I’m Channeling My Grief About ALS into Action and Advocacy

Kristin Neva avatar

by Kristin Neva |

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Global Day 2020

The grief that accompanies ALS is multifaceted. I grieve my husband’s loss of function and the loss of our dreams. Just when we find a new normal, there is further decline.

I let my grief out on the pages of my journal. I cry, I scream in the car when I’m alone, I exercise. These things help me to cope with my sadness and anger, but mostly I feel helpless.

This week, I didn’t cry about ALS because I was too busy channeling my anger into action.

I was outraged that the limited therapy and aide services that Todd receives through a home health agency (HHA) that are paid for by Medicare would likely be reduced with the start of a new reimbursement system.

Todd needs physical therapy to reduce pain in his shoulders and elbows and aide services for showers. His Medicare Summary Notices showed that our HHA billed for both the therapy and home health aide visits, and Medicare paid 80-95 percent of the total amount.

The reimbursements seemed reasonable. Not excessive, but fair for the minimal services that Todd received. My finance-savvy husband determined the payments should have been adequate for the agency to cover the cost of the services he received with enough left over to cover overhead expenses and a modest profit.

So why was Todd at risk of losing some of his in-home care? Were our HHA’s reimbursements for Todd’s care going down with Medicare’s new Patient Driven Groupings Model (PDGM)? And what is PDGM?

Over the last crazy-busy week, Todd and I spent hours researching PDGM. We talked to a manager at our HHA. We read articles and watched presentations. We read the updated Home Health guidelines in the Medicare Benefit Policy Manual. We skimmed hundreds of pages of the Federal Register containing explanations and responses to comments by the Centers for Medicare & Medicaid Services. We called Medicare. We talked to friends in the healthcare field. We learned a lot, but it didn’t make sense until I called the Center for Medicare Advocacy and spoke to someone who explained it in plain English.

Under the new PDGM system, HHAs will receive a lump sum payment for each 30 days of services provided to a particular type of patient no matter how many visits they receive. Medicare expects HHAs to provide healthcare that is reasonable and necessary, which may be more for some patients and less for others. The HHA shouldn’t look at the profitability of an individual patient since the reimbursement amount is based on the average cost of care given to different patient groupings.

At his recent annual physical, Todd’s physician agreed that his current care plan is medically necessary. We then had a conference call with our HHA’s local and central management. Since the necessity of Todd’s care is well-documented, it looks like we’ll be able to keep his services in place.

We won the battle, at least for now. And our struggle inspired me to further action.

After hearing stories from other people with ALS, my frustration with our HHA dissipated. Some ALS clinics were telling people not to bother trying to get care through an HHA. And now some HHAs that had been providing long-term care have cut services to ALS patients in anticipation of PDGM coming into effect.

Without long-term maintenance physical therapy, people with ALS will suffer through pain or take medications that can depress their weakened respiratory system. Pain medication can cause constipation, which is already an issue for immobile people.

I want HHAs to remain financially viable and ALS patients and others with high functional impairment to get the care they need. But there are systemic issues with Medicare’s guidelines and payment system. Medicare provides financial incentives for HHAs to serve patients who only need short-term care, and the guidelines do not require HHAs to provide anything beyond minimal skilled services. They do not receive a higher rate for patients who need additional therapy or aide visits.

It has been an exhausting week, but I’m motivated to raise awareness. My grief has expanded beyond our personal situation. I grieve for the many people with ALS and other diseases who aren’t getting adequate care. I will write to my lawmakers to tell them that our nation’s most vulnerable patients are underserved. And I’ll write another column about Todd’s new reimbursement rate under PDGM and how the new system affects people with ALS.

If you are a Medicare patient whose services are being cut or reduced due to PDGM, please email the Center for Medicare Advocacy at [email protected]. The center needs to know how widespread the problem is so that it can better advocate for vulnerable patient groups.

This is a hard battle, but I like the feeling I get from taking action rather than living with sad acceptance.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.




Wow...that's ridiculous...He is eligible for skilled health maintenance PT...thats covered by medicare...Im a a PT & I do have patients under maintenance Rx as long as their condition requires my skilled PT services...Goodluck
to both of you.

Andrea avatar


Thank you for your blog posts and your advocacy. My sister's husband has ALS and she was told by their clinic that Medicare would not cover a home health aide. Would you be able to provide some information on how to get Medicare to cover a few hours of home care per week?

Kristin Neva avatar

Kristin Neva

Andrea, I summarize our battle and provide links mid-way through this article: http://alsnewstoday.com/2020/01/09/medicare-guessing-game-bureaucracy-rights-dme-hha/

If he needs a skilled service like physical therapy to reduce pain, then he should also be able to get a bath aide once or twice a week. Medicare allows for more hours than that, but they don't pay the agencies an adequate amount to cover as much as the Medicare manual specifies-especially under the new billing model. A doctor needs to order PT. The PT needs to certify that skilled techniques such as joint mobilization or muscle distraction are medically necessary.

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