A national nursing shortage has affected families of medically complex children in Delaware, leading a Medicaid managed care organization to focus on a care coordination team approach.

• Care coordination teams consist of a nurse care coordinator and a social worker.

• The team meets with patients and families and works to prevent private-duty nursing care gaps.

• When problems occur, the team quickly resolves them.

The national nursing shortage creates challenges and safety issues for Delaware families with medically complex children who require 24-hour care.

These children have ventilators, tracheostomies, feeding tubes, and IVs. They are cared for in the home environment, but often need eight or more hours of private-duty nursing assistance each day, says Ellen McClary, LCSW, CCM, manager of care coordination at Highmark Health Options in Wilmington, DE. Highmark Health Options handles Medicaid managed care cases.

“Due to the nursing shortage within home care specifically, a lot of times the nurses do not show up at the homes, or the agencies do not have the full staffing capacity to supply the hours the children need,” McClary says. “This means the onus is on the families to fill those gaps.”

Families are trained but are not as skilled as nurses. This gap in care can lead to safety issues. Also, parents often live with hourly, daily, endless stress — and having to forgo their sleep to fill in when the private-duty nurse does not show up at night can compound their stress and anxiety.

When Highmark Health Options approves a physician’s request of a certain number of nursing hours for a pediatric patient, it is because those hours are necessary to ensure the child’s health and safety, McClary says.

“If a child needs a nurse while they sleep, and that nurse doesn’t show up, then the parent has to stay at the bedside all night to check the child’s vital signs,” she says.

This situation proved untenable for patients, so Highmark Health Options established a care coordination program in January 2017 to prevent gaps in nursing care.

The program’s early results are promising. It has identified nursing care gaps earlier, resulting in fewer downshifts — occasions when nurses do not show up for their shift.1

“It takes time to get good data, and what we’re trying to accomplish is to have fewer downshifts,” McClary says. “We’re being proactive — making sure issues are addressed earlier and have the right agencies and staffing onboard.”

A two-person care coordination team — a social worker and a nurse care coordinator — assists for children with care needs that require at least eight hours of private nursing care per day. They meet jointly with families and collaborate in assessing cases and building care plans.

“They can engage with the health plan member and get on the phone and start problem-solving,” McClary says. “We don’t want to put any additional time constraints on the family, so we make sure they don’t have to do separate visits with nurses and social workers and that they’re visiting or calling together, as a team.”

The nurse coordinator works with physicians and specialists to address all of the patients’ health needs and to make sure all doctor appointments are kept. Social work care coordinators help families navigate the system and make referrals to community resources.

“These families are really complex and have special needs children, so they’re in a state of stress all the time — 24 hours, seven days a week,” McClary says. “So it’s really important that we address all aspects of this family’s needs and issues.”

The team ensures the children have their special medications and that the family is seeing all necessary specialists. They also ensure all immunizations are up to date, that children can get to school as needed, and that the caregivers’ needs are being addressed with community mental health services and respite care.

“We attend IEP [individualized education program] meetings with them and make sure they have all therapies in place,” McClary says. “We’re trying to do full care coordination across the continuum.”

The care coordination team also makes sure nursing agencies are not missing scheduled shifts. If a nursing agency says it is short-staffed and may not be able to fill all needs, the team finds another agency to send nurses to patients’ homes.

“Some members have two to three agencies coordinating those shifts to ensure every hour that’s approved for is filled and staffed,” McClary says.

When care coordination teams learn that a private duty nurse did not show up at the scheduled time, they call the agency and report the incident as part of a data collection effort. This gives the organization an opportunity to look for trends regarding missed shifts, she says.

“Our care coordinator calls the agency to ask what happened and to see whether this is an isolated incident or whether they foresee more staffing issues on this case,” McClary says. “If the agency says they don’t have the case fully staffed or they’re having chronic staffing issues, then we have an opportunity to call additional agencies, make referrals, and see if we can get someone in there very quickly — filling in gaps.”

One possible back-up plan for emergencies or unexpected nurse call-outs involves family or friends. “They might have friends or family they know would be willing to be trained in their child’s care,” McClary says. “We don’t want the mom and dad to be the only ones providing care, without support.”

So far, families of children with complex medical needs have embraced the care coordination program, she notes.

“They feel that they are getting good response from our care coordination team when an issue arises,” she says. “We are discussing extending the model to other complex populations within our health plan, but this has not been implemented yet.”


1. McClary E. Filling the gaps: interdisciplinary care coordination to address private duty nursing downshifts in a pediatric Medicaid population. Highmark Delaware Health Options PowerPoint Poster, 2018.