Serious and terminally ill children and their families often have limited options when it comes to pediatric hospice, respite and palliative care. A national public awareness program is seeking to change this trend.

The National Center for Pediatric Palliative Care Homes (NCPPCH) in 2023 launched the Children’s Respite Homes of America campaign, which strives to expand access to pediatric respite and palliative care services across the country. The campaign has since grown to include 40 palliative and hospice programs across 27 states.

A new initiative recently rolled out to expand program participation to 50 new homes in 50 different geographic regions during the next five years. The program is aiming to build a larger base of resources for families nationwide with a multitude of unmet needs through three main pillars, Jonathan Cottor said, NCPPCH’s CEO and founder.

“It’s about the work being done to fill a gap,” Cottor told Hospice News. “Changing this is really going to be organized around three key pillars. The first is education and awareness of the issues in pediatric palliative care and respite. The second is advocating for change at the federal and state policy levels. The third area is community building. It’s growing this network of pioneers and programs across the United States all chasing a common vision.”

Cottor is co-founder of the Arizona-based pediatric respite and palliative care facility Ryan House, established roughly 15 years ago. He also serves on the Administration for Community Living’s Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act Advisory Council, as well as the steering committee for the National Alliance for Caregiving.

Ryan House is among the few facilities that exist in the United States specifically focusing on pediatric populations. Other inpatient pediatric facilities include California-based George Mark Children’s House, Minnesota-based Crescent Cove and LadyBug House in Seattle, Washington. Additionally, Iowa-based Mason’s Light House recently rolled out plans to launch services in coming years.

Many of these programs are operated by nonprofit organizations supported by philanthropy and fundraising, as current pediatric palliative, hospice and respite reimbursement does not support the full scope of interdisciplinary services.

Barriers to expanded availability have additionally included state licensing variations and reimbursement hurdles, as well as difficulty managing operational and staffing needs. These issues can be particularly challenging for providers in rural and tribal communities with limited resources, according to Cottor.

“It’s hard to raise the dollars of getting these homes going,” Cottor said. “It’s still a needle in a haystack compared to adult care. These medically fragile children are insanely expensive and account for more than one-third of all children’s health care dollars spent on this population. It is a very resource-intensive population. These families are also an emotional journey that is incredibly stressful.”

The Children’s Respite Homes of America program is aiming to address these myriad challenges by leveraging various expertise and insight from federal and state policymakers, industry advocates and health care professionals in the pediatric space.

The program is designed to help foster growth of pediatric hospice, palliative and respite homes by establishing a network of support. The program assists with business aspects such as articles of incorporation, bylaws, board structures and member development and guidance on how to apply for nonprofit status, Cottor stated.

“There are few programs that are up and operational serving medically fragile children,” Cottor told Hospice News. “A lot of them are doing variations of respite, transitional step-down care, palliative or hospice. We’re trying to connect the dots. Our awareness campaigns have really been about getting the word out within the professional community. We’re trying to share best practices to the community on the business side [that they can] pull together to scale, strengthen and sustain this growing network much more quickly and efficiently.”

More hospice and palliative programs are “leaning into” pediatric respite service growth as a way to better support families, Cottor said.

Among the resources that Children’s Respite Homes of America has developed is a color-coded map of programs that are established, in the process of development or those in consideration of starting services. The map is designed to allow more collaboration and build greater supportive resources for pediatric palliative and hospice programs.

A large goal is to grow nationwide coverage up to 266 pediatric respite home programs in coming years, Cottor stated. The facilities are intended to be home-like and family-friendly extensions of support for pain and symptom management as well as provide respite breaks for caregivers at no cost.

“These children’s respite homes are an extension of the home for families to have a compassionate, trusting, safe place for their child so that they can get a true break,” Cottor said. “Parents are thrust into becoming very specialized caregivers at the highest level. So change needs to happen at the highest level. We need to start engaging at the highest levels of policy groups to really try and bring light to these families’ challenges. Let’s get the get the pediatric palliative care center license seeded into the federal Social Security Act, because no common definitions exist at the federal level.”