State lawmakers are aiming to loosen dated regulations that make it difficult — sometimes impossible — for students with disabilities to attend college.
The push for reforms was precipitated by Anna Landre, a junior at Georgetown who once interned for the Monmouth County Democratic Organization.
Landre has spinal muscular atrophy type 2, a hereditary disease that causes loss of motor control and muscle degeneration. She is bound to a wheelchair and requires a health aide to complete a number of daily tasks.
Last year, the state Department of Human Services sought to cut the amount of aid hours it would provide her from 112 to 70. That decision was eventually overturned following an appeal, but that only helps her.
“While this is a lifeline for me, it does nothing to help others in my situation, and I promise you there are many,” Landre said at a press conference Monday. “I’ll name just a few friends of mine who are struggling to get the services that they need: First, a substitute teacher who can’t work fulltime or live on his own. Second, a lawyer who graduate from Harvard who is unemployed and keeps having to turn down job offers because even he can’t even figure out New Jersey’s regulatory mess.”
To aid those others, legislators from Landre’s native Monmouth County are pushing bills that would increase the amount of reimbursable hours for personal care assistants those with conditions like Landre’s require.
The bill, A4130, would increase the limit for reimbursable personal care hours under the NJ WorkAbility program from 40 to 112.
“Today we are facing yet another problem created by out-of-date, out-of-touch bureaucracy,” said Assemblyman Eric Houghtaling, one of the bill’s sponsors. “Any self-advocate in the disability community can tell you which services they need and why they’re important, but our system has failed to listen to their voices. Instead, it’s created an unfair process that fails to account for reality and shuts out the folks that need help the most.”
WorkAbility provides Medicaid coverage for those whose fulltime earnings would otherwise make them ineligible for the program.
State Sen. Vin Gopal said he intends to introduce other bills to update the calculations used for those with disabilities who do not live at home.
Currently, the same formula is used for students living on campus and at home, despite the different lifestyles of the two groups.
“Medicaid completely overlooks this when calculating care hours, hurting students like Anna,” Gopal said. “As a result, students are forced to make a choice: Give up your assistance or give up your education, and that’s not a real choice.”
It’s not yet clear how much support any of these measures will enjoy in the legislature, though Landre’s case has earned droves of media coverage.
That coverage could make opposing the bills a difficult position to hold politically.
“Today, Americans with disabilities like Anna are proving that old assumptions are wrong every day. Their brilliant minds, their tireless spirits, their great fortitude allow them to achieve amazing things,” Assemblywoman Joann Downey said. “They don’t deserve to have a door slammed in their face when they dare to reach for greater heights. Instead, we should empower them to excel in every area.”