To the Editor:
I have reached out to Governor Cuomo, his Lt. Governor, his Controller, two Congressman, all 62 New York State Senators as well as all 148 New York State Assemblymen and woman (over 210 legislators), expressing my significant concerns surrounding the proposed cuts in reimbursements for the IRA [Individualized Residential Alternative] and ICF [Intermediate Care Facilities] residential programs. Remarkably, I received JUST ONE true response from ONE Senator – and I am frightened for my daughter's (as well as thousands of our most vulnerable citizens) future.
I am hoping that you can publicize these proposed cuts, as well as my fears, to help me get the much needed support to prevent them from being passed.
Please take a moment to read a bit of my history and you will understand why I am so frightened.
In 1987, my wife gave birth to beautiful identical girls, Elana and Samantha.
They were very premature. Both had hydrocephalus, cerebral palsy and more.
After a few months, we were able to bring them home.
About a year passed and Elana developed complications. We rushed her to the hospital.
That first night in the hospital she coded, and the lack of oxygen ultimately made her cortically blind, G-tube fed. She had to breathe through a trachea. She was a quadriplegic.
After a year of torturous surgeries they gave her two-six weeks to live. We chose to bring her home.
With our insurance and state assistance we were able to give her 24 hour nursing care.
She felt the love of her family and to everyone's surprise she thrived and progressed for 14 years. She would smile – a smile that would bring so much joy to all around her… even blow kisses.
Then a disaster. Our insurance was cut. We lost our funding. We could no longer have nursing. We tried but we could not give her what she needed to survive. We were forced to put her in a facility that was supposed to care for her. Within a month, on September 4, 2001, we lost our Elana. We lost her smile. We lost her kisses. Why? Because we lost our funding.
Elana's sister Samantha is part of a day program here at ARC, as well as a member of their residential program operated by Westchester ARC as well. This and other non-profit agencies are facing significant cuts to their funding.
Cuts on top of the cuts in recent years.
Please do not let this happen
Children will die.
Families will be destroyed.
We need your help and support to stop these cuts.
Thank you for your understanding,
Peter L. Makris
White Plains, NY