Copyright 2001 by Laura Hershey
Two years ago, I accomplished something that many people with disabilities have been led to believe is impossible: I accepted a job -- a real job, with a paycheck and everything -- and kept my Medicaid coverage.
I lost that job, when the dotcom boom went bust. But I’ve been able to get enough freelance consulting and writing assignments to support myself. And I no longer have to limit myself as I once did. I don’t have to try to keep my income low, in order to keep the Medicaid coverage that is so critical to my independence and health. I can work hard, and accept jobs when offered. I'll no longer have to turn down article assignments, or request artificially low speaking fees, for fear of becoming ineligible for the benefits that pay my attendants.
Of course, there's still that pesky resource limit. The Medicaid rules tell me to spend, not to save -- as if my natural propensity needed any more encouragement! I'm allowed to own one house and one car, and up to $2000 in the bank. And whereas I can't accumulate wealth, I can accumulate debt -- so I use a credit card instead of a savings account.
So I probably won't ever get rich. But at least I won't have to try so hard to stay poor.
How did this happen? you ask. Was this some miracle brought on by the new Ticket to Work and Work Incentive Improvement Act (TWWIIA)? No, my escape from mandatory poverty had nothing to do with TWWIIA. Instead, I used a combination of Social Security work incentive rules that have been around for more than two decades.
Before I explain what I did, though, let me offer a warning. Don't try this at home UNLESS you have all of the following: an independent source of information about work incentive programs, so that you don't have to rely on Social Security staff who will give you the wrong answer nine times out of ten; at least one knowledgeable advocate available to guide you through the process and fight for you; the ability to live on a very low income until you reach your employment goal; the good fortune to live in a state that offers decent services under its Medicaid program; several years' worth of inextinguishable fortitude; and a skin thick enough to take a lot of bureaucratic abuse.
If, after a brutally honest self-assessment, you decide you've got what it takes, then you may be a good candidate for some combination of the work incentive programs that I used: the Plan to Achieve Self-Support (PASS); Impairment-Related Work Expenses (IRWE); and 1619(b), Extended Medicaid Eligibility.
My Eyes on the Prize: Extended Medicaid
I started seriously looking into work incentives in 1990, when I finally listened to the urgent messages my exhausted body was sending me, and decided to leave a demanding full-time-plus administrative job. I qualified for Social Security Disability Income (SSDI), which enabled me to pay the bills. But I knew I still had talent and energy to give, and I wanted to work somehow. I figured there had to be a way for me -- a person with a good educational background, a lot of ideas, and a significant physical disability -- to contribute something to the world, and to earn a decent living in the process.
When I entered the world of work incentives, I knew what I needed in order to be able to work steadily. It was the same thing that I need in order to stay alive and stay out of a nursing home -- namely, Medicaid. I would not be able to maintain any kind of employment without specialized health care, daily attendant services, a power wheelchair in good condition, and respiratory services including oxygen. And unless I became some kind of high-powered corporate consultant, or maybe a best-selling writer, I wouldn't be wealthy enough to pay for these expensive needs. So until one of those scenarios comes to pass, Medicaid would be a key ingredient in whatever occupational success I might achieve.
I was profoundly encouraged when I discovered a work incentive rule that seemed to be designed for someone exactly like me. It's called 1619(b), Extended Medicaid Eligibility. It allows a working disabled person to keep Medicaid, even when earned income would normally disqualify the person from coverage. The basic criteria for this program is that the recipient would be unable to work without the Medicaid coverage, and unable to pay for similar coverage.
Each state has a 1619(b) income threshold -- that is, an annual earnings limit beyond which a person becomes ineligible for Medicaid. However, here’s a little-known but important fact about 1619(b): The income limit can be individually determined for people who have unusually high Medicaid expenses, for services which are necessary to work.
It sounded perfect, but there was a catch: To qualify for 1619(b), I had to be eligible for Medicaid already, for at least one month. I wasn't, because I was receiving too much Social Security Disability Income (SSDI). Fortunately, I knew about the Plan to Achieve Self-Support (PASS). A PASS seemed like a perfect way to establish myself as a self-employed worker, and to establish my Medicaid eligibility.
I would learn later that PASS was one of the best, most poorly-administered, ideas of all time. Congress created PASS in the early 1970's as a way to allow disabled beneficiaries to work toward an employment goal by purchasing needed goods and services, while maintaining eligibility for Supplemental Security Income (SSI) and Medicaid until achieving the goal. But much of the exciting promise of PASS has been squandered by the Social Security Administration's haphazard implementation and its unenthusiastic, sometimes downright hostile attitude toward the program.
Two Failed PASSes
But I didn't know that at the time. The way I figured it, under a PASS I could use my monthly SSDI payment to buy some office equipment I needed. The PASS rules would allow me to receive SSI payments, and to keep my Medicaid coverage while I worked toward my goal of being a successful freelance writer. My friend Tom Emmons had started a business writing PASSes for a reasonable fee; he helped me devise my plan and put it into the proper format. Social Security approved it, and I began my quest for (relative) financial independence.
For three years, I worked diligently, researching and writing articles for publication. I had a few notable successes -- my articles appeared in national magazines like <i>Ms.</i> and <i>The Progressive</i> -- which gave me who a feeling of pride, but not a steady enough income to live on. At that time, PASS had a three-year time limit. When my PASS expired, I had to admit that I was not yet earning enough to forego my cash benefits.
Though I'd had to declare my first PASS a failure, I wasn't yet ready to consider myself a failure. The PASS program permits second chances, but not for the same employment goal. That was fine with me; I'd come up with a new idea. In 1993, I wrote another PASS, this time with the goal of becoming a consultant specializing in disability issues. It turned out to be a more viable field. I started my new consulting career full of drive and optimism. My hard work paid off; I began regularly landing contracts to conduct research, present trainings, organize focus groups, and consult on Americans with Disabilities Act implementation. I thought I was on my way.
But then, the Social Security Administration poisoned the waters. In early 1995, after pursuing my plan for 18 months -- the limit for an initial PASS period -- I submitted a routine request for renewal for another 18 months. I fully expected my request to be granted, since I was on track with the plan I originally laid out. Instead, I received no response at all from SSA -- no approval, no denial, nothing. I had stupidly ignored an SSI termination notice, believing it would be revoked as soon as my PASS renewal was granted. (Another warning: Never EVER leave an adverse SSA notice unanswered, even if -- especially if -- you think it's a mistake.) Because I neglected to appeal, my SSI stopped, leaving me without an important source of income. I survived on what I could earn and borrow. Thanks to some deity or other, and a fortunate lack of interagency communication, Colorado Medicaid initially didn't learn of my SSI termination, and kept paying the bills for my attendant services and oxygen.
I spent months pestering Social Security, begging for an answer. The staff person who had received my renewal application vanished -- transferred to some distant SSA office -- and it took me weeks to find out who my new technician was. When I finally located her, she proved to be an expert stonewaller, with a flair for the occasional snide remark. She rarely returned my phone calls, so I contacted everyone else I could think of -- the local office supervisor, SSA district managers, various advocates, even my congressional representatives. When my technician finally responded, she indicated that my request for renewal was being denied, because I was "already self-supporting" -- yet she refused to explain the basis for this decision! In several letters and conversations, I pointed out that I still had business debts to pay off; and that I was not yet earning enough to pay my own living expenses. Still she refused either to reverse, or to rationalize, her decision. Without knowing exactly why my plan was being rejected, neither my advocate nor I could figure out how to appeal. What kind of information would help convince SSA that I was not anywhere close to being self-supporting? She wouldn't tell me.
I scheduled several redetermination conferences with this technician and her supervisor. Each time, she promised she would give me a written explanation for denial, so that I could prepare a response. Each time, she failed to come through with the explanation, and I felt I had no choice but to refuse to go through with the redetermination meeting. It felt like a recurring nightmare.
This situation dragged on and on for over a year, consuming much of my time and most of my mental energy. I obssessed over the unfairness of it all. I was frustrated and depressed and angry. Developing my consulting business necessarily took a back seat to getting my PASS back on track.
Then, in June of 1996, I happened to be invited to an employment conference in Washington, D.C., where Deputy SSA Commissioner Susan Daniels delivered a banquet speech. In desperation, I literally cornered Daniels after dinner. I told her my whole sad story, full of gory details that I'm omitting here, and pleaded for her intervention. She put me in touch with one of her assistants, who provided another contact at SSA's central office in Baltimore. That person worked with me over the next several weeks, by phone and fax, to identify pieces of information that would support my renewal request. At one point, I had to fax over 40 pages of receipts to him, long-distance, at my own expense. But it was still better than working with my local technician, whom I had come to loathe for her attitude toward me, which alternated between indifference and hostility.
Meanwhile, Medicaid had finally been notified of my SSI termination. I received notice that I would no longer be covered. Having learned my lesson, I appealed that decision immediately. A hearing was scheduled with an administrative law judge (ALJ). I knew I had no case: Loss of my SSI meant automatic termination of Medicaid. So I got the hearing postponed several times because I was "sick," while I frantically continued trying to get Social Security to approve my PASS renewal, and thus reinstate my SSI eligibility.
At last, my PASS renewal was granted in August, 1996, a full 15 months after I requested it. I got my retroactive SSI payments, and saved my Medicaid eligibility just in the nick of time. I now had only about three more months to reach a successful outcome to my PASS before the second 18-month time limit expired.
I felt I was behind schedule on my employment goals, having spent so much time jumping through SSA's elusive, ever-shifting hoops. Nevertheless, I was determined to make PASS work for me this time. I got busy on a couple of consulting contracts I had landed. I worked harder than ever, and by the end of 1996, I had paid off my debts and was earning enough -- just barely -- to cover my living expenses. So I wrote a letter to my local SSA office, explaining that my PASS had reached a successful conclusion, and that my cash benefits could now be terminated.
To my shocked astonishment, SSA refused. They insisted that I was not capable of performing SGA -- that's bureaucratese for "substantial gainful activity," otherwise known as work;. By its own operational guidelines, SSA can define substantial gainful activity in several different ways. You are doing SGA if you are earning $780 a month (back then it was $500 a month). You can also be found to be doing SGA if you work more than 40 hours per month, or about ten hours a week.
I was earning $500 or more during some months, but not all. However, by the other measure, I was clearly over SGA levels of work activity. Marketing my consulting services, doing research, preparing materials, and other tasks related to my consulting business took at least 60 to 80 hours a month. I pointed this out in a series of increasingly desperate faxes -- to no avail. I was, in effect, declared a failure by SSA although, a year and a half earlier, when I'd had lower income and unpaid debts, I was deemed "already self-supporting." The irony of the situation would have been funny, if it didn't have such potentially devastating consequences.
The end of my PASS meant the end of my Medicaid eligibility. A successful conclusion would have allowed me to transition to extended Medicaid eligibility under 1619(b). Now that was impossible, since my SSA-defined “failure” meant that I would continue receiving SSDI, which disqualified me for 1619(b). Instead, I would have to get my attendant services through a Colorado Medicaid waiver program called Home and Community-Based Services (HCBS). The eligibility rules for HCBS would strictly limit my income. Instead of launching a real career, I was now in the absurd position of telling editors and clients that I could accept assignments only on condition that they not pay me too much. Every month I would be forced to bank an SSDI payment, instead of a decent paycheck.
My New (Unpaid) Career: SSA Agitator
Discouraged and angry, I made a decision. Since SSA gave me no choice but to work for free, then the work I chose would be to try to make SSA as miserable as they made me.
I started asking around, and I found a lot of people whose PASSes had been denied, derailed, or destroyed. Some of these people were bankrupt, having defaulted on loans when previously-approved PASSes were suddenly, arbitrarily declared inappropriate or out of compliance. Some were sick, some hospitalized, weakened by the stress of playing by the rules and getting screwed anyway. Some were just too discouraged to care anymore.
But some were angry. These people agreed to join me in making our displeasure known to SSA.
In early 1997, the Ticket to Work was just a twinkle in the eyes of a few policy wonks. This scheme, which was eventually incorporated into TWWIIA, was a pet concept of some at SSA back then. In March, SSA scheduled a panel presentation at the main branch of the Denver Public Library. They said they wanted to get input from the public about their plans to increase return-to-work opportunities for people with disabilities.
When I and my disgruntled colleagues heard about this, we decided we had some input to offer on that subject. About a dozen of us showed up and, without such niceties as signing up and waiting our turn, we interrupted the carefully-scripted presentation. Armed with posters saying things like "Social Security Denies My Rights and Keeps Me Poor" and "SSA Bureaucrats Have Jobs Because I Don't," we moved to the front of the room. Along the way we chanted:
"One, two, three --
real work will set us free!
Four, five, six --
PASS plans should not be nixed!"
We took the microphone, and began telling our stories. We scorned the proposed Ticket to Work: Given SSA's terrible mishandling of PASS, why should we trust the agency to implement a new work incentive scheme?
Several panelists got furious, and left the room, refusing to hear us out. Others listened in resignation. The audience of providers and consumers had similarly mixed reactions.
Our action resulted in a small amount of local media, and an energized band of new activists ready to take on SSA. Over the next two years, we carried out six more mini-protests in Denver. At the same time, an equally determined group was holding actions in the Cincinnati area, under the leadership of benefits advocate Debbie Dase.
All this grass-roots activism seemed to baffle the folks at SSA, both locally and at the central office in Baltimore. They offered plenty of lip service, and seemed to think this would satisfy us. But we kept showing up, sometimes only four or five at a time, sometimes more. We didn't do anything fancy -- no chaining ourselves to doors, no chanting except for that first time at the library. We mostly just sat in the reception areas of local Social Security offices, until staff there became nervous and annoyed enough to get Baltimore on the phone.
Some things began to change, at least superficially. A few SSA staff received some training in how to approve and monitor PASSes. Some new policies were announced. (The feds called them "clarifications" -- as if they'd been doing right all along, and we had just misunderstood.) Most of our key demands -- for systematic ways to hold SSA employees and policymakers accountable, and to guarantee the rights of all work incentive participants -- were ignored.
For me personally, however, there turned out to be some unexpected rewards to all this rabble-rousing -- besides just the satisfaction of getting on the nerves of SSA bureaucrats. For one thing, to my shock and my mother's delight, I won a presidential award for advocacy. (My favorite moment at the White House was when a manager from the Baltimore office came up to me and said, "So this is what you get for beating up on Social Security for three years?!")
Even more beneficial, in terms of my future prospects, I developed a distinct profile within SSA administrative circles. I became known as someone who was unafraid to expose specific examples of incompetence and abuse, and who could turn out a crowd of protesters when necessary. This reputation would serve me well when, despite warnings from friends who knew what I'd been through before, I decided to take one more stab at PASS.
Third PASS A Charm
In early 2000 Sam Maddox, the editor of CanDo.com, offered me the job of Advocacy Editor. It would be a half-time position that I could do from anywhere. I liked the idea, but initially I declined. I knew the salary would disqualify me for the state waiver program which provided my attendant care and other support services.
Sam persisted. Wasn't there some way to work it out? So I began thinking hard about another PASS, as a route to my long-held objective -- a decent job, with extended Medicaid eligibility under 1619(b).
I asked Debbie Dase to help me. She's written hundreds of PASSes, and advocated for fair treatment for all her clients. Together, we strategized. I would develop a one-month PASS plan, to establish my SSI eligibility and to obtain the kind of high-end voice-activated computer I would need for this job. The following month, my PASS successfully completed, I would start working for CanDo. I would stop receiving monthly payments from both SSDI and SSI. Because of my higher income, I would no longer be eligible for the state attendant services waiver program. But under 1619(b), I would be covered by Medicaid indefinitely, and that would provide the attendant services I need.
I was still a little gun-shy, however. I especially recoiled from the idea of working with Denver-area SSA staff, some of whom were responsible for my past disasters. Instead, I submitted my proposed plan to the St. Paul, Minn., PASS office. But SSA squelched that tactic. The St. Paul office sent my plan directly to the Colorado office, without even looking at it. As I feared, it ended up in the hands of a longtime SSA employee, who had been one of the biggest obstacles to my previous PASS.
I needn't have worried. By this time, regional SSA officials were well aware of me, and my propensity for making trouble when I got screwed. Mine was probably the most closely-watched PASS proposal of all time.
Which is not to say it was completely trouble-free. It did get approved quickly, and when it came time to account for how I had spent the money, I was judged to be in compliance. The problems started just after that.
I kept receiving my SSDI check, even after reporting my income, and having successfully completed the PASS. I knew enough to keep careful track of what I knew to be overpayments. When Social Security finally discovered its error, I would be ready to repay in full.
But I wasn't ready for the notice I eventually received. One paragraph said my checks should have stopped in February. Another paragraph said my checks should have stopped in March. Elsewhere, the letter said my checks should have stopped in April.
Depending on which paragraph I believed, I owed back either one, two, or three months' worth of SSDI payments. The letter, however, went on to say that I owed over $7000! No explanation was provided for this outlandish figure.
I was confused. I faxed the letter to my regional SSA office, where a deputy commissioner called me back and admitted that he was confused too. He contacted the right people and, within a few days, I received a corrected notice. It showed the right overpayment amount. I sent in my repayment.
One last obstacle remained. I knew that my state’s 1619(b) income threshold was pretty low. Having to stay within that limit wouldn’t be much better than staying under the limit imposed by my attendant services waiver. But I also knew -- from talking with knowledgeable advocates and from reading SSA’s own publications -- that an individual with exceptionally high Medicaid usage could get an individually-determined income limit, reflecting the additional expenses he or she would have to cover if Medicaid eligibility were lost. That was certainly my situation. Attendant care alone would probably cost me around $60,000 a year if I had to pay for it myself.
My remaining hurdle was finding someone at Social Security who could tell me how to get my very own personalized income limit. I was finally referred to a very helpful SSA employee (apparently they do exist!) who eventually came up with a formula: My income limit would be calculated by adding the standard state threshold, plus my impairment-related work expenses (IRWE’s), plus the amount that Medicaid spent on my services during the previous year.
It took another detective effort to track down someone who could give me that Medicaid cost figure. Once I located the right person, she faxed to me an itemized accounting of all the services Medicaid provided me during 1999. As I’d suspected, the tally was rather high.
Armed with that data, I called back my Social Security contact, ready to calculate. She took all the figures and came up with an amount that would be my upper annual income limit. We seemed to agree on both the process and the outcome -- especially the outcome. My earnings limit represented the kind of freedom I’d been aiming for all along. How much was it? Let’s just say that if I really earn that much during any year in this decade, I’ll be very happy.
My elation collapsed when, an hour later, the same SSA representative called me back. Unfortunately, she said, she had discovered a rule which seemed to say that my Medicaid attendant service costs should have been excluded from our calculation.
What?; I was aghast. I thought the whole point of 1619(b), and of the individually-figured income limit, was to acknowledge that an employed disabled person would not be able to pay high, ongoing expenses such as attendant care. What sense could it make to disregard the very costs that made me eligible for 1619(b) in the first place?
“Well, yes, I agree,” she said, sounding genuinely sympathetic. Nevertheless, there was this rule. She was therefore subtracting all the attendant care costs from my income threshold, to come up with a much lower figure -- an amount that made me doubt whether working at all was worth the effort.
I had been working toward 1619(b) eligibility for seven years, through three PASS plans. I thought I understood work incentive programs pretty well. Could I really have missed something as important as this rule? Doubting my own knowledge, I called an advocate I know who has extensive expertise in Social Security work incentives. I related what I’d been told. “That’s bullshit,” he said. But he was on his way out of town, and would have no time to work with me on it.
While I was worrying and wondering where to turn, my SSA contact called again -- a week after our last conversation. She had discussed that troubling rule with various coworkers, she said, and had come to the conclusion that her interpretation of it had been wrong. The original income limit we’d calculated was correct. She added that she was sorry for the misunderstanding, but that in her ten years of working on work incentives, this was the first time she had figured an individualized earnings threshold.
I deeply appreciated this woman’s honesty and her sympathy -- both of which I’d found to be in short supply at SSA. But I was astonished that she had never dealt with this kind of situation before. I know there are many people with disabilities who turn down good jobs -- or who simply don’t pursue employment goals -- for fear of losing Medicaid.
There are already programs in place which allow people to pursue opportunity without penalty. Yet few potential users know about them, and the agency responsible for implementing them doesn’t know how. What a waste!
I hope that my experiences with PASS and 1619(b), while unique and bizarre in their particulars, may give readers some idea of what’s possible using work incentive rules -- the potential payoffs, as well as the pitfalls.