LeadingAge New York Adviser Winter Vol. 1 | Page 43

For many years, healthcare
professionals and families with
children living with life-limiting or
life-threatening conditions had few
options for Medicaid coverage when
children were very seriously ill. Parents
were faced with forgoing curative/
life prolonging treatments for their
children to be eligible for hospice
services. Or conversely, they were not
eligible for beneficial interdisciplinary
hospice services while getting curative
treatment.
The Patient Protection and Affordable
Care Act (PPACA) changed that
situation, and now requires the state
Medicaid program to pay for both
curative/life prolonging treatment and
hospice services for children under age

child’s right to be provided with, or to have payment made for, services that
are related to the treatment of the child’s condition, for which a diagnosis of
terminal illness has been made. This provision affects children who are eligible
for Medicaid or the Children’s Health Insurance Program, New York State’s
Child Health Plus. This new provision, termed Section 2302: “Concurrent Care
for Children” Requirement (CCCR), went into effect upon the enactment of the
PPACA, on March 23, 2010.

Hospice and Palliative Care Association of New York State (HPCANYS) has
worked hard over the last dozen years to define and support the
unique discipline of Pediatric Palliative Care. A holistic philosophy
We are in need of medicine with a heart . . .
of care and method of care delivery, Pediatric Palliative Care is an
The endless physical, emotional, and financial
individualized plan of care with children and their families at the
core. Pediatric Palliative Care emphasizes quality of life, minimizes
burdens that a family carries when their child
suffering, optimizes function and promotes opportunities
dies . . . makes you totally incapable of dealing
for personal and spiritual growth. Care is provided by an
with incompetence and insensitivity.
interdisciplinary team represented by doctors, nurses, home health
aides, volunteers, social workers, child life specialists, grief and
Salvador Avila, parent, 2001
bereavement counselors and pastoral counselors. Music therapists,
massage therapists and art therapists often play a part. The model
21 who qualify. On March 23, 2010,
incorporates the child’s and family’s community, as community activities, such
President Obama signed PPACA into
as school, church and friends are often much more extensive among children
law enacting a new provision, Section
than among adults. Siblings and grandparents are not forgotten in the plan of
2302, termed the “Concurrent Care
care. Family centered care is the cornerstone for palliative and hospice care for
for Children” Requirement (CCCR).
children.
Section 2302 of the PPACA amended
HPCANYS continues to work with the New York State Department of Health
the federal Social Security Act. The
to ensure that children and their parents who are faced with a serious lifenew provision states that a voluntary
limiting illness will no longer have to make the difficult decision to pursue
election of hospice care for a child
curative treatment at the expense of forgoing the holistic, family-centered
cannot constitute a waiver of the
services provided by hospice and palliative care teams.
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