founding member of Polio Québec.

Teresa and Mona met up in Montreal in January to check out accessible hotels. Teresa made a template of my large, custom-made wheelchair (Permobil F3) since it necessitated a large bathroom. Initial planning of my trip eliminated rail travel: My chair and I do not part, and trains do not allow you to travel in your power chair. We discovered Megabus, and Teresa rode to Montreal on her own time to see if it could be an alternate mode of transport. Next came my tryout, which was taking a Megabus to St. Catharines, a shorter distance - a kind of dry run. Megabus passed the test. We were ready to tackle the details of a weekend holiday for someone who had not travelled away from Toronto in more than seven years.

We arranged to stay four nights at the Fairmont Hotel, based on the size of the washroom, room space, and proximity to the symphony venue. We would be strolling and rolling, since Montreal's Paratransit is similar to Toronto's WheelTrans, requiring an early booking time and definite plans.

I spent two days with my grandson, Daniel, touring the McGill University campus and rolling through his neighbourhood. We had a patio lunch on the first day and attended a spectacular concert the following evening. The symphony orchestra performed Mahler's "Resurrection" with choral accompaniment, their final concert of the season. Post-concert, Mona escorted us along recently renovated Rue St. Catherine in our search for an accessible patio for a celebratory toast.

The concert and good visits with new friends, accompanied by delicious meals, meant a successful holiday. I was fortunate that it was a well-planned team effort.

Thanks to Direct Funding for making my rare holiday possible! I am starting to plan my next trip.


Self-Manager Dorothy Willis travelling comfortably in her power chair on a Megabus.

This article was originally published in the Summer 2023 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, July 28th, 2023

Finding Fitness, Fellowship, and Friendship at the Gym

Self-Managers meeting at Bfit to exercise together. Front row from left to right: Mary Jo, Loretta, Kim, Rowena and James. Back row: Ray and Heather (standing).


Amani using the shoulder press.

A group of Self-Managers in the St. Catharines area have made a local fitness centre their home base for exercise and mutual support. Some use the meetups at the Brock Functional Inclusive Training (Bfit) Centre as a time to discuss attendant recruitment, employer-employee relations, and living with multiple sclerosis. They often go for lunch or coffee after their workouts to socialize, and their spouses sometimes attend as part of this informal peer support network.

Two Self-Managers, Loretta and James, attend the Bfit Centre almost daily. Another regular, Rowena, says she appreciates the benefits from exercising. Kim welcomes the sense of community when working out with Self-Managers and other attendees with disabilities.

Originally called "Power Cord" and only available to those with a spinal cord injury, Bfit has expanded to provide supervised community exercise programs for older adults, cardiac patients, amputees, and more. The program is housed in the Walker Sports and Abilities Centre near Brock University's main campus.


Sharon using an exercise bike.

This article was originally published in the Summer 2023 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, July 28th, 2023

Motivational Speaker

Kevin McShan, Self-Manager, Windsor

Kevin McShan, a Self-Manager and motivational speaker living in Windsor, spoke recently to a group of consumers online and in person at the Ottawa Independent Living Resource Centre (pictured here with Georgina Varelas-Stapper, Executive Director of OILRC). The topic of Kevin's presentation was resiliency. Photo contributed by OILRC.



This article was originally published in the Summer 2023 edition of The Self-Manager newsletter.

Posted by CILT Memos on Friday, July 28th, 2023

Living the Dream

How a Self-Manager Turned His Love for Adaptive Mountain Biking into a Documentary

Jake Thomas (pictured in the second photo above) merges his passion for mountain biking with his love of filmmaking in his documentary, Adaptation. Photos courtesy of Niall Pinder.

After Jake Thomas' spinal cord injury in 2017, he struggled to find a sport that fit his interests. Prior to his injury, Jake was an action sport enthusiast with a love for mountain biking.

After some research, Jake came across an adaptive bike in Poland. "When the bike arrived a few months later, I was reunited with a world that was taken away from me. Out of all the adaptive sports I had tried, adaptive mountain biking was the closest sport to an able-bodied experience I could get."

Once Jake reclaimed his love for mountain biking, he decided to merge it with his other love: filmmaking. Adaptation follows three friends with spinal cord injuries as they travel to British Columbia to compete in the world's first bike race series for disabled mountain bikers.

"The idea behind Adaptation was simple. Promote adaptive mountain biking so that other disabled individuals could experience the same level of freedom. To celebrate disabled sport with a film that rivals able-bodied films of the same genre. To educate the uneducated about daily living with a disability. To inspire anyone in any capacity to enjoy life to the fullest. If one person draws inspiration from the film, then its mission was accomplished," says Jake.

Even though adaptive mountain biking is still in its infancy, Jake is noticing an increase in interest in the sport, and able-bodied bikers have been welcoming. "Year over year the numbers increase. Initially, my regular riding group was only four guys. Now there are close to 10 of us," he says. "Able-bodied riders are stoked to see adaptive bikes on the trails as much the people riding them. As more trail builders, clubs, and organizations understand adaptive bikes, the more the trail networks will be modified to accommodate them. Across Canada more and more organizations are accommodating the bikes' wider footprint." Organizations such as Kootenay Adaptive are helping to pave the way for adaptive sports across Canada with event organization and instructor training.

Though there is no official release date for Adaptation, the documentary was submitted to various film festivals in Canada, the United States, and Europe, and Jake is hopeful that a broadcast or streaming partner will pick it up. "My fingers are crossed someone picks it up," says Jake. "You don't have to be disabled to appreciate Adaptation. It truly is a film anyone can enjoy."

For more information and to watch the trailer, visit http://adaptationfilm.ca



This article was originally published in the Spring 2023 edition of The Self-Manager newsletter.

Posted by CILT Memos on Monday, July 17th, 2023

Election Spotlight

Chantal Huinink, Self-Manager, Kitchener

Chantal Huinink was elected in 2022 to serve as Regional Councillor in the City of Waterloo. "I have been a Direct Funding Self-Manager for approximately 20 years. The flexibility offered by this program has enabled me to pursue many valuable opportunities," said Chantal. She sees this position as an opportunity to apply her personal experience, as well as her expertise in social work and holistic care, for the benefit of many. Chantal was one of two councillors elected from a pool of 10 candidates. "I am pleased that I am not only seen as a woman [or] as a person with disabilities, but as a capable leader."

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

Posted by CILT Memos on Monday, July 17th, 2023

A Learning Experience in Planning

Mark Hardes, Self-Manager, Thornhill

Travelling to Halifax recently, it was the first time for me to go since I have been in a wheelchair. The trip was a learning experience in terms of planning and accessibility.

For example, at one hotel I could witness firsthand what was understood of accessibility.

- For washrooms, after I could barely enter through the door, the interior was not suitable.

- The toilet was placed so awkwardly that I wondered what the architect was thinking.

During the trip, I came up with some solutions to keep comfortable the best I could and enjoyed visiting with my son for dinner together with the rest of our family when we arrived in Halifax. I also got to enjoy a visit to Peggy's Cove, explored the Halifax boardwalk, and saw cruise ships and other big ships in the port. My family and I also drove to see Lunenburg and Mahone Bay. What a stunning country scape!

This trip was a great experience, and next time we know what to expect and will prepare accordingly. For example,

- A foldable commode chair on wheels is a must for me.

- Riding in the passenger seat was more comfortable and safer than in a wheelchair.

- The lifting equipment (which does not require any changes to the vehicle) from Access Unlimited was of great help.

I am very grateful to my family and caregiver for going on this trip with me. I like to think of myself as not disabled but infinitely abled! There is virtually nothing we can't do. Although it might take longer, I gratefully accept a helpful hand or two.

This article was originally published in the Spring 2023 edition of The Self-Manager newsletter.

Posted by CILT Memos on Monday, July 17th, 2023

Memories Last a Lifetime

Mike Tkachuk, Self-Manager, Barrie

In 2022, Mike Tkachuk took a trip to Disney Animal Kingdom and a cruise around the eastern Caribbean islands with his daughter and wife. He reports that his experience was very positive and Direct Funding gave him the freedom to be able to travel. "Being disabled, the only thing that stops you from having a great life is your mind - look at this picture," said Mike, a Self-Manager living in Barrie. "I flew down to the eastern Caribbean and stayed on a ship in a room for a week and enjoyed myself." He also said the hotel was extremely accessible.

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

Posted by CILT Memos on Monday, July 17th, 2023

Gettin' Crabby

David Dame, Self-Manager, Waterloo

David Dame, a Self-Manager in Waterloo, got up close and personal with an Alaskan crab during an Alaska cruise in 2022. The encounter took place on a boat featured on the reality television show Deadliest Catch.

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

Posted by CILT Memos on Friday, July 7th, 2023

Testimonial

Penny Goldberg, Self-Manager, Toronto

My son's wedding was wonderful and very emotional. I was diagnosed with Multiple Sclerosis when Eitan was 1 year old and my older son, Alon, was 4. I did not think I would live long enough to see Eitan get married. Thanks to Direct Funding and my family and friends I am still here and hope to enjoy many more memorable moments with both of my sons and their family.

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

Penny provided the program with an update shortly before moving to B.C. in 2023:

This program has changed my life in many ways. It has enabled me to live my life on my terms and has undoubtedly contributed to my continued good health despite steady progression of my disability.

I shared with you how DF enabled me to attend my youngest son's wedding one year ago. It is because of DF that I now have the ability and courage to make a big move, at the age of 68, to Victoria. I am making this move to live closer to my son, daughter-in-law, and two wonderful, beautiful grandchildren.

I hope that the DF family will continue to grow and thrive. I also hope that DF will be a positive influence on many other disabled people.

Posted by CILT Memos on Friday, July 7th, 2023

Memories Last a Lifetime

Linda Clarke, Self-Manager, Toronto

Participating in the Mobility Cup 2022 Cape Breton, a sailing competition, I did pretty well coming in fifth in the Silver Fleet and getting a trophy (I didn't know they gave trophies beyond third place!). The week got off to a rocky start. I requested a ride from Wheel-Trans (Toronto's para-transit system) to drive me to the airport at 6 a.m., but they gave me an alternative time of 4:40 a.m. pick-up - so that meant getting out of bed at 3:40 a.m. Linsey, my attendant for the trip, arrived at my place at midnight after going to a show downtown, so I don't think she got much sleep! We did get to the airport in plenty of time. Because the event was small - only 19 competitors (in Hamilton in 2011 there were 50) - I got to know most people. The whole event was very well organized, with more than 100 volunteers. I couldn't have gone without Linsey dragging me out of bed at an ungodly hour and caring for me.

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

Posted by CILT Memos on Friday, July 7th, 2023

Self-Manager's Attendants Move in During Quarantine

Oliver and attendant Thao Vo.

Oliver Pace, a Toronto Self-Manager, saw up close the benefits of the special relationship Direct Funding participants can have with their attendants.

In early 2021, Oliver learned that one of his regular attendants, although asymptomatic, had tested positive for COVID. Oliver then tested positive as well and was subsequently required to quarantine for 14 days. Two of his attendants chose to move in with him temporarily for his quarantine period, covering both their own regular shifts and those that his other attendants could not work. The two attendants worked with Oliver and his sister, Mary, through the quarantine period, using extra personal protective equipment to keep each other safe.

Oliver wrote to the program:

"My sister forwarded these two photos of one of the attendants who stayed with me while I had COVID last year. Her name is Thao Vo. The other attendant was reluctant to consent to having her photo or name on a public website for privacy reasons. That's too bad, as she was indispensable and did all the overnights while we were all quarantined.

"I'm glad to have helped show how beneficial this program is. I am truly fortunate to have such wonderful attendants."


Quarantined together in 2021, Oliver and attendant Thao Vo passed the time by playing cards.

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 Oliver's passing. The article has been reposted here with permission from Oliver's family.

Posted by CILT Memos on Tuesday, June 27th, 2023

Testimonial

Amy Adair, Self-Manager, Sudbury

I met the local Direct Funding Program coordinator at Value Village, who told me how I could become more independent by applying and studying for the eligibility interview for the program. I joined the Independent Living Sudbury Manitoulin centre and spent a summer working for them before getting my current job as an activities coordinator at a long-term care home.

I have now been a Self-Manager since June, 2021, and Direct Funding has given me the independence and freedom to schedule my own care and decide who is going to provide that assistance; it works great for my work schedule, as I work days and afternoons. Recently, because of Direct Funding, I was able to move into my own space and set it up exactly the way I want.

Direct Funding has changed my life, and I encourage anyone who has a permanent physical disability to access this program. It will give you more independence, freedom to choose, and control over your life!

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

Posted by CILT Memos on Tuesday, June 27th, 2023

Testimonial

Kim Latour, Self-Manager, St. Catharines

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2006 before moving on to a progressive disease course. As my disability increased, I found tasks of daily living such as maintaining a tidy home, taking a shower, or cooking a meal difficult. Over time I felt less and less engaged in life. The Direct Funding Program has, from the start, been a game changer.

From the beginning, learning the responsibilities of being a Self-Manager has offered challenges that have lit me up! I enjoyed learning about the program and governing legislation as well as feeling connected with others and being responsible for managing my schedule and budget. The pandemic resulted in increased isolation and coincided with a relapse that meant continuing to live without assistance was not possible.

As a Self-Manager, I have been able to access the support I need to live my life by design. Now, taking a shower, preparing a meal, and other tasks of daily living are safer, and I am able to preserve my energy. The assistance has resulted in my family being less worried about my wellbeing, and I feel more confident and dynamic showing up as my best self. The support has enabled me to participate in exercise, engage with my friends and family, and has resulted in improved quality of life.

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

Posted by CILT Memos on Tuesday, June 27th, 2023

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