Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.

Amy Roman, a speech and language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco, recently discussed the expansion of telehealth offerings and the need to make access to telehealth permanent on a recent Connecting ALS podcast.A portion of that conversation has been edited and condensed below.

Why are the recent changes to the Centers for Medicare and Medicaid Services coding process -- codes that will allow five separate services related to speech and swallowing to be covered under the CMS for telehealth visits -- a critical step for the ALS community?
This is something that I have been interested in, expanding Medicare coverage, for quite some time, even quite a bit of time before this pandemic. Telepractice, or telehealth, is important for so many people with ALS because it provides the opportunity for people who are homebound or people who live remotely to receive equivalent services to people who are able to get into clinics all the time.

For example, to get a speech generating device, people need to have an evaluation by a speech language pathologist, and it's always ideal if they can have an evaluation by someone who specializes in augmentative alternative communication; but most of the people who provide these services are specialists who are located in urban centers. So, for many patients that I've worked with over the years -- initially I travel sometimes three hours to get to someone's house so I could do one of these evaluations. And then as the years went by, I started doing telepractice or telehealth evaluations for people -- having the vendor go into the home with speech generating devices, having multiple vendors go in. And the evaluations went really, really well.

Speech therapy, physical therapy, occupational therapy, these are all codes that were not able to be provided through telehealth. Only physicians were able to bill through telehealth. So patients were not able to have the services that they required if they were not able to get into a clinic.

Medicare did expand service during this public health emergency back in April of 2020 to include the allied health professionals -- physical therapy, occupational therapy, and speech therapy. And we all know that those are important for people with ALS, but they excluded specific codes. I was thrilled for about half an hour to see that they had expanded those services early in the pandemic, and then I dug a little deeper and saw that the codes that the people I worked with with ALS most needed were being excluded. And that was a shock. And those included codes for assistance with swallowing, to teach strategies for swallowing, to avoid choking, to meet your nutrition and hydration needs, to avoid aspiration pneumonia. These are all things that I have been providing very easily through telepractice for people, but that was an excluded code as were all the codes for speech generating device treatment and evaluation.

I contacted The ALS Association and the American Speech and Hearing Association, and we started the process of contacting legislators and people at the Centers for Medicare and Medicaid Services and talking to them and sending them all kinds of information for why these services should be included in their coverage. Then, in March of this year, kind of out of the blue, we saw that they were now being covered until the end of the public health emergency.

What is the importance of a code? How does that work? Why do you need these codes to be approved, provided, made available?
Medicare has for each profession certain codes that are covered codes, meaning Medicare will pay for it. The particular codes that we're talking about are for services for swallowing difficulties, communication, speech generating device services, like the evaluation for a speech generating device and the treatment for receiving training on how to use a speech generating device. If these codes are not covered, then they can't be provided.

The reason that Medicare is so important is because for people with ALS, even under the age of 65, do qualify for Medicare, and that's important to know because that's an important benefit. That's one key reason that almost all of the people I work with who have ALS have Medicare. But another one is even those who don't have Medicare, most insurance follows Medicare's lead. Medicare will say, “Oh, OK, we will cover a speech generating device evaluation provided through telepractice, through telehealth. We will pay for that.” Then, Blue Cross Blue Shield, and all of the others will typically follow Medicare's lead.

Knowing that these codes weren’t covered back in the beginning of the pandemic, who did you reach out to, to get this effort started so that we might see some change?
I was already working with The ALS Association on some research that I'm doing. I started in 2018 realizing that, frankly, I was getting burned out driving three hours to do an evaluation, and I was having great success doing these evaluations through telehealth: the vendors or the different augmentative, alternative communication devices would come in to the homes for the people and I would connect via teleconferencing. We were reaching people that just were going to be left out of this process. If you don't have an evaluation by a licensed speech language pathologist, you cannot receive this durable medical equipment through Medicare or any insurance. People were really being excluded from getting the services and the equipment they needed so I started a study. I've been very interested in telepractice and wondering if it would be effective.

And what my study shows is that it is feasible. We can meet the Medicare requirements and guidelines to get someone the durable medical equipment or speech generating device they need. And the participants in this study were very pleased with the services. They were people with ALS and their primary caregiver, and across the board they were really thrilled to receive the services in their home where they would be using this equipment. In a lot of ways, it made more sense to do the evaluation there, then to go out to some clinic.

For many people, by the time you get to clinic you're kind of exhausted. Just getting ready to get into that transport, whatever system that you're using to get there is often a big effort. The ride can be stressful, and you get in, and then you find out that I want to show you multiple speech generating devices so that you really can compare and contrast. And then it's going to take a number of visits for me to get you trained properly to use this. So, it’s nice to have the telehealth option for people with ALS. By the time COVID rolled around, I had already been doing some of these evaluations for people. I was confident that we could do them well. I was really halfway through my study already. So, for me, it was immediately, I just thought: I've got to bring it to the attention of The ALS Association and the American Speech and Hearing Association.

You talked earlier about the time limit on these codes and on the expanded access to telehealth expected to go through the end of the public health crisis. What can be done to make this expanded access permanent after the pandemic ends?
It's going to take lobbying. That's why I reached out to The ALS Association initially. We need to get some legislators who want to take this on as a cause for them and recognize why telepractice and telehealth is so important for some populations, not just people with ALS, but anyone with mobility issues, with endurance issues. They should be able to get speech therapy, physical therapy, any of those services in the home through telehealth.

So often what we're doing is training the partners how to do what needs to be done to train other communication partners. I can say for physical therapy, for example, training them how to go through maybe a stretch routine to keep someone's mobility, that would be important. And that could be done via telehealth, and as professionals we need to determine ourselves what we can and what we can't do through telehealth. And once we determine that we are able to do it, we should be able to be reimbursed for that. And people should be able to receive those services.

To listen to the podcast episode, "Expanding Access to Telehealth for Speech-Language Pathology…" with Amy Roman in its entirety, visit ConnectingALS.org HERE.