Adviser Winter 2019-20 LeadingAge New York Adviser LeadingAge NewYork Winter 2019-20 | Page 40

Feature
The Aging Out Crisis
Pat Tursi, CEO, Elizabeth Seton Children’s
W
e give each of the children in our
care at Elizabeth Seton Children’s in
Westchester County opportunities to learn,
grow, laugh, be joyful and experience the
fullness of a child’s life. We understand the
reality of our children’s disabilities, but we
do not focus on their limits.
This is the good news: facilities like ours
and advances in medicine and technology
are enabling children with complex health
conditions to live longer than ever before
and thrive into their teen years and young
adulthood. Parents are
Successful transition to adulthood
devastated by the lack
of viable options for the
requires uninterrupted,
care of their young adult
developmentally and age-appropriate
as they transition or age
out of pediatric care at
health care that is non-existent today.
21. Our current health
care system is not nimble enough to keep
pace with these rapid changes.
Millions of children across America are
living with severe, medically complex
conditions, which means that they have
multiple, chronic diagnoses that require
specialized care from many providers.
In New York State alone, there are an
estimated 5,500 children with high-need
medical complexity under the age of 21.
Children with medical complexity require
24/7 support to meet their most basic daily
functions. Virtually all children in our
care are unable to walk, and many require
feeding tubes, ventilators and devices to
help them communicate. Broadly speaking,
the conditions these children have may
include genetic disorders, traumatic brain
injuries and childhood diseases.
Successful transition to adulthood requires
uninterrupted, developmentally and age-
appropriate health care that is non-existent
today. Tragically, since 2012, 30 percent
of our young adults discharged to adult
facilities have died in just over a year. In the
next five years, over 50 of our young adults
with even higher acuity will be discharged
to geriatric nursing homes. This number is
reflective of a growing national trend.
What should be a joyful time and rite of
passage for our young adults and families is
becoming a parent’s worst nightmare. Life
itself is at stake.
This social injustice mandates an urgent
humanitarian response.
Elizabeth Seton Children’s bold solution
is to create a first-of-its-kind facility for
young adults with medical complexity
that will forever change the paradigm of
health care for this unique population. As
a “home” with life-sustaining technology;
specialty clinics; interactive living
environments; and spaces for music, art,
(See The Aging Out on page 40)
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Adviser a publication of LeadingAge New York | Winter 2019-20