Policy makers need more concrete information about the characteristics of the disabled community and its unique challenges, a senior White House adviser said today at a forum about Medicare disability and health care reform.

“One thing that is important to note is just how much we don’t know about people with Medicare disabilities,” said Jeffrey Crowley, White House senior adviser on disability policy and director of the Office of National AIDS Policy. He said serving the community can be challenging because disabled beneficiaries comprise a diverse group of people with complex needs. For instance, 15 percent of them have mental disorders while another 11 percent have back and spinal disorders, while many others have conditions such as HIV/AIDS. The problems that the disabled encounter often point to larger systemic gaps and shortcomings in the health care system, he said.

Crowley was one of several panelists at a discussion about a recent report detailing how the 8 million Medicare disability beneficiaries face significantly greater challenges than seniors in the program. Crowley said the study, which examined 2,288 people with disabilities and 1,625 seniors in the program and was published in the September issue of Health Affairs, was an important step to better understand Medicare disability.

The report by two Kaiser Family Foundation researchers found that the younger disabled beneficiaries were three times more likely to report that they had trouble paying for health care in the prior year. They tended to have lower incomes, were more likely to suffer from poorer health, have multiple chronic health conditions, have more doctors and visit them more frequently, live in greater pain and with more depression than seniors. They were also more likely to rely on Medicaid to supplement Medicare and to be without any form of supplemental coverage. They were also more likely to be African American or Hispanic.

One-third of disabled people were also uninsured during the mandatory 24-month waiting period before being able to access Medicare benefits, which co-author Juliette Cubanski said may cause them to enter the program sicker and “reinforces long standing concerns about the waiting period.”

Waiting also caused significant anguish: 72 percent of disabled beneficiaries said delays caused a significant amount of stress or anxiety compared to 40 percent of seniors while another 37 percent of the disabled beneficiaries said they delayed getting or did not get a prescription drug because it was too expensive. Crowley gave the example of a person with multiple sclerosis who pays an average of $30,000 a year for care with 62 percent of that cost going for medications. “A lot of the barriers are finances,” he said.

Health care experts examined how younger disabled Medicare recipients may benefit from provisions in the health care reform law passed this year. Joe Baker, president of the Medicare Rights Center, said that while reform did not eliminate the waiting period, the new law provides a very strong base to improve care. He highlighted two significant provisions: the expansion of Medicaid to cover people up to 133 percent of the federal poverty level and the expansion of individual coverage in exchanges.

“The Affordable Care Act provides a platform to respond to a lot of the challenges we have,” Crowley said. “In some ways we see Medicare leading the way,” he added.

(KHN is a project of the Kaiser Family Foundation.)

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