What Is "Disability" Today?

In an epidemic in flux, what is a 'disability' today? First, you must understand that different definitions of the term are used for different purposes. A distinction must be made between

1. Social Security Disability, defined as inability to make a living "at any job in the national economy;" and

2. Private Disability, in which definitions can vary widely.

The best are the most limited definitions (inability to meet the essential requirements of your job); while the worst are like the SSA definition. In some cases, a more liberal definition is used for the first two years, and the more strict definition thereafter.

Do not assume that your policy says what you'd like it to. Find out exactly where you stand.

Social Security Today

Although according to the experts no dramatic changes have been officially implemented as of yet, the shifting perception of disease as "chronic" has already begun to filter in at various stages of the process. HIV is rapidly losing its "privileged status" as a fatal disease. The writing on the wall is clear, and effectively protecting yourself in today's epidemic calls for greater vigilance, as well as more extensive documentation at every stage of the game. It is important that you understand the role of Disability Determination Services, ("DDS"), a state agency contracting in each state with the Social Security Administration ("the SSA"). The DDS is responsible for

1. initial determinations of disability once an application for benefits has been filed, and

2. continuing Disability Reviews ("CDR's").

All SSA cases are subject to periodic review, (CDR), and HIV disability cases are still automatically set for the longest possible such period, 7 years. This could change, but hasn't yet generally (although 5 year reviews have been noted in a couple of cases.) As time passes, and people continue to live longer, such reviews will become increasingly routine. Accordingly, it makes sense to develop a sense of where you now stand in the system, and how to protect yourself within it.

Continuing Disability Reviews. Here's the CDR procedure in a nutshell:

1. Once the time has arrived for review of your case, the DDS notifies you of the review, requests medical records, etc.

2. Information sent in; and

3. Most determinations of disability previously made by the SSA are left in place. If not, you must appeal within 10 days of notification of denial or checks will stop. You have 60 days to appeal, but checks will stop if you miss the 10-day deadline. (And if you are on SSI, Medicaid stops!)

4. On appeal, your case will go to hearing before a DDS officer to evaluate the question of Residual Functional Capacity. (In a nutshell, this evaluation focuses on the question of whether or not you are still unable to perform any job in the national economy.)

   Take this process seriously; realize that your benefits could well be at stake. Prepare as complete a record as possible on an ongoing basis, including all medical and hospitalization records, diagnostic letters from physicians, and fill out daily habit questionnaires. It might be a good idea to keep a "bad news" journal, identifying in full detail all the symptoms that are keeping you laid low and completely unable to function in the workplace. If you are still fully disabled, make sure you provide them with every possible piece of evidence you can think of explaining to them exactly why.

5. If your hearing before the DDS officer is unsuccessful, you have the right to appeal to the SSA, where your case will be heard by an Administrative Law Judge ("ALJ").

This procedure can take months. In today's changing epidemic, and the SSA's anticipated increasing skepticism of ongoing disability, a key issue in your case may be the effectiveness (or not) of treatment regimens, as well as the debilitating side effects of the drugs. The people reviewing your case may hold it against you if they come to perceive you as "not trying," so make clear if at all possible that you would return to work if at all possible.

Private Disability Today

In light of media hype, wariness is appropriate. Companies are tougher in granting disability claims ("You've been working all this time while you were HIV-positive, why stop now?"), and keeping coverage in force. It is crucial that you understand your rights under your policy, and document your disability. Think about it: corporate America is more bloodthirsty and less loyal than ever before to its working employees. What are the implications for you, as one who they may see only as a financial burden on them, and providing them no financial benefit?

Relevant Legislation

The provisions of HIPAA (mentioned above) may be helpful. In addition to the viatical taxability issues, the law introduces health insurance reforms (including portability laws), and modifies COBRA law.

"Portability" Provisions. Aimed at attacking the problem of "job lock," by limiting the imposition of pre-existing condition (PEC's) exclusion periods upon workers moving from one insurance coverage to another. Law generally took effect as of July 1, 1997, and covers employment groups of two or more. The law works by

• limiting exclusion periods to a 1 year maximum;

• narrowly defining PEC's as conditions for which medical treatment was received during the 6 months prior to coverage; and

• in its most important innovation, introduces the concept of creditable coverage.

So long as there are no gaps in coverage of 63 days or longer between one coverage and the next, new employees will be given full credit against any PEC exclusion period, month for month, for time covered under virtually any other health insurance previously in place (including COBRA coverage, Medicare, or Medicaid). Thus, the law could be a boon not only for people switching from one job to the next, but also for people returning to the workforce after a period of disability.

The law also guarantees the availability of individual coverage for people whose COBRA coverage has expired, but who are not yet eligible for Medicare. For more information on this important legislation, please see Chapter 11 of HIV Law, mentioned above. Problems with law: no guarantees of affordability; no protections as to quality of coverage; allows imposition of non-discriminatory benefit caps.

COBRA Modifications.

Somewhat relaxes requirements to qualify for extra 11 months of coverage (disability extension coverage, designed to carry you until Medicare kicks in.) Historically, you had to be disabled at the time you left your job to qualify for that extended coverage. Now, you'll qualify if your disability started within the first 60 days of your COBRA coverage. This can add months of leeway, and that can make a big difference.

Important Note: Although few people know it, in order to qualify for the extra 11 months, the law requires you to notify your employer (or its plan administrator) that you've been found to be disabled by SSA within 60 days of that finding. If you fail to notify within first 18 months, extension coverage may be denied and you may find yourself out of luck. BEWARE!!!

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