Advocacy Success

On October 30, 2024, the Government of Ontario announced an investment of $13 million over three years to implement the recommendations of the Ontario Provincial ALS Program. Your contributions have brought us to this monumental achievement!

Read the press release

The Issue

In Canada, what the provincial health care systems provide does not always match the needs of people living with ALS. This statement rings true for Ontario, where the current ALS care and support landscape in the province presents people living with ALS with significant challenges that demand immediate action.

The impact of an ALS diagnosis on the person living with the disease and their family, caregivers, and community is tremendous and pervasive – physically, psychologically, and financially.

In Ontario, more than people living with ALS not only face the harsh realities of this disease daily but also a health care system that fails to meet their complex and progressive needs, leaving them without adequate care and support.

Our Solution

To address this urgent issue, the ALS Society of Canada (ALS Canada), in collaboration with the five regional multi-disciplinary ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, Toronto), developed the Ontario Provincial ALS Program.

The Ontario Provincial ALS Program is a comprehensive solution that addresses the complex, critical needs of the ALS community. The program includes four key recommendations:

Recommendation 1: Address the disparities in access to multi-disciplinary ALS Care

Issue:

Due to the complex nature of ALS, people living with the disease have substantial care and equipment needs that evolve and increase over time. Effective management of ALS requires access to multi-disciplinary ALS clinics where health care providers, such as speech language pathologists, dietitians, social workers, respiratory therapists, and occupational therapists, play a key role in optimizing care. However, Ontario’s five regional ALS clinics are beyond capacity, under-resourced and unable to meet the unique levels of care identified in the Canadian Best Practice Recommendations for the Management of ALS.

Solution:

The Ontario government to provide incremental investments to ALS clinics to standardize and enhance existing care models, optimizing ALS care and ensuring each person living with ALS in the province receives the highest quality care.

Recommendation 2: Improve the quality of life and help people living with ALS maintain their independence, dignity, and safety

Issue:

ALS is an incredibly isolating disease due to the lack of awareness and the increasingly difficult physical realities. To support a person living with ALS, their caregiver, and the people closest to them, they are connected to ALS Canada Community Leads located throughout Ontario. ALS Canada Community Leads provide direct, in-home support and individualized information and resource navigation to ensure people are well-supported, helping to augment the health care system.

As a person living with ALS progresses in their disease, so does their reliance on mobility and communication equipment and other assistive devices that help them maintain their independence, dignity, and safety. However, Ontario’s medical equipment programs do not meet the needs of people living with ALS as they are left with equipment for short-term use only or with devices that are outdated for their needs or not right for them, which can put both themselves and their caregivers or families at significant risk. In the end, people living with ALS and their caregivers must turn to ALS Canada, a donor-funded organization, to fill the significant gaps that exist in Ontario’s health care system.

Solution:

The Ontario government to allocate funds to ALS Canada’s Community Services and Equipment Programs, ensuring people have access to the right equipment and assistive devices at the right time, improving quality of life and helping people living with ALS maintain independence, dignity, and safety for themselves and their caregivers.

Recommendation 3: Provide coordinated oversight of ALS care

Issue:

The lack of comprehensive oversight and coordination for ALS care in Ontario hinders the province’s ability to gather critical patient information, which would inform evidence-based decisions to shape a health care system that meets the needs of the ALS community. Comprehensive data capture, knowledge dissemination, and system planning are essential for a coordinated approach to ALS care.

Solution:

Formation of a secretariat to oversee and coordinate ALS care and facilitate comprehensive data capture, efficient knowledge dissemination, and strategic system planning.

Recommendation 4: Ensure equitable ALS care in northern and rural Ontario

Issue:

Many Ontarians living in northern and rural regions face unique challenges in health care access due to vast distances and limited health care infrastructure. This is the case for people living with ALS in northern and rural Ontario, as they must endure long journeys to attend appointments at one of the five ALS clinics located in Toronto, London, Hamilton, Kingston, and Ottawa, leading to disparities and barriers in access to care.

Solution:

The development of a regional strategy to provide equitable and accessible ALS care in northern and rural Ontario ensures that people living with ALS receive timely care regardless of their geographic location.

Our Advocacy

In partnership, ALS Canada, with Sunnybrook Health Sciences Centre, the five regional ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, and Toronto), and the ALS community, we have advocated for this program since 2023.

Our collective efforts have highlighted the devastating impact that ALS can have on both individuals and families. We have demonstrated the urgent need for access to standardized and equitable care, community services, and equipment. And now, we’ve been heard.

We are incredibly grateful for the dedication and passion of our community advocates. Their efforts have been instrumental in achieving this significant milestone.

We would like to acknowledge the following ALS community advocates for their vital contributions:

Denis Blais, passed away in November 2024
Carmen Cels, caregiver to her husband, Mike
Mike Cels, diagnosed with ALS in 2017
Patsy Ellis-Ma, bereaved caregiver to her husband, David
Steven Gallagher, diagnosed with ALS in 2019
Wade Hall, diagnosed with ALS in 2022
Simon Kuzyl, Patient Care Manager, Sunnybrook ALS Clinic
Steve Parker, bereaved caregiver to his brother, Peter
Paula Rodriguez, bereaved caregiver to her sister, Carla
Dr. Lorne Zinman, Director of the Sunnybrook ALS Clinic

Our Advocacy Highlights

Government Meetings

Since June 2023, ALS Canada, along with ALS community members, met with Ontario MPPs to discuss the implementation of the Ontario Provincial ALS Program, including the Minister of Health, Sylvia Jones, and the office of the Premier, Doug Ford.

Community Advocacy

Since we launched our advocacy campaign in January 2024, the ALS community has come together to raise their voices in an inspiring show of solidarity. More than 150 ALS community members have utilized the toolkit developed by ALS Canada to contact their elected officials, the Minister of Health and the Premier of Ontario to advocate for the urgent need for the Provincial Program.

2024 Ontario Pre-Budget Submission

ALS Canada submitted a written submission as part of Ontario’s 2024 Budget Consultations, urging the government to invest $6.6 million to implement the recommendations outlined in the Ontario Provincial ALS Program.

Read our budget submission here.

2024 Ontario Pre-Budget Consultations

Throughout November and December 2023, ALS Canada participated in six pre-budget public hearings held across Ontario by The Standing Committee on Finance and Economic Affairs (SCFEA) and local MPPs.

Queen’s Park Advocacy Day

On February 21, 2024, members of the ALS community joined ALS Canada at Queen’s Park, urging the Ontario government to include the Ontario Provincial ALS Program as part of Budget 2024. With participation from more than 40 MPPs, including the Minister of Health, Sylvia Jones, ALS Canada’s Queen’s Park Day of Action raised awareness of the current realities of the province’s health care system, which fails to meet the complex and urgent needs of people living with ALS.

2024 Fall Economic Statement

On October 30, 2024, Ontario government announced their commitment of $13 million over three years in the 2024 Fall Economic Statement to support the Ontario Provincial ALS Program.

This pivotal investment represents a meaningful commitment from the provincial government to address the urgent and evolving needs of people affected by ALS. The program will deliver vital services aligned with the best practice model of care to provide better health outcomes for the 1,400 Ontarians living with , supporting their independence, safety, and dignity while reducing stress on Ontario’s healthcare system by helping prevent unnecessary hospitalizations and emergency visits.

What This Means

This pivotal investment represents a meaningful commitment from the provincial government to address the urgent and evolving needs of people affected by ALS. The program will deliver vital services aligned with the best practice model of care to provide better health outcomes for the 1,400 Ontarians living with ALS and their families, supporting their independence, safety, and dignity while reducing stress on Ontario’s healthcare system by helping prevent unnecessary hospitalizations and emergency visits.

As we gain more insights into the implementation and funding allocations of the Program, we will keep you informed with updates on this news page and through our social media channels.

“The government is committing more than $13 million over three years, starting in 2024–25, to establish the Ontario Provincial ALS Program. This program will support patient care at Ontario’s five regional multi-disciplinary ALS clinics, as well as for the ALS Society of Canada’s Community Leads program and Equipment Program. It will also enable the expansion of regional multidisciplinary ALS services into Northern Ontario for improved access to care. The government is also exploring the creation of a comprehensive assistive devices loan and recycling program to allow Ontarians living with physical disabilities to have improved access to a larger range of affordable recycled devices.”

Government of Ontario. 2024 Fall Economic Statement, p. 90. 30 Oct. 2024.

Next Steps & Updates

Looking ahead, our work is not done! With the Ontario Provincial ALS Program now funded, it has the potential to set a national benchmark. We are eager to demonstrate its impact in Ontario and explore how we can bring a unified model of ALS care and support to every province.

This marks an exciting step toward building a national standard of ALS care, and we are hopeful for the future of ALS advocacy and support across the country.

Thank you for being a part of this significant milestone. This is an achievement we can all celebrate, and it’s a testament to what we can accomplish together.