For many years, children facing such illnesses had few options for Medicaid coverage when seriously ill. In most states, parents were faced with the decision to halt curative treatments for their children in order that they would be eligible for hospices services – considered to be the gold standard for end-of-life care. The patient Protection and Affordable Care Act (ACA) has changed that situation and now all state Medicaid programmes are required to pay for both curative and hospice services for children under the age of 21 years who qualify.
Don Schumacher, CEO of the National Hospice and Palliative Care Organisation (NHPCO) stated that, “While the numbers of children that die each year from a serious illness in the U.S. are low, we have a responsibility to compassionately care for each of these children and their families.”
The Mary J. Labyak Institute for Innovation at the National Center for Care at the End of Life has published a paediatric-focused Continuum Briefing which includes:
- An overview of Concurrent Care for Children provision in the Affordable Care Act (ACA)
- Identification of the barriers for paediatric palliative care that are not addressed even with the provision for concurrent care in ACA
- Key strategic opportunities for hospice and palliative care providers to expand the care continuum for children living with life-limiting or life-threatening conditions and their families.
The goal for all who read this briefing is to work together to assure that each state’s most medically fragile children have the quality care they deserve. Individuals, families, professionals and groups can come together, identify champions and develop strategies to overcome barriers to care and continuity of services. The ultimate goal is success in securing the care and resources families desperately need.
The NHPCO encourages the formation of state-wide paediatric palliative and hospice care advocacy coalitions to work towards improved options of care.
This new report joins other materials created by NHPCO such as the Concurrent Care for Children Requirement: Implementation Toolkit and a series of seven online learning modules on Paediatric Palliative Hospice Care that will soon expand to a series of 10 modules.
Follow the link below to the NHPCO site to read more about the Pediatric Concurrent Care Briefing report and download it free of charge.