In 2019, newly elected Rep. Jennifer Wexton held her initial constituent meeting with the members of Little Lobbyists, a national advocacy organization for children with complex medical needs. Mothers brought their children and talked about the impact of federal policies in their lives. 

Last Friday, the same group returned to attend Wexton’s final constituent gathering. 

The hour-long meeting was at once emotional and substantive. In addition to thanking Wexton for her service to the disability community, parents discussed the issues they were most concerned about as a new Congress and a second Trump administration take office in January. The parents shed tears and so did Wexton, who was diagnosed last year with progressive supranuclear palsy, or PSP, a rare neurodegenerative condition that has impacted many aspects of her life, including her ability to speak. 

“It was a fitting full circle moment, as they were my very first meeting. The issues that they advocate for have been what I’ve worked most closely on in Congress, especially since my PSP diagnosis, and I’ve been so pleased to have them as a partner over the past six years fighting to make health care more affordable and protect disability rights. It’s also great to see how their kids have grown.” Wexton told The 19th in an exclusive interview. 

Wexton, a Democrat representing Virginia’s 10th district, served two terms in office. Last year, she announced she would not be seeking reelection due to her diagnosis. 

She adapted to serve out the rest of her term, using a walker to get around the hill; the condition causes rapid loss of balance, movement, speech and more. Earlier this year, she made history by being the first member of Congress to use a text-to-speech device to deliver comments on the House floor. More recently, she started using an AI recreation of her voice, assembled from audio recordings of speeches and interviews she has given over the years. She used the same voice to deliver her remarks at the meeting. 

“Just because my voice now comes from this AI recreation does not make it any less mine or anything I say less important,” she said. “My hope is that going forward, we can make using these kinds of assistive devices the rule, not the exception, and I hope it helps demonstrate that a disability is no reason you can’t be or do anything you set out to, even serve in Congress.” 

Wexton supported disability issues before she developed her disability. Elena Hung, executive director of Little Lobbyists, noted how remarkable that is. 

“The way it usually happens is, it hits the elected member personally. Either they receive a diagnosis or a family member of theirs receives a diagnosis. That wasn’t the case with the congresswoman. I feel like she cared about it before it hit her personally,” Hung told The 19th.

A group of parents founded Little Lobbyists in 2017 in response to Republican efforts to repeal and replace the Affordable Care Act and cut Medicaid — moves that could have rendered their medically complex children uninsured and without treatments necessary for their survival. 

Over the course of last week’s meeting, constituents shared their biggest concerns: Would the Trump administration try to overturn the Affordable Care Act again? Would proposed changes to the Department of Education impact disabled students, who rely on federal enforcement to receive fair, appropriate education? What would happen to laws protecting civil rights for disabled people? How would Robert F. Kennedy Jr., President-elect Donald Trump’s nomination for Secretary of Health and Human Services, impact their children’s health?

A staff member reassured attendees that while Wexton would no longer be in office, the House Democrats would still fight for families of disabled children.

“I’m fairly certain none of the House Democrats are going to let this go quietly into the night,” she said. 

During the meeting, multiple parents described difficulty accessing ADHD medication for themselves and their children due to an ongoing shortage and restrictions on production from the Drug Enforcement Agency. One of them was Val Watkins, an attorney, volunteer with Little Lobbyists and mother to Aire, 13, who is autistic and has an ADHD and anxiety diagnoses. 

“On one hand I read about the floods of Adderall in the streets of Miami during spring break, and on the other hand, my son can’t get the medication he needs,” Watkins said. 

Watkins and Aire live in Wexton’s district and have worked extensively with her office. They both attended Wexton’s first constituent meeting in 2019, in a basement conference room in a Congressional office building. At the meeting last week, in an above ground conference room in the same office building, Aire was one of the first to thank Wexton for her service to the community and helped present her with a plaque covered in photos of Little Lobbyist families. 

“Thank you. Thank you forever,” he said. 

Watkins followed her son’s comments with her own. “We love you. We love the woman that you are, the way you help our little boys and girls.”

Watkins, for her part, expressed gratitude for Wexton’s push to support furloughed federal workers in 2019. Her husband, then in his 40s, went back on active duty and redeployed to South Korea to continue providing for his family because federal workers were not receiving their salaries at the time. 

“She was an amazing force trying to move forward the pay for federal workers, and I truly appreciate that, because so many of my neighbors and people in my community were affected,” Watkins said. 

Tasha Nelson, another founding member of Little Lobbyists and one of Wexton’s constituents, attended the meeting with her son Jack, 13, who has cystic fibrosis, a genetic condition that primarily impacts his lungs. Care for cystic fibrosis, including medications, can cost tens of thousands of dollars per year, making insurance coverage all the more vital for her family.

Nelson and her son were also present at the first meeting with Wexton, which Nelson described as “something really special.” 

“Jack had his medications out because he was going to have a snack. Another child’s parent was fixing her [tracheostomy, a breathing tube inserted directly into the neck]. Other children were playing with each other, all while we’re having these very important conversations about how legislation is affecting our families and our real lives,” Nelson said. “Congresswoman Wexton got to see a kid take out six pills and take them one at a time so that he can have a meal while we’re talking about the cost of medications.” 

In 2020, during the early, terrifying days of the COVID-19 pandemic, Wexton intervened to help Nelson’s family navigate quarantine. Nelson’s husband is a federal worker with a security clearance and initially, he was not allowed to work from home like other federal workers. This was particularly dangerous for Jack — cystic fibrosis puts him at high risk of severe complications or even death if he contracts COVID-19. Wexton helped change the policy so that workers who were high-risk or who had high-risk family members, like Nelson’s husband, could stay home. 

“I reached out to her office and explained what families all over the country were experiencing, and she immediately went to the Senate Intelligence Committee, educated them on this and within a week of my call to her office, families like ours were protected and able to stay home and keep their high-risk members safe,” Nelson said. 

While Wexton is retiring from Congress, she expects to continue advocating on disability issues as long as she is able to. 

“I plan on enjoying lots of quality time with my family and two sons. I also hope to be able to keep up my advocacy work. I’ve worked hard to make the most of this platform I have in Congress to fight for legislation and bring attention to the need to do more on these types of health and disability challenges I’m facing. I plan to continue making my voice heard,” Wexton said after the meeting.

She also expressed faith that her successor, Suhas Subramanyam, will continue building on her legacy. Subramanyam won Wexton’s district earlier this month, keeping it in Democratic hands. 

“I’ve known Suhas for years, and my team and I have been working with him as he prepares to take office. He plans to keep a number of members of my team on with him and keep up much of the work we’ve started on issues important to our district like this one. I’m sure that he will be an outstanding champion for all Virginia families. I know he and the Little Lobbyists are looking forward to meeting,” she said.