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Answering Your ALS Questions with Steve Spaulding, MA

How did the Chapter’s ALS care programs evolve and grow in 2022?

Many of our clinics have seen an increase in the number of patients we serve. Some have seen significant increases. While more people living with ALS is not a good thing, it is good that more people are getting the support of the critical partnership between our Chapter and our regions multidisciplinary ALS clinics – delivering support and services in a way that few people experience anywhere else in healthcare.

This year in particular we have been able to expand our ability to help with the burden of the crushing cost of in-home care for many more families in our ALS Chapter community, giving those living with ALS, their caregivers, and their families and loved ones the opportunity to live at home and enjoy the highest quality of life possible.

There is nothing quite as good as seeing and supporting one another in person. While we are grateful for the extraordinary opportunities technology provides in our ability to help folks, this year has welcomed the return of many vital in-person events and services. It’s hard to put a number on the number of people who met one another in person for the first time. Those experiences this year have enriched and energized everything we do in Care Services and throughout the Chapter.

What are your goals for the Care Services Department in 2023?

Real people with real help. It’s a simple and essential recipe for fulfilling our mission. I am told literally hundreds of times throughout the year that this is what people living with ALS and their loved ones appreciate most about our Chapter. We will continue to build on that commitment – providing skilled people and tangible help.

Technology continues to provide enormous opportunities for accessibility. But access to that technology is not always within reach. We make accessibility possible for so many who would otherwise not have access. As technology expands, we are committed to continue making that accessible to everyone living with ALS.

The person living with ALS and their loved ones are often understandably emotionally overwhelmed by the toll of this disease. Good mental health care can be challenging to find. We see opportunities to help families find what they need. As we enter the New Year, we are already working on a number of exciting initiatives to help support emotional well-being.

How does your department work as a team to help ALS families?

Our Care Services Team, like our clinics, is multidisciplinary. We have nurses, social workers, accessibility and assistive technology specialists, mental health professionals, and coordinators – all of whom work together to help people living with ALS and their loved ones. Every day our team is communicating, problem solving, and sharing resources to find the best possible solution to often unique problems. Our team works well because we work together, focused on those we serve.

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