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Families of Special-Needs Kids Seek Flexibility in Scheduling At-Home Nursing Care

Bill would allow juggling of hours to accommodate work and family needs, but insurers worry about patient safety, possible waste and fraud

special needs

For families of children with special needs who require around-the-clock care, having a nurse in their homes is essential.

But some find it difficult to match their schedules with government rules that limit the hours those nurses can work.

Assemblyman Herb Conaway Jr. (D-Burlington) is seeking to fix this through a bill, A-1948, that would allow children who receive Medicaid and their families to have more flexibility in scheduling nurses.

The current rules, which require that a family member be in the home whenever a nurse is there, can interfere with parents’ ability to go to work and meet other family needs, according to bill supporters.

Families do have the option of availing themselves of medical daycare programs or other programs that offer a “respite” from providing 24-hour care.

The proposed rules changes are opposed by the health insurance industry, which argues that the hours that nurses are assigned to children are based on their medical needs, and that the proposed changes could limit the ability to detect cases of waste and fraud.

Current rules limit private-duty nurses to working no more than 16 hours over a 24-hour period.

The bill would allow children and their families to “bank” the hours from when they don’t require nurses on one day to use at a later date. The “banked” hours would be allowed to accumulate over the course of a month – if not used by the end of the month, the hours couldn’t be carried over to the following month.

The legislation would also require the state to ask the federal government to approve the change, since the feds set the current rules.

“The bill really originates from constituents of mine -- and they’re not unique -- who have children with special needs that require quite a bit of care, quite a bit of attention from the family,” Conaway said, adding that current scheduling “often interferes with the ability of the family to provide care to other children, to work,” and to do other activities.

“This bill springs form that concept that by providing flexible scheduling and help, you can promote the general health … and well-being of the family as a whole,” he said.

But Sarah M. Adelman, vice president of the New Jersey Association of Health Plans, said insurers already work with children and families to accommodate special or recurring scheduling needs. She said how special-needs nurses are scheduled is based on the medical needs of the child.

Adelman said the insurance industry concerns aren’t based on costs, but on the possibility that something bad could happen as a result of a nurse not following the schedule agreed upon by the family, insurer and nursing company.

“We are concerned that fragile children may, as a result of this proposal, receive less care than is appropriate on a given day or experience an adverse outcome because a nurse was not present when the child’s plan of care indicated that one should be,” Adelman said.

But Adelman also said that insurers check to make sure that hours worked by nurses are the same as the hours authorized by the insurers, in order to determine if waste or fraud is occurring.

If families could “bank” the nurses’ hours, Adelman added, then the two numbers would no longer be the same and “it would be nearly impossible to audit and track whether the care was provided and if it was appropriate.”

Adelman noted that nurses cost up to $300,000 per year for each special-needs child. If a child authorized for 10 hours of nursing per day only receives five hours of care on some days, it would call into question the authorized hours, she said.

Conaway said this would be a concern if a child frequently asked for many fewer hours, but the bill is designed to increase flexibility while maintaining the same number of hours overall.

“We’re talking about changes that come up in a schedule and trying to help families,” he said, adding that spot checks by insurers would be a more effective way of catching waste and fraud.

Adelman suggested that there might be other ways to address scheduling requests without changing the current limits on the hours that nurses work.

The Conaway-chaired Assembly Health and Senior Services Committee released the bill last week on a 9-0 vote.

This the second time that Conaway has worked to pass the measure, after a similar effort two years ago didn’t advance after Conaway’s committee approved it. Conaway said he continues to hear from residents in his district about the need for the change.

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