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.
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