Anna Landre is a sophomore at Georgetown University in Washington, D.C. It’s a good school, you’ve probably heard of it. On top of the normal stresses of her college life, like balancing her responsibilities in class, at the school paper, and as Commissioner of Advisory Neighborhood 2E (a D.C.-exclusive division of local government), Landre has spinal muscular atrophy.

Spinal muscular atrophy (or SMA) is a life-changing condition for almost 25,000 Americans – and to many, it’s a defining part of who they are.

About Spinal Muscular Atrophy

Spinal muscular atrophy is a genetically inherited condition characterized by weakening musculature and struggles with voluntary large muscle movement.

Most commonly, the condition is subdivided into four categories numbered one through four. The categories can be generalized as being distinguished by their severity and age of onset. Types one through four are caused by a deficiency of a protein called survival motor neuron (SMN) protein. This protein is essential for the health of motor neurons – nerve cells in the spine that directly link to skeletal muscles.

This deficiency is usually caused by mutation to the gene SMN1, typically located on the fifth chromosomes. Both copies of the SMN1 gene are mutated or missing in individuals with spinal muscular atrophy. However, there is some evidence that extra (more than two) genetic copies of the SMN2 gene might offset some symptoms of the disease.

Anna Landre’s Fight for Her Right to Work

Landre was born with type 2 SMA, an intermediate form of the disease that usually affects the legs more than the arms. Respiratory infections can also be common in this form of SMA, though that depends heavily on the case in question. The severity of type 2 in particular can vary widely between individuals.

Like many people living with spinal muscular atrophy, Landre manages to maintain a balance between her condition and her personal and professional life. Last summer, after her freshman year, Landre secured an internship at a D.C. communications firm. She was excited to spend summer in the capital, likely not far from the Georgetown campus.

However, just a few weeks before her internship began, she was told by the New Jersey Medicaid office that she was ineligible for the position because it would be paid.

Landre had been receiving vital financial assistance from her home state of New Jersey. The money provided was just enough to cover the bulk of basic expenses related to her condition – for a wheelchair, medical care, and an hourly support staff of seven or eight individuals that assist in tasks difficult for people with SMA, like getting dressed in the morning or into bed at night.

The money went to Landre through New Jersey’s medicaid department. When they learned that she would be accepting a two-month internship position paying $14 an hour, they informed her that she would be over the income limit for disabled New Jersey medicaid recipients. If Anna’s internship was year-round, it would still translate to about $30,000 below the United States’ median income – hardly a living wage, especially in an expensive metropolis like D.C.

Anna and her mother, Laura Landre, called the offices for weeks, receiving a different explanation and expectation from almost every person they got in touch with. “It seemed like nobody at the office knew what was going on,” Anna said in a phone interview with Patient Worthy.

Eventually, Landre decided to visit the Medicaid offices in person to demand conclusive answers. There, she met with a woman she had never met before – her Medicaid case manager. In a meeting that was blunt as it was conclusive, the woman confirmed Landre’s sinking suspicions. If she took the job at the D.C. communication firm, she would simply be making too much money for the state to agree to continue funding her vital medical needs. Either she would have to decline the position, or forfeit the aid money.

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Landre left the office cried in the now empty parking lot. When her mom, Laura, arrived shortly after, the two discussed what happened in the car. Laura, in a fit of concern, called out to a woman in a suit walking through the parking lot to her car. Perhaps, she reasoned, this woman had some sway at the Medicaid office.

The woman, as it turned out, was not with the Medicaid office. She was a lawyer who had been meeting a client in another office in the shared building. Landre’s story wasn’t new to the stranger – she had heard similar tales from other families struggling with chronic illnesses. “She said that going to the press was the only way to make them listen.”

Anna went home and almost immediately began cold-emailing reporters at various media outlets. “Within an hour of reaching out, I received a reply from a reporter at the Asbury Park Press,” one of New Jersey’s most circulated newspapers. Jerry Carino had a page column at the paper, and he thought Landre’s story was front page material.

A whirlwind of public scrutiny whipped up in following days and weeks. The story caught wind fast, and it wasn’t long before state politicians were taking Landre’s side too. In truly remarkable time, the New Jersey Medicaid office folded and agreed that they would continue to provide Landre financial assistance when she took up the paid position at her internship.

Changes Remain to be Made

Unfortunately, Landre’s victory seemed to be a passing one. Several months later, local New Jersey politicians followed up with the Department of Health and Human Services. What was meant to be a friendly conference on how to avoid similar situations in the future quickly turned sour.

The Department brought a legal team to the sit-down, and nearly immediately began to backpedal on assurances they had made in response to Landre’s case. Anna, the politicians were told, was a special case – not the new normal. Anyone expecting the rules to be changed would be sadly disappointed.

Landre remembers hearing the news that she was a “special case,” and that others like her couldn’t expect similar treatment. “I’m not an extra hyper-achieving disabled person,” she pointed out. “All disabled people want these things.”

Such difficulties remain widespread throughout much of our country. The experience left Landre disappointed with the securities provided to America’s disabled population. It shapes much of her advocacy as commissioner of advisory neighborhood 2E in DC, where she advocates for better accessibility around the neighborhood and Georgetown campus.

Landre believes that the difficulty many people have navigating the country’s healthcare laws, especially as a result of policies like those in New Jersey, has a profound effect on the positions disabled people are allowed to occupy in our society.

Landre notes that in many cases, it starts with how parents raise their disabled children. “Some parents equate disability to a death sentence,” she mulled in our interview. The atmosphere they foster at home is frequently one of pity, with little understanding of what the child can accomplish.  Landre doesn’t fault parents, however. She believes this is merely a reflection of greater social expectations that breeds policies like the one that very nearly refused her the right to work.

Despite the many accomplishments of disabled individuals in our society, like the famous physicist Stephen Hawking, or great leader of the 21st century Franklin Delano Roosevelt, these individuals are frequently thought of as exceptions rather than a rule. Landre thinks this double-standard is the result of a societal belief that disability is incompatible with success. Rather than an essential part of a person’s identity, disability is still widely treated as a defect.

It’s an enduring social stigma that has many in the community frustrated. To Landre, these policies are a form of identity discrimination. Disabled people are the largest minority in America, Landre has pointed out in the past. “And we would never say that being a minority is incompatible with success.”

In cases of disability discrimination, however, the law still often sides with institutions perpetuating discriminatory practices. Because of her experiences and significant profile in the community, many individuals struggling with similar problems come to Landre for advice. She encourages them to not take no for an answer. “These organizations exist to help people with disabilities,” Landre said. “If a regulation stands in the way of the mission of the organization, it’s a bad regulation.” Though admitting it’s a battle in its own right, Landre echoes the same advice she received from a stranger in an empty parking lot a year ago. “Go to the press, it’s the only way to make some people listen.”

In one of Landre’s articles in the Hoya from earlier this year, she writes about how she has recently come to accept the term “disabled.” “… many difficulties that disabled people face are not inherently caused by their disabled body, but instead by their environment,” she wrote. Landre might not ever climb a set of stairs, but with wheelchair ramps, she can go anywhere anyone can. “It isn’t my disability that limits me, but that those around me have made a decision to construct buildings that don’t accommodate everyone.”

By the current rules of New Jersey’s WorkAbility program, the program through which disabled individuals are meant to be able to receive full medicaid health coverage, individuals earning more than $2,603 a month are ineligible to participate in the program. That’s just $363 more a month above what Landre was making at her internship – meaning if she received just a $2.50 raise, she would again be making too much to be eligible for the program. Though it’s hard to believe that the state of New Jersey will pick that particular fight again any time soon.

What do you think of Anna’s incredible story? Do you believe disabled individuals have an inalienable right to work? Do you think income limits that determine who is eligible to receive critical healthcare assistance are a good idea? Patient Worthy wants to hear from you!