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The Need for Our Services
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“Ten million children in the United States are living with a serious chronic or life-threatening condition. About 30% of those children are Medicaid beneficiaries.” The Honorable Tommy G. Thompson, W.S. Secretary of Health and Human Services (2001-2005)
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Approximately 55,000 children, ages 1-19, died in the United
States in 1997. Half of child deaths occur during infancy
from congenital abnormalities, prematurity or complications
of childbirth. Accidental and intentional injuries account
for approximately 30% of child deaths. Fatal chronic medical
conditions in children include, but are not limited to cancers,
diseases involving the heart, and AIDS.
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In New Jersey in 2002, the highest number of infant deaths
occurred in Essex County (93), second highest in Hudson (62),
Passaic (42), Bergen (40), Union (39) and Morris (23). This
confirms why COLCC views Essex County as the hub of the wheel
we will serve. Some of the identified medical conditions experienced
that year which would qualify for COLCC services include:
HIV, Cancer, InSitu & Benign Cancer, Blood Diseases, Circulatory
System Diseases, Chronic Respiratory Disease, and Congenital
Anomalies. Of these referenced children, 59 were hospitalized
when they died (43 with congenital anomalies).
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From ages 1-21, again Essex County led with 80 deaths, Passaic
(57), Bergen (52), Hudson and Union (tied with 42), Morris
(23). The greatest incidences of death occurred at age 1,
ages 4 and 5, and from ages 12-16. The numbers jumped significantly
from ages 17-21 (driving age). Four of these children died
in nursing homes.
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While we do not like to think of it, children do die, and
pain is not unique to adults. We have learned from behavioral
and physiologic studies that even the youngest infant can
experience pain. Despite great progress in this area and the
availability of effective pain management techniques in infants
and children, studies continue to show that pain is consistently
managed less efficiently in children than in adults. Through
our program we endeavor to fulfill an urgent, unmet need for
a centralized palliative care program that will serve the
eligible child throughout the continuum of illness.
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No comprehensive pediatric palliative care/hospice service program currently exists in New Jersey to serve the needs of eligible infants and children, and their families, from diagnosis, especially underserved urban children. In our first eight months of service, we exceeded our projections of children served in Year I by 60%.
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