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Answering Your ALS Questions with Anne Cooney, MSW, LSW

Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.


What are some of the most common questions that social workers answer for people with ALS?

Some of biggest concerns are how will my care needs be managed and how will this affect my family? Will I be able to stay home and what is needed to make this happen? Concern for family members who will be caregivers is just as important as the care needs of the person with ALS. We spend a lot of time discussing Chapter supports as well as insurance and community supports available to them. This is an ongoing discussion which evolves over time as care needs change over time.

How do you assist people with navigating challenges around insurance?

Another early discussion when newly diagnosed is insurance, specifically what their plan provides. We also educate and guide people with ALS through the SSDI/Medicare process as many of them eventually are covered by this. Lastly, we educate them through their choices between traditional Medicare and medigap plans, Medicare advantage plans and part D coverage for prescriptions. We encourage people with ALS and families to connect with their insurer and understand specifically what they do and do not have coverage for.

March is National Disability Awareness Month. As a social worker, what general ways do you think we improve access and understanding for people with ALS and other disabilities?

As social workers, we are a gateway for our families to provide the connections to all available resources. We assist with making referrals and connections to programs that will provide the support they need to continue living with this disease. We are very fortunate to represent a chapter that has many built-in programs to assist them at home, but we also work to connect our PALS and families to outside support as well. Our goal is to empower people with ALS and their families to seek and benefit from all available resources.

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