Illinois nurse Mary Jo Harte has launched a www.change.org petition calling on Governor Pat Quinn and Julie Hamos, Director of Illinois' Department of Healthcare and Family Services, to continue to cover home care nursing services for Patrick Stein, a 20-year-old with Locked-In Syndrome -- a condition which has left him completely paralyzed except for the ability to blink, which he uses to communicate.
Patrick sustained a brain stem stroke that resulted in Locked-In Syndrome, and Mary Jo was his nurse when he arrived home from the hospital for the first year and a half. Currently, Patrick is cared for by a skilled nurse in his home which is paid for by a State of Illinois waiver program operated through the Illinois Department of Healthcare and Family Services.
But recently, the tracheostomy tube Patrick used to breath was removed and the State of Illinois informed Patrick's family that the change would result in Patrick being ineligible for the waiver program. Mary Jo argues that Patrick's condition and standard for care hasn't changed and that he still requires expert support in order to survive in his fragile condition. As Patrick is not able to call out or trigger an alarm when he needs help, he is in need of constant skilled support. Her petition calls for the State of Illinois to continue Patrick's coverage for expert in-home nursing care.
"As a nurse and as an Illinois resident, it is heartbreaking to think the state could put this incredible young man's life at risk. There has been NO change in the care Patrick needs to stay alive, in fact since his trach tube has been removed, his care needs have increased," Mary Jo says. "My life changed the day I met Patrick. Working with him has been one of the most challenging, amazing and rewarding experiences of my nursing career."
"Patrick has a terrific team of nurses working with him now. To break up that team and remove his nursing care is not only a travesty, but a serious threat to his life," added Harte.
Patrick himself has said, by communicating through blinking, "Giving up is not an option. I still have my mind. I'm asking the state not to quit on me."
New signatures on Mary Jo's petition are sent via email to Governor Quinn and Hamos. So far, more than 25,000 people have joined Mary Jo's campaign. According to the current timeline, Patrick could lose state funding for his nurse as soon as July 16.
"It's remarkable to see how thousands of people are joining Mary Jo to be a voice for Patrick," said Tim Newman, Deputy Campaign Director at Change.org. To sign the petition go to www.change.org and type in Patrick Stein.