• Article
  • July 19, 2018

Pediatric Long-term Care Program Prepares Patients and Families for Home

Blythedale Children's Hospital program strives to take the "long" out of long-term care. 

Blythedale Children's Hospital in Valhalla, New York, opened the Steven and Alexandra Cohen Pediatric Long-term Care Pavilion a little more than a year ago to address the highly specialized needs of infants and children who require extended medical care and rehabilitation. During that time, about half of the Pavilion's patients have eventually been able to go home.

Children's Hospitals Today caught up with Larry Levine, president and CEO of Blythedale Children's Hospital, to discuss the organization's pediatric long-term care unit.

What does the concept of long-term care mean for kids?

When you think about long-term care, what's the first thing you think about? You think about an elderly patient—people usually don't think about kids. But kids have strokes; kids are born with major respiratory and feeding problems.

Fortunately, not many children have these problems; but when they do, you really want the most expert, best pediatric model around. There are very few hospitals or health care facilities that cater to kids or provide dedicated units just for pediatric long-term care.

We're trying to raise awareness among children's hospitals, as well as other mixed-use facilities that are largely adult-focused, to develop a more integrated pediatric-centric model. This model should have an interdisciplinary care team that looks at social and medical aspects of the patient's health, as well as pediatric experts in these mixed-use units that focus on kids.

We're fulfilling the most important goal in this whole model, and that is to do everything possible to get these patients home and reunited with their families. We think that's a significant departure from what other long-term care facilities do.

Describe your team's approach within this long-term care model.

Our work is guided by three principles:

Almost no child's potential is fully known—particularly when a child is small. The kids in the unit are very young, and we have many infants in that population. Unless you have an intensive evaluation, you wouldn't know what their full potential can be. We conduct a multidisciplinary assessment, and then formulate a plan to understand how far this child can go beyond where they are.

Our patients are kids. While many of these kids have lifelong challenges medically and physically, we recognize they are kids. We have a 37,000-square-foot school they can attend along with all Blythedale children. We try to integrate child life and therapeutic recreation into the care planning of every long-term care patient.

We make sure that all the major holidays and special events are celebrated—not only by the child and their family, but also by all the children. We bring in farm animals in spring and summer, and we have a petting zoo. It's a festive and lively environment.

Reintegrate of the family. Many of these kids have chronic issues, so we try to get the parents to reunite with their children and watch their progress. We've developed a transportation network where we subsidize or provide free transportation to these families.

We have an active parent training program, because insurance and Medicaid don't provide 24-hour nursing. Many of the parents want to bring their kids home but have to be trained to help take care of their kids—give them medicines, look at vital signs and so on. We give parents the confidence to do that through our extensive parent training program.

How important is family involvement in the care and growth of these children?

Many times, these children who come here were born weighing maybe one or two pounds and have been hooked up to monitors and ventilators. Often the first time that their parents are able to hold them is here at Blythedale. It's a daunting task.

Our work begins to get the parents to bond with their children—understand more about their child's disease and the prognosis. We teach them how to give their child a bath and how to look at certain vital signs—more hands-on care.

The days of 24-hour nursing care are essentially over. Parents and other extended family members have to provide some of the care for these children if we're going to get them home. Integrating them as soon as possible with their child is a vital part of their recovery and growth.

Send questions or comments to magazine@childrenshospitals.org.