New Jersey resident Anna Landre pled her case to the local — and then national — media last year after her health insurance company reduced coverage for the daily assistance she depends on as a Georgetown University student living with significant disabilities.
Landre’s quest, which also included various appeals, was eventually successful, and she reached a settlement with the state last June to ensure her Medicaid plan — administered by Horizon Blue Cross Blue Shield — will continue to pay for the same amount of personal care.
Now a trio of Democratic lawmakers representing the Freehold woman’s district want to make sure other Garden State residents in Landre’s situation don’t have to wage a public battle to secure sufficient care. Sen. Vin Gopal and Assembly members Joann Downey and Eric Houghtaling (all D-Monmouth) introduced five bills on Monday designed to improve communication concerning these benefit programs and ensure sufficient support exists for young adults, including college students, with disabilities.
Three of the measures would make changes to the Medicaid program, which provides insurance coverage to residents with varying levels of disabilities, including a proposal to allow college students extra coverage for personal aides. Another would lower the age for young adults with disabilities to qualify for more specialized assistance; and one would create a task force to determine if these programs are meeting the personal needs of disabled individuals.
“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,” Landre said in a press release the lawmakers issued; she said the “discriminatory and antiquated” regulations for the program present a challenge to other disabled individuals, as well.
‘A fantastic start’ to reform process
“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,” Landre said. According to state officials, at least 25,000 New Jerseyans with disabilities receive various support services through the state.
The Department of Human Services, which oversees Medicaid, has declined to comment on Landre’s case directly, as is its policy; it also does not comment on pending legislation.
“The Department cannot comment on specific cases, but our priority is always to ensure that individuals have access to the services and benefits for which they are eligible to meet their needs,” the agency said in June, when Landre’s story became public.
Lawmakers said Medicaid covers a limited amount of hours for personal care assistants, based on an assessment of the individual’s needs and scheduled to help them maintain independence; the insurance company administering these benefits can review and adjust them from time to time. PCAs are trained professionals who help elderly and disabled individuals with bathing, dressing, feeding, mobility issues and more, both in home settings and in long-term care facilities.
According to a PBS Newshour story on her case, Landre was receiving 16 hours a day — or 112 hours per week — of assistance to cope with the challenges resulting for a genetic disorder she has had since birth. Horizon’s reassessment of her needs led it to cut this back to 70 hours of coverage. Landre, who was living on campus and using a motorized wheelchair, said the change would likely have forced her to drop out of school and would make it hard to live independently.
Individuals with significant disabilities need to be able to count on sufficient support, the legislators said, especially if they are facing challenges like living on a college campus in another state. They said the state’s current Medicaid regulations are inflexible and make it hard for out-of-state students to get the help they need.
“Students with disabilities often need the help of a personal care assistant for basic tasks like getting dressed or using a restroom,” Downey said. “If you’re living on-campus, though, especially at an out-of-state university, things become much more complicated.”
‘Unleash academic and professional potential’
Gopal said it is particularly important to support young people with disabilities seeking to advance themselves through higher education. “The outcome of these changes is simple: a fairer, clearer process that works for people with disabilities instead of limiting them,” he said. “Rather than forcing them to stay at home, we can unleash the academic and professional potential of every person with a disability.”
To improve the system, the lawmakers have proposed the following bills, which have yet to be posted for a hearing:
S-1041: Increases the number of home health aide service hours provided to a person with disabilities attending college; the bill essentially allows for up to two extra hours of daily PCA care, based on an initial assessment. Reassessment would be required every six months. (The trio also supports another bill to expand PCA hours for disabled individuals who qualify for Medicaid through a separate program designed to support those with low-income jobs who would not otherwise qualify for the public insurance program.)
S-1042: Requires managed care organizations overseeing Medicaid plans to explain to individuals with disabilities in writing what their plan covers in terms of PCA services, including the maximum number of hours it will fund, and notify them of other services they can receive.
S-1040: Allows individuals with disabilities living on college campuses to complete required nonmedical check-ins with state Medicaid by phone or other virtual communications, instead of in-person meetings.
S-1035: Allows individuals with disabilities between 18 and 21 years of age to receive direct support professional services (DSPs) from DHS; DSPs are trained to help individuals with disabilities communicate and gain more independence in their lives. (PCAs are focused on personal care and assistance, not necessarily developing independence.)
S-1036: Establishes a 15-member Personal Care Assistance Task Force under DHS, tasked with assessing how the state currently determines PCA coverage for Medicaid members, how this is working for those in college, and if the state should hire a third-party service to handle these assessments.
“This is a complex problem, and requires more than one solution,” Houghtaling said. “It starts with empowering the disability community to make their voices heard when determining how these programs are set up.”