Even with legislation in place designed to provide resources, several barriers exist that prevent expanded access to respite and hospice support for terminally ill pediatric populations and their families.

This is according to Kim Marcum-Mercier, registered nurse at Cincinnati Children’s Hospital. Marcum is also the founder of Sarah House, a pediatric respite and end-of-life care center.

The journey to launch Sarah House in Cincinnati, Ohio, has been several years in the making, according to Marcum. Once open, it will be the state’s first respite and hospice facility for children facing life-limiting conditions.

“At first we didn’t have a set time and date, but as we got into this more and more over the years, we’ve gotten to a point where we can’t keep spinning our wheels,” Marcum told Hospice News. “Our hope was for 2025, but that was before the pandemic hit. There’s always ups and downs, flows and ebbs, but we’re certain that this can happen if we just find the right people and resources to help put it in place. There’s a missing link for kids that have a life-limiting illness.”

Designs for Sarah House include a 10-patient room center, eight of which are designated for respite care and two family suites for end-of-life care. A goal is to have a bathroom for each room and a private entrance to an outdoor patio. Additional features include a nondenominational chapel, a wake room for families who have recently lost a child, an aquatherapy room with specialized bathing equipment, a sensory room, an arts and activities room, a dining and living room area, as well as office and consultation spaces.

Image courtesy of Sarah House's board of directors.

The center is part of the Children’s Respite Homes of America program. The idea for Sarah House came into being in 2007. The nonprofit was developed by co-founders of the Sarah Zepernick Foundation, Marcum and Amy Simpson Bennethum, staff chaplain at Cincinnati Children’s Hospital Medical Center. The foundation was established to increase childhood cancer awareness and raise funds around research efforts. Its launch was inspired by the loss of Marcum’s daughter Sarah, who died from Non-Hodgkin’s Lymphoma-Leukemia at 16-years-old. 

Sarah House’s board helped to write state legislation aimed at improving support for pediatric respite and end-of-life care. Sarah’s Law passed in 2012 as part of Ohio’s state operating budget and established billing codes for facilities operated by a licensed pediatric respite care program. The law also revised the state’s billing codes to include pediatric transitional care. 

“For all the children that fit under a different model, their parents need a break,” she said. “That’s what was missing, a model that felt like home. There’s also a population of young adults that don’t quite fit in with the seniors or pediatric groups.”

Sarah’s Law has opened up statewide opportunities for pediatric hospice and respite facility licensure, Marcum said. The law addresses a large gap of unmet need among medically fragile and complex children. Long-term care facilities in Ohio offered respite components for children who are nonverbal or nonmobile, with little recourse for the many kids who fall outside of these parameters.

Despite laying the foundation for financial support through billing codes, greater financial resources are needed to fuel the opening of Sarah House, the timing of which is yet to be determined, Marcum said. The nonprofit is currently seeking to hire a part-time fundraising employee to increase philanthropic support.

“The main reason why this hasn’t opened yet is very much a challenge of raising the money and getting the awareness out — that’s one of our main roadblocks,” she said. “There’s so much more involved than just being able to bill your services and get reimbursed.”

Sarah House has explored several options to support its opening including potential collaborative care relationships with local hospitals and health care providers, building and property donations, as well as fundraising efforts. The facility project could potentially come with a nearly $1.5 million price tag, according to Marcum.

Pediatric respite and hospice facilities often receive philanthropic support from private donors or capital campaign contributions that aid in their launch. But these resources only go so far toward sustainability, she stated.

Current Medicaid and Medicare per diem rates do not sufficiently support the full scope of interdisciplinary pediatric hospice and respite services, according to Marcum.

“There’s very little [funding] that we get from the government, from private insurance for kids that would help sustain us so we can bill for the full amount of services, and that all might get worse right now,” she told Palliative Care News. “We know kids and families need this, but it’s also being willing to take on the financial risk.”