Disabled are falling through gaps in Medicare coverage

Washington -- Reatha Jenson, a former truck driver from Samson, Ala., is a Medicare beneficiary. But don't call her a senior just yet. The 60-year-old is one of about 5 million Medicare beneficiaries who qualify for Medicare by virtue of a disability, rather than age.

Eight years ago, Jenson fell while cleaning her truck and struck her head on a steel beam. The accident caused nerve damage in her arms and legs. Unable to work, she waited two years to qualify for Medicare, which helps pay for her doctor's visits, oxygen and a nebulizer. But she must still find the money for prescription drugs and the cost sharing required by Medicare.

"I don't go lots of times when I need to go because I know I can't pay for it, and even if I could pay the doctor, how would I buy the medicine?" Jenson said. "Why go to the doctor if you can't pick up the medicine that he's prescribed you? That's a waste of your time."

A survey conducted by the Kaiser Family Foundation found that Jenson's story is not unique. Although Medicare provides access to health care services for the elderly and disabled, it requires beneficiaries to share some of the cost burden. Many cannot afford to pay their portion and as a result go without needed health services or products. Activists charge that the latest Medicare reform efforts continue to treat disabled beneficiaries as a forgotten population.

Disabled beneficiaries have higher average costs than seniors but lower average incomes. Studies have shown that disabled beneficiaries are twice as likely as seniors to live under the federal poverty level, yet spend 40% to 50% more for prescription drugs and are almost twice as likely to spend at least 10% of their income on health care costs.

Part of the reason is that disabled beneficiaries generally gain Medicare eligibility by qualifying for Social Security Disability Insurance payments. To qualify, beneficiaries must have a disability that will prevent them from working and is expected to last at least a year. That means disabled people are less likely to have the income to cover Medicare cost-sharing requirements.

The Kaiser study found that almost half of the general disabled population had annual incomes of less than $12,000, approximately the federal poverty level for couples. The survey found that many disabled beneficiaries had to resort to economizing on their health care, cutting back on routine care and maintenance of their conditions, because they could not afford the costs.

Rates of putting off care were almost double for disabled Medicare beneficiaries. About 60% reported postponing care due to costs, and 58% did not take their medications as prescribed.

"It is well known that seniors often skip doses or split pills to make ends meet," said Patricia Neuman, vice president of the Kaiser Family Foundation and one of the study's authors. "This study shows that younger adults with disabilities do so to an even greater degree -- particularly those on Medicare who lack drug coverage."

Like Jenson, many who responded to the survey reported problems getting physician care. "We heard a lot of stories about people going from doctor to doctor, particularly in rural areas, and not being able to find one who understands their particular health care needs and situation," said Kristina Hanson, PhD, the lead study author.

Meanwhile, physicians treating disabled beneficiaries are likely to get paid less. Safety net health care professionals are basically writing off the co-payment when they see disabled patients, said Kathleen Sheehan, director of government relations for the National Assn. of Psychiatric Health Systems, who served as case manager for her disabled brother.

"We routinely got requests for co-payments ... for my brother, which we just threw in the trash because we knew there was no way he was ever going to get to pay them," she said. "It's not a problem only for the beneficiary, it's also a problem for the provider."

The survey found that disabled people went without preventive care as well. Less than half of disabled women got mammograms, and only a third of men had prostate exams. That could be due to the cost of dealing with the health care problems directly related to their disabilities, said Bob Williams, co-director of Advancing Independence, a Washington, D.C.-based disability advocacy group.

"People may be so busy getting their disability's specific needs met that the rest goes by the wayside," he said. "If over 50% of women were going without mammograms and less than a third of men in any other population group were receiving prostrate screenings in a year, it would be attacked as a major public health crisis."

Medicaid's helping hand

The study results also showed that disabled people eligible for both Medicare and Medicaid had more comprehensive coverage because Medicaid filled in many of the gaps in Medicare coverage. States have different financial criteria for Medicaid eligibility. Many disabled people have incomes or assets too high for Medicaid eligibility but low enough to make health care costs a problem.

"[Medicaid] often does a better job of meeting the overall health needs of people with disabilities of every age than practically any other plan," Williams said. "It is also a reflection of just how inadequate and inappropriate many benefits in Medicare and private plans often can be for those with disabilities."

In focus groups done to help design the study, people with disabilities said those with both Medicare and Medicaid had all of the benefits but without the heavy cost-sharing burden of Medicare alone. "They call it a gold card," said Michael Perry, vice president of Lake, Snell, Perry and Associates, who conducted the focus groups.

Medicaid coverage was particularly prized for its drug benefit. Medicaid beneficiaries were least likely to report having to skip doses or split pills due to cost.

Disabled Medicare beneficiaries are likely to get more assistance with drug costs through a discount card this year and a prescription drug benefit in 2006. The benefit, passed last year as part of the Medicare reform package, includes extra assistance for low-income beneficiaries and those with high drug costs. But Williams said that might not be enough.

"It will provide a fairly good benefit to many who make moderate use of prescription drugs, while continuing to impoverish people with disabilities and long-term illness who need medication the most," he said.

Patient advocates are calling for Congress to step in to improve coverage for disabled persons. Eliminating the two-year waiting period for Medicare eligibility, helping disabled people get private insurance, and further expanding Medicare and Medicaid benefits are all policy options.