Is the Work Incentives Improvement Act "the most significant advancement for people with disabilities since passage of the ADA?"

It just may be. Experts on employment of people with disabilities say President Clinton wasn't exaggerating in his description of the new bill's import.

If the new law — passed almost unanimously by both houses of Congress late last year and signed by the president on Dec. 17 — works as it's designed to, one of the biggest obstacles to employment of people with disabilities could be significantly weakened. Fear of losing health care benefits is a major deterrent to working, as reflected in a survey Quest conducted last year (see "Hardly Working," vol. 6, no. 4).

Portions of the Ticket to Work and Work Incentives Improvement Act — which goes into effect Oct. 1 — would allow many people with disabilities to retain or start receiving Medicaid or Medicare health coverage even if they take paying jobs and give up disability income provided through the Social Security Administration.

Currently, anyone earning more than $700 a month loses both disability income and the health coverage that goes with it (with some exceptions). In part, this is because, for purposes of initial eligibility, the government defines disability as the inability to engage in any "substantial gainful activity." Applicants must meet this definition and qualify for disability income before they can be considered for federal insurance based on disability.

One respondent to Quest's survey summed up the fear of taking a job without federal medical insurance: "The money we make isn't enough to pay for our additional medical-related products. Sure we make enough for the average person to live, but we are not the average people. We need personal care assistants, special equipment, therapy, etc., which adds up."

Even people who work for companies or organizations large enough to provide group health coverage for all employees, regardless of pre-existing conditions, often prefer Medicaid or Medicare. Private insurance usually doesn't cover the unique expenses associated with a long-term disability, such as personal assistant services, regular physical therapy and custom-made orthopedic equipment, while the federal programs often do.

Under the WIIA, eligibility for Medicaid or Medicare will no longer be tied so tightly to being "too disabled to work." The opportunity to hold onto needed health coverage should be a major incentive to finding a job that pays much more than disability benefits, says Marybeth Waltman, a member of MDA's National Task Force on Public Awareness.

Both in her job as a claims representative for the Social Security Administration in Hartford, Conn., and in community disability organizations, Waltman finds, "From a personal and a professional standpoint, the biggest concern that people have is the medical.

"It's a definite incentive for the disabled to work if they don't lose their medical, which is so critical. It is a big milestone to get it [the new law] to fly. I think it's a great thing."

WHAT IS THE BILL?

Three sections of the new bill extend the scope of health coverage to working people with disabilities. (Note: The following brief summary doesn't include all details, and state implementation will vary. See "Will the WIIA Help You?," page *** 30, for more information.)

Medicare Coverage Extended

People who receive Social Security Disability Income are covered by Medicare. Currently they can try working for up to nine months without losing their SSDI or Medicare benefits. An additional three years of Medicare coverage is allowed if the employee continues working and remains disabled.

Under WIIA, employed SSDI recipients with disabilities can have Medicare Part A coverage (hospital coverage) for another 56 months (for a total of eight and a half years) without paying premiums, regardless of earned income. A Medicare Buy-In program allows disabled workers to receive coverage after that by paying premiums.

Medicaid Buy-in

The Balanced Budget Act of 1997 authorized states to allow disabled workers to pay premiums for Medicaid coverage if their income was no higher than 250 percent of the federal poverty level. The program is available to people who would meet the criteria for federal Supplemental Security Income except they earn too much to qualify (SSI includes Medicaid coverage). But only three states — Oregon, Alaska and Minnesota — have implemented full Medicaid Buy-in programs. Under the WIIA, the federal government will award up to $150 million in grants to help states set up such programs. More people who want to work will benefit because states can raise the income ceiling for the Medicaid Buy-in as high as they like, with premiums and fees based on income.

Doug Stone, manager of health and long-term care planning with Oregon's Senior and Disabled Services Division, says the WIIA will expand the options available under the 1997 law. With new incentives on the horizon, some states "are starting to build at least the concept, sort of a safety net, just to help people with disabilities find and maintain employment. We see it as a positive thing at this point," Stone says.

If a state exercises the buy-in option, it can also permit those whose disabling conditions are controlled by treatment or medication (the "medically improved") to buy into Medicaid. These are people who are no longer disabled under the government's definition but would be if their treatment were stopped, for lack of insurance coverage or some other reason. This provision could benefit people with disorders such as myasthenia gravis, polymyositis or dermatomyositis, in which medication or other treatments often keep symptoms in check for some time.

Marybeth Waltman of MDA's national Task Force on Public Awareness has high hope that the WIIA will help more people with neuromuscular diseases to find and keep employment.

Medicaid Demonstration Projects

This WIIA provision allocates $250 million in federal grants over the next six years for states to use in setting up programs to help workers with "a potentially severe disability." Under such a program, for instance, someone in the early stages of an adult-onset form of muscular dystrophy or spinal muscular atrophy could continue working and receive Medicaid benefits.

Currently, in order to get federal health insurance, an employed person usually has to stop working, qualify as "disabled" and collect SSDI, then wait an additional two years to receive Medicare.

Allen Jensen of the Center for the Study and Advancement of Disability Policy at George Washington University in Washington says the demonstration projects may be especially helpful to people with neuromuscular diseases. They wouldn't have to choose between working and getting good health coverage.

"It would allow the states to get federal funding for people who are not yet quite eligible but need to have services," he says. "They may be working now but they have a deteriorating condition. And if they can get services under Medicaid they may be able to keep working."

BUT WHAT ABOUT ...?

In addition to health care coverage, the WIIA addresses some other obstacles keeping people with disabilities out of the work force. These include the availability of part-time work, the need for personal assistant services and the challenge of finding a job in the first place. Working Part Time

Sen. James Jeffords, R-Vt, (top), and Rep. Rick Lazio, R-N.Y., introduced the bill that became the Ticket to Work and Work Incentives Improvement Act, passed in late 1999.

Many people with neuromuscular diseases want to work part time because they feel their stamina doesn't permit full-time employment.

Lisa Stapp of Houston does Web page design on a volunteer basis and would like to do so for pay. Ideally, she'd like to work from home part time.

"I don't think my stamina is that good any more. I could probably do it almost full time. But if I push too hard then I'm worse off in the long run," says Stapp, who has SMA. The WIIA will allow part-time workers to buy into Medicaid. It defines employment as at least 40 hours per month at no less than federal minimum wage. Anyone meeting these criteria is covered by the new Medicare provisions. The WIIA doesn't address earned income limits for SSI and SSDI recipients.

Personal Assistant Services

A Work Incentive Outreach provision of the WIIA offers grants to help states develop an infrastructure to support working individuals with disabilities. Stone points out that, "in order to get the infrastructure money, the state does have to provide personal assistance services on or off the job."

Stone thinks the law gives the states good incentives or "carrots" for helping workers with disabilities.

"It gives a state several options on how it might want to implement coverage for the working disabled," he says. "They actually included money that would help the states build the infrastructure that they might need to do this, and this hasn't been available in the past. Basically if the states wanted to do this they had to build it themselves. I think that's an important piece."

Job Placement

Many people who answered Quest's employment survey were frustrated by the lack of help government agencies have offered with finding a job. One respondent wrote that her state's Vocational Rehabilitation De-partment gave "excellent funding for college but didn't help in obtaining a job in the field of study they had funded!"

The WIIA's Ticket to Work and Self-Sufficiency Program will allow people to seek services necessary to find and retain employment from a variety of sources. States can give vouchers allowing clients to go to a variety of public or private job placement programs, not just Voc Rehab.

Elimination of Work Disincentives

Another major provision of the WIIA is the elimination of work disincentives. People with neuromuscular diseases are well acquainted with these disincentives — procedures and regulations that make it difficult to maintain or regain independence. Specifically, the law calls for expedited reinstatement of disability benefits. Those who go to work, then get laid off or must quit, should have an easier and briefer time regaining their federal benefits.

The law also eliminates the "work activity standard as a basis of review." That means the Social Security Administration can't schedule a review of a client's eligibility for benefits just because the client has returned to work. Periodic reviews will still be scheduled.

WILL IT REALLY WORK?

The WIIA seems to offer solutions to several key problems faced by people with disabilities who want to work. Jensen says the impact of the bill could be significant, but he's cautious. "You've got to do it on a state-by-state basis and there's quite a bit of uncertainty as far as what the fiscal impact might be," says Jensen, who consults with state agencies about developing work incentive programs.

He encourages programs that "provide for gradual instead of precipitous changes in the amount and form of public support" people receive as their ability to work and their needs for services and benefits change over time.

People served by MDA are also cautiously optimistic. Stapp hopes the new law can help her meet her needs for medical benefits, personal attendants and transportation so she can work. "That's all a part of it. It's coordinating a whole bunch of factors," Stapp says. As for the new law, "I want to see how it actually works out but watch a few other people take the plunge first. I'm not going to be the first in line but I probably will be one of the people in line," she says.

Betsy Laitinen of Boston agrees that the challenges of working are complicated for someone with a physical disability. Not all obstacles to employment can be removed by legislation.

Laitinen, who has a neuromuscular disease and works for a managed care organization, knows people who "worry that if they get a job they are going to lose it because they're not going to be able to get there every day. It gets deeper than just losing your Medicaid.

"It's a lot of stress — coordinating your PCAs [personal care assistants] and finding PCAs that are willing to come to your office," she says. "I think that any strides that they make to help maintain benefits and support people in the long run are good." It remains to be seen just how each state will respond to the opportunities provided by the WIIA. Stone, for one, has high hopes.

The WIIA gives the states "flexibility on how they actually design the program from the standpoint of building in premiums and cost-share kinds of situations. And that's important to the states not to have a mandate that they've got to do it a certain way," he says. "I think that flexibility will cause states to take a closer look at it and maybe bring more into the fold."

WILL THE WIIA HELP YOU?

How will the provisions of the Work Incentives Improvement Act apply in your individual situation? To find out, follow these steps.

1. Read about the bill. The bill itself can be read at http://thomas.loc.gov. Under "Bill Number," type H.R. 1180. You can also read summaries of the act at www.ssa.gov (Social Security Administration) and at http://www.dol.gov/dol/_sec/public/programs/ptfead/HR1180_Sum.htm (Web site for the Presidential Task Force on Employment of Adults with Disabilities).
2. Find out whether your state already has a Medicaid waiver or Medicaid buy-in program (several are in the works). Check with your state Medicaid office.
3. Call your state's Medicaid office to find out what plans are being made to implement programs under the WIIA. Agency employees may not yet be fully briefed on how the law will work, so keep trying until you find someone knowledgeable.
4. Contact your state or county disability commission, local independent living center or other disability advocacy groups to find out what action is being taken to encourage state participation. Since the bill doesn't go into effect until October, consumers have several months to work with legislators and help their states develop a plan.
5. Work with other individuals and groups to prepare information on how people with disabilities in your state will benefit from WIIA provisions, and get the word to policymakers and legislators. Emphasize that the new incentives will enable more people to become taxpayers.