Vol. 20 •Issue 27 • Page 17
No Place Like Home
Program Helps Young Patients Return to Their Families Sooner
Within the walls of the Elizabeth Seton Pediatric Center in New York City, medically fragile children with a wide range of complex conditions and disabilities live in seven small, self-sufficient neighborhoods that provide round-the-clock multidisciplinary care. While the employees do all they can to make the environment as warm and personalized as possible, there’s really no place like home.
With that thought in mind, in June, leaders at the center launched a long-term home health care program that has allowed many residents to leave the facility and return to their families or to live at home for the first time in their short lives.
With the opening of this program, Elizabeth Seton’s staff hopes to provide a model of pediatric home health services to assure continuity of care through a seamless transition from the inpatient setting to the home. The program offers an array of professional services, including: nursing; home health aides, homemakers and housekeepers; physical, occupational, speech and respiratory therapy; nutrition; and social work.
The home care program provides its services through a special waiver known as the Lombardi Program, named after Tarky Lombardi, a state senator who championed the legislation that made it possible.
Also known as a Nursing Home Without Walls, Lombardi programs are designed to provide comprehensive services for clients who would be in an institutional setting if not for the supportive services provided in the home; and those services must cost less than 75 percent of the usual cost of nursing home care.
“The children we serve under this program receive all of the services they would be eligible for in the inpatient setting, but those services are delivered in the family home,” explained Patricia Shafer, BSN, RN, director of home care. “The majority of them attend school, so we deliver our services after they come home.”
In order to receive services through this Lombardi program, children must meet stringent criteria. “The application process is very intensive and complex, with a good deal of paperwork and an on-site verification visit as well,” Shafer said. “Most of our children have been discharged from the Elizabeth Seton Pediatric Center, but others have been referred from local hospitals, clinics or other case management/social work programs.
“So far in our caseload, we have about 30 children who are medically fragile and may have other diagnoses like mental retardation and autism.”
Easing the Transition
Djina Alce, LCSW, a social worker who was assigned to the Elizabeth Seton Pediatric Center before transferring to the home care program, acknowledged that life truly changes when children leave an institution and return to their families.
“The way parents are when their children are living at the center is very different from the way they are when the children come home,” she said. “Instead of visiting their children for a few hours in the evening or on the weekend, Mom and Dad are now the primary caregivers who must deal with a number of challenges every day.”
Early and ongoing collaboration among all members of the treatment team, including the parents, leads to successful reintegration into the community.
“The day the child is admitted to Elizabeth Seton, we’re planning for discharge,” Shafer said. “The entire team rallies around the child and the family to plan for the future.”
Social workers play an important role in assessing the family’s readiness to maintain the child at home. “Are the family members willing and able to cope with the children’s needs and manage the complex care they require?” Alce queried. “In the home, another social worker like me will follow up regularly, conducting an ongoing assessment of the family’s ability to cope. We help bridge the transition to home and reinforce what they already know about their child and his care.”
Helping Families Cope
Even when the team feels a family is ready to meet the challenges of care in the home, there are times when it all seems too much.
“Parents can become overwhelmed with all the medical appointments, care management, equipment and supplies that are in addition to the usual parenting responsibilities,” Alce said. “Because it’s so much follow-up for these parents, we emphasize the home care staff is there whenever they need us.”
Many times, the therapist who provides services in the home is the same professional who treated the child at the Elizabeth Seton Pediatric Center. It’s reassuring to the family to continue interactions with the professionals they know and trust.
Respiratory therapists have a large role in educating families of children who have impaired airways. “When we know a child is going to be discharged from Elizabeth Seton Pediatric Center, we get the parents involved very quickly with trach care,” said Tammie Thacker, BS, RRT. “We talk about the correct humidification for children on trachs so there is not too much or too little. We make sure they know the basics of changing the trach tube in an emergency situation; and, of course, they’re trained in CPR before taking the child home.”
Thacker and her respiratory colleagues provide information families can put into practice immediately. “We in-service parents on the proper suction techniques and teach hygiene measures so the child doesn’t develop an infection,” she said. “We do education from the standpoint of airway secretions and clearance.”
RTs also teach warning signs that indicate a child is getting into trouble. “If the child is hooked up to a pulse oximeter, we tell parents, ‘You’ll see desaturation no matter how high you turn up the oxygen when there’s a mucus plug,'” Thacker said. “If you get a lot of resistance when you attach the Ambu bag to oxygenate the child before suctioning or if the child is starting to look dusky, that can indicate a plug. We’ll instruct them to instill normal saline to help break up the plug.”
Nurse Case Management
RTs appreciate home care nurses like Alma Brown, RN, who serve as case managers, smoothing the way for family members who want to see their children succeed at home, in school and in the community. Their support takes a tremendous burden off mothers in particular, because they’re typically the ones who handle the day-to-day details of the child’s health.
“Our nurses play a key role in helping parents coordinate medical appointments, therapy visits and other events so the mother doesn’t feel she is the only one with all of that responsibility on her shoulders,” Shafer said. “We provide transportation to those appointments and can arrange for home modifications such as widening doorways to improve access for a new wheelchair.”
Home care nurses also supervise the hourly care provided by the home health aides who make a real difference in the lives of the children and families they serve.
“They can do just about every aspect of the child’s care to make him comfortable and happy throughout the day,” Brown said. “That includes ADLs, errands and preparing meals.”
Sandy Keefe is a California practitioner.