New Legislation Provides Reimbursement Boost to Community-Based Pediatric Palliative Care

There’s growing momentum behind the movement to finance serious illness care for children.

The Illinois General Assembly recently passed a bill that requires private insurers and Medicaid plans in the state to include a community-based pediatric palliative and hospice benefit. Creating new revenue opportunities to sustain palliative care at a state level could open doors to crafting an established national benefit.

The bill (SB.3819), which amends the State Employees Group Insurance Act of 1971, expands access to pediatric palliative and hospice care for patients and provides a reimbursement path for providers. Under its parameters, state and private payers must provide coverage for community-based pediatric hospice and palliative care.

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The bill builds upon previous legislation passed last year that made Illinois the first state to approve an in-home pediatric palliative care benefit. In concordance with the terms of the Pediatric Palliative Care Act, the recently passed bill allows eligible children to pursue curative treatments and disease-directed therapies in tandem with community-based hospice and palliative services.

Having reimbursement support is vitally important for providers, while also a step towards improving access for patients and families, according to Sara Dado, senior director of clinical programs for Lightways Hospice and Serious Illness Care.

“It sends a message that this type of care is important, that the way in which we care for our sickest kids does matter,” Dado told Hospice News in an email. “It also continues to support one of our overall goals of improving access to care for these kids. The more pathways to revenue opportunities that we provide for the providers, the easier it will be for them to take on these services.”

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The state legislature additionally outlines definitions for “palliative care” and “serious illness” care. Providers will be required to meet standards of care, an important measure to ensure patients receive high-quality care, Dado stated.

The bill has been a decade in the making, according to Dado, with providers working in concert with legislators advocating for the needs of seriously and terminally ill children.

State Sen. Laura Fine (D-9th District) introduced the bill on Jan. 21. Bipartisan co-sponsors included nine state representatives and 24 state senators. The new law takes effect Jan. 1 next year. It requires health insurance or managed care plans that are amended, delivered, issued, or renewed on or after Jan. 1, 2024, to provide coverage of the benefit.

In Illinois and elsewhere, a lack of an appropriate, pediatric-focused reimbursement structure has been a significant barrier for children and their families.

As much as 500,000 children experience life-limiting illnesses each year, but only 1 in 10 receive hospice care, according to a JAMA Network Open study from last year.

Roughly three-quarters of hospices nationwide serve pediatric patients, but most care for less than 10 children annually and few have dedicated pediatric programs, according to the JAMA Network research.

Many hospices lack sufficient funding to provide pediatric palliative care in the home, often relying heavily on fundraising and philanthropic support. In addition, providers often lack enough trained staff to provide these services.

A lack of reimbursement and trained professionals has left providers seeking to expand pediatric services in unsustainable spots, according to Kristin James, executive director of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC).

“Too many hospices are doing this philanthropically. That’s not sustainable, and it’s not high quality either,” James told Hospice News at the Palliative Care Conference in Chicago. “Because then you can’t really pay your staff to go to training, and you can’t pay to have the [specialty] staff.”

Kristin James, executive director of the Greater Illinois Pediatric Palliative Care Coalition, speaks at the Palliative Care Conference on April 28, 2022. | Aging Media Network photo

The needs of seriously and terminally ill children can be more complex compared to adult patients. Providers need specialist knowledge regarding medication dosing, specialized equipment and assistance with family dynamics and support.

“Every child deserves to optimize their quality of life, [but] less than 1% of hospices have been willing to care for children,” James continued. “That means kids are left in the hospital longer, have more hospitalizations, more emergency room visits – and die suffering.”

Community-based pediatric palliative services help to prevent hospitalizations, improving patients’ quality of life while reducing health care costs.

Movement on a state level to expand reimbursement for pediatric palliative care could have wider implications towards the value proposition to establish a national palliative care benefit, according to Dado. The ability to demonstrate cost-savings while also improving quality and access to care is key to driving change, she continued.

While value-based care payment models have provided some reimbursement avenues, to date, these have been oriented almost exclusively around the needs of seniors.

Currently, the provision of pediatric hospice and palliative care is included in the Affordable Care Act, which allows patients 21 and under to receive these services concurrently with curative treatments under state Medicaid children health insurance programs.

States are required to offer Medicaid coverage of concurrent hospice and curative care for pediatric patients, but those services still require a six-month terminal prognosis for eligibility. These determinations can be even more difficult and challenging when it comes to children than in adults.

“On the broader scale, all of these moves are really groundbreaking and crucial to the larger overall goal of crafting a palliative care benefit both at the state and national level for all ages,” Dado said. “Palliative care saves money and improves quality of life. Every step we take toward a more comprehensive benefit that improves access to care for all and incentivizes providers to provide this important type of care in the home setting, the closer and closer we get to that goal.”

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