LeadingAge New York Adviser Winter Vol. 1 | Page 23

(continued from page 21) 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. (continued on page 23) leadingageny.org 22