Legal Considerations for People with ALS and their Caregivers

There has been a lot of media coverage about ALS and the “ice bucket challenge”. As a society we have recently learned more about ALS and the need for a cure for this devastating and fatal illness.

This blog will discuss some of the legal issues that can arise for people living with ALS and their caregivers.

According to ALS Canada, ALS is “a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed.” The disease can affect people’s ability to walk, speak, swallow and even breathe. Sadly, as people’s ALS develops, their abilities to do tasks for themselves diminish while the responsibilities of their caregivers grow.

 People living with ALS

Although cognitive abilities often remain intact, people with ALS should create a power of attorney for personal care and a power of attorney for property. ALS can affect a person’s ability to travel to their bank, pay bills or sign documents; it is therefore helpful to provide a trusted loved one with legal authority to help manage financial affairs. If the ability to communicate is lost, it is very valuable to have appointed a substitute decision-maker and provided guidance to that decision-maker about one’s wishes relating to both property and personal care. For example, a person with ALS may have wishes about a particular treatment, intervention or type of care. Powers of attorney present an opportunity to ensure your values, wishes and beliefs are upheld.

As financially challenging as ALS can be, it can be far more expensive not to have powers of attorney in place. We have previously blogged about the importance of powers of attorney here.

It is also important to create clear and accessible records of information caregivers might need to access – passwords; cell phone provider; security codes; doctors, accountant and lawyers’ names and contact information; location of important documents; etc.

People with ALS should also create or revisit their Wills. Without a valid Will, the government decides how your assets – big or small – get distributed. Failure to create a Will can create complex problems for family left behind.

Finally, ALS is a disability for which accommodation can be required pursuant to the Ontario Human Rights Code. People with ALS who continue to work should not experience discrimination in the workplace and are entitled to recourse if they do.


Caregivers who take time off work to care for a loved one with ALS may be eligible to take extended time off work without fear of job loss(as we have blogged about here). Employers are not permitted to discriminate against employees on the basis of “family status”. Caregivers who require flexibility in their schedules as a result of their caregiving obligations may be legally entitled to certain accommodations.

Caregivers may be legally unable to make certain decisions or manage a loved one’s affairs. For example, it may be necessary to access a family member’s assets to pay for that person’s medical care. If the individual with ALS did not make a power of attorney for property there is a chance the caregiver will have to become his or her guardian in order to have the legal authority to access and use the assets. Caregivers may need to investigate whether becoming a legal guardian is a necessary step.

Caregivers who are also substitute decision-makers, attorneys or guardians should become familiar with the legal rights and responsibilities that apply to them (particularly because there can be liability flowing from these roles). Understanding the applicable laws can also make the lives of caregivers much easier as they will be knowledgeable about when they can request information, take certain steps or advocate for a loved one.



Photo credit: slgckgc / Foter / Creative Commons Attribution 2.0 Generic (CC BY 2.0)

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