Just About Anything, Anytime—The Social Worker’s Role in ALS Care

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Perhaps no one on the multidisciplinary care team has to address both the practical and emotional aspects of ALS care as much as the social worker. In recognition of National Social Work Month, we are shining a spotlight on the many invaluable services a social worker provides for people with ALS and their families.

We have recently been exploring how multidisciplinary care for people living with ALS has been proven to extend survival and improve a patients’ quality of life, with each member of the care team providing their unique talents and expertise for each patient during their ALS journey. Together, the team becomes more than the sum of its parts, working with each other to solve problems, provide guidance, answer questions, and sometimes just be there to listen.

In some ways, the social worker’s initial role is to think of all the things a patient may not have thought of and provide answers to questions they may not have even known they’d have. “My role on the ALS multidisciplinary team is to provide an initial assessment of care needs when patients are first diagnosed and to provide ongoing support, education, and resource connection to patients and families,” says Colleen Hoarty, a licensed clinical social worker (LCSW) at The University of Nebraska Medical Center ALS Certified Treatment Center.

That “ongoing support” can and often does mean just about anything. Social workers provide information about and referrals to community agencies for counseling or in-home care and home modifications. They can also help a person with ALS and their family navigate insurance, disability claims, family medical leave, and other important issues related to finances and employment. Basically, if the question starts with, “I’m not sure who to ask about…,” the first person to ask is usually the social worker.

While the services a social worker provides to a person with ALS and their family is not all that different than what they would provide to other clients, the nature of the disease and ALS multidisciplinary care often leads to a close, ongoing relationship. “This usually gives me a chance to get to know patients and their loved ones better. It also means that I often have some challenging conversations around how to help support people as their ALS progresses,” Colleen says.

“And it also means finding ways to help patients and families cope with a progressive disease like ALS—finding the balance between being hopeful and enjoying life while also looking ahead to what changes need to be made in people's lives to adjust to the disease progression.” Difficult discussions around losses of independence and its impacts, financial stressors, piecing together caregiving, and goals of care are often needed to help plan for the journey ahead.

Understanding the family aspect of ALS is also very important for a social worker. Getting to know not just the person diagnosed with the disease, but also their family and caregivers as well, especially when the disease can feel so overwhelming. Often, the service the social worker provides is just being there when needed. “One piece of my work is providing emotional support around the adjustment to this diagnosis and the natural grief that accompanies it,” Colleen says. “I want to make sure people know that they have a whole team of people by their side, and that we are here not only for our patients with ALS, but also their families.”

When asked what she wants people to know most about ALS, Colleen said, “I want people to know that most people with ALS are being assisted by their family members and many do not have ongoing outside help. If you know a family being impacted by ALS and can offer help, please reach out to them with specific ways you can assist. It could be transportation, respite care, shopping, errands,” she added. “And if you don't know anyone personally, donating to ALS research and advocating for increased funding for ALS care is another great way to support the community.”

While it's tempting to think that a social worker has a solution for every challenge, the reality is it takes each member of the multidisciplinary care team, and all of us, to make ALS livable for everyone, everywhere. But maybe what a social worker’s impact shows us is that even if we can’t solve every problem, sometimes just being there and being part of the fight is often what is needed most.

To learn more about ALS multidisciplinary care or contact your local care team, visit our website HERE.

To find an ALS Certified Treatment Centers of Excellence, Recognized Treatment Centers or ALS affiliated clinic, use our clinic locator map HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.


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Submitted by: Tom P. on Sat, 06/17/2023

To Whom it May Concern,
I'm trying to distinguish among your three designations given on the legend on your Center and Clinic Locator Map. It lists:

1) Affiliated Clinic
2) Certified Centers
3) Recognized Centers

Underneath that legend it states, "Click here for more information on certified centers & clinics." Once on that page it explains Certified Centers and Recognized Centers but NOT Affiliated Clinics. Can you provide me with a description of Affiliated Clinics and how they are different from the other two? Alternatively, perhaps you could provide a link that explains what an Affiliated Clinic is?
Thank you,

Submitted by: Amy L. on Fri, 06/23/2023

Hi Tom, sorry for the confusion! Affiliate clinics are clinics that our chapters work with but have not yet met all of the requirements to become an ALS Association Certified Treatment Center of Excellence or an ALS Association Recognized Treatment Center.

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