New Study Highlights Failure of ADA and Need for Stronger Protections for the Autoimmune Community

Why don’t current disability laws work? And what can we do to fix them?

Washington, DC – 10/14/2024 – A groundbreaking study conducted by Rare Patient Voice and the Workers with Autoimmune Ailments Alliance (WAAA) has revealed a critical lack of protections for individuals with autoimmune diseases in the workplace and higher education. 

The study, which surveyed 170 participants with autoimmune diseases, found that a significant majority of respondents faced discrimination, difficulty obtaining accommodations, and even job loss due to their illnesses.

The majority said that current protections failed them due to their reactive nature. Only after the act of discrimination is committed is there any attempt to create a clear standard for what they are entitled to. 

Stats from RPV study conducted in the summer of 2024. Majority of autoimmune people report discrimination is common — and current protections don’t work.

Currently, any accommodation requests have to be vetted by the EEOC through a long and cumbersome process to determine if an accommodation is reasonable. Without clear standards already in place, this makes it easy for companies -- and their lawyers -- to muddy the water regarding whether an accommodation is reasonable. 

Even something as simple as a request to work from home due to a nerve condition can be dragged through court for years. This means that most people suffering from these illnesses have essentially no way of protecting themselves

Proponents of the ADA argue its very existence deters discrimination. But most autoimmune workers and students say their accommodation requests are denied, forcing them to endure trials that can last for years.

As a result, unemployment among those with disabilities is higher now than it was before the ADA

The study's findings underscore the need for stronger legislation and enforcement to protect the rights of individuals with invisible illnesses, particularly those with autoimmune diseases. Key findings from the survey include:

• Discrimination and Lack of Accommodations: 60.6% of respondents reported experiencing discrimination due to their disability, and 57.6% stated that the Americans with Disabilities Act (ADA) did not adequately protect them in the workplace or school.

• Barriers in Higher Education: 54.4% of college attendees who requested accommodations reported being unable to obtain the necessary support, and 35.3% indicated that they dropped out of college, most of whom stated that lack of accommodations was the main culprit in their departure.

• Workplace Challenges: 38.2% of respondents said they were fired from their jobs due to their disability, and 51.7% reported that their accommodation requests were denied.

A significant number of autoimmune students drop out of college.

And most do so not because they are too sick — but because their colleges refuse to help them.

Barriers in education are especially disturbing because they make it nigh impossible for someone to advance later on in life. The vast majority of these students who are forced to drop out do so because they do not get their accommodation requests approved.

These requests are far from unreasonable. Many students, for example, asked to learn remotely the same way all students were allowed to do during the pandemic. Unfortunately, when the lives of “normal” people are unaffected, it is suddenly “unrealistic” to expect remote learning to be available.

Proponents of the ADA say it is an automatic deterrent to discrimination in education or the workplace. After all, who wants to get sued?

But new research shows it does not do this for the millions of autoimmune people suffering.

Emmanuel, President of the Workers with Autoimmune Ailments Alliance, emphasized the urgent need for change, stating, "This study proves what we already know and which the disability establishment refuses to recognize: the vast majority of people with autoimmune diseases are being failed by the Americans with Disabilities Act."

"Nobody deserves to lose their job or education because of an illness," Emmanuel continued. "Reactive accommodation laws like the ADA rely on workers suing their own companies.”

Since the introduction of the Americans with Disabilities Act of 1990, little has changed in the workplace for those with invisible illnesses like autoimmune diseases.

That is why the WAAA has a bill in Maryland called the Employee Autoimmune Disorder Protection Act (HB1084) which, in part, would streamline the process of asking for an accommodation and, more importantly, increasing the pace of enforcement. Proponents hope this bill could make it much easier for people with chronic illnesses to get the accommodations they need without having it contested by their company.

“Waiting until someone gets fired to figure out what accommodations they are entitled to doesn't make sense. We need to create a clearly defined list of rights and accommodations for these individuals. That’s why we are advocating for the Autoimmune Protection Act, which does exactly that".

Rare Patient Voice, a patient advocacy organization, has been instrumental in providing a platform for individuals with rare and non-rare diseases to share their experiences and advocate for their needs.

The Workers with Autoimmune Ailments Alliance is a Washington, D.C.-based non-profit dedicated to safeguarding the rights of students and employees suffering from autoimmune illnesses. This includes the right to work from home and wear protective equipment, which is essential for managing symptoms and preventing infections.