Connecticut-based Regional Hospice is expanding its pediatric program following receipt of a recent $2 million grant.

The grant came from the state government and will go a long way in terms of the ability to hire specialized pediatric hospice care professionals, said ToniAnn Marchione, president and CEO of Regional Hospice.

Additionally, the funds will allow for expanded community, referral and clinical education efforts, Marchione indicated.

“With [this] funding for pediatrics, we are able to spend more money on education and the staffing we need to really provide a good program,” Marchione told Hospice News. “Pediatric nurses come at a higher cost because they are specialized and they also can’t do the same productivity level as an adult nurse. [Also,] increasing recognition and understanding of palliative and hospice care and concurrent care could be transformative. We are more than excited to have the opportunity to expand our program, even to be able to just sustain what we do.”

Regional Hospice provides care to adult and pediatric patients, as well as bereavement. Founded in 1983, the nonprofit’s service region spans three counties in Connecticut. Regional Hospice partners with Nuvance Health to provide services across the health system’s hospitals in three cities in western Connecticut. Additionally, the organization offers all four levels of hospice care at its Center for Comfort Care & Healing, a 12-suite facility which opened in 2015.

Regional Hospice’s pediatric program began around its inception, which serves youths up to 21-years-old. The pediatric hospice program‘s average daily census has hovered around seven patients for the last decade.

Regional Hospice’s pediatric services include pain and symptom management, certified nursing assistant care, social worker case management, spiritual care and respite. The program also includes dietician services and massage, meditation, music, pet, physical and occupational therapies. Pediatric patients of the community-based program have access to its hospice center.

Barriers to the program’s growth have included reimbursement challenges that hinder recruitment, gaps in demand and a lack of referral education, according to Marchione.

Misconceptions about pediatric hospice care proliferate across the health continuum, which trickle impacts into access and demand for these services, she indicated. For instance, not enough referrals understand that pediatric hospice care is offered concurrently alongside curative treatments.

Additionally, reimbursement systems in Medicare and Medicaid often do not sufficiently cover the full range of interdisciplinary pediatric hospice services, Marchione indicated. Regional Hospice has been striving to work with private insurers to improve pediatric hospice reimbursement. The hospice currently offers these services to patients regardless of their ability to pay, an issue that can come with financial challenges related to supply and demand, she stated.

“Pediatric palliative and hospice programs often operate at financial losses for most institutions,” Marchione said. “The rates for palliative visits are extremely low and a stand-alone palliative care program is unsustainable. Many families lack adequate insurance, and although Medicaid rates are like Medicare rates for adults, the cost to take care of pediatrics is higher than adults. Then, there are those children that are not insured or have private insurance without a hospice benefit.”

The grant was made possible by a recently approved bill in Connecticut, which intended to expand access to pediatric hospice and medical education about these services.

The state included the funding in its most recent budget following approval of a bill sponsored by Democratic State Sen. Julie Kushner intended to expand pediatric hospice care services across the state. A major aim of the grant is to ensure that every family who needs hospice care is able to receive it, Kushner said in a statement shared with Hospice News.

The funding came after Regional Hospice urged policymakers to recognize an increasing need for pediatric end-of-life care, as the state’s volume of terminally ill patients younger than 21 continues to rise.

The grant fuels a two-year initiative at Regional Hospice that will boost its pediatric hospice workforce. The funds will allow the nonprofit to hire more pediatric hospice nurses, social workers, therapists and back-office administration and finance staff. The funding will also support statewide educational initiatives for hospice providers to enhance their pediatric outreach efforts.

Increased awareness about pediatric hospice care offered concurrently with curative treatment has been associated with earlier access, improved quality of life and reduced hospitalizations, Marchione stated.

“A lot of things go into pediatrics in recruiting, marketing, education, philanthropy, all of that,” she said. “We need more resources, more education. We need to figure out how to do better with pediatric hospice and palliative care, and it’s just such a lack of education. Providers and the community need to understand that this is another level of care, it doesn’t take away the interventions and curative care for a child.”