The passage of the Affordable Care Act in 2010 brought with it sweeping changes to American health care. Healthcare exchanges, Medicaid expansion, and nondiscrimination for preexisting conditions are only a few of the new policies that signaled a new chapter in American health care. Among those changes were policies regarding pediatric concurrent care.
Under Section 2302 of the Affordable Care Act (ACA), which amended Section 1905(o)(1) of the Social Security Act, children under the age of 21 with life-threatening health conditions enrolled in Medicaid can receive curative treatment and hospice care at the same time if they meet hospice criteria, including the prognosis of having less than 6 months to live. In addition to the ACA, under the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit (and many Medicaid waivers or state plans) concurrent care services for children are covered regardless of prognosis of life expectancy, up to the age of 21, if services are considered medically necessary. Some states, such as Hawaii, Illinois, and California have incorporated these concurrent care provisions and/or EPSDT provisions as part of the state’s Medicaid hospice benefit. For many, this represented the solution to access to pediatric palliative care.
However, according to Lisa Lindsey and Meaghann Weaver, there exists “significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.”
Although children and their caregivers can continue disease-directed, curative treatments, while simultaneously receiving expert physical and psychosocial support from a hospice agency, this does not mean they have access to palliative care provided by an interdisciplinary team providing physical, mental, spiritual, and financial support throughout the course of serious illness. In addition, children with serious illnesses are much more likely to receive palliative care through non-hospice providers, including home health agencies, skilled in managing devices and other therapies children need to manage their conditions. By limiting EPSDT provisions to the hospice benefit, this limits access to care other providers can deliver.
With little guidance from the Center for Medicare and Medicaid Services (CMS), there continues to be inconsistencies and confusion in how state Medicaid programs interpret this provision. Significantly, the ACA did not address the fundamental challenge of the hospice benefit and the difference between adults and children. Because children can have rare disorders, their disease trajectories can greatly fluctuate, making them more unpredictable and difficult to determine a six-month or less prognosis.
While states have adopted EPSDT benefits, these individual submissions by states for pediatric palliative care benefits carries both a high risk for variability and inconsistencies in access to care across states, as well as a risk for variability in the quality of care made available to patients and caregivers who qualify for services. In addition, state agencies face confusion while implementing pediatric palliative care benefits, as there is a need to reconcile eligibility and coverage through EPSDT and eligibility for newly implemented palliative care services. This increases the cost and complexity of benefit implementation for this vulnerable population and limits access to care for children qualifying for concurrent care services and for pediatric palliative care services. States like California have enacted recent legislation to update provisions to navigate this complexity.
While these issues continue for children who are Medicaid beneficiaries, access to care for children covered by commercial insurance and covered by Medicare remains even more limited. States like Illinois have worked to expand palliative care coverage for children with serious illnesses, not covered under EPSDT requirements. This lack of consistency in access only increases health disparities and limits access to palliative care services for underserved populations.
According to a recent article in Palliative Care News, “Hispanic and Latino pediatric patients were 59% less likely to receive palliative care consultations compared to white patients across inpatient settings nationwide.”
While concurrent care and EPSDT established the foundation, there is much more to build when it comes to ensuring access to pediatric palliative care that distinctly addresses the issues unique to caring for seriously ill children. All of this points to an opportunity for states electing to implement a pediatric palliative care benefit to clarify the definition, eligibility criteria, services delivered, provider credentials, and reimbursement methodology for children that can improve access to a greater care continuum, while not prohibiting or limiting (and perhaps even increasing) utilization of EPSDT and Concurrent Care Services for children. And, while state Medicaid agencies might serve as an example for how to expand access to palliative care services, there exists a gap in care for children covered by private insurance and by Medicare. On the federal level, this points to a clear need for an evidence-based, standardization of a model of care and guidance for states on how to safely administer these benefits.
