LeadingAge New York Adviser Winter Vol. 1 | Page 23

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level of care. Going from a pediatric facility to
a geriatric facility has its own challenges in
terms of programming. It’s hard for a child to
go from being in a pediatric environment to
being the youngest in a facility by 60 years. The
other option is a medical model group home
through the New York State Office of People
with Developmental Disabilities (NYSOPWDD)
but there simply aren’t enough of those homes
available. My understanding is that New York
State budgeted for three pilot programs for
young adults and we are anxiously awaiting the
outcome of those projects because the need
is great. We are excited to see what they come
up with as we have several children right now in
need of an appropriate place to go when they
reach age 21.
If you could pick one thing that keeps you
up at night, what would it be?
It is knowing there are these high acuity children
who are being cared for out of state, who need to
come home, who need to be with their families,
and that there aren’t enough facilities that can
accommodate them. Where are they going to go?
There are just not enough resources in New York.
Also, where they are going to go when they age
out? There are not enough group homes nor
investment in new ones but for many of our
kids it is a medical model group home that is
needed. There just aren’t enough group homes
to be able to accommodate gastronomy tubes,
tracheostomies, wheel chair accessibility and
ongoing rehabilitation to maintain really sick
children in this level of care. It is a challenge that
hopefully we will see some movement on with
the pilot projects in the works.

There is a waiting list for ventilator beds so
hopefully, with the addition of some new
ventilator beds, we can bring some of the kids
currently cared for out of state, back to New
York. Primarily, we are focused on chronic long
term ventilator dependent children who have
failed the weaning program. That is not to say we
wouldn’t take children likely to be weaned but
there is a significant need for somewhere to go
for the children who aren’t able to be weaned. It
is important to bring these children back in state
for several reasons, including cost, but none
more important than allowing families to be with
their child.
In light of the radically changing
landscape, where do you see your
organization in 5-10 years?
I think our core mission will always be to care
for the vulnerable population that we serve, for
the sake of the children and their families, in a
holistic way.
I think the changing landscape in health care,
the advent of managed care, DSRIP and other
programs, will force partnerships and affiliations,
some of which we don’t know about yet.
Becoming a part of the continuum is the future
of all health care. It’s all still a bit nebulous and
we’re not quite sure what we’ll be but our core
mission of caring for children and families in a
holistic way won’t change. That’s who we are –
the Sisters of Charity of NY -- really focused on
our mission.
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