Pursuant to a grant from the U.S. Department of Health and Human Services, Administration for Community Living, the Center for Medicare Advocacy is undertaking an innovative, model project to assist State Health Insurance Assistance Programs (SHIPs) and Senior Medicare Patrol Programs (SMPs) to reach and serve Medicare Beneficiaries under 65 years old.
While people under 65 with disabilities comprise only 8.4% of the general U.S. population, that percentage is nearly doubled among Medicare recipients. Regrettably, those with disabilities often have lower incomes, require more health care, and find it more difficult to pay for and obtain care compared to Medicare beneficiaries over 65 years of age. They are more likely to have cognitive impairments, report themselves in poor health, and are more likely to have limitations in one or more activities of daily living. To help SHIPs and SMPs learn about the particular needs of Medicare’s younger beneficiaries and to increase the resources available for SHIPs and SMPs to communicate with and support Medicare beneficiaries under 65, the Center will work with strong partner organizations including Justice in Aging, the American Association of People with Disabilities, the Gleason Initiative Foundation, and the Christopher and Dana Reeve Foundation, CHOICES (Connecticut’s SHIP/SMP), and the Social Security Administration. The 17-month project has national reach but will test different approaches in Connecticut, California, and Louisiana.
- I'm not 65 yet, but I am disabled. Can I get Medicare coverage?
- I heard that I had to collect disability for 24 months to be eligible. Is this ALWAYS true?
- I have trouble getting private insurance. Can my illness disqualify me for Medicare coverage, too?
- Are the benefits the same for me as for those who qualify by virtue of age?
- Okay, I qualify. How do I enroll in Medicare?
- If I go back to work, can I keep my Medicare coverage?
Medicare is available for certain people with disabilities who are under age 65. These individuals must have received Social Security Disability benefits for 24 months or have End Stage Renal Disease (ESRD) or Amyotropic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease). There is a five month waiting period after a beneficiary is determined to be disabled before a beneficiary begins to collect Social Security Disability benefits. People with ESRD and ALS, in contrast to persons with other causes of disability, do not have to collect benefits for 24 months in order to be eligible for Medicare.
The requirements for Medicare eligibility for people with ESRD and ALS are:
- ESRD – Generally 3 months after a course of regular dialysis begins or after a kidney transplant
- ALS – Immediately upon collecting Social Security Disability benefits.
People who meet all the criteria for Social Security Disability are generally automatically enrolled in Parts A and B. People who meet the standards, but do not qualify for Social Security benefits, can purchase Medicare by paying a monthly Part A premium, in addition to the monthly Part B premium.
People who qualify for Social Security Disability benefits should receive a Medicare card in the mail when the required time period has passed. If this does not happen or other questions arise, contact the local Social Security office.
What Medicare Benefits are Available for People with Disabilities?
Medicare coverage is the same for people who qualify based on disability as for those who qualify based on age. For those who are eligible, the full range of Medicare benefits are available. Coverage includes certain hospital, nursing home, home health, physician, and community-based services. The health care services do not have to be related to the individual’s disability in order to be covered.
People with Dementia, Mental Illness, and Other Long-Term and Chronic Conditions CAN Obtain Coverage
Beneficiaries are entitled to an individualized assessment of whether they meet coverage criteria.
Although there are criteria that must be met to obtain coverage for particular kinds of care, Medicare should not be denied based on the person’s underlying condition, diagnosis, or other "Rules of Thumb." For example:
- Beneficiaries should not be denied coverage simply because they will need health care for a long time.
- Beneficiaries should not be denied coverage simply because their underlying condition will not improve.
Coverage should NOT be denied simply because services are "maintenance only" or because the patient has a particular illness or condition (See the Jimmo v. Sebelius Summary, below).
Physical therapy and other services can be covered even if they are only expected to maintain or slow deterioration of the person’s condition, not to improve it.
People with certain conditions are at particular risk for being unfairly denied access to Medicare coverage for necessary health care.
People with these and other long-term conditions are entitled to coverage if the care ordered by their doctors meets Medicare criteria:
- Alzheimer’s Disease
- Mental Illness
- Multiple Sclerosis
- Parkinson’s Disease
If it seems that Medicare enrollment or coverage has been unfairly denied, ask the individual’s doctor to help.
Medicare eligibility for working people with disabilities falls into three distinct time frames. The first is the trial work period, which extends for 9 months after a disabled individual obtains a job. The second is the seven-and-three-quarter years (93 months) after the end of the trial work period. Finally, there is an indefinite period following those 93 months.(See the statute at 42 U.S.C. § 422(c), and regulation at 20 C.F.R. § 404.1592). Keep in mind that Medicare eligibility during each of these periods applies only while the individual continues to meet the medical standard for being considered disabled under Social Security rules.
Trial Work Period (TWP)
An individual who is receiving Social Security disability benefits is entitled to continue receiving Medicare as well as Social Security income during a maximum 9 month "trial work" period during any rolling 5 year time period. To qualify, an individual must have gross earnings of at least $770 per month in 2014, or work more than 80 hours of self-employment per month. The nine months of the trial work period do not necessarily have to be consecutive. During the trial work period, the ability to perform such work will not disqualify the individual from being considered disabled and receiving Social Security and Medicare benefits. However, independent evidence that the individual is no longer disabled could end benefits during the trial work period. After the nine month trial work period has ended, the work performed during it may be considered in determining whether the individual is no longer disabled, and thus no longer eligible for Social Security income and Medicare benefits.
Extended Period of Eligibility (EPE)
Individuals who still have the disabling impairment but have earned income that meets or exceeds the "Substantial Gainful Activity" level can continue to receive Medicare health insurance after successfully completing a trial work period. The Substantial Gainful Activity level for 2014 is $1070 a month, or $1,800 for the blind. This new period of eligibility can continue for as long as 93 months after the trial work period has ended, for a total of eight-and-one-half years including the 9 month trial work period. During this time, though SSDI cash benefits may cease, the beneficiary pays no premium for the hospital insurance portion of Medicare (Part A). Premiums are due for the supplemental medical insurance portion (Part B). If the individual’s employer has more than 100 employees, it is required to offer health insurance to individuals and spouses with disabilities, and Medicare will be the secondary payer. For smaller employers who offer health insurance to persons with disabilities, Medicare will remain the primary payer.
Indefinite Access to Medicare
Even after the eight-and-one-half year period of extended Medicare coverage has ended, working individuals with disabilities can continue to receive benefits as long as the individual remains medically disabled. At this point the individual – who must be under age 65 – will have to pay the premium for Part A as well as the premium for Part B. The amount of the Part A premium will depend on the number of quarters of work in which the individual or his spouse have paid into Social Security. Individuals whose income is low, and who have resources under $4,000 ($6,000 for a couple), can get help with payment of these premiums under a state run buy-in program for Qualified Disabled and Working Individuals.
Skilled Maintenance Services Are Covered by Medicare
In 2013 the Center for Medicare Advocacy and Kathleen Sebelius, then Secretary of Health & Human Services, entered into a settlement agreement in the Center's lawsuit Jimmo v. Sebelius. The Jimmo case turned on whether the "Improvement Standard" – a rule of thumb used to terminate or deny Medicare coverage to beneficiaries who are not improving – violates substantive and procedural requirements of the Medicare statute, the Administrative Procedure Act, and the Freedom of Information Act, and the Due Process Clause of the Fifth Amendment. The complaint, with five beneficiary plaintiffs and five national organization plaintiffs, was filed along with a motion for certification of a nationwide class on January 18, 2011.
The Jimmo Settlement clarifies that improvement is NOT required to obtain Medicare coverage.
Pursuant to the Settlement, CMS revised its Medicare Policy Manuals and undertook an Education Campaign. The announcement of the revisions stated:
No “Improvement Standard” is to be applied in determining Medicare coverage for maintenance claims that require skilled care. Medicare has long recognized that even in situations where no improvement is possible, skilled care may nevertheless be needed for maintenance purposes (i.e., to prevent or slow a decline in condition). The Medicare statute and regulations have never supported the imposition of an “Improvement Standard” rule-of-thumb in determining whether skilled care is required to prevent or slow deterioration in a patient’s condition. Thus, such coverage depends not on the beneficiary’s restoration potential, but on whether skilled care is required, along with the underlying reasonableness and necessity of the services themselves. The manual revisions now being issued will serve to reflect and articulate this basic principle more clearly. [Emphasis in original.]
What Can Beneficiaries Do If They Were Denied Care Under the Improvement Standard?
The Jimmo settlement establishes a process of "re-review" for Medicare beneficiaries who received a denial of skilled nursing facility care, home health care, or out-patient therapy services (physical therapy, occupational therapy, or speech therapy) because of the Improvement Standard that became final and non-appealable after January 18, 2011. You can access a request for re-review form here. CMS discusses and links to the form here.
CMS has issued a Fact Sheet outlining the Jimmo v. Sebelius. settlement, whcih may be used as evidence that skilled maintenance services are coverable for skilled nursing facility care, outpatient therapy, and home health care. The Center for Medicare Advocacy has Self-help Packets to help pursue Medicare coverage, including for skilled maintenance nursing and therapy.
Durable Medical Equipment (DME) consists of items that have a medical purpose and repeated use. Some common items in this category include inexpensive items (not to exceed $150); wheelchairs, hospital beds, some walkers; prosthetic and orthotic devices; speech generating devices; oxygen and oxygen equipment. For a comprehensive list of items/equipment paid for by Medicare, see https://www.medicare.gov/coverage/durable-medical-equipment-coverage.html.
DME is suitable for coverage, and appeal if denied, if they meet the follopwing criteria:
- The equipment has been prescribed as medically necessary by your physician. Most items require a Certificate of Medical Necessity (CMN) filled out by a physician; and
- It must be able to withstand repeated use. Medicare expects a piece of equipment to last 5 years and will not usually pay for like or similar equipment within that time frame; and
- It must be primarily and customarily used for a medical purpose; and
- It must generally not be useful to a person in the absence of illness or injury; and
- It must be appropriate for use at home. Under a provision of federal law, a skilled nursing facility is not considered home; and
- The durable medical equipment supplier must be a Medicare-certified provider.
For more information, see https://www.medicareadvocacy.org/medicare-info/medicare-part-b/durable-medical-equipment/
The Centers for Disease Control & Prevention
- Disability Affects All of Us – A Snapshot of Disability in the United States – printable infographic
The Kaiser Family Foundation
- Medicare's Role for People Under Age 65 with Disabilities – Issue Brief
- The Gap In Medigap – In a new policy insight, the Kaiser Family Foundation’s Tricia Neuman and Juliette Cubanski examine a 1990 federal law that ensures that people age 65 and older are able to buy a Medigap policy when they sign up for Medicare, but denies younger Medicare beneficiaries with disabilities the same right unless they live in a state that requires it.
- Social Security Disability
- How Medicare Works with Social Security Disability
- More Medicare Information for People Who Have a Disability
- Medicare Special Needs Plans (SNPs)
The Centers for Medicare & Medicaid Services (CMS) has posted new materials for unions and employers to help employees with decisions about Medicare. The materials are available at https://www.cms.gov/Outreach-and-Education/Find-Your-Provider-Type/Employers-and-Unions/Publications-to-share-with-employees.html. Topics include:
- Apply Online for Disability Benefits
- SSA Booklet: "What You Need to Know When You Receive Social Security Benefits" (.pdf)
- For more information on various services available for those with disabilities, Disability.gov has developed a series of 14 guides about topics such as disability benefits, housing assistance, job training programs, and financial help for families with low incomes. Other guides cover services that promote independence for people with disabilities such as home health care, programs for caregivers, assistive technology, and more.
- AAPD-CMA Beneficiary Survey Summary – November, 2016
- Outpatient Therapy Caps: What Now? January 31, 2018
- What Would Work Better for You? Deciding Between Traditional Medicare and a Medicare Advantage Plan November 9, 2016
- Barriers to Medigap Coverage for Beneficiaries Under Age 65 October 26, 2016
- Medicare Annual Enrollment Period Has Begun – Ends December 7 October 19, 2016
- Transition of Coverage: The Affordable Care Act and Medicare September 21, 2016
- Center for Medicare Advocacy Presents at National SHIP and SMP Conference about Medicare for Beneficiaries Under 65 August 10, 2016
- CMA Survey on Access for SHIPs and SMPs April 29, 2016
- New IRS guidance will impact people eligible for Medicare based on End Stage Renal Disease (ESRD) and those who must pay a premium for Part A January 8, 2014
For older articles, please see our article archive.