What the health system provides does not always match the needs of people living with ALS. ALS Canada helps to fill that gap by providing services and support to people living with ALS in Ontario, similar to the role that provincial ALS Societies play in other parts of the country.
How we advocate
We want to see a future where families affected by ALS across Canada and in Ontario have sustainable support for families and caregivers. In collaboration with ALS Societies across Canada and other partners, we advocate for federal health policy reform to improve financial supports for families living with ALS and ensure sustainable systems of home and community care are available. In Ontario we advocate for the ALS community to have better access to services that are covered by Ontario’s health care system.
We are playing a leadership role in several initiatives to help families affected by ALS receive better home and community care:
We engage with the provincial government in several ways to effectively share the perspectives of people and families affected by ALS. This includes engagement efforts such as our provincial pre-budget submissions, ongoing meetings with government officials, and advocacy days at Queen’s Park. We highlight the realities and needs of people living with ALS, so they can be better met by the provincial health care system. Our advocacy efforts are guided by the following recommendations that will improve the quality of life and care for people and families living with ALS.
Cut red tape preventing Ontarians from getting fair, timely, and affordable access to newly-approved drugs.
Modernize Ontario’s medical equipment program to reduce hallway health care and increase patient safety and independence.
Make sure people have the support they need to live at home and in the community.
Read more about the ALS community’s key priorities and recommendations in our Ontario pre-budget consultation submissions:
In February 2019, the Ontario Minister of Health and Long-Term Care announced Bill 74, The People’s Health Care Act, 2019. The legislation will reform the way health care is delivered to Ontarians. Changes to the Ontario health care system could have important implications for people living with ALS. We provided a written submission on the legislative changes that outlines four recommendations for consideration by the government as they prepare to implement the health system changes proposed in the new legislation.
As a person’s ALS progresses, the cost to maintain an appropriate level of care and quality of life has a significant financial impact: an ALS diagnosis is estimated to cost a family $150,000 to $250,000 over the course of the disease, including the costs associated with lost income for the person with ALS as well as family caregivers.
Before 2013, Canadians who found themselves in the position of taking employment leave to care for a loved one were entitled to up to six weeks and $3,144 in Compassionate Care Benefits (CCB), which left many families struggling financially at a very difficult time.
Starting in 2013, ALS Canada land ALS Societies across Canada participated in numerous meetings lobbying for CCB reform. In 2015 the federal government extended the CCB starting January 3, 2016 so that today, caregivers can claim up to $13,624 in benefits over a 26-week period. The benefit can also be taken within an expanded period of 52 weeks and can be shared between family members. To learn more, visit canada.ca.
ALS Canada is engaged in the national conversation on palliative care including work on the national Palliative Care Matters Steering Committee. To date, this initiative has resulted in a national consensus statement and 20 specific recommendations to the government. A report was published in 2017 from the Conference Board of Canada that reviews the Consensus Statement and outlines how the recommendations can be implemented. In December 2018, the federal government tabled a Framework for Palliative Care in Canada in the House of Commons. In Ontario, Private Members Bill 3, The Compassionate Care Act was introduced in July 2018. The Bill aims to provide a provincial framework for hospice palliative care. More information on the Framework for Palliative Care in Canada is available on the Palliative Care Matters website.
Until 2011, the Central LHIN (formerly the central CCAC) and ALS Canada worked independently to provide support to people living with ALS. This meant that people often had to repeat their situations and needs, and efforts to respond to their requests were sometimes duplicated. The absence of a model of care for people living with ALS inefficient and did not support their well-being.
In late 2011, the Central CCAC and ALS Canada partnered to better serve people living with ALS by creating the Integrated Team for ALS. This innovative, collaborative and holistic approach is patient-focused and has greatly improved the quality of life of families living with ALS. Staff from ALS Canada and the Central CCAC visit families with ALS together, and their coordinated communication means that requests can be responded to more efficiently and effectively.
“…We were able to connect with various resources and equipment, enabling my husband to be able to continue to live at home. Whenever I have a question or concern, [ALS Canada and Central CCAC] are only a phone call away, and we appreciate the joint home visits giving us the opportunity to voice our concerns further in person.” – Livia, spouse of an ALS patient
Building on the success of this integrated model of care, ALS Canada has been working with a number of additional LHINs to adapt it for other areas of the province and create dedicated regional care teams for people living with ALS.
Best Practice Recommendations
Canadians affected by ALS must receive the best possible standard of care regardless of where they live. That is why a pan-Canadian working group of experts in ALS clinical care developed the Canadian ALS Best Practice Recommendations (BPRs). The BPRs reflect the Canadian healthcare system’s reality and addresses issues relevant to Canada, including timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD), and caregiver support. They will empower advocacy for access to the best and most appropriate care for people living with ALS. Read more