Gaining trust: Partners for Children celebrates first year

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Currently, there are hundreds of Michigan children with complex conditions who receive care from multiple health care specialists. These experts include neurologists, rehabilitation specialists, gastroenterologists, lung specialists, pediatric surgeons, urologists, mental health providers and more.

Many of these children also have limited mobility, take more than nine medications daily, and depend on technology and equipment such as feeding tubes or respiratory devices to help them survive and integrate into their families and communities. For the majority of parents of children with such complex illnesses, life revolves around frequent trips to specialty clinics, pediatrician offices or emergency departments that often result in hospital stays.

“It’s a cycle that can be overwhelming, frustrating, time-consuming and filled with anxiety,” said Natalia Simon, program manager for Partners for Children (PFC) at Michigan Medicine.

PFC is a program designed with these children and families in mind. It is run through Michigan Medicine with the support from the Michigan Health Endowment Fund and Hospice of Michigan.

A special milestone

This month, PFC is celebrating its first anniversary. The goal of the program is to provide at-home care for children with severe and complex conditions.

“By transitioning to at-home care with the help of visits from nurse practitioners and social workers, we are able to provide 24/7 access to a provider, while seamlessly coordinating each child’s complex care,” said Kenneth Pituch, M.D., the visionary behind the program and its medical director.

The initial objective was to enroll 100 children in PFC, and that goal was reached earlier this summer. For many patients and families, the program has been life-changing.

“For the first time in his life, we were able to stay home for all four of our important holidays: our little boy’s birthday, Halloween, Thanksgiving and Christmas!” said one parent in the program.

Additionally, continuity of care is a major perk provided by PFC.

“Families of children who have complex conditions face many challenges, from logistics to finances to psychosocial issues,” said Simon. “We help them overcome those issues and make their lives easier. For instance, coordinating care with specialists is assumed by the program itself.”

Providing unique support

A social worker and nurse practitioner, backed by PFC physicians Pituch and Tsovinar Sorkin, M.D., provide an initial home visit to learn about a child’s medical and social history, go over the program design and answer questions.

Follow-up visits are then scheduled. From that point on, the program includes ancillary support from hospital-based specialists in nutrition, pharmacy, rehabilitation medicine and education. Should a child need inpatient care at any point, PFC’s nurse practitioners and physicians interact with specialists at the hospital, giving them an opportunity to discuss any unique needs.

“We do a lot of work behind-the-scenes,” said Stacey Hudson, PFC nurse practitioner. “When a PFC child goes to the ED or a specialist appointment, both providers and parents know what to expect, which questions to ask and who to call for support.”

That can make all the difference in having a successful visit.

“It was so helpful to have such coordination before her GI appointment,” said one parent recently. “Usually an appointment might take five hours or more and this time we were out in less than three!”

A proactive approach

Consistent communication between providers and parents builds a relationship and trust in PFC.

“During a time of crisis, whether it is 1 p.m. or 1 a.m., parents need to be able to talk to a person who understands their child’s complexity, and who is willing to spend time brainstorming solutions that may have not been tried before,” Simon said.

The unique nature of in-home visits also help patients receive exceptional care.

“When we talk to parents outside clinic appointments or emergency situations — in the comfort of their own home — they are able to more effectively think about their day-to-day needs,” said Elizabeth Estrada, PFC social worker. “We prompt them to ask the right questions or request assistance that might enhance their child’s quality of life — things that often do not come up during appointments.”

Building on Year 1

As its second year begins, PFC hopes to grow from its successful first 12 months.

“We hope to show that everyone involved in the program has benefited from it,” Pituch said. “We hear feedback that parents appreciate receiving guidance from someone who knows their child’s specific history. By spending more time at home, the child’s quality of life is also improving.”

In fact, PFC is currently exploring options to provide complementary therapies at home — including art, music and massage — to enhance their lives even more.

“Our colleagues are very interested in this collaboration, as they also seek the best possible outcomes for mutual patients,” Pituch said. “Payers across the country are also realizing more and more that programs like ours offer care in a sustainable and cost-effective way. As more organizations get familiar with our program, our hope is to ultimately provide similar services to even more children across Michigan who have chronic complex needs.”

As Colleen Dolan, a PFC nurse practitioner, said, it’s a program that works: “Seeing the joy on the faces of both our children and their families when we walk through the door is so rewarding. Quality of life is the most important thing to us.”