Read below for more insight from Care Services Director Cassy Adams
So, what does 356 home visits really mean?
It means that you have five care services coordinators – going out on the road, meeting with people with ALS in their own environment, in their own time, with their families present – trying to navigate what is next for them.
Augmentative and Assistive Communications (AAC) Engagements. Tell us more.
This figure represents home visits and all kinds of support communications related to AAC. This is everything our AAC coordinator has done in one year. This is pretty incredible as it’s just one person supporting people living with ALS all across the chapter’s region. This also reflects her work with community-based speech therapists on behalf of people with ALS. I think about how this number means something much bigger – because if a speech therapist is able to help one person with ALS right now, they’re also able to help a future person with ALS that they will be able to see.
What does 5,167 support communications mean?
It doesn’t surprise me that these numbers are as big as they are because connecting with people with ALS between home visits, clinic visits, and support group meetings is an important part of our work. We have the ability to text folks as well – as communication preferences and abilities change for people with ALS it’s important that we have a lot of multiple different ways to connect.
We also look at communications that occur with community partners, healthcare professionals and caregivers which occur on behalf of people living with ALS. This is another level of support that we can offer people with ALS in their support networks.
Tell us more about the 756 clinic visits last year.
We got to a lot of clinics! That’s like going to 756 4-hour long doctor appointments. We can see five to six people with ALS on any given day – connecting with them and their medical teams to assess their needs and how the Association can help. It’s also a chance for our staff to connect in with the whole multi-disciplinary medical team to help fill gaps and provide support to them – and that’s because we see people with ALS at their homes, at support groups and in different contexts and can offer a holistic perspective on this person’s life that is more difficult in a medical setting.
We’re also there to hear from the other providers – like if they need equipment – we might have it in through our medical equipment program, or they may have heard they’re struggling emotionally, and we can reach out to offer more support in that area.
Let’s talk about last year’s demographic data.
We have seen a 20% increase in registrations with the chapter over the last five years. This is pretty significant. A lot of people wonder why – and it’s difficult to give an exact reason – we wonder if it’s related to general population increase, or whether it could be that physicians are diagnosing the disease better or recognizing the disease more often. I can’t help but think the ALS Ice Bucket Challenge of 2014 also helped increase awareness. COVID posed a lot of challenges and there was a significant back-log of people who were waiting to see specialists – so we saw a large increase in registrations right after that. In terms of geography, the population has been pretty consistent over time – the largest increases coincide with population increases in metro areas as the general populations grows.
The gender breakdown – research shows that it’s slightly more prevalent with male identifying individuals which is what the chapter sees in our numbers. Veteran figures have been fairly steady as well. I should note – we do see veterans whether or not they are receiving care at the VA.
Average age is typically 65 and this is fairly consistent with the national average although we do see people as young as 26. And we have seen others in their 20s and even people in their 90s.
Financial Assistance for people with ALS: Chapter Grants Program
This program is obviously important because of the financial impact of ALS and it’s a huge added support for people that may be struggling to access support that insurance won’t cover and it may not be a large expense but it’s an expense. For our care services coordinators, it’s also meaningful to be able to say, “Hey we have this $500 grant let’s get this support you need.” Not very many nonprofit organizations have support like this and for us to be able to identify a need and fulfill this need is pretty awesome.