The Single Most Important Thing for MS Families to Understand About Medicare
Medicare home health care for multiple sclerosis is covered even when you are not expected to improve. That is the law. It has been the law since January 2013. And almost nobody talks about it.
If you have ever been told that Medicare will stop covering your MS home health care because you’re “stable” ,”chronic,” “plateaued,” “not progressing toward goals,” or “unlikely to improve” – you were given wrong information. That standard, often called the “Improvement Standard,” was struck down by a federal court more than a decade ago, and Medicare has since been required to cover skilled care to maintain a patient’s condition or slow further deterioration. This page explains exactly how, and what to do if you face a denial.
The Jimmo v. Sebelius Settlement (Background)
In January 2011, the Center for Medicare Advocacy and Vermont Legal Aid filed a class-action lawsuit on behalf of Medicare beneficiaries who had been wrongly denied coverage for skilled nursing facility care, home health care, and outpatient therapy on the grounds that they were “stable” or “not improving.”
In January 2013, the federal District Court of Vermont approved a settlement requiring the Centers for Medicare & Medicaid Services (CMS) to:
- Confirm in writing that the Improvement Standard is not a valid basis for denying coverage
- Revise the Medicare Benefit Policy Manual (Chapters 7, 8, and 15) to reflect this
- Conduct a court-ordered Educational Campaign for Medicare contractors and providers
- Publish a dedicated Jimmo settlement webpage at cms.gov/medicare/settlements/jimmo
In 2017 and again in 2024, CMS issued additional implementation reminders to Medicare Administrative Contractors and Medicare Advantage Organizations to retrain staff on Jimmo. The settlement is fully in force.
The Holding (in CMS's Own Words)
The Medicare Benefit Policy Manual now states explicitly:
“Skilled nursing services would be covered where such skilled nursing services are necessary to maintain the patient’s current condition or prevent or slow further deterioration so long as the beneficiary requires skilled care for the services to be safely and effectively provided.”
“Coverage of skilled nursing and skilled therapy services in the SNF, HH, and OPT settings does not turn on the presence or absence of a beneficiary’s potential for improvement, but rather on the beneficiary’s need for skilled care.”
Translation: the test is not whether you’ll get better. The test is whether you need skilled care.
Multiple sclerosis is a paradigmatic case for Jimmo because of its progressive forms. PPMS by definition does not improve – symptoms steadily worsen from onset. SPMS by definition follows a progressive course after the initial relapsing-remitting phase. Even RRMS often leaves residual deficits between relapses. Without Jimmo, Medicare contractors could deny coverage to entire MS populations on the grounds that improvement is not expected.
Per the Center for Medicare Advocacy, appropriate maintenance therapy goals for “a patient with a progressive neurologic condition” – which directly includes MS – include:
- Maintaining joint flexibility and range of motion
- Preventing contractures (a major issue in advanced MS)
- Reducing risk for skin breakdown and pressure injuries
- Ensuring appropriate positioning
- Reducing fatigue
- Promoting safety and fall prevention
- Maintaining strength and flexibility
- Preventing avoidable complications such as deconditioning and muscle weakness from immobility
Each of these goals – maintenance, prevention, function preservation – is a Medicare-covered objective for MS patients under Jimmo.
A 2018 provider survey found that 40% of clinicians had not heard of the Jimmo Settlement, and over 85% of those who had said they did not actively apply it in coverage decisions. The Improvement Standard, while officially dead, lives on as informal practice – sometimes by habit, sometimes by misunderstanding, sometimes because contractor reviewers were never properly retrained.
This is why MS families often need to advocate for their own rights. If a clinician, agency, or insurer cites “lack of progress” as a reason to deny or terminate care, that is your signal that Jimmo is being violated. You have appeal rights and they are typically successful when properly invoked.
Important caveats. Jimmo did NOT change other eligibility rules:
- You still must be homebound
- You still need a doctor’s order and a signed plan of care
- You still need a face-to-face encounter
- You still need skilled care – care that requires the judgment of a licensed nurse or therapist
- Routine non-skilled help (bathing alone, companionship) is still not covered when it’s the only need
What Jimmo changed is the benchmark for whether coverage continues: need for skilled care, not potential for improvement.
How Maintenance Therapy Works in Practice for MS
Physical Therapy
A PT may visit one or two times per week to maintain range of motion, prevent contractures from spasticity, work on transfers, and adapt the program as the disease progresses. The fact that the patient is not expected to walk faster does not affect coverage – what matters is that skilled PT judgment is required to safely and effectively provide the care.
Skilled Nursing
An RN may visit weekly or biweekly to manage catheter care, monitor skin integrity, reconcile medications, and assess for early signs of complications like UTI or aspiration. The goal is prevention and stability – both Jimmo-covered objectives.
True 24/7 Coverage
Our intake line is staffed 24 hours a day, 365 days a year. Our patients have access to an on-call nurse around the clock for clinical questions, medication concerns, and urgent care coordination.
Occupational Therapy
An OT may visit periodically to update home safety as needs change, adjust adaptive equipment, retrain ADLs, and address cognitive strategies. Maintenance of independence in daily activities is a covered Jimmo goal.
If You Face a Denial
Five levels of Medicare appeal exist: redetermination, reconsideration, ALJ hearing, Medicare Appeals Council, and federal court. Many denials based on lack of improvement are successfully overturned at the first or second level when Jimmo is properly invoked. The Center for Medicare Advocacy (medicareadvocacy.org) maintains an Improvement Standard Toolkit specifically for these appeals.
Our medical social worker helps families navigate the process – and our clinical team documents skilled need and Jimmo-applicable goals from day one to prevent denials in the first place.