Working Together to Address Mobility Challenges While Living with ALS

Man in power wheelchair

Decreased mobility is a challenge faced by every person living with ALS, and helping people improve their mobility is a key to making the disease livable. It’s also a key to empowering people to live their lives as they want while reducing or preventing physical, emotional and financial burdens, and to enjoy the leisure activities that enrich their lives.

On a recent Connecting ALS podcast episode, we spoke with Dr. Sarah Parvanta, director of the ALS Focus survey program, to discuss what we know about the challenges people face when trying to access the equipment they need. According to Dr. Parvanta, several key findings came from the most recent mobility survey which will help guide Association advocacy efforts and care services programs. “I like to think of ALS Focus data as a compass that points us in the right directions for taking action,” she said. Full survey results are available on our website HERE.

We also spoke with Stuart Obermann, The ALS Association’s Vice President of Organizational Readiness and co-leader of the new Nationwide Equipment Program. Stuart is helping to lead the Association’s efforts to make sure everyone living with ALS in the US has timely access to the equipment they need to meet their mobility challenges. Here is what he had to say.

The transcript below has been edited for brevity and clarity.

Stuart and Eric

Can you start just by introducing yourself and telling us a little bit about your connection to ALS?
My name is Stuart Obermann and I live in Huntsville, Alabama. I have a long history with The ALS Association, going back about 20 years. My son, Eric, was diagnosed with ALS in 2002 when he was twenty-one and a student at Georgia Tech. And at the time, the Association did not have a presence in Alabama where we live. So, my wife and I co-founded a Chapter of the Association to help serve patients living in our state at the same time, as well as being the primary caregivers for our son. Eric lived with the disease for over eight years, and during most of those years, he was ventilator dependent. I was serving as the Alabama Chapter Board Chair for 10 years and then was elected as chair of the board of representatives of the national Association.

And when that time was up, I moved on to the National Board of Trustees and served for eight years before rolling off to join the home office as a staff member in early 2020. And currently, I'm serving as the vice president of organizational readiness. I am part of the operations team, and we're working to help prepare the Association to operate efficiently as we move into our new unified service delivery model. I am also serving as a co-leader of the new Nationwide Equipment Program, which is now being rolled out in five service areas across the country.

You mentioned the Nationwide Equipment Loan Program, and when we were talking to Dr. Sarah Parvanta a little bit earlier about some of the challenges that some folks face when they're trying to access some of the equipment they need. How does that track with your own experience, both as a caregiver and as someone who has been part of this fight for some time?
Well, there's no doubt that durable medical equipment and assistive technology devices are critical to helping people with ALS and their caregivers to maintain the highest possible quality of life. I personally believe that much of this equipment serves to extend life by reducing the physical burdens on the patients. When we were caring for Eric, we had to go to many different places to obtain the necessary equipment. And since our Chapter was very new at the time, we didn't have a well-developed equipment loan closet established.

While we got some basic equipment from our Chapter, much of it came from various vendors and was funded both out of pocket and by insurance. It was very often a real struggle to get insurance to pay for the equipment since it's a relatively rare disease and our case managers really weren't familiar with some of the unique challenges that our patients face.

One thing that we learned during our ALS journey is that, with many insurance companies, if you'd like to go on case management, you can negotiate with your case manager and make your argument for why the patient requires special features. They certainly won't always approve it, but if you're using their standard reimbursement rules, you almost never gain approval for these specialized advanced features.

What are some of the challenges faced in trying to make sure that geography, for example, you mentioned Alabama, when you were going through the journey, making sure that geography isn't a barrier to access?
It's a great question and something that we feel very strongly that needs to be addressed. In our traditional federated model, we had thirty-four Chapters serving patients in their specific geographic territories. In each Chapter we create a program based upon their resources, vendor and staff availability and the needs of their communities. And the result of that was an extremely varied set of services and types of equipment offered from Chapter to Chapter. Some Chapters have very well developed and sophisticated programs that do an excellent job of meeting the equipment needs of their patient population, but unfortunately, many others have fewer resources and cannot meet all the needs of the patients.

So, the system was very diverse, and in some cases, inequitable. For example, if you live within the service area of one Chapter and need a power Hoyer lift, your Chapter may not have one in the loan closet, but there could be another Chapter, just a few miles away across a state line that has significant inventory, including the power lift that you need. In the current model, there's no easy way for Chapters to share equipment inventory or even know where all the equipment resides since you have thirty-four disparate programs that are all managed independently. This new Nationwide Equipment Program uses a centralized inventory system that will identify where all the equipment for all ALS Association territories resides and make it easy for the local care services staff to locate and source equipment when it's needed.

You mentioned that, in some localities access hasn't been a challenge, and many listeners I'm sure have accessed Equipment Loan Programs at the local level, how will the new program be different from the patient perspective?
People with ALS will continue to contact their local care services representatives at their Chapter office or at their local ALS clinic for all their equipment needs, just as they have in the past. Another finding of the ALS Focus survey that Dr. Parvanta mentioned is that, roughly a quarter of those surveyed reported that they needed their equipment sooner than when it was received. This is likely a function of whether or not the local Chapter had the equipment in their loan closet, or perhaps how responsive their equipment vendor is to new orders.

The new program seeks to reduce the time needed to source and deliver equipment, regardless of geography, using the new centralized inventory system I mentioned as well as creating new partnerships with local and regional vendors. Although the program is just now being launched, over the next couple of years, all of our service areas will be using this new program. And when that happens, we expect that access to this important equipment will be improved in all communities, including the time required to receive equipment, the breadth or variety of equipment available, and the consistency with which we deliver and train caregivers on the more complex equipment. Our driving principle of this program really is that it should not matter where you live to receive our best possible access to this life-extending equipment as well as any training or services needed to begin using it.

To learn more about managing mobility and ALS, visit our website HERE.

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Listen to the entire podcast episode, "Addressing Mobility Challenges", on Connecting ALS or wherever you listen to your podcasts.

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