Less than a week after she left Georgetown University for summer break, Anna Landre clicked on an email and realized everything she had worked for was about to slip away.
The 20-year-old rising junior has spinal muscular atrophy Type 2 and relies on paid aides to help her with basic tasks, from getting dressed to going to the bathroom.
The email that day came from her lawyer and informed her that her aide services were about to get cut.
“I just started crying,” Landre told me. “I was sitting at my kitchen counter. I don’t know what I was doing, but I just sat there and cried.”
In her mind, she saw one domino slam into another: Without enough help from her aides, she wouldn’t be able to return to Georgetown, which meant she would have to move back home to New Jersey, which meant her mother would have to quit her job to take care of her, which meant her family would have to buy a smaller house, which meant her little brother might have to change schools.
“And that is what would happen to me because I have a family that supports me and that would always want to take care of me, no matter the cost to them,” she said. “Imagine if I didn’t have that. I would be looking at going in a nursing home at 20 years old.”
I first introduced you to Landre in this column a few months ago. At that time, she thought her legal fight with her state’s Medicaid program was behind her, at least for the year. Her future seemed promising: She was a regular columnist for the school’s newspaper, she was serving as an advisory neighborhood commissioner, and she was thinking about a career in politics.
Then that email came and, just like that, she no longer knew whether she could continue doing any of those things.
Just like that, she went from thinking about what job she wanted in the future to not knowing whether an aide would be there to help her shower in the days ahead.
What happened to Landre after she received that email — and which she plans to talk about at a news conference on Monday — reveals just how messed up our nation’s health-care system is, especially for those who depend on it most. Her situation is outrageous but not isolated.
“As a disabled woman & wheelchair user, I’ve been fending off my insurance company’s cuts for years,” Landre tweeted May 28, the day she saw the email. “Today, they finally got a judge to side with them — and now I can’t go back to college next semester. The American healthcare system has just, quite literally, ruined my future.”
That tweet was shared nearly 12,000 times and drew comments from people who spoke of their own struggles getting services:
“I’m actually fighting that same battle here in Iowa.”
“This happened to my mom and I. They just ran us in circles until we both collapsed.”
“They have ‘doctors’ review my brother’s case each year and proceed to tell us he gets too much physical therapy (2 times). He has cerebral palsy and his current schedule is the bare minimum recommended by his actual doctor.”
Sylvia Colt-Lacayo empathized with Landre’s situation from the other side of the country. The 18-year-old was recently accepted to Stanford University, and shortly after she found out, she started a GoFundMe page in hopes of raising enough money to pay for the aide services she would need to attend the school.
“There’s this misconception that even I was under — that I’m disabled, and that sucks, but the American health-care system will support me and help me live an independent, normal life,” she said. “The health-care system will only support disabled people enough for them to survive, not thrive.”
Like Landre, Colt-Lacayo uses a motorized wheelchair to get around and needs an aide to remain with her throughout the night and to help her with physical tasks during the day. By her calculations, while at college, if she can go six hours without using the bathroom, she needs an aide for at least 18 hours a day, or 126 hours a week. She said she was approved through California’s Medicaid program for 38 hours a week.
“I just happened to come out of the womb disabled,” Colt-Lacayo said. “That means I will live my entire life depending on other people, and yeah, that sucks. But I’m a human being, and I deserve to move out. I deserve to go to college. I deserve to live a normal, healthy life.”
Landre said she thought her case was settled in February, when a judge ruled that her insurance company’s attempt to reduce her aide services from 16 hours a day to 10 hours a day was “arbitrary” and that she “is completely dependent on others for her day-to-day living.”
But in the email from her lawyer, which came at the end of May, Landre learned that the New Jersey Division of Medical Assistance and Health Services, which administers the state’s Medicaid, had rejected the judge’s decision and sided with the insurance company.
Since then, Landre said, she has faced some difficult decisions.
After her tweet gained attention, people suggested she start a GoFundMe page. She said she considered it but decided against it for practical and moral reasons. The practical: She would probably not raise enough to get her through college, and what money she did raise could cause the state to further reduce her services.
“And morally, a GoFundMe is not going to do anything for anyone else,” she said. “I want actual systemic reform because this can’t keep happening.”
She decided, instead, to push back by speaking up. She has had interviews with several media outlets and contacted lawmakers to discuss ways the system could improve.
During that time, she said, New Jersey officials reached out to offer a settlement agreement that would allow her to keep her current level of services until she graduates from Georgetown. She said she felt torn. A part of her wanted to pursue the case in court, with the hope of setting some legal precedent, but she said her attorney and other disabled activists persuaded her to take the offer so she could continue fighting for others.
On Friday, the settlement was finalized.
On Monday, Landre plans to stand with several local lawmakers at a news conference and present the framework for new legislation. Medicaid differs by state, and Landre said her hope is that if New Jersey makes changes, other places and people will notice.
“I hope the disabled people who learn about this are more apt to fight for the services they deserve and not take no for an answer,” she said. “I hope everyone else, disabled and not, is willing to support us in this and pass the microphone. We need health care as much as or more than anyone else. The stakes are high for us.”
And just like that, with her aide services secure, she is once again focused on the future.