Imagine waking up and you cannot feel anything. You try to talk, but there are no words-- only silence. You try to scream, and nothing comes out. The only sound you hear is your own voice, but only inside your head. You look around frantically. What comes into focus are the tubes sticking out of you that are helping you eat and a machine that is helping you breathe. You were in an accident and suffered a major spinal cord injury that has left you paralyzed from the neck down-- unable to speak, hear, eat or breathe on your own. Your mind is intact. Your body has become your prison.
After a few months, you can breathe on your own again but you still require oxygen. Your primary physician writes out on a white board that there is no hope of further recovery. The hospital needs the bed you are in. Your family does not have the financial means to care for you at home so you are being moved to a place called Zambarano in the Town of Burrillville. You remember thinking, where is Burrillville and what is Zambarano? You and your family are grateful to have this long-term hospital nearby.
It’s 30 years later and you have spent most of your adult life as a resident of Zambarano, or simply “Zam.” Your dad is gone and mom, who once visited weekly, is now in her 80’s and can only manage visits on the holidays. Her shoulders are heavy as she contemplates your life after she is gone, but is relieved to know that Zam is there to care for you.
Your new family at Zam consists of doctors, nurses, CNA’s and other staff who celebrate holidays with you in the old theater/gym. A CNA on second shift is listed as your next of kin. They know your moods by reading your eyes. They understand how the anniversary of your accident brings you down. They are your link to life and a fulfilling daily routine.
About a year ago things started to change. New faces in suits started to come around. The mood shifted and you could see increased tension on your Zam family’s faces. The new folks forgot you could read lips as you monitored the arguments they had with your doctors about where you belonged. The new suits said you and every one of your neighbors didn’t belong at Zam and that all of you needed to leave as the Federal government wouldn’t pay for you to live there any longer. Your doctors know better. Like family, they stood up for you, telling the suits they were wrong. But the suits are persistent. One by one your doctors were forced to retire or risk losing their licenses. Only two doctors remain to care for you and your 73 neighbors. The suits still want you out. The major problem -- there are no hospitals in Rhode Island that can care for you. Why are they intimidating doctors to falsify your discharges papers? Why bring in private contractors that have never seen, let alone examined you, to change your diagnosis? Why suddenly change policies to allow someone other than a doctor to initiate your discharge without your consent? Why trump up an emergency as an excuse to remove you and 22 of your neighbors from your specialized care facility?
As the State Rep for the residents of Zambarano, and a member of their legislative advocate team, these questions need to be answered by the Governor before he allows any further discharges. These constituents hailed from every corner of the Ocean State before unforeseen circumstances brought them to Burrillville -- there but for the grace of God go I.
Rhode Islanders need this special care facility and we will continue to fight on their behalf.
Chief of Staff
Rhode Island House of Representatives Minority Office
Rhode Island State House, Room 106
Providence, Rhode Island 02903
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