It took just one sentence to throw 20-year-old Anna Landre’s life into crisis.
After spending years working toward her goal to attend Georgetown University, a simple notice from the New Jersey Department of Human Services is threatening to take it all away. Landre’s Medicaid services are being cut, and the hours of personal care assistance she receives while away at school to help with daily living tasks are getting slashed from 16 hours a day down to 10. What that means is that it’s all but certain she’ll have to drop out before fall.
“As soon as I win one appeal against my insurance company, or I’m safe for just a second, it’s in the back of my mind that this isn’t going to last long,” Landre said.
From her motorized wheelchair in her family’s Lacey Township home, Landre explains her nearly three-year long battle to get and retain services to help her attend and stay at college. The rising junior has spinal muscular atrophy type 2, a neuromuscular disease with severe respiratory complications. Her state-based Medicaid pays for home health aides, but because Landre is no longer “home bound” in the traditional sense of the word, her benefits are being reduced.
Medicaid contracts her health care through Horizon NJ Health, a private company in the Horizon Blue Cross Blue Shield Network, an underwriter of NJTV News. They use an assessment tool created by the state and federal Medicaid authorities to calculate her need for personal assistance. According to their evaluation, Landre didn’t need the number of hours she had previously been awarded.
“They’ll help me with things like showering, getting out of bed in the morning, getting dressed, going to the bathroom, doing my laundry or other household chores, or cooking, and really none of these things are optional activities that I can cut,” Landre said.
Landre is a stellar academic. She’s got a 3.9 grade-point average, concentrating in foreign affairs with bona fides as the valedictorian of her Freehold Township Regional High School class. She says that tool doesn’t calculate the real needs of a human.
“I always have to postpone certain things. Like, ‘Oh, I cant drink this coffee right now because I’m going to have to go to the bathroom and I don’t have anyone to help me for another four hours,” she said.
She says It’s called “pee math” in the disabled community — calculating when you drink and eat based on the next time you’ll have available help to go to a restroom. Landre says with every achievement she’s felt penalized. She first received word her personal care hours would be cut in May 2018. Around the same time, she was told that accepting a prestigious internship paying $14 an hour would put her over the threshold for any Medicaid services. She’d have to choose between the two.
“You think of the stress this puts on our everyday lives, just constantly fighting these systems or waiting for them to cut off our care and put us in crisis. Or being in crisis, how much potential are we wasting?” said Landre.
Landre appealed with the help of the local press, a nonprofit law center and state legislators. She won the battle for her internship. Then in February 2019, Administrative Law Judge Mary Ann Bogan reviewed the general cut to her hours and ruled in favor of Landre.
Landre thought she’d won the war, unaware the decision goes back to the state Division of Medical Assistance and Health Services for a final approval. They backed Horizon.
As the chair of the Assembly Human Services Committee, Assemblywoman Joann Downey says she is personally working with the commissioner to find a solution for Landre and others in her position.
“We have a gap of a hole there that needs to be fixed,” Downey said. “Here you have someone very bright, doing what she should be doing, what we encourage people to do — do your best, be productive and work — and then we’re punishing her. The state’s saying, well because of that we’re going to cut your hours because you’re doing so well, that means you don’t need personal care assistant hours. That’s not the truth,” Downey said.
A spokesperson for Horizon Blue Cross Blue Shield New Jersey tells NJTV News the company doesn’t rely on its own policies or tools to determine eligibility. Essentially the insurer’s hands are tied by state regulations. Rather, Horizon “[…] administers the Medicaid program according to rules set by the federal and state agencies that fund Medicaid.”
“What I want at this point is true structural reform. There’s a lot of Medicaid regulations that make it really hard for us to go away to college, or have careers, or have a family, or just do anything other than be home bound and be this caricature of what the state thinks a disabled person is and should be,” Landre said.
NJTV News asked State Department of Human Services Commissioner Carole Johnson to discuss the assessment tool and state guidelines for its use and whether it takes into account varied and unique situations. She declined to be interviewed for this story.
A spokesperson for DHS said in a statement, “Our priority is always to ensure that individuals have access to the services and benefits for which they are eligible to meet their needs. NJ Medicaid supports Medicaid enrollees’ needs in a variety of settings and is always willing to explore opportunities to continue to improve the program.”
For now, Landre is appealing to the appellate division — though the case could take years before it’s heard — and waiting in limbo to find out if she can return to school and continue her degree or truly be home bound.