OCEAN TOWNSHIP - Aiming to support students with disabilities who receive Medicaid to support the cost of independent living, Senator Vin Gopal (D-Monmouth) joined Assembly Human Services Chairwoman Joann Downey (D-Monmouth) and Assemblyman Eric Houghtaling (D-Monmouth) to introduce a new package of legislation aiming to increase care hours and accommodations for New Jersey residents with disabilities. The legislation, which was developed in response to challenges faced by college student Anna Landre in her efforts to obtain Medicaid assistance for her disability, would provide additional support for Garden State residents looking to study at institutions of higher education.

The legislators renewed a push to pass a bill (S-1038/A-1004) to greatly increase the number of personal care hours for students and others enrolled in New Jersey’s WorkAbility program, which offers working people with disabilities the opportunity to receive full coverage under Medicaid. The legislators are also introducing the following bills to support students and others with disabilities as part of this effort:

• S-1041: Increases the number of home health aide service hours provided to a person with disabilities living on a college campus.
• S-1042: Requires Medicaid to notify certain recipients of the maximum coverage that they are eligible to qualify for.
• S-1040: Allows certain Medicaid recipients living on college campuses to complete required non-medical check-ins virtually, rather than in-person.
• S-1036: Establishes a Personal Care Assistance Task Force in the Department of Human Services to ensure that individuals with disabilities have their unique needs met.
• S-1035: Allows individuals with disabilities between 18 and 21 years of age to receive direct support professional services from DHS.

“It's unfair to force anyone with a disability to overcome constant obstacles if they want to further their education,” said Gopal. “The outcome of these changes is simple: a fairer, clearer process that works for people with disabilities instead of limiting them. Rather than forcing them to stay at home, we can unleash the academic and professional potential of every person with a disability.”

The legislation was inspired by the experiences of student Anna Landre, a student at Georgetown University that has been outspoken regarding the need for improved Medicaid services. In May 2018, Horizon NJ Health, an insurance company that administers NJ Medicaid, cut Landre's Personal Care Aid (PCA) services to a level that was too low for her to continue living independently at college at Georgetown University.

Landre appealed this decision and went to a Medicaid Fair Hearing, where a judge ruled in her favor. Despite this, the decision was reversed in May 2019, forcing Landre to consider dropping out of college and moving back home to rely on unpaid family care. Thanks to public pressure and legislative advocacy, NJ Medicaid agreed to reinstate Anna's services as part of a settlement in June 2019.

“For as long as I can remember, my family and I have had to fight against New Jersey Medicaid's denials of basic disability services that allow me to live independently,” said Landre. “This story is far larger than me - all too often, the biggest challenge that disabled students and workers face is trying to circumvent New Jersey's discriminatory and antiquated Medicaid regulations just so we can live our lives. The measures contained in these bills are a fantastic start to a process of reform that should continue until all disabled New Jerseyans have access to education and employment, regardless of our medical needs.”

Currently, Medicaid only covers the cost of a personal care assistant (PCA) for a person with disabilities for up to 40 hours a week. That allotment is tailored to the schedule of a person who lives at home, usually with a parent or other caretaker who can assist with living services when not at work. However, a student living on a college campus, away from their usual support structure and family members, could require up to 100 hours of weekly services just to complete basic tasks such as showering, getting dressed or undressed, getting to class, or simply using a restroom. Meanwhile, assessments from insurance companies have been known to slash assistant hours down to 10 hours a day, making it all but impossible for a student with disabilities to meet a demanding college schedule.

“Students with disabilities often need the help of a personal care assistant for basic tasks like getting dressed or using a restroom,” said Downey. “If you're living on-campus, though, especially at an out-of-state university, things become much more complicated. Right now, New Jersey's out-of-date Medicaid rules prevent students with disabilities from getting the help they need, which in many cases could keep someone could attending school at all. With these reforms, we can create new opportunities for every person who's had to fight against the system to succeed.”

“This is a complex problem, and requires more than one solution,” said Houghtaling. "It starts with empowering the disability community to make their voices heard when determining how these programs are set up. We also need to expand students’ access to reliable, quality services and make sure that the Department of Human Services is fully equipped to tell these young people what opportunities they qualify for. Finally, it's time to re-examine the entire personal care assistant model to make sure that it's able to provide for the unique needs of on-campus students, rather than relying on a one-size-fits-all approach."