St. Mary’s Home Care Pioneers Program for Children with Severe Feeding Disorders

Children suffer from feeding disorders for a range of reasons. Feeding and/or swallowing disorders may require a feeding tube in place of oral food intake to ensure that a patient receives adequate nutrition. Physical health problems, behavioral/sensory food aversions and other disorders can be severe, life threatening and dangerous at a time — early childhood — when nutrition is especially vital for brain and body development, as well as social and emotional growth.

Skilled nursing and therapy services to treat these serious conditions are being pioneered by home care providers with long-standing expertise and specialization in this type of care. These services keep patients healthy and safe. They also allow children to receive care at home with family, which is also vital to a child’s social and emotional health.

New York-City and Long Island-based St. Mary’s Home Care is advancing this work using innovative technologies and a comprehensive program of skilled services.

St. Mary’s is also working to integrate these practices more widely, in coordination with hospitals, under the Delivery System Reform Incentive Payment (DSRIP) program, using advanced technologies like telehealth remote monitoring.

Design and Outcomes

Initial outcomes from the St. Mary’s Home Care Telehealth Feeding Program show universal patient and caregiver satisfaction, with three out of 11 patients successfully treated and weaned off feeding tubes, and nearly all steadily gaining weight.

“Carry-over” is a key tenet of therapy — to ensure that patients are able to sustain skills, techniques and practices to apply them in all situations. For children with feeding disorders, this involves a parent or other household caregiver maintaining continuity of therapies to help children get the nutrition they need and to progress, which is where remote-monitoring technologies can be a powerful tool.

Through St. Mary’s program, speech therapies and other skilled services are provided in the home under a comprehensive care plan. But St. Mary’s also uses remote patient monitoring to extend the reach of these therapies and ensure carry-over as these technologies allow therapists to remotely observe parents feeding their children in real-time using techniques learned in therapy. Parents can also receive automated reminders to report on changes in a patient’s status.

This technology is paired with specialized feeding supports and clinical interventions: comprehensive evaluations, an RN review of the patient’s medications and side effects, environmental assessments by home care speech therapists to reduce distractions or improve seating or positioning at feedings, diet assessments and emergency management to ensure that patients and caregivers recognize signs and symptoms of aspiration or other emergencies that require immediate action.

DSRIP, First 1,000 Days

DSRIP’s pediatric quality indicators and project measures are an important way to support this kind of work directly and on a broader scale, along with critically needed state investment and program supports at a time when funding inequities exist for pediatric home care services, as previously reported in HCA’s Capitol Report.

Meanwhile, the state has launched a “First 1,000 Days” initiative recognizing that a child’s first three years are the most crucial years of development, calling for an all-encompassing pediatric health care model.

These and other opportunities must recognize the role of pediatric home care specialty programs, like the St. Mary’s program, which are innovating to improve lives and children’s health.

Meet Lily and Lindsay

Lindsay Block is a Master’s-prepared Pediatric Speech Pathologist who has worked for St. Mary’s Home Care for two years. She began her career in the nursing facility setting but found she missed working with children, and so she transitioned to St. Mary’s Home Care. She is particularly gratified when she is able to help a child grow and progress — children like two-year-old Lily Lingner.

Lily was born with gastroschisis, a rare abdominal wall defect that occurs in only 1 of every 2,500 children born in the U.S. The disorder causes the digestive organs to form outside of the abdomen. Lily spent the first months of her life in specialized children’s hospitals in both Philadelphia and New York. She was then referred to the Inpatient Intensive Feeding program at St. Mary’s Hospital where she spent another three months before becoming strong enough to be discharged with a referral for further treatment at home. At that time, she was eleven months old and still solely being tube fed.

Lily’s mom, Meghan, was determined to have Lily continue the intensive feeding therapy she had received in the acute and inpatient facilities, so that Lily would continue to make progress at home. She was referred to an Early Intervention (EI) program, but the program was not able to provide the intensive and specific feeding-focused therapy Lily needed, which is why she was referred to St. Mary’s Home Care for speech therapy.

At start of care, in August 2018, Lily weighed 16 pounds, 12 ounces. Lindsay started working with her five times a week, slowly gaining her trust while she introduced Lily to the experience of eating food by mouth. Lindsay also helped Lily’s caregivers by suggesting helpful changes to reduce distractions. She showed them how to encourage Lily to eat, as well as how to increase the quantity and variety of food types she would eat.

Home Telehealth

In December 2018, Lindsay also began to use St. Mary’s Telehealth Feeding platform (see related article).

Using a company-issued iPad, Lindsay was able to record Lily’s food intake, including data on textures, types of food, and Lily’s acceptance rate of foods she liked and those she disliked.

By the end of December, Lindsay was able to assist in increasing Lily’s overall intake which then led Lily’s physician to reduce her tube feeds. By February 2019, Lily was able to eat regular food, started gaining weight, and was fully weaned off her feeding tube. By July of this year she weighed 22 pounds and was able to have her feeding tube completely removed.

“The platform has allowed me to track patient status, appropriately document amounts of food consumed during sessions, and observe patterns of both food intake and negative behaviors associated with particular food items,” says Lindsay about the platform.

“It’s a more precise way of documenting and reporting. Since I am able to work in conjunction with Lily’s mother and father and additional caregivers, we have a protocol in place that has allowed Lily to have consistency in her feeding experience.”

The home care program is expanding use of the platform to connect with caregivers through video visits so that home care therapists can remotely watch and support caregivers when they are on their own at home conducting feeding sessions. The technology also provides a way for caregivers and therapists to stay in touch in between visits through the use of “push notification” reminders and text messaging, essentially allowing caregivers to reach out at the touch of a button.

“I was so happy to find St. Mary’s Home Care and our wonderful Speech Therapist, Lindsay,” says Lily’s mom, Meghan. “Lily was able to continue her care at home, surrounded by her father, brother and other loving family members. Her therapy started the same month she came home from St. Mary’s Hospital.”

“I was able to sit side-by-side with Lindsay and learn skills on how to approach feedings with Lily,” she added. “Lindsay helped me develop a meal plan, menus, and introduced me to helpful technology to keep track of Lily’s progress.”

“I don’t know what I would have done without home care services. It is scary to think about the lack of other resources available, especially when families are under the stress of caring for a sick child with other siblings at home and work responsibilities. Having the Speech Therapist come to the house eased Lily’s transition home, helped her make continual progress, and certainly reduced our stress and anxiety.”