Tabitha Haly’s Long Road Back to Work: Why Social Security Representation and Work Incentives Matter

By Jennifer Cronenberg and Tabitha Haly

If you aren’t yet familiar with Tabitha Haly’s notable story, I encourage you to read Joseph Shapiro’s October 2024 NPR piece about her. It details her remarkable trajectory to become a VP at JPMorganChase and how, for several terrifying months this past year, all that she had accomplished was at risk due to overly complicated and frequently misunderstood Social Security work-support programs.

Despite having been born with a type of spinal muscular atrophy that necessitates 24-hour assistance, Tabi was able to attend college and work her way up within the financial industry because of her dedication, drive, and a little-known portion of the Social Security Act that provides continued Medicaid eligibility in certain circumstances.

Let me begin by saying that Tabi is an amazing advocate, not only for herself, but for others who are trying to work with disabilities. She has lobbied for improvements in her workplaces and has succeeded in raising awareness about the importance of creating space for those with disabilities. Tabi is kind and smart and funny and incredibly talented. She is well-spoken about her needs, and she never misses details. That’s why the sudden termination of her continued Medicaid eligibility came as such a shock. Tabi is not someone who would have missed a notice or who would have failed to report necessary details to the agency. In fact, for nearly 20 years, as required, Tabi dutifully reported all of her earnings to the agency, she routinely recertified her disability, she kept her bank account below $2000, and she refrained from acquiring assets (such as her employer-offered 401K).

Nevertheless, in the summer of 2024, despite changing nothing, Tabi’s Medicaid benefits were abruptly halted by the agency, sending her life into turmoil and ultimately forcing her to resign from her position at JPMorganChase so that she could qualify for $0-income state Medicaid benefits. While awaiting answers from Social Security, she enlisted the help of her elected officials, the press, and multiple other advocates to help restore her work-enabling lifeline. The trouble was, the portion of the Social Security Act that had enabled Tabi to work, Section 1619b, is not widely known nor is it well understood. Before I dive deeper into the wonky legal details, Tabi is going to tell her story as only she can.

I have spinal muscular atrophy, a type of muscular dystrophy affecting the strength in my muscles, causing severe scoliosis and rapid deterioration of my limb flexibility and movement. I was born and raised in Houston, Texas where both of my parents worked full-time while taking care of me during some of the toughest years of my life health-wise. Due to my degenerative condition, I was in and out of the hospital multiple times a year for pneumonia or surgery. Figuring out how to best prevent me from being sick while dealing with the challenges of my disability was an extensive learning process. My parents excelled at rolling with the punches and always tried everything to allow me to live a normal life where I’m not stuck at home all the time. From my dad, I inherited the gift of music and logical thinking that would pave the way for my career. My mom exposed me to different genres of music taught me how to advocate for myself through her own zealous advocacy for me. There was always something to “fight” for during my childhood—things like not getting left behind in my education just because I was often in the hospital, or ensuring I always had companions with me so that I didn’t get stuck somewhere like an elevator. Through her actions, my mom inspired me not to feel sorry for myself, not to succumb to unnecessary medical recommendations (like a tracheotomy), not to quickly agree when people say I cannot do something, and not to feel like I don’t belong alongside non-disabled people.

I could never hold my body up, I could never crawl, and I could never walk. At age 18, you are considered independent in this country because you are legally an adult. For me, 18 is the age we knew I would become qualified for full-time aides. All I had to do to obtain home health aide services was apply for SSI and, through that, receive Medicaid. It was bittersweet for me because I was used to asking my close family and friends for help, but now I had to become accustomed to voicing my needs to strangers. The good part was that having aides opened doors for me to go to college and pursue my dreams of becoming a successful, independent, and helpful person. My worries of how to accomplish anything after high school diminished and I was excited!

All of the strife I endured through childhood made me want to excel in college so that all of the scholarships and grants I received would be worth it. I worked hard so that I could one day give back to my family who helped me, and so that I could continue fulfilling dreams of sharing my talents. I ended up making a difference for disabled students at the university I attended, starting to write songs, and graduating as a computer science major summa cum laude. The next challenge was setting up my life after college. I made sure I did everything in my power to prove my enthusiasm to have a career by seizing every opportunity, such as joining the student government association and partaking in technical internships that would help boost my entry level resume. I applied for jobs and went on many interviews to prove my qualifications, but worried if I would even get a job considering my disability. Would they see past the fact that I am physically weak and always accompanied by a home health aide?  And if I got a job offer, could I even accept it since the starting salary exceeds SSI Asset limits?

Knowing I cannot lose my home health aides, I started researching my options for keeping my SSI Medicaid while working. I came across SSI provision 1619b, which felt like a glowing moment of hope. SSA’s 1619b online page still looks the same as it did back in 2006, and it’s even still titled the same: Continued Medicaid Eligibility. Under 1619b, I fall under the category of having an individual threshold calculation because I have a permanent disability that introduces some impairment work related expenses, I have publicly funded personal attendants, and I have medical expenses beyond the average state funded amount. This SSI provision allowed me to accept my first job offer to be a programmer in 2006.

I vividly recall the SSI appointment with SSA representative Ms. Fox in Poughkeepsie, New York. I was so proud to tell her that I wanted to work and to ask if she could please help me get on 1619b. While Ms. Fox had never heard of 1619b, I will never forget how open and encouraging she was as she agreed to research the rules and help me get to work. Once I was officially on 1619b, Ms. Fox thoroughly explained that the overall rules of SSI must still be adhered to by me in order to keep 1619b. These rules include but are not limited to: 1) I cannot exceed $2,000 in assets, 2) I cannot have a savings account, 3) I cannot have any investment accounts including 401K, and 4) I may only own one property – that I must live in – and only one vehicle. Back then I was just so thankful that everything I read about 1619b was real and coming true for me, that I did not even feel let down by the rules. I wanted to work, I wanted to shine at my job, and I wanted to move on to my next challenge of living and working independently.

I accepted the nicely competitive job offer to work as an application programmer at New York Life Insurance. In my 10 years there, I climbed to become a senior associate, handling complex coding and leading other developers on my team. I was the youngest individual to ever win the corporate technology customer service award, and I also founded the first ever disability-focused employee resource group there. After NYL, I started work at JPMorgan Chase, which was another dream come true for me because I had always wanted to work where technology departments are valued as much as finance. The timing of the transition was beneficial because my physical abilities were further deteriorating and JPMorgan’s assistive technology department was able to help me continue my career as a VP software engineer, so that my setbacks were unbeknownst to anyone working with me at the firm. Projects I worked on were recognized in Hackathon events and I contributed to diversity initiatives by speaking at the United Nations. I also wrote an original song titled “Hello World,” put together a band, and released two studio albums. I volunteered for disability-focused organizations such as MDA, NAC, UCP, and Learning Ally.

SSA’s 1619b provision supported me consistently and continuously so that I could perform meaningful work. I lived within the strict 1619b rules, dutifully reporting all of my earnings to SSA and staying below the $2000 per month asset limit. While I was unable to establish a savings account or contribute to a 401K like my peers, I appreciated all I was able to accomplish without any negative healthcare repercussions. Then, in 2024, everything suddenly changed.

On June 1, 2024, I started receiving concerning phone calls from the medical facilities who give me care—physical therapy, the pharmacy that delivers my medication for spinal muscular atrophy, and my rehab who repairs my specialized wheelchair. I was very scared and worried because a disruption in services had never occurred before and nothing had changed. When I went to my local Social Security Administration office, the office was very different from what I remembered during my last recertification a few years before. There was now only an express office, and the SSA agent did not know anything about 1619b. When I emotionally conveyed my loss of services, she was focused on the Medicaid aspect and kept directing me to go to the Medicaid office. But I knew that my 1619b status needed confirmation or investigation because my Medicaid qualification is under the SSI umbrella, not under state Medicaid directly. If I even attempted to talk to the state Medicaid office, I knew they would not help me once they heard that I work and make a substantial income. I suddenly felt like I was 22 years old again, just fresh out of college begging people to understand that I can work despite my disability as long as I have my home health aides.

Throughout that month of June, I was reaching out to contacts I have in the Mayor’s office for people with disabilities, the office of disability inclusion at JPMorgan, and various disability advocacy organizations in New York City to help me reach a contact at SSA who would actually know what 1619b is, help investigate my case, and help resolve the unknown issue I was having that was causing my services to be dropped. My personal SSI advocacy quickly jumped from 0 to 100% because I was terrified that the next phone would be from my home health care agency stating that I could not have my aides anymore. By mid-July, a phone appointment with an SSA representative finally took place and the representative informed me that my 1619b was dropped in 2021. How could this be? In a panic I started going over all of the 1619b provisions in my head. Did my employer inadvertently contribute pension credits to a 401(k) in my name? Did my income increase beyond my medical expense calculation ratio? What happened to cause all of this? And how could I fix it if I didn’t even know the issue? The SSA representative did not want to talk about 1619b at all—after I waited 6 weeks for a telephone appointment—he even threatened to hang up if I didn’t follow his suggestion to reapply for SSI and apply for SSDI. But I was still working, so I knew that a new claim would be quickly denied.

I felt all of my accomplishments that I worked so hard for suddenly slipping away. Infuriatingly, I could not even pinpoint the fault because the people at the front lines of SSA were not helpful. As tends to happen with my condition, the emotional stress worsened my physical symptoms, and I was forced to take short-term leave from work. I used that time to regain my strength (after a few emergency room visits), and I started looking for an attorney.

Meeting with attorneys was daunting because those most familiar with SSI are often nonprofit or legal aid organizations who are limited by rules governing income levels—once they heard my income amount, they would inform me that they were unable to help. With private attorneys, I found that most were unfamiliar with 1619b—some even expressed doubt that I should be receiving any benefits if I was able to work. The cumulative amount of negativity I heard when I shared my story was enough to make me feel as if I was committing a fraudulent crime just for seeking help.

While searching for an attorney, I convinced the state of New York to place my Medicaid in provisional status while they processed my paperwork, which included my income and bank account statements, but I knew that ultimately this would fail since my income level exceeded the state Medicaid requirements. Meanwhile I started to appeal my 1619b by myself (with good cause for late filing since I had never received the aforementioned 2021 termination notice)—only for it to be denied. The whole of my life was starting to crumble, and the final straw for my energy and patience was when Medicaid sent another letter in October 2024 threatening to cut my services. I realized, without the guarantees of SSA’s 1619b in place, I would have to resign from my job in order to secure ongoing state Medicaid benefits. With great sadness and disappointment, I tendered my resignation to J.P. Morgan.

After nearing fifty separate paths of contacts trying to find an attorney for me, David Camp from National Organization of Social Security Claimants’ Representatives (NOSSCR) reached out to me by recommendation of the Senate Finance Committee, who was recommended to me by Joe Shapiro of NPR, after he featured me in a segment of All Things Considered, at the bequest of my employer, JPMorgan. David Camp understood that I cannot be without my services and that I have the right to work. David acknowledged that I definitely need representation—he explained that because 1619b is a niche provision, it would require someone passionate about my case who has the capacity to do extensive research. He recommended NOSSCR’s Jennifer Cronenberg.

In my position with the National Organization of Social Security Claimants’ Representatives (NOSSCR), I research and advise on novel legal issues for our members. While Section 1619b was never my specialty, NOSSCR afforded me the opportunity to comprehensively research the regulation and Tabi’s case. Like many of Social Security’s programs, the details surrounding “Continued Medicaid Eligibility” or “1619b benefits” are exceedingly complicated, but I’ll try to be succinct. In short, a person must 1) have been eligible for an SSI cash payment for at least 1 month; 2) still meet the disability requirement; 3) still meet all other non-disability SSI requirements; 4) need Medicaid benefits to continue to work; and 5) have gross earnings that are insufficient to replace SSI, Medicaid and publicly funded attendant care services.

On its face, Tabi seemed to be the poster child for these benefits, meeting all of these qualifications with ease. But Tabi’s case was unique because her six-figure salary is far higher than is typical for working Medicaid recipients. Perhaps this is ultimately what trigged a red flag with SSA—we still don’t know. But the bottom line is, she still qualifies for 1619b benefits because she is following all of the rules and her medical needs far outpace her income (last year her annual medical expenses soared to $1.5 million).

If you find yourself asking, well, she’s working and earning good money, why doesn’t she just support herself with private insurance? The answer is, she cannot. It is not possible. There is no private insurance company that provides the type of coverage Tabi needs: 24-hour care for pre-existing conditions, specialized equipment, regular procedures, specific medications, etc. She would be bankrupt within a few months. Even Medicare, typically considered to be more comprehensive than Medicaid, cannot provide for the level of care Tabi needs (because it does not provide coverage for 24-hour aides). Medicaid is the only program that offers her the life-sustaining support required.

Maybe you’re thinking that SSI and Medicaid benefits weren’t meant for someone with such a high earning potential—perhaps that’s what SSA thought as well. To that I say, consider the alternative. If she did not work, the law stipulates that Medicaid would have to provide her with the same coverage she received while working and she would be eligible for monthly SSI cash benefits and she would not be paying taxes into Social Security. Regardless of how much she earns, if Tabi isn’t working, it’s a net loss for SSA (not to mention for society at large).

As my colleagues will understand, there are so many things that can be infuriating about this line of work—and many of our common frustrations happened in this case. Here’s a sampling:

• It was exceedingly difficult to get SSA on the phone. I called relentlessly. Even after waiting on hold for extended periods of time, the line often disconnected before I reached a representative (often with the infuriating canned message that “all reps are busy and I should try back later”).
• Even when I did get through to a representative, SSA’s frontline staff are overworked, under-supported, and have a daunting number of rules and regulations that they are expected to understand. Getting them up to speed about Tabi’s unique case was challenging.
• While I wanted to understand the history in Tabi’s case, I was unable to gain electronic access as this was a “paper” case.
• After I faxed extensive documentation to the agency for her hearing, the exhibit list that I received from the agency contained virtually none of the submitted records, despite my having fax confirmation receipts for all of them.
• Although we had requested an in-person hearing, and were scheduled for one, less than 24-hours before the hearing, the judge switched to a phone hearing (she was ill). After some back and forth, we finally settled on a video hearing as that’s an easier format for Tabi.
• Perhaps most importantly, the timeline and decision-making rationale did not make sense. The agency claimed that her benefits were terminated in 2021 (with a notice that she never received); yet, her benefits did not actually terminate until 2024 (at which point there was no subsequent notice sent). SSA initially said that she was “over-resourced,”
  and while she had ticked above $2000 for a couple of months, she never reached close to 12 months, the point at which her benefits should have terminated. In 2024, after Tabi appealed on her own and received a Reconsideration denial letter, SSA used new and different rationale for why she had been terminated, citing instead to her supplemental-needs trust disbursements.

Ultimately, we were able to prevail. We got lucky and were assigned a kind and compassionate judge who set aside the time in a very busy schedule to read the unprecedented 10-page pre-hearing brief that I submitted. It’s terrifying that qualification for life-changing benefits requires something as chaotic as luck, but even in a practice area that’s filled with experts, I’m afraid it’s true that you need not only extensive knowledge of complicated rules and regulations, but also a bit of luck on your side to prevail.

Here’s Tabi again:

Jennifer and I sat in my purple living room and explained everything to the judge via video. She stated that she applauds me for wanting to work despite my disability. She had never had a case like mine before, so she also commended Jennifer for explaining the case and 1619b very well prior to the hearing.

It took a couple of weeks for SSA to implement the judge’s fully favorable decision. Once SSA gave the green light for me to resume back to work, I informed my employer J.P. Morgan and started the rehire onboarding process. I am very grateful that my employer expeditiously rehired me after resignation. They even held a welcome back meeting for me where I expressed what it feels like to miss out on working and contributing. I recall mentioning to the judge that working is not easy because, like any career, there are pressures. However, I have goals I want to accomplish — work makes me feel really good, it gives me dignity in this world, and makes me feel like I belong.

When I reflect on the past year, I find myself returning to childhood thoughts and fears – worried about having to prove myself to society. I know that there will always be people who choose not to understand what possibilities there are for people like me, disabled and ready and willing to work. But I am proud of all that I have accomplished — I should be able to work for as long as I can.

When the NPR story went live, one person wrote, “She’s a net negative on society fiscally, she should be happy with everything she’s received up to this point.” Do we really live in a society where fiscal contributions are the only ones that matter? My care is expensive, that’s true, but I also believe that my life has far more value than that monetary figure. I contribute meaningfully at work, leading teams and heading crucial projects. I create music. I share love and laughter with my family and friends. And I advocate for others with disabilities. My life has meaning.

I am so pleased that, thanks to Jennifer Cronenberg and NOSSCR, I was able to advocate for my qualification and reinstatement of 1619b. It’s a shame that these benefits aren’t more widely understood—both by advocates and by Social Security. There is so much that people with disabilities have to offer—I hope that changes to the system are made so that those who can work are encouraged, not discouraged, from doing so.

Tabi is right that not enough emphasis is placed on SSA’s “working while disabled” programs. The agency should reward (and not penalize) folks who want to test their ability to work, or who can work but need additional support to do so. These programs do exist, but they are not well understood, and they are underutilized. This must change. The agency should have a dedicated department that oversees all of the work-support programs. The rules are nuanced and complicated and deserve a dedicated and knowledgeable staff. Getting individuals with disabilities into the workforce should be a main goal of the agency—not something to be feared or ignored.

But reform is needed. A $2000 asset limit isn’t reasonable. This limit was set in 1989. It has never been raised. This must change. In many markets, $2000 isn’t even enough for rent—how is someone expected to save money for rent that’s due on the 1^st of the month when SSA checks your account on the last day of the month to see if you’re “over-resourced”? If you’re working, your resource issues are compounded—Tabi’s employer pays her salary on the last day of the month. Because this is the same day that SSA “looks” to see if your bank account is “over-resourced,” if she receives her salary into her checking account (the only one she is allowed to have), then she is immediately over-resourced every month. So someone like Tabi is not able to achieve any financial independence or freedom. Since she cannot receive her salary into her account, it must instead go directly to her supplemental-needs (or “special needs”) trust—a place where she does not have the freedom to spend her own hard-earned money, and where she must rely on the trustee to pay her bills, reducing the freedom and independence for which she has worked so hard. Given the nature of a supplemental-needs trust, at the time of her death, all of the money in the trust will revert to the state, meaning that, despite her hard work, Tabi is unable to leave behind anything of monetary value for those that have cared for her.

There are other programs that individuals who want to test their ability to work but who need additional support because of their conditions—Ticket-to-Work is a free and voluntary program that provides vocational resources and allows individuals to test their ability to work without the threat of benefits termination—Extended Period of Eligibility permits the reinstatement of benefits to a person whose benefits were terminated due to work earnings if that person is not able to sustain work beyond 36 months—Section 301 can provide ongoing benefits to young adults transitioning off of childhood SSI while they engage in vocational rehabilitation or other qualifying education to better prepare for the workforce—and these are just a few examples of the programs that already exist.

These programs deserve more attention. More individuals with disabilities should be able to work without risking the loss of life-saving benefits. Tabi had contacts in the Mayor’s office. She had the world’s largest bank going to bat for her. NPR wrote a story about her. The Senate got involved. And even still, she had to temporarily resign from her job and was just one month away from losing her apartment when the judge’s decision came down. Those working with disabilities aren’t asking for handouts. They are just asking for a chance—a chance to succeed in the working world despite their disabilities. As advocates, we must become well-versed in the programs that already exist so that we can help our clients prepare for the future. As an agency, Social Security must take action to promote and properly utilize these crucial work incentives programs. Tabi is remarkable and it was my privilege to help her get back to work. Here’s Tabi with the final word:

There must be protocols in place to encourage disabled people to work if they say they want to work. It is simply asking the government to reinforce the ideals of life, liberty, and the pursuit of happiness. For me, the alternative to working would be to stay home and collect benefits—not pursue my ambitions, and limit my success. I will not be limited.