This petition calls on the federal government to change Employment Insurance rules so that families caring for loved ones with ALS or similar progressive diseases can access caregiver benefits based on a confirmed diagnosis alone, without needing to prove a sudden health crisis or imminent risk of death.

Amyotrophic lateral sclerosis (ALS) is an incurable, fatal neurodegenerative disease, and most Canadians diagnosed with it live two to five years (ALS Society of Canada);

ALS and similar progressive diseases require sustained caregiving—help with eating, transferring, communication, and breathing—for months or years before death, usually from family members who reduce or leave paid employment;

Employment Insurance family caregiver benefits for adults require certification on sudden change in health rather than steady decline;

Employment Insurance compassionate care benefits require certification of a significant risk of death within 26 weeks (Employment Insurance Act, s, 23.1), and prognosis in these diseases cannot reliably be narrowed to such a window;

Caregivers therefore qualify for neither benefit during the long, middle period of the disease, when care needs are greatest; and

Provincial job-protected leave provides no income, and the Canada caregiver amounts (Income Tax Act, s. 118(1)(d)) are non-refundable credits that reduce tax payable but cannot produce a refund (Canada Revenue Agency, Federal Income Tax and Benefit Guide), and so are worth noting to a caregiver who has left the workforce.

We, the undersigned,citizens and residents of Canada, call upon theGovernment of Canadato amend the Employment Insurance Act so that a confirmed diagnosis of a progressive, life-limiting neurodegenerative disease establishes eligibility for caregiving benefits without requiring certification of critical illness or of a significant risk of death within 26 weeks.