ALS Patients Can Get Medicare Cover for Home Healthcare

ALS Patients Can Get Medicare Cover for Home Healthcare

My family recently made a welcome discovery. It turns out that home healthcare for ALS patients is covered by Medicare.

The revelation came as we faced a dilemma: my care needs had eclipsed my wife’s capacity to provide them. We had wondered how we could be assured of proper care, in light of ever-evolving circumstances, without bankrupting ourselves in the process.

After seeking advice from doctors, nurses, therapists, agencies, and advocacy groups, we had resigned ourselves to the fact that tapping into our meager savings was our only option. And for 12 months, that’s what we did.

That is, until I heard, anecdotally, of an ALS patient receiving 28 hours of home healthcare, all paid for by Medicare.

That knowledge prompted a research campaign that yielded surprising results. I found that Medicare allows up to 35 hours per week of combined home healthcare, provided qualifying conditions are met.

The Medicare Benefit Policy Manual stipulates the basic criteria for home health coverage, with the following provisos:

  • The coverage requires a “trigger.” The patient must have needs that are “medically reasonable and necessary” and “intermittent.” Intermittent means “you need care at least once every 60 days and at most once a day for up to three weeks.” The coverage can include skilled nursing, physical therapy, speech therapy, occupational therapy, home health aides, medical social services, and medical supplies.
  • Services must be ordered by a physician, under a written plan of care, and following a “face-to-face” meeting. Your physician needs to be fully onboard. They may have been previously unaware of the Medicare home healthcare benefit. And because recertification is required, their office workload will increase.
  • The recipient must be homebound. This means he or she must lack the ordinary ability to leave home, without requiring the assistance of an individual or supportive device, and without expending “considerable and taxing effort.” Leaving the house for healthcare appointments, church services, weekly support group meetings, brief errands, occasional special celebrations, and daily short outings in the neighborhood park, are allowable.
  • Care must be provided by a Medicare-certified home health agency (HHA). As with the physician, the HHA selection is critical, and the Medicare certification requirement narrows the list. Unfortunately, ignorance of the home health coverage criteria is prevalent in the HHA sector. Further, under Medicare’s Prospective Payment System, payment is made based on a predetermined, fixed amount, regardless of the actual mix of services and hours provided. So the more care an individual receives, the less profit the agency makes. This leads to some agencies attempting to reduce their weekly assistance, or forego the process entirely. I suggest “cold calling” some Medicare-certified HHAs to inquire if they have the staff to support a daily, Medicare-reimbursed plan of care. If they balk at the notion, or try to “correct” your regulatory understanding, simply move on. That’s what I did, and the fourth contact was a keeper.
  • The care plan must undergo recertification every 60 days. For this reason, it’s important that the trigger not be finite. For example, if someone is treated for pressure sores, the coverage will end when the sores are healed. According to the Medicare Manual: “Skilled care may be necessary to improve a patient’s current condition, to maintain the patient’s current condition, to prevent or slow further deterioration of the patient’s condition.” Restoration potential is not the deciding factor, and there is no time limitation. For that reason, at present, my trigger is weekly physical therapy, to include range-of-motion exercises, which help to slow progression of the disease and maintain my current level of function as long as possible.

Should you decide to pursue this path, be prepared to encounter skeptics and naysayers along the way. You may have to educate, reinforce, cajole, argue, demand, and remind. But, at the end of the day, your (and your family’s) quality of life will be improved, and a fractured system will be made better. After all, it is your legal right, prepaid by you.

As for me, I am celebrating one year of twice-weekly skilled service visits, and daily aide assistance, with no out-of-pocket expenses.


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.

Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
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  1. renee says:

    Thank you for posting this article. I feel so much more relieved. I still work full-time, but I have more trouble walking. I use a walker at work and I will probably retire on June 30. I can receive medicare in January 2019. This has given me some relief and I will keep this column saved in my files. I am thankful my ALS is slow, but I am preparing for my future. I am also in the process of trying to get approved for radicava. In other words, how much will my insurance company pay for the drug. Can anyone share with me their experiences with radicava. Is this drug a benefit? I just feel that it was approved so quickly. I just want to slow my ALS down. Thanks for listening.

    • Dawn says:

      ALS in Ohio is a fast track for Disabilty and Medicare. Not sure where you are but I would start asking ?????? Glad yours is slow progression.

  2. Frank Campbell says:

    This is great – thanks for sharing this information.

    We live in Mexico and pay for all of my spouse’s care. Medicare doesn’t pay outside the U.S. Trying to get an answer from the VA if they will help with nursing care but it has been 6 months now without an answer. If anyone has info to share it would be appreciated.

  3. Jennifer Fisher says:

    Where does it say up to 35 hours in the Medicare Benefit Policy Manual? Our ALS clinic has never seen Medicare approve up to 35 hours for a home health aid, therapies, etc. Also intermittent means, as you state, “at most once a day for up to three weeks.” For someone needing a daily visit from a home health aid, 3 weeks isn’t much for someone with ALS. How are you able get daily visits from a home health aid?

    • rick jobus says:

      50.7 – Part-Time or Intermittent Home Health Aide and Skilled Nursing
      (Rev. 1, 10-01-03)
      A3-3119.7, HHA-206.7, A3-3119.7A, HHA-206.7A, A3-3119.7.B, HHA-206.7.B
      Where a patient is eligible for coverage of home health services, Medicare covers either
      part-time or intermittent home health aide services or skilled nursing services subject to
      the limits below. The law at §1861(m) of the Act clarified: “the term “part-time or
      intermittent services” means skilled nursing and home health aide services furnished any
      number of days per week as long as they are furnished (combined) less than 8 hours each
      day and 28 or fewer hours each week (or, subject to review on a case-by-case basis as to
      the need for care, less than 8 hours each day and 35 or fewer hours each week).

    • Dave Killoran says:

      Medicare Benefit Policy Manual, Chap. 7, §40.1.1 provides for 28-35 home health hours per week of nursing and aide care. Each daily visit must be less than 8 hours. PT, ST, OT as medically necessary and reasonable. See 42 USC 1395x(m).

      Under a “federally qualified” HMO (a few of which still exist), there is NO LIMIT to the frequency and duration of home health visits. Check your plan.

      If the patient is on hospice, there is NO LIMIT on the frequency and duration of nursing and aide visits, other than it be necessary to palliate the dying patient’s symptoms. ‘‘hospices are required to provide virtually all the care that is needed by terminally ill patients.’’ 48 FR 56010 (December 16, 1983 Hospice final rule). Under Medicare, this benefit is available to a patient with a 6-month life expectancy. Some non-Medicare plans provide hospice coverage with a 12-month life expectancy.

      Don’t let your health system short-change you. ALS patients have better legal rights to home health care than most of them realize.

  4. Mari says:

    Thank you for writing this article. Unfortunately, trying to find a HHA to provide care in some states is impossible. I feel this is a subject that the ALSA should be lobbying and advocating for so spouses can continue to work to support the family. Families are bankrupted financially and emotionally by ALS. We need help. Many patients and families choose to go on hospice care to receive care since they couldn’t receive caregiving any other way. But hospice has many restrictions for patient care. And many able patients have to go off hospice care to go the hospital or doctor and then go back on it. I find that these things sound great on paper, BUT can’t be implemented. When an ALS patient is almost completely incapacitated with ALS and requires 24/7 care, there’s very little caregiving help. And you will go bankrupt. Because who can afford a caregiver with nursing skill 24/7 at $30 – $50 an hours. Only a nurse can do a feeding tube, a regular caregiver from a HHA cannot. Nor can they administer medication to the patient. So yes, your wife will have to quit her job at some point and lose her income and medical benefits. I too am unable to do the strenuous needs of a caregiver for my spouse do to a medical condition.

    • Dave Killoran says:

      Mari, please do not be discouraged. If an ALS patient’s state regulators permit insurers or HMOs to restrict coverage unreasonably based on the frequency or duration of home health limits, that patient can help solve this problem by raising it as a civil rights issue.

      Federal courts have repeatedly held that public entities are prohibited from implementing policies or practices that place individuals at “serious risk of unnecessary institutionalization” such as a nursing home. This is because the U.S. Supreme Court has held that “Unjustified isolation . . . is properly regarded as discrimination based on disability.” Olmstead v. L.C., 527 U.S. 581, 600 (1999).

      Under the ADA, Health insurers were allowed to discriminate based on disability, but that has changed under the Affordable Care Act. Section 1557 prohibits discrimination on the basis of disability by any organization that receives any federal funds. See 81 FR 31375, 45 CFR 92.

      Therefore, if an insurance company or HMO (or state or federal agency) has limits on home health care that place an ALS patient at “serious risk of unnecessary institutionalization” such as a nursing home, that limitation of coverage is a ripe target for ALS patients to assert their civil rights under Section 1557 of the ACA.

  5. Sonja says:

    My husband is in his final stage of ALS and is in hospice care in the home. (We live in NC). Our social worker says that Medicare will not help pay for home care. The CNA has been coming out of our own pockets for over 2 years now. I would love assistance in paying for the nurses aide. I am on unpaid leave from work because our family medical leave ran out, and we had to cut the CNA’s hours down, for obvious reasons. My PALS is at the point where he needs to 2 people to help him at once depending on the situation. I cannot do it all by myself and need help. If the info in this article is true and applies to our circumstances, please direct me to who, what, when, where, and how we an get this help. Thank you.

      • Rick Jobus says:

        Sonja….if your husband’s current care is provided by a Medicare-approved hospice provider, it legally should be covered.

  6. Alisa Cameron says:

    My husband was diagnosed with Amyotrophic lateral sclerosis old 4 years ago at 61. The Rilutek (riluzole) and other medications given by his doctors did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Rich Herbs Foundation and their successful AMYOTROPHIC LATERAL SCLEROSIS TREATMENT, we visited their website www. richherbsfoundation. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, he is able to walk and able to ride his treadmill again, he is pretty active now. Alisa Cameron

    • Keith D Estes says:

      Get the hell out of here. This, Alisa is the worst kind of BS in the world of ALS. WORSE than the medical professionals that seemingly don’t care. Worse than the ridiculous obstacles for any kind of assistance from anywhere. The absolute worst is people out there promoting these snake oil cures and false hopes.

  7. Margo Chapman says:

    So what I am reading is that as an ALS patient I CAN get help but it’s up to the HHA if they want to provide it? I get an CNA 3 times a week, physical therapy twice a week. The PT does work with my hands as much as she can with range of motion. I get a visit fro the respiratory therapist once a month. I get Radicava administered at home as I am home bound and on feeding tube. Please give input on my situation. I am in power chair and would love to get my husband a helping hand. 🙏🙏🙏

  8. Debi Beatty says:

    Hello my name is Debi Beatty, my mom was diagnosis in March 2019 with ALS. She recently fell and broke her hip. Can we get in home therapy to get her back on her feet.

    • Rick Jobus says:

      Debi, if your mom is homebound, and has Medicare, she can. Once approved, it can be reviewed for continuation in 60 days.

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