ALSA post

[lgelb]

This is a rant generated by a post in our local ALSA chapter's Facebook feed. It begins:

One of the services we provide, free of charge, is multidisciplinary clinic care, served by professionals with expertise in #ALS. (The post goes on to list various specialties that you see in the clinic, like OT and PT.)

Here are some of my issues with this post.

The ALSA doesn't provide clinical care. The clinical services listed are billed to insurance, and you often pay part of the cost. The "services" that ALSA provides are not reimbursable. And they do not significantly defray clinic expenses through their "certification" arrangement.

To me, the photo, similar to what chapters around the country are posting/mailing, is basically an ALSA staffer using the PALS and CALS, shown but not named, which may or may not have been their preference, as props.

This misleading post is all about the ALSA and not about ALS or P/CALS. It's in sync with the dismal outcomes-vs.-funding that I've seen for more than a decade now.

OK, rant over.

 

[KimT]

I stopped going to my local chapter meetings because I was simply a number and they needed numbers to justify more jobs.

I have a lot more to say about ALSA. After going to local meetings for nearly two years, I was asked to make presentations and other P/CALS started calling me for information.

I don't like just being a number. I'm a person.

My niece make a sizable grant to ALSA. I wish she had given all the money to me or to some PALS in her home town. I'm not happy with the lack of response I've had from letters I've sent. Even Elizabeth Warren took time out to write back to my when I sent her a letter about expanded home health care for PALS and others with terminal illnesses.

 

[nona]

I get annoyed every time I receive the local chapter newsletter in the mail. How am I supposed to read it? They email us weekly but they can't email the newsletter? Aside from the equipment closet, which is no small thing, I have found little value in ALSA.

 

[Nikki J]

Apparently chapters vary quite a bit. There is a reason you see me telling Massachusetts PALS to contact CCALS for support services.

 

[nona]

All New England PALS, @Nikki J !

 

[Clearwater AL]

Last year my chapter sent me two red rubber wrist bands,
about ½”wide that says in white letters…

I HAVE ALS… (on top.)

Along the bottom it says...

Web.ALSA.org/EMSinfo.

I wear one when I go anywhere. One broke putting it on
and the other one is hiding some place around here.

I called the Chapter, they talked to me for 15 minutes,
how I was doing, how’s clinic going, did I need anything,
asked about Ann.

They sent me four more, which I received 3 days later.

Like Nikki said, Chapters vary I guess.

 

[swalker]

Chapters vary.

When I was visiting my family in Texas for Thanksgiving last year, my wheelchair was stolen. The ALSA in San Antonio provided me with a wheelchair to use during my visit. The care they showed me and how they helped me left a lasting impression.

On short notice, over the holidays, they delivered a wheelchair to my sister's house. They configured the wheelchair for me so It was ready to go. I used that wheelchair during our trip and they coordinated picking the wheelchair up about as we left to head for home.

I could not have wished for anything more. They were fantastic!

Steve

 

[jonico]

I get what Laurie is saying, and it is absolutely worth a good rant to decry her state ALSA indicating on Facebook "one of the services they provide, free of charge, is multidisciplinary clinic care, served by professionals with expertise in #ALS. That is just untrue...local clinics do that. I have to think that is probably a function of the cluelessness of the person who handles their Facebook feed, one would hope, rather than an intended message from the top. I also don't begin to understand ALSA funding as it relates to insurance billing and reimbursables and certification process, etc., so I defer to Laurie's proven expertise on that.

And to Laurie's point, our ALSA and the national ALSA frequently send us (and any friend who ever donated I'm sure) appeals to support them, and it has always included someone's personal story (always hurts to hear one more), accompanied by heart-tugging photos (essentially facsimiles of each of us reading this post). I have read very, very few of those appeals since I was always personally living it, but I guess I get that from a marketing perspective, and I hope those pALS and cALS and their families were more than props and signed off on it in some way, thinking it was important to put themselves out there like that.

All that being the case, I love our Upstate NY ALSA and every person I've dealt with there, especially the Care Services Manager, who was an absolute gem to me so often during the five or so years I really needed their help. We benefited from both their Assistance Program for some grant money to help remodel our bathroom early on, and more than quite a few times over the years from their Caregiver Respite Program to help pay for Aides when we couldn't do it on our own. I know they had other services that we could have tapped into as well, but didn't for whatever reason.

I'm very confident our ALSA wouldn't make the mistake of saying they "provide multidisciplinary clinic care", since they seem acutely aware of the unique role they played in making our life a little easier and how it differed from the unique role our local clinic did the same in their own special way.

I can't even begin to say how much I love the people at our local ALS clinic. I'll be eternally grateful and for all they did for me and Nicole, and frankly, continue to do for me.

Thanks Laurie. I appreciated the opportunity to give this some thought.

 

[EricInLA]

I appreciate all these perspectives on ALSA. I don't know much about them because I haven't yet needed them, and I didn't realize there was such a diverse level of quality in the various localities. I've been donating to our local chapter (Golden West) because, well, just because. But it sounds like some here feel the dollars could more effectively be spent elsewhere. Does anyone on this forum have experience with the Golden West chapter in Agoura Hills? Any opinions, good, bad, or otherwise? Feel free to send me a private message if you prefer to express an opinion that way.

 

[lgelb]

Eric, the best way to develop an opinion about your local chapter is to engage with them and check out their communication.

Our local chapter did lend us a couple of things, so I donated things to them after Larry died, in the hopes they might likewise reach patients in need. Donating goods to a local chapter makes more sense to me than donating to national.

As for money, they probably have to kick part of it to national, so that would be one concern to me, though I'm not saying it should be yours.

I'm not accepting the clueless social media person thing, Jon, because the ED should be policing content and they don't post that much. Even after the fact, the post could easily be removed. And having worked with national a little, I've been left with the belief there is a pattern over the years to what I have described. There doesn't have to be a directive to lie, simply enablement of a series of false premises beyond the scope of my rant. Thanks for listening!

--Laurie

 

[ARCG]

Just an opinion, I think a major benefit the ALSA could provide is locating and training a staff of nurses on the skills needed to care for an ALS patient and providing these nurses for even just a few hours a week of respite for the main caregiver. Some do provide a grant for a few hours, but as many of you know, finding a caregiver who understands the needs and variety of equipment is very challenging. Finding Simeon willing to be trained is a challenge as well. If the ALSA in each state had some of these nurses on payroll, they could offer those few hours of respite, without the main caregiver and pals being concerned.

 

[jonico]

Wonderful idea in theory Annie, but the biggest challenge in practical terms is the large geography the state level ALSA chapters represent. Our chapter's offices are in Syracuse and the larger metro areas they service, Buffalo, Rochester, Albany and Binghamton are all between 1 and 2 hours drive from Syracuse. It would be a huge logistical challenge getting those trained Syracuse-based nurses out to help such geographically dispersed pALS for a few hours here and there.

 

[ARCG]

Yes you are right, I thought about that after I posted it. It would only work in metro areas. In rural areas perhaps they could offer higher grants for folks to find and train local caregivers.

 

[Clearwater AL]

I know all ALS Chapters are not the same. Today I received
a box from my NC ALS Chapter. It was full of goodies.

A binder of info, some already employed for me, info on loan
equipment, a glossary of ALS related medical terms, Chapter
resources, a three color marker (red-yellow-green), a nice
Ipad pen, and a Caregiver gift for Ann. Unique, we’re both
caregivers.

And… they sent me more of those red rubber wrist bands
I wrote about previously.

I hope other PALS have Chapters equally involved and
caring. And for CALS too!

To all, have the best Thanksgiving… whatever best can be.

(Last year we had 18 people here... nobody's coming and we
aren't going anywhere. Just a nice dinner for two... here.
Lot's of Facetime.)

 

[Lkaibel]

The Minnesota/Dakotas ALSA chapter here was very valuable in providing substantial loaner equipment to us, and I appreciated that very much. They further provide meals to those in need, care hours for respite, and raise money for research. We are Ben got an Alexa setup that benefits my house to this day.

I agree, chapters vary greatly. I attend this ones annual gala with pleasure.