Lightways Triples the Size of Pediatric Palliative Care Program

Joliet, Illinois-based Lightways Hospice and Serious Illness Care has nearly tripled the capacity of its pediatric palliative care program, expanding in geography, staff, and patient census.

The nonprofit’s pediatric program now has capacity for 120 patients. Lightways’ current pediatric census has risen to 100 patients, up from 40. Additionally, the program’s service area has extended to the City of Chicago and other areas further north and northwest, according to CEO Mary Kay Sheehan.

Lightways is taking on the former pediatric patients of JourneyCare Hospice, which was acquired by Addus HomeCare Corp (NASDAQ: ADUS) in January in an $85 million deal. Addus does not offer pediatric services.

“They called us because they knew we did [pediatric palliative care] and asked if we would take on the children,” Sheehan told Hospice News. “I said, of course, and then realized how big an area it was and that no one else in northern Illinois does it. So that’s when we really expanded.”

A grant from the Addus Foundation, the company’s charitable arm, helped finance the Lightways expansion. The company assisted with transitioning patients to Lightways, as well as a contingent of former staff from JourneyCare’s pediatric services. The process was “smooth for patients and families,” and was completed within 60 days, according to Sheehan.

Beyond the Addus grant, Lightways is conducting a fundraising campaign to gain further financial support. This is essential given the lack of a robust reimbursement model for palliative care, including pediatrics, Sheehan said. The organization’s remaining costs will be covered by revenue from its hospice operations.

A wide range of hospice providers rely on philanthropy to support palliative care services for both children and adults. While some value-based payment models have provided some pathways for reimbursement, to date these have been oriented almost exclusively around the needs of seniors.

The Affordable Care Act requires states to offer Medicaid coverage for concurrent hospice and curative care for pediatric patients, but those services still require a six-month terminal prognosis for eligibility.

The bulk of the care that seriously and terminally ill children receive comes from primary care or subspecialty providers, and many experience frequent hospitalizations, according to research by the American Academy of Pediatrics (AAP). Few have access to home- and community-based services, and even fewer receive them in a timely manner, AAP found.

But some hope this may soon change in Lightways’ home state of Illinois, which enacted a law last summer to create an in-home palliative care benefit for children facing life-limiting conditions within its Medicaid program. 

Starting in early 2023, patients 21-years-old or younger will be eligible to enroll in the state-funded medical assistance program if they have been diagnosed with a serious illness by a primary care physician or specialist. Private insurers will be required to offer a similar benefit in Illinois starting in 2024, according to the legislation.

Sheehan anticipates that the pediatric program will no longer be dependent on philanthropic donations by the end of the first quarter, she told Hospice News.

“My plan is that if if I can get the philanthropic support to cover 2022 and part of the first quarter of 2023,” Sheehan said. “I’m really hopeful that they’ll get it implemented fairly smoothly by second quarter, and that it will cover most of the costs.” 

Founded as Joliet Area Community Hospice, Lightways rebranded last year to reflect their expanded range of services, including pediatric care.

The organization is currently participating in the Illinois House Call Project, an initiative by the Home Centered Care Institute (HCCI), through which Lightways will explore the prospect of launching a home-based primary care service.