Learning the Rules for the Medicare Guessing Game

Kristin Neva avatar

by Kristin Neva |

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Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to select.

The concept is simple: A player wins the hand if his or her card is chosen as the best match. But we didn’t read the rules, and we argued whether or not we could advocate for our cards. As we were packing up the game, I saw a playing tip on the side of the box top. Advocating is not only allowed, it’s encouraged.

Games are frustrating when the rules aren’t clear or when they change during the game. The same is true for Medicare, but people’s health and well-being are on the line. Unfortunately, Medicare plan rules are kind of in a black box.

Our durable medical equipment (DME) provider was willing to set up Todd in his $32,000 wheelchair. They didn’t think Medicare would cover some features, so we agreed to pay about $2,000 out of pocket for things such as the elevate function. But Medicare reimbursed only a fraction of the $30,000 claim because the documentation for medical necessity was poorly written. After multiple appeals, Medicare covered the remaining claim a year and a half later, but not until after the DME provider went out of business. Ours was only one of many cases in which Medicare did not promptly reimburse the company.

The new DME provider that took over our area was more cautious in dealing with Medicare. We were frustrated that the process to get Todd’s wheelchair head controls was taking so long. He had difficulty controlling the wheelchair with his joystick and had once gotten his hand stuck pushing on the joystick with his wheelchair moving forward. I feared that he might injure himself or someone else.

The DME provider said that the request was still in “Medicare Preapproval,” so I called Medicare. A woman informed me that Medicare does not have a preapproval process. The company was referring to an internal department. After getting additional documentation from Todd’s physician, the company provided the new hardware and successfully billed Medicare.

Healthcare providers can’t know for sure whether Medicare will cover a service until they bill it, and once they agree to bill Medicare, they can’t charge the client if the service isn’t covered. The process may work well for common ailments, but ALS is rare, and the health issues that arise from the degenerative disease are varied.

Our healthcare providers haven’t always understood the coding and documentation required to get the proper equipment in a timely manner. At times, they want to delay service until some Medicare guideline is met, but by then, in the time it takes to get the equipment, the disease may progress well past the point of medical necessity.

I’ve learned to research the Medicare rules and advocate for care that should be reimbursed. After Todd was in his wheelchair for about a year, his joints began to ache and he had difficulty sleeping. His physician ordered home healthcare, and a physical therapist provided skilled services of joint distraction and mobilization. The treatment was effective as long as we kept at it, but the home health agency (HHA) wanted to discharge Todd after a few weeks because it didn’t think Medicare would reimburse “maintenance” therapy.

I reviewed the rules and determined that as a result of the Jimmo v. Sebelius settlement, Medicare will reimburse skilled care when it is necessary to “maintain the patient’s current condition or to prevent or slow further deterioration.” Our HHA agreed to provide the service, and Medicare has paid the claims. (See also Medicare Manual, Chapter 7, Section 20.1.2.)

Because Todd was receiving a skilled service, Medicare allows for other home healthcare up to a total of 35 hours per week. We wanted to use this for two showers, but our HHA didn’t want to provide more than one shower until I argued Todd’s case and showed them the rules in Chapter 7 of the Medicare Manual (sections 20.1, 20.2, 40, and 50.7).

Now new rules are on the horizon. Medicare has made the biggest change to the home healthcare reimbursement system since 2000. Effective this month, the Patient Driven Grouping Model (PDGM) changes the caseload adjustment factors that are applied to the reimbursement rates. Medicare payment rates will be based on patient grouping codes, which factor in the primary diagnosis, functional impairment, and secondary diagnoses.

HHAs will no longer receive higher payments for providing more therapy visits once certain thresholds are reached, which creates an obvious incentive to cut the number of therapy visits. However, Medicare anticipates that the new payment system will protect access to care for vulnerable patient populations by reimbursing the mix of services that better matches each patient’s needs (see page 56459 of the Federal Register Vol. 83, No. 219).

I’m seeing speculation on social media that PDGM will negatively affect ALS patients. And there is talk of our HHA reducing Todd’s care services. We are in discussion with management, and Todd and I are spending hours researching, scouring the Medicare website, and skimming through hundreds of pages of the new rules.

I wake up at night trying to wrap my mind around the complexities of Medicare and figure out how to best advocate for Todd to keep the limited HHA services he currently receives. And now he and other ALS patients are at risk of losing their already insufficient services unless we learn the new rules of the “game.”


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.


richard fredericks avatar

richard fredericks

Beautifully crafted article and a reflection of your committed research and advocacy. Many thanks for adding to our collective body of knowledge.

I jumped through many of the same hoops (symbolically!), for my power chair and chipped in $2000.00 for the elevate function. Fortunately, our local ALS Foundation (Northern New England) provided a loaner during the five month approval process.

Still, much more difficult than it should have been.

Cate Prato avatar

Cate Prato

At first I was encouraged by this post, thinking, thank goodness I'm getting insight into Medicare (I am still walking, working, etc. and not on Medicare yet). Then, as you concluded, I felt depressed. Do you have any advice on where to go to get more info on the changes and what we can do?

Kristin Neva avatar

Kristin Neva

I will be writing several articles on the topic as I continue to research. This is a helpful link: https://www.medicareadvocacy.org/center-comments-on-2019-proposed-home-health-rule/

Cate Prato avatar

Cate Prato


John Paul Roy avatar

John Paul Roy

I've been dealing with this very thing. For a long time I didn't even try to get it medicare home health benefits related to my ALS because I was told by my clinic and the local chapter that it's almost impossible to get them. So I have been paying out of pocket. But I eventually decided to research this in depth and found out this is a huge problem for many. Several articles and the Medicare website and manuals prominently talk about how there is no reimbursement for so-called custodial care but in fact there is as long as there is a skilled component included. Many advocates talk about how this is often misunderstood and how Medicare often does not follow its own rules. Now there is another new rule, Another impediment, to getting care having to do with lower reimbursement rates unless you are hospitalized for three nights. (https://www.elderlawanswers.com/a-new-rule-may-make-it-harder-for-medicare-beneficiaries-to-receive-home-care-17302). There can also be difficulties in getting the properly written order from the doctor as well as proving the need for the skilled component. These new rules from the Trump administration are making everything more difficult.

Kristin Neva avatar

Kristin Neva

According to the Medicare manual aide services up to 28-35 hours should be available with skilled care. The problem is Medicare doesn't pay more for more aide services being used. Whether they send an aid for an hour a week or 28 hours a week they get the same amount. My understanding is in flux as I research but my best understanding is that they look at the amount of aide services used by patients across the entire country the prior year and that figure goes into the calculation of the lump sum Medicare pays agencies. The industry standards need to change across the country. Maybe with direct guidelines from Medicare and a higher reimbursement rate for the upcoming year that is not based on the past year's record but based on the care that should be given to patients with high functional impairment. Or Medicare should give agencies aide services bumps in payments for those that provide more care to those with high functional impairment by which the agencies would get more reimbursement from Medicare for more aide hours in the home.

Kim Peuschold avatar

Kim Peuschold

Krista are you able to have Todd qualify for Medicaid yet? It may help. Given Todd's illness he should always be able to have a skilled need for PT or nursing. I applaud your research tactics. Keep it up, it will help.

Kristin Neva avatar

Kristin Neva

Thanks Kim. He does not qualify for Medicaid and he is not VA so we are left with Medicare.

Rick Norsigian avatar

Rick Norsigian

What’s a shame is you cannot qualify for either Medical or Medicaid if you make a certain amount of money, but they don’t understand we have to pay out of pocket for more home caregivers, it cost me 1,600 a month for 18 hours a week of help not even counting my bills but even if your not a citizen you get more help more place’s than we do. My wife has ALS and I know the frustration of Medicare to well even when I was trying to get medication like Radicava which took over 2 months to get. Now we have to fight also for the head control for her wheelchair because the decease progressed faster than it took to receive the chair, 8 months!! Thank you so much for all your information!


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