Lawmakers in several states have proposed legislation supporting the establishment of pediatric hospice, respite and palliative care facilities in recent years. 

This could fuel more sustainable growth and access for seriously ill children and youths across the country.

Pediatric patients and their families lack options when it comes to person-centered environments that address their unique physical, emotional and psychosocial needs, according to Katie Lindenfelser, founder of Crescent Cove. The Minnesota-based pediatric hospice and respite care provider was established as a nonprofit in 2009. The journey to begin serving patients took nine years, with Crescent Cove opening in May 2018. It became the first respite and hospice home in the Midwest and third nationwide at the time.

Greater legislative momentum is needed to create meaningful change around support for sick and dying pediatric populations, Lindenfelser said.

“There is a need to support children who have life-threatening conditions, complex and chronic conditions or medical complexities,” Lindenfelser told Hospice News. “It crosses political and economic lines and religious perspectives. It’s important to remember that people of all different styles are touched by this. It’s an area where we can actually come together with a common goal of supporting families and children with a beautiful, sacred place for them to die and to live.”

Common legislative threads

One national study found that an estimated 45% of pediatric palliative care patients receive home-based services within one year of death, reported the National Alliance for Care at Home. Another report from Pediatric Research estimated that 1-in-100 children are cared for in home settings annually.

However, a large proportion of pediatric patients die in children’s hospital settings, the American Academy of Pediatrics reported.

These trends leave little recourse for families in need of respite and caregiving support throughout the course of a child’s illness trajectory, according to Lindenfelser.

Working with legislators to change state licensure was central to Crescent Cove’s existence, the organization told Hospice News in an email. Its founders collaborated with state legislators to establish laws that defined pediatric hospice care eligibility requirements, quality standards and reimbursement structures for providers. Introduced in 2016, the bill passed in 2023 and made Minnesota the first state to allow facilities to receive state funding for services provided at a pediatric respite and hospice home.

Founders of a new Iowa-based pediatric hospice facility also recently pushed legislation forward to help improve the availability of facility-based end-of-life support for terminally ill children and their families. Mason’s Light House is anticipated to open in 2027 or 2028 and will be the state’s first pediatric hospice and respite care center. The nonprofit has supported Mason’s Law, legislation that recently passed in Iowa designed to establish regulatory guidelines for pediatric hospice and palliative care centers.

Even with legislation in place designed to provide resources, several barriers exist that prevent expanded access for terminally ill pediatric populations and their families, according to Kim Marcum-Mercier, registered nurse at Cincinnati Children’s Hospital. Marcum is also the founder of the nonprofit Sarah House, a pediatric respite and end-of-life care center.

Once launched, Sarah House will be located in Cincinnati, Ohio, and marks the first facility of its kind in the state. The process to open has been several years in the making, Marcum indicated. Board members of Sarah House 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.

“It’s very much been a challenge to raise the money,” Marcum told Hospice News. “We were one of the first to establish the pediatric palliative care licensing with billing codes so that anybody can open up a pediatric respite facility and have ways to bill for these services. Nothing existed, and we were shocked by that when there’s families that need this.”

Developing this type of legislation takes careful consideration, particularly addressing “grey areas” of what qualifies as a terminal or life-limiting condition in pediatric populations, Lindenfelser indicated. Establishing clear eligibility guidelines is crucial, she added.

Focusing on conditions within the four quadrants of pediatric palliative care can be a north star for guiding state policies, according to Lindenfelser. The quadrants include heart and lung disease, various types of cancers, neurodegenerative and neurological conditions, as well as chromosomal or rare diseases. Patients who meet these criteria face minimal likelihood of reaching adulthood.

Adding to eligibility and enrollment complexities in the pediatric realm is an ever-present struggle of care coordination, she stated. Medically fragile children often receive care across several types of specialties, with most patients on average seeing up to a dozen or more providers simultaneously, Lindenfelser said. This can make referrals and care transitions difficult to navigate.

Most state legislation thus far has focused on establishing patient eligibility, models of care, quality measures, clinical care licensing requirements and reimbursement, according to Jonathan Cottor. He co-founded the Arizona-based pediatric respite and palliative care facility Ryan House and is also CEO and founder of the National Center for Pediatric Palliative Care Homes (NCPPCH).

NPPCH 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. Ultimately, the organization’s goal is to help establish 50 homes in 50 communities during the next five years.

Currently seven established pediatric hospice homes exist in the United States, according to a map developed by the Children’s Respite Homes of America that tracks programs in various stages of development. These include Crescent Cove, Ryan House, California-based George Mark Children’s House, Pope’s Place in Washington, A Rosie Place for Children in Indiana, Illinois-based Almost Home Kids and Brades Place in Utah.

More than a dozen pioneer programs have begun conversations about developing a pediatric hospice facility, including providers in Colorado, Florida, Hawaii and Massachusetts, Michigan and Texas, among others. Nearly 20 programs have emerged and formed organizations to support operations, predominantly consisting of nonprofits with boards and committees dedicated to raising philanthropic support and awareness.

“Ultimately these providers need to raise a few million dollars to put a shovel in the ground and actually open one of these pediatric houses,” Cottor told Hospice News. “We have programs signing on wanting this model of care to be successful in their community. It’s collaborating on patient data, resources and best practices to share what’s going on in children’s respite homes. It’s about community-building and offering support on the business side, even down to the articles of incorporation, board recruitment and creating missions to scale, strengthen and sustain these services more quickly to those in need.”

Barriers to growth

Common licensing policies and procedures, insufficient funding models and a death-adverse culture serve as three main barriers curbing greater availability of facility-based pediatric hospice and respite, Lindenfelser said.

“We’re all trying to sort out and create a common license in our country, because from state-to-state we all have to find the right license to function and provide both respite and end-of-life care,” Lindenfelser said. “There isn’t a structured financial model to support ongoing revenue needs of a home like this in each state. So the first step is creating a revenue model. It’s also about bringing attention in a way that is going to be productive for us as a culture, as a community, to make necessary changes so that children and families can live their best lives and so that there isn’t trauma around death, care transitions and health condition uncertainties.”

Pediatric respite, hospice and palliative care are offered at no cost to patients and their families, which is a unique model that comes with financial headwinds in the face of lagging reimbursement, she stated.

Many providers rely on philanthropic support to establish and grow their pediatric programs. Case in point, Crescent Cove was 100% reliant on fundraising efforts to support its operations when it first launched, according to Lindenfelser.

Majority of private health insurance payers do not reimburse for these services, and Medicaid coverage does not sufficiently cover the full scope of interdisciplinary facility-based pediatric hospice care. This leaves providers with few financial resources to provide this type of support.

Pediatric hospice and palliative care is typically covered through individual state waiver programs that have widespread variations in requirements and payment mechanisms.

Medicaid and Children’s Health Insurance Program (CHIP) reimbursement in most cases covers children, adolescents and young adults up to 21 years old, though some age range variations exist in certain states. Unlike adult populations, pediatric patients with life-limiting conditions are eligible to receive hospice concurrently alongside curative care.

Medicaid waivers predominantly focus on community-based services primarily provided in the home. Coverage in general does not include provision of medications, durable medical equipment, personal care assistants, home health aides or financial assistance, according to research published in the Journal of Pediatric Health Care.

Any costs for services not reimbursed through the state funding, Medicaid, CHIP or private insurance become the responsibility of the hospice provider. This leaves cost as the largest barrier preventing sustainable program development, particularly when “initial monetary provision and funding periods end,” according to the researchers.

A federally established set of guidelines is needed to move the needle forward, according to Lindenfelser.

Having a nationally recognized model for pediatric respite and hospice homes could help to alleviate financial, practical and logistical challenges among families and providers alike, she said. Navigating a fragmented health care system, various medical treatments and appointments, as well as an active family lifestyle alongside a terminal illness can hinder quality experiences. Having a federally established model could go a long way in terms of reverberating economic impacts, Lindenfelser indicated.

“At the national level, it’s coming up with a common language for licensure that can be integrated across each of our states,” she told Hospice News. “There might be a flow of payment recognizing how vital respite is for families to sustain and negating other issues that come with the demands of caring for a child who has a life threatening condition. When we think of all the different homes and the ability for more homes to be open to ensure that we maintain this kind of an environment that is healing to be in. It’s different from hospitals that face different restrictions, infection control policies and things like that. We have a little more flexibility with layout and design, and that’s really important for us to maintain.”