WILLINGBORO — For 16 hours a day, seven days a week, 3-year-old Crista Jackson has a nurse by her side.

Crista was born almost three months premature with chronic lung disease, making it difficult for her to breathe and speak. Her nurses from Bayada Home Health Care in Mount Laurel help her use a tracheostomy and ventilator for her breathing and take her to regular speech and chest physical therapy appointments.

Despite her daily challenges, the bubbly toddler was all smiles Thursday, when Assemblyman Troy Singleton, D-7th of Palmyra, visited her home to learn how home care has impacted her family. She loved bouncing over to his side to give him high-fives.

“She’s a tough little kid,” Singleton told Crista’s mother, Jennifer Asson.

Singleton is hoping children who receive pediatric home care will benefit from a bill he has sponsored that would prohibit cuts to reimbursement rates by Medicaid managed care organizations for personal care assistant (PCA) services. While Crista's medical needs are greater and she receives private nursing care versus personal care assistant services, her family is advocating for the bill's passage. They hope future legislation that would mandate an increase in the private duty nursing rate reimbursement will follow.

Singleton said he plans to include language in the 2018 fiscal year budget to address the issue.

The New Jersey Department of Human Services establishes a state Medicaid fee-for-service rate for PCAs, but managed care companies like HMOs are allowed to set their own rates. The bill would require managed care companies to adhere to the established state rate, currently $18 per hour. The rate was last raised two years ago. HMOs in New Jersey pay between $13 and $15, officials estimated.

The Assembly passed the bill Monday. The Senate Budget and Appropriations Committee will consider it Thursday. Sen. Diane Allen, R-7th of Edgewater Park, co-sponsored the Senate version of the measure.

“Additional reimbursement cuts for in-home care will put some of New Jersey’s most vulnerable residents at risk,” Allen said. “Those who provide this critical care should be paid a reasonable rate, which will continue to make it possible for nursing home-eligible patients to remain in their own homes.”

Without home care, some children would be forced into long-term care in a hospital or pediatric nursing facility, isolating them from family, friends and activities. Home care takes the burden off not only the children, but also their families, Bayada officials said.

Crista’s mother takes comfort in leaving her daughter with a medical professional when she needs to go to work or run errands. Before home care, Crista spent a lot of time in hospitals.

“It’s a lot of work to take care of her,” Asson said. “I’m so glad I have the support that I have, because I don’t think I’d be able to do this by myself.”

Because she needs a higher level of care, Crista does not qualify for personal care assistant services. Her condition requires a registered nurse rather than a home health aide, so her care falls under private duty nursing.

Fair reimbursement is also an issue for private duty nursing care. The Home Care & Hospice Association of N.J. will be asking Singleton to sponsor a bill to increase the private duty nursing rate reimbursement by $10, according to Bayada spokeswoman Lisa Weinstein.

“It’s something that keeps families in their homes, keeps them together, and keeps them focused on things that they need to do,” Singleton said of home care nursing.

Crista is getting ready to start school on June 1, the same day Singleton’s bill heads to the Senate Budget Committee. Singleton hopes the bill will arrive on Gov. Chris Christie’s desk before the end of June.

“That’s the plan, Miss Crista!” he said, giving her another high-five.

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