NJ forces disabled Howell student to make brutal choice: internship or health aide money

HOWELL - Like any college student, Anna Landre was thrilled to land a quality summer internship.

Unlike her peers, though, she faces a brutal decision: Taking the job means losing some crucial health benefits.

The Howell 19-year-old has spinal muscular atrophy type 2, a progressive weakening of the muscles. She uses a motorized wheelchair and needs a personal care aide at her Georgetown University dorm.

The New Jersey Division of Disability Services would penalize Landre for holding the internship, one that pays $14 an hour, by significantly reducing the aide's hours.

“I was shocked when I heard this,” said state Sen. Vin Gopal, D-Monmouth, who is working on a solution. “It really limits folks who are able to work, who want to work and can make a great impact on our community.”

Landre has much to offer. Last year she graduated Freehold Township High School as valedictorian. She’s used to navigating barriers created by the able-bodied folks who make the rules for society’s disabled.

“A lot of times it’s a matter of people telling you no 50 times, until you call 100 times,” she said. “There are always exceptions that can be made, but you have to push hard. I think the state relies on the fact that eventually you’re going to give up.”

That’s not happening here. There is much at stake for Landre and others who might follow in her footsteps.

MORE: Local mom says NJ cutbacks put disabled son at risk

MORE: Big award for Home Depot worker with cerebral palsy

'Her drive is remarkable'

Elizabeth Higley, Freehold Township’s principal since 2004, said she’s rarely encountered students with Landre’s ability.

“She’s probably one of the most intelligent and gifted students to graduate from the high school,” Higley said. “Her drive is remarkable; her positive attitude, her sense of humor — she never lets her physical limitations impede her.”

Landre led the school’s debate team, was a regular attendee at Friday night football games and developed an eye for things that could make disabled youths’ lives easier.

“She went to a park in Howell, and she realized in one of the playgrounds there weren’t any ramps for wheelchair accessibility,” Higley said. “She wrote to the town, and within a week they put something in. Even in high school, she had a keen idea that this is what her life goal was going to be.”

Washington, D.C., is the place for difference-makers, which is why Landre attends Georgetown. But living there requires 16 hours of daily assistance from an aide who stays with her overnight and helps her get in and out of bed, get dressed, do chores, run errands and use the bathroom. That’s covered under her current Medicaid plan.

According to New Jersey Division of Disability Services' rules, however, she loses that coverage if she earns income at a rate above the federal poverty line. The state offers a program to account for these situations, called WorkAbility. But WorkAbility only covers the aide for 40 hours per week (roughly six hours per day). Landre would have to fund the rest of the hours out of pocket, which just isn’t possible for a college student making $14 per hour.

In short: She’s being forced to choose between the internship and the aide.

“Because the assumption is if you’re able to work, then you’re not disabled enough to need those services,” Landre said. “What ends up happening is, this is a disincentive to work.”

It gets worse after college. Let’s say Landre earns a job in D.C. paying $50,000 per year after graduation — not making bank, but clearly above the poverty line. Based on WorkAbility rules the aide would cost her $52,000 out of pocket, putting her in an immediate hole.

In seeking a solution, Anna and her mother Laura Landre say they’ve been “ping-ponged” between various state agencies as the May 28 start date for the internship approaches.

“While the Department does not discuss specific cases, it always works hard to ensure residents understand their options to get the services they need, meet the concerns of families and achieve a positive outcome," Department of Human Services spokesman Tom Hester said in a statement.

“My daughter wants to work and contribute to society,” Laura Landre said. “She doesn’t want to sit home without a job and ride the system.”

A push for change

Desperate for help, Anna turned to her local representatives in the state legislature. They’ve taken up the cause.

“It’s an outdated Medicaid provision that we have,” said Assemblywoman Joann Downey, D-Monmouth. “It makes absolutely no sense in this day and age with computers and all we can do in different kinds of workspaces.”

That’s a fine point, and it sheds light on the larger issue here: Advances in technology have created more opportunities for those with disabilities to work. There are going to more Anna Landres.

“You have people who are physical disabled but have amazing minds like Anna, and you don’t want to waste that potential,” Downey said.

Beyond the obvious humanitarian aspect, there is a long-term financial incentive to change the rules. Give someone like Landre a chance to pursue a career, and she could earn a living to the point where she can afford care on her own. Investing some extra money to expand WorkAbility’s coverage now could help these motivated folks off the rolls later.

“WorkAbility should be a means for somebody to have a career and maybe one day not need the state,” Anna Landre said. “But I can’t even get to that point.”

Gopal and Downey vowed to help.

“We’re going to try to get this changed through legislation,” Gopal said. “It’s something that has got to be changed.”

In the meantime, just one week remains until Landre’s internship starts at Washington, D.C. public relations firm Weber Shandwick. Gopal said he’s spoken with people at human services and they’ve been “receptive” to addressing the situation. Downey said she will reach out to Gov. Phil Murphy if need be.

“We’re going to see what we can do to help her right now,” Downey said. “This seems ludicrous.”

Can a 19-year-old move a government bureaucracy? Worth noting: Despite her daily challenges, Landre posted a 3.9 GPA as a Georgetown freshman.

“Anna has had an uphill battle all her life and she has succeeded,” Laura Landre said. “She’s going to change some things for better.”

Her former principal is willing to bet on that.

“She won’t stop fighting,” Higley said. “She doesn’t let anything get her down.”

For more from Anna on the challenge she faces, check out the video atop this story.

Carino’s Corner appears Mondays in the Asbury Park Press. Contact Jerry at jcarino@gannettnj.com.