Impossible choices forced on the disabled
by S.I. Rosenbaum
by S.I. Rosenbaum
Anna Landre grew up believing she had a future as bright as any one of her classmates. A mutant quirk of her genome makes her muscles weak, and she gets around in a wheelchair. But she assumed she’d find a way around any obstacle.
“My mom was always determined that my disability would not at all limit my future in any way shape or form,” Landre said. “I could do anything anyone else would do, and it would be harder but we’d figure it out.”
Neither Landre nor her mother realized that Landre’s freedom — to work, to save money, even to get married — would be restricted by something much more complex and implacable than genetics: a government welfare policy meant to help people like here but which too often presents the real possibility of personal and financial catastrophe.
“People don’t completely understand how backwards and unjust these regulations are,” Landre said. “Every time I talk to someone who isn’t in the disabled community they’d be like, ‘You’re kidding me. That can’t be how it is, that can’t be the law, there must be a way to fix it.’”
Nearly 30 years after the Americans with Disabilities Act first outlawed workplace discrimination on the basis of disability, more disabled people live in poverty than when the law was passed. It’s a complex problem with many factors, but in some cases the very program intended to help disabled people becomes a devastating financial trap.
Medicaid was established in 1965 — not as a program for people with disabilities, but as a last-ditch healthcare program for the poor. It’s federally funded, but administration is largely left up to the discretion of states, and local policies differ widely.
In 1970s Medicaid was linked to a new program: Supplemental Security Income (SSI), a federally-funded income assistance program for disabled people. Back then there was no law against private health insurance companies turning away disabled customers, and so Medicaid became the default insurance option not just for the poor but also for most disabled people. And in the 1980s, as the nation moved to deinstitutionalize disabled people, Medicaid added home-care benefits that would allow people with disabilities to direct their own care in their own homes.
NOV 4, 2019
S.I. Rosenbaum is a freelance journalist based in Queens, N.Y.
Income inequality in America and pathways to positive change
“My mom was always determined that my disability would not at all limit my future in any way shape or form.”
Today in most states, the same application is used to apply for SSI and Medicaid. And both programs come with austere income and asset limits. To qualify for SSI, an individual can’t earn more than $771 in a month — less than $10,000 a year. And they can’t have more than $2,000 in assets at any time, a number which counts most personal valuables as well as cash in the bank.
Medicaid income and asset limits vary from state to state. Many states use the same limits as SSI, though others allow for as much as $1,012 a month in income for an individual. Two states, Arkansas and North Carolina, allow up to $7,560 in assets, and Arizona has no asset limit. On the other hand, some states — such as Connecticut — have asset limits as low as $1,200.
The problem is that Landre and roughly 3 million other disabled Americans have no alternative. While the Affordable Care Act has made it illegal for private insurance companies to refuse her, Medicaid is still the only insurance program in America which covers personal care assistance — the benefit Landre needs to survive from day to day.
“My assistants help me with getting out of bed, getting dressed, showering, household chores like laundry, cooking, and cleaning; nebulizer treatments for my breathing; going to the bathroom during the day,” she said. At night, an assistant helps her turn over in bed.
Losing personal care “can literally result in deaths for people with disabilities,” said Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress.
“It’s this assumption that if you’re so disabled, you’re not going to be able to work. And if you’re able to work, you must not be that disabled.”
Without Medicaid, disabled people “could go from having their basic needs met and living in the community … to being forced into nursing homes, or even dying as a result of lack of care,” Cokley said.
So people who rely on home care have no choice but to stay poor. “This isn’t an inconvenience, it’s a death sentence,” Cokley said. “It forces families and individuals to make choices they shouldn’t have to make.”
Landre didn’t realize any of this when she first started using personal care assistants in high school. By the time she went off to college at Georgetown in 2017, Medicaid was providing her 112 hours of assistance a week — enough to live on own in the dorm.
She had to learn to handle timesheets, payroll and scheduling for a constantly rotating staff, but it was worth the freedom and security it gave her. She assumed that was how she’d manage her adult life.
Then, at the end of her freshman year, Landre landed a paid internship for the summer. She’d be making $14 an hour. When she mentioned the news to a social worker, she expected congratulations. Instead, Landre recalled, “She was like, ‘Oh, you’re not going to be eligible for Medicaid anymore — you’re making too much money.’”
Landre felt blindsided. Suddenly she was facing the choice of keeping the services that would make it possible for her work, or actually working. She couldn’t do both.
Medicaid policies seemed to have been written by people who could not imagine someone like Landre. “It’s this assumption that if you’re so disabled, you’re not going to be able to work,” she said. “And if you’re able to work, you must not be that disabled.”
“No one expects a 20-year-old to manage a staff of eight people and be fighting an entire state bureaucracy at every turn.”
The problem is that Medicaid and SSI aren’t designed to raise disabled people to equity with nondisabled people. Instead, they can border on the punitive, as MIT political science professor Andrea Louise Campbell noted in her 2014 book Trapped in America’s Safety Net: One Family’s Struggle.
“American social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor,” she wrote. “They are so miserly as to be impossible to live on.” And while they are, in Campbell’s words, “designed to be less attractive than work,” the irony is that they ultimately penalize disabled people for working.
Facing down this dilemma, Landre went to the New Jersey Medicaid office looking for options that would allow her to take the internship and keep her benefits. Officials didn’t offer her any. Frustrated, she started calling reporters and connected with Jay Carino, a writer at her hometown newspaper Asbury Park Press.
But the same day Carino’s story ran, Landre received an email from Medicaid telling her they were arbitrarily cutting her coverage from 16 hours of assistance a day to just 10. This wasn’t a policy issue, and had nothing to do with her finances — it was just a random decision made by someone who had never met her.
Now Landre was fighting on two fronts: to be allowed to keep her benefits while working as an intern, and to appeal a vast and arbitrary reduction in care.
“There’s no preparation for this,” she said. “No one expects a 20-year-old to manage a staff of eight people and be fighting an entire state bureaucracy at every turn.”
Much of Landre’s fight took place in public. She knew the optics were good: “People got really angry, because it’s that narrative of ‘Look, it’s a disabled person trying really hard to work and have a productive lifestyle and the horrible government won’t let her.’”
As the story spread, she began to get emails from disabled people across the country. She heard from people like Daniel Florio, who has a Harvard MBA but can’t get a job in his home state of New Jersey without losing his benefits.Or Josh Basile, a Maryland malpractice lawyer with a spinal cord injury who was asked to choose between his job and his nursing care.
She even heard from people who wanted to marry but couldn’t, because their partner’s income would disqualify them from benefits.
All of them had scoured the conflicting Medicaid policies for solutions; none of them had found one.
In the end, Landre went off to her internship while appealing the cut in hours.
Eventually, the hours were reinstated — after a drawn-out court process, and only with relentless pressure from the media and legislators. Landre waited for a call ending her services because of the money she’d earned at her internship, but it never came. She thinks New Jersey Medicaid just decided they didn’t want more bad press.
It was a victory of sorts. But when she asked that state officials make changes to protect other disabled people from going through the same thing, they never followed up.
“Nothing changed at all,” she said.
Corporations and businesses are increasingly focused on hiring and retaining those with disabilities, providing health care benefits and salaries worth considering.
The Disability Equality Index sought to identify companies who were committed to behaviors like hiring goals, leadership, benefits, accessibility, support services and community engagement supporting equity for those with disabilities. Over 100 companies were awarded top scores including Walmart, Sprint, Verizon, Starbucks, Delta Airlines, and others.
The Valuable 500 is a global movement, putting disability on the business leadership agenda. Companies involved with this movement ensure that disability is on their board agendas and they commit to a public tangible action each year.
While SS and Medicare policies do nothing to elevate the disabled to the nondisabled economic status, there are a few federal programs intended to ease the burden of relying on Medicaid and SSI:
• ABLE Accounts: Created in 2014, these special accounts shield savings up to $100,000 from the SSI asset cap.
• Section 1619(b): A federal work-incentive program established in 1987 that allows people with disabilities to continue receiving Medicaid benefits while working if their out-of-pocket care costs would exceed their income. The catch: they still can’t save more than the SSI asset limit.
• Medicaid Buy-In: An optional program adopted by some states that allows some working people with disabilities to pay a premium to “buy in” on Medicaid benefits. Depending on the state, the program cuts off at a certain income level — for example, in New York an individual can have a gross income of up to $63,492 and keep Medicaid. But for a professional, that’s still pretty low: a raise or two could mean losing everything.
The American Association of People with Disabilities advocates for the legal rights of people with disabilities.
NOV 4, 2019
S.I. Rosenbaum is a freelance journalist based in Queens, N.Y.
The faces of poverty are all around us. From struggling young entrepreneurs to homeless veterans, college students to seniors. In this series, we explore the challenges of economic inequality in America along with solutions to change the conversation.