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Oct 18, 2004

Two-Year Wait for Medicare Coverage Raises Concerns About Care, Independence for Uninsured Disabled

Report Recommends Eliminating Medicare Waiting Period

New York City, October 18, 2004—Some of the most medically needy individuals in our society—uninsured disabled adults—are further challenged in obtaining needed health care by Medicare's two-year waiting period for the disabled, says a new report from The Commonwealth Fund and the Christopher Reeve Paralysis Foundation.

Although federal Medicare law provides coverage for individuals under age 65 with severe and permanent disabilities, a little-understood provision requires a two-year wait before coverage begins. In contrast, there is no waiting period for a 65-year-old Medicare beneficiary.

This wait for coverage threatens the health, independence, and economic well-being of thousands of Americans, concludes Waiting for Medicare: Experiences of Uninsured People with Disabilities in the Two-Year Waiting Period for Medicare, authored by Adrianne Dulio of Lake, Snell, Perry and Associates (LSPA), Bob Williams of Advancing Independence, and colleagues. They recommend that the waiting period be eliminated and that coverage begin when a person is determined to have a serious disability.

"Just at the time when disabled individuals are most in need of health care, when they have been affected by a traumatic accident or diagnosed with a serious illness, we are missing opportunities to provide access to treatment to help facilitate recovery and ensure a more independent future," said Commonwealth Fund President Karen Davis. "This shouldn't happen in a compassionate society."

An estimated one-third of the 1.2 million disabled Americans currently in the waiting period for Medicare lack health insurance. Nearly half have incomes below the federal poverty line, often because their disability leaves them unable to work. Many can't obtain care that could help them better manage their conditions, remain healthy and possibly work.

In focus groups and interviews conducted by LSPA researchers, study participants now in the waiting period describe their experiences. They detail the effects on their health and ability to lead independent lives, and of going without needed doctor visits, medications, tests, and rehabilitation therapy, because of inability to pay out-of-pocket costs for these services.

  • A participant with diabetes and cardiovascular disease says "sometimes you make a decision... Well, maybe I don't get this prescription filled because there is not money to pay for it."
  • Two participants with cancer have stopped their chemo and radiation therapy because they can't afford it.
  • A woman with MS and rheumatoid arthritis says, "I have to go down my list of medications and choose which pills I can take and which I can't." Her doctors say her MS is progressing rapidly because of her skipped medications.
  • Participants with spinal cord injuries experience difficulty obtaining or maintaining needed rehabilitation therapy. One participant says "the doctor told me that... I needed therapy so I would get out of this chair... because that way, my muscles will start moving again, but now I have to wait two years."
  • One study participant with pancreatic cancer believes the thinking behind the waiting period is "well, maybe you won't live long enough for us to have to pay that benefit on you..."
Participants in the study fear that their health is deteriorating because of their lack of health care, and say that they would not have to worry about hospitalization if they could keep up with their doctor visits. They believe their prospects of being able to return to work to be very limited, and because they are unable to obtain therapy or devices they need to work, they are unable to become independent.

The authors recommend that Congress take action to eliminate the current Medicare two-year waiting period and begin Medicare coverage concurrently with that of Social Security Disability Insurance (SSDI).

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Oct 18, 2004