Quadriplegic in NJ talks having Medicaid-funded therapy cut
Josh Gargano has spastic quadriplegia, a severe form of cerebral palsy that affects all four limbs. His Medicaid-funded therapy was cut by his Managed Care Organization. He and his mother fought the denial in 2023, appealing until the state intervened.
A bipartisan bill in the New Jersey Legislature aims to protect residents with disabilities from losing nursing care when they turn 21 — a problem families and disability advocates say has become routine under the state’s Medicaid managed-care system.
The proposal offers a potential legislative fix to issues uncovered in Hurdles to Health Care, an investigation by NorthJersey.com and The Record this year that found private insurance companies managing the state’s $22.5 billion-a-year Medicaid program often reduce or deny services like in-home nursing for people with complex medical needs.
Assembly bill A3588 would ensure that people who move from pediatric care to the adult Medicaid program keep the same number of nursing hours unless an evaluation shows reduced medical need.
It would also prevent the state’s five Medicaid managed care companies from cutting private-duty nursing hours solely because of age. Insurers would have to guarantee that services continue while denials are under appeal.
“Each individual has a unique set of needs. We want to make sure protections are consistent but also flexible enough to reflect that,” state Assemblywoman Aura Dunn, a North Jersey Republican, said in an interview. Dunn, the co-chair of the Legislature’s Disabilities Caucus, touted the bill this week in an appearance with a Morristown woman whose nursing hours have been cut.
Under contracts with the state, the five insurance companies — United Healthcare, Horizon Blue Cross Blue Shield, Aetna, WellCare and Wellpoint — administer NJ FamilyCare, New Jersey’s Medicaid program, which covers 1.8 million low-income or disabled residents.
In the U.S., where per-person health care spending is far higher than in the rest of the world, managed care has been touted as a way to control costs. New Jersey gives insurers a fixed monthly payment for each enrollee. Companies are expected to manage an individual’s care within that budget. The goal is to control costs and improve coordination.
Insurers note that state law requires them to spend 85% of the premiums they collect on medical care. But patients and and advocates, like Paul Aronsohn, the state’s disability ombudsman, say profit motives often push managed-care companies to deny care and that appeals can take months. While those appeals can ultimately be taken before administrative law judges, their rulings are nonbinding, giving insurers the final word, critics say.
The Assembly bill was introduced in February 2024 by state Assemblywomen Nancy Muñoz, a Republican representing parts of Middlesex, Morris, Somerset and Union counties, and Annette Quijano, a Democrat from Union County. It was referred to the Assembly Aging and Human Services Committee but almost two years later has yet to receive a vote or hearing.
Dunn, whose district touches Morris and Passaic counties, said she plans to co-sponsor the bill, after learning more about the issue during her Nov. 7 visit to a Morristown home.
That’s where Dunn met with a 28-year-old patient named Lilianna, her nurse and her mother during a visit organized by Bayada Home Health Care, a Moorestown-based nursing agency, and its advocacy organization Hearts for Home Care.
Bayada, which provides the Morristown woman’s care, hosted the event to highlight how home-based nursing allows medically fragile residents to avoid having to move to an institution, according to Dunn. In a statement, the company identified Lilianna only by her first name and said she needed care due to a chromosomal disorder, developmental delay, tracheostomy and feeding tube.
“Lilianna, who has received continuous nursing care for more than 25 years, represents thousands of residents whose independence and safety depend on these essential services,” Bayada spokeswoman Sarah Cox-Stewart said in an email.
“It took a lot of courage to open their home,” Dunn said in the interview. “There’s no better way, as a policymaker, to really understand the challenges families face in finding the right care.”
Dunn stressed that Lilianna’s medical needs “haven’t changed” since she was a child, just “the way her care is funded.”
The legislation would also codify and expand appeal rights, writing into law a policy that currently exists only in state guidelines. That would give families stronger and more permanent protections against denials or reductions in care, Dunn said.
Tom Wilson, a spokesman for Horizon, the state’s largest Medicaid managed care insurer, said the company does not comment on proposed legislation before it reaches a hearing.
Horizon and other insurers have said their decisions follow state guidelines and are reviewed by the state Department of Human Services to ensure that care plans reflect each member’s medical condition. and that Medicaid funds are used appropriately.
The company’s policies to determine whether prescribed care is a medical necessity are set by its internal team of doctors and nurses, Wilson told NorthJersey.com in a statement earlier this year. Decisions are grounded in research and “generally accepted standards of care established by the relevant specialty physician organizations,” he added.“Reductions in skilled nursing care can occur when an individual’s medical conditions improve or medical needs otherwise decrease,” Horizon said in a statement. “Our goal is to provide the right supports to enable members [to] live safely at home when possible.”
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