Lightways Hospice and Serious Illness Care Announces Expansion of its Pediatric Program to Meet Illinois' Critical Need

Lightways, Illinois' largest not-for-profit provider of hospice and serious illness care, today announced the expansion of its pediatric program to include an additional eight staff members and 80 seriously ill children previously served by the recently-disbanded pediatric program at JourneyCare in Barrington. The move is seen as a lifeline to families on the verge of losing access to the in-home hospice and palliative care on which they rely.

"There's no question that at-home hospice and palliative care improves the quality of life for seriously and terminally ill children and their families," said Mary Kay Sheehan, RN, MSN, MBA, Chief Executive Officer, Lightways Hospice and Serious Illness Care. "Not only do these services reduce suffering, they also enhance the quality of the time families are able to spend together."

While studies show that in-home hospice and palliative care typically results in shorter hospitalizations and less frequent visits to the emergency room for seriously sick and dying children, many providers in Illinois - and across the nation - do not provide pediatric hospice services. This is due in large part to the limited Medicaid and private insurance reimbursement currently available. Lack of access to specialized training for staff tasked with serving the complex needs of this vulnerable population is another barrier.

Now the only hospice and palliative care provider in northern Illinois to offer specialized pediatric care, Lightways' admittance of JourneyCare's youngest patients triples the size of its pediatric program and expands its geographic reach into Chicago's Northern suburbs and the city itself. The move comes with a heavy financial lift for the not-for-profit but, according to Sheehan, "a moral imperative."

"We have an incredible team that provides outstanding pediatric care every day. We could not, and would not, leave these children without care. But for this to be sustainable, we urgently need community support," said Sheehan.

Lightways has established a Little Lights Fund for donors interested in helping to ensure that children and families in need of hospice and palliative care can receive it. The restricted fund will be used to cover an estimated $750,000 to $1,000,000 in non-reimbursed, expenses associated with Lightways' pediatric program.

Recently passed legislation in the state of Illinois will require private insurers and Medicaid plans to include a pediatric palliative care and hospice benefit. The mandate does not go into effect until Jan. 1, 2023, for Medicaid and a full year later for private insurers. Even then, many facets of best practice pediatric care, including in-home visits by child life specialists and complementary therapists, such as music and massage therapists, will not be covered.

"We're hopeful that, when enacted, Illinois' Pediatric Palliative Care Act will not only expand families' access to these vital services, it will also make it feasible for other hospice providers to join us in providing this critical care," said Sheehan. "But for these sick and dying children, and others following closely in their footsteps, the need is now."