LETTER: Awareness needed with ACA reform


As reform of the ACA is under way, I want to make sure that you are aware of a very important provision. Section 2302 of the ACA addresses the Concurrent Care for Children Requirement. The CCCR provision (Section 2302 of the ACA) states that children under the age of 21, diagnosed with a life-limiting illness, and eligible for Medicaid or the Children’s Health Insurance Program, may receive all services that are related to the treatment of a child’s life-limiting illness. This allows these young people to have palliative and hospice care services while they are receiving other disease-modifying treatments.

I am a hospice and palliative care nurse that cares for this population of children with terminal illness. This includes children with cancer, genetic disorders, congenital malformations and other diagnoses. Thankfully this patient population is very small since only 0.06 percent of children die.

When children have terminal illness, they and their families require significant support to manage their symptoms and suffering. The CCCR has allowed me to care for this population of children. The traditional hospice per diem model does not fit the healthcare needs of children. Without early hospice interventions, these children often experience uncontrolled symptoms and the families do not receive the psycho-social support that they need. This often results in costly terminal admissions rather than peaceful death at home.

Please do not forget this critical provision that was placed in the ACA!


Bereaved parent,

Downingtown, Chester County