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 Issue

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 1,300 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 Progress Highlights

Shortly after submitting the proposal to the Ontario Ministry of Health in June 2023, ALS Canada began advocating for the implementation of the Ontario Provincial ALS Program. 

  • Government Meetings: Over the past several months, ALS Canada, along with 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. We will continue engaging with provincial elected officials, ministers, and other stakeholders to bring forward the realities of Ontarians living with ALS and the critical need for access to urgent care and support they require. 
  • 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.  
  • 2024 Ontario Pre-Budget Consultations: 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.

What you can do right now

Reach out to your elected official in Ontario, urging them to support the implementation of the Ontario Provincial ALS Program. To inform and empower your advocacy efforts, we have developed resources you can use to approach your MPP. 


Next Steps & Updates

March 26, 2024 Ontario’s 2024 Budget announcement, did not explicitly include a $6.6 million investment to implement the recommendations outlined in the Ontario Provincial ALS Program. We will continue our discussions with the government and relevant ministries to seek clarification.

We will continue providing relevant updates and ways to advocate on this blog post and our social media channels. 

Posted in: Advocacy