AIDS TREATMENT NEWS Issue #308, December 4, 1998
John S. James

Since the details will matter, we asked benefits expert Tom McCormack what our readers should know about these proposals. While not yet familiar with the details of the president's plan, McCormack worked extensively in drafting the Congressional version (known as the Jeffords-Kennedy Work Incentives Improvement Act), as a consultant to the Title II Community AIDS National Network. Here are some of the issues he suggested for advocates to watch:

* Already, under current law, medical benefits can continue (in some situations) when disability income benefits stop due to work; unfortunately most people are not aware of this. For example, the "Section 1619" program allows a person on SSI who goes back to work and earns too much to keep the SSI income, to still be able to keep Medicaid even if his or her income goes into the lower-middle-class range. And persons who get SSDI (and therefore can get Medicare, too, after two years), can keep Medicare even if SSDI stops due to work; in addition, for these people special welfare programs can help pay the Medicare premiums, well into the middle-income range. These are Federal rules, so they apply in all states.

But the bigger problem under current law is that the Social Security Administration conducts continuing disability reviews (CDRs), to call in whole classes of people, or particular individuals, to see if they are still disabled. If they are found to be no longer disabled, they lose their medical benefits as well as their disability income--even if they have no way to afford the medicines which are keeping them well, and will quickly become disabled again without the medical benefits.

* The Jeffords-Kennedy bill would have allowed improved vocational rehabilitation, and enhanced Medicaid/Medicare benefits, for persons going back to work; for example, states could get extra money to remove the Medicaid cap on prescriptions.

* This bill would have allowed states to receive extra high Federal Medicaid matching funds, if they gave drug and other early intervention services to pre-disabled persons who were at risk of becoming disabled, but could avoid becoming disabled by early medical care. This provision was mainly at the request of advocates for the mentally ill and mentally retarded, but could also be critically important for persons with HIV who are not yet "disabled." States would have been able to decide whether or not to participate, but they would get more money if they did.

* The Jeffords-Kennedy bill did not include one provision it clearly should have had. Today, Federal rules are unclear on whether working persons who still have the underlying condition that led to their disability can keep Medicare or Medicaid if they are found to be no longer disabled enough for disability income checks. This is important because many people are in remission--they are currently able to work, and therefore not "disabled" today--but no one knows how long the remission will last. If they lose their status as disabled, it may be difficult to re-establish it later if they become unable to work again.

According to McCormack, current law, if read literally, seems to suggest that a person who still has the condition on which he or she received the determination of disability should not lose their disability status for medical-treatment purposes-- even if they are currently in remission, able to work, and no longer disabled enough for disability income payments. But the Federal regulations implementing the law have been written so that if someone flunks the disability review they lose medical care as well as disability income.

So McCormack and others tried to get the Jeffords-Kennedy bill to clarify the intent of Congress--so that, for example, if someone became disabled due to HIV disease, but later was able to go back to work, they would not then lose access to their medical care, since they still had the underlying condition (HIV disease). McCormack explained that this provision did not get into the bill only because of the desire to avoid anything that might have raised controversy, in the failed hope of getting the legislation into the omnibus bill (in which case it would have been law today).

The NEW YORK TIMES article suggests that the Clinton proposal is particularly targeting rules which discourage people from working, for fear of losing their medical care if they do. For example, people who lose Social Security disability benefits because they return to work would be able to keep Medicare, and could buy Medicaid coverage under rules which could be set by the states.

* Advocates should be aware that when this disability reform is debated, the official figures for the cost of new legislation may be unrealistic, greatly overstating the cost. This is because the computation of the cost cannot consider the savings from people no longer needing disability income since they are back at work (and who also may not need the government medical programs eventually, as they become established at work and obtain private insurance). These savings cannot be included in the cost estimates, due to laws that Congress passed years ago about how the Federal budget should be computed. This means that advocates may need to bring the savings estimates separately into the public debate, or it will look like this disability reform is costing much more than it really is.

For more information on these issues, call Tom McCormack at 202-479-2543.
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