Advocacy successes

An ongoing voice on Parliament Hill

October 4, 2016 was a momentous day for the ALS cause in Canada as the first meeting of the federal ALS Caucus was held. The ALS Caucus represents an established group of parliamentarians and senators of all political stripes who have come together to better understand the realities of ALS, including the care and research challenges it presents as well as opportunities to address them. ALS Canada spearheaded the creation of the caucus, which provides an ongoing forum for discussion with the federal government.

Better financial support for family members caring for a loved one with ALS

ALS is often referred to as the “bankruptcy disease” because of the financial toll it takes. 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 losing income given that family members must often take time off work to provide care to their loved one. Before 2013, Canadians who found themselves in this situation were entitled to up to six weeks and $3,144 in Compassionate Care Benefits (CCB), which did not meet the needs of many families and left them struggling at a very difficult time.

Starting in 2013, ALS Societies across Canada participated in over 100 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 over a 26-week period in benefits. 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.

A better care experience for Ontarians with ALS

ALS Canada has a role in Ontario similar to that of provincial ALS Societies, providing services and support for people living within our provinces and helping to fill the gaps between the healthcare system and the needs of people living with ALS.

Until 2011, the Central Community Care Access Centre (CCAC) and ALS Canada were working independently to care for ALS patients. This meant that patients 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 ALS patients was inefficient and did not support patient 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 go together to visit families with ALS, and their ongoing communication means that requests can be responded to more efficiently and effectively.

“…We were able to connect with various resources sand 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 CCACs to adapt it for other areas of the province and create dedicated regional care teams for people living with ALS.

Improved support for veterans with ALS

Research suggests that people who served in the military are approximately twice as likely to develop ALS compared to those who have not served. Because of the progressive nature of ALS, some veterans were dying of the disease before having the chance to submit their case to Veterans Affairs Canada. It was clear that veterans diagnosed with ALS needed better, faster access to support.

ALS Canada, along with our volunteer advocates, helped to spearhead efforts to improve disability benefits for veterans living with ALS. In 2010, Veterans Affairs Canada increased the benefits and improved support for veterans living with ALS. To learn more, visit veterans.gc.ca or contact the Royal Canadian Legion.