Paralyzed 20-year-old wins continued health care coverage from state following online petition

July 16, 2013

Online Staff Report

NORTHFIELD, Ill. — The Illinois Department of Healthcare and Family Services has confirmed the state will continue to cover in-home nursing care for Patrick Stein, a 20-year-old with Locked-In Syndrome — a very rare condition that has left him completely paralyzed except for the ability to blink.

The state was previously planning to stop Stein’s home nursing care today, July 16. But it reversed its decision after more than 105,000 people signed a petition on Change.org, started by Illinois nurse Mary Jo Harte, urging Illinois Gov. Pat Quinn (D) and Julie Hamos, director of Illinois’ Department of Healthcare and Family Services, to reconsider cutting Stein’s in-home nursing care.

Patrick’s parents, Colleen and Nick Stein, feared their son would not survive long without the in-home nursing care. “We are so grateful to Change.org and all the tens of thousands of people who took time to learn about Patrick’s situation and sign the petition,” said Colleen Stein. “Thank you for giving our son a voice.”

There are not words to adequately express our gratitude to Gov. Quinn,” said Mary Jo. “When you are dealing with a large state system and the inherent bureaucracy, you sometimes lose hope that an individual within that system ever really heard you. Gov. Quinn heard us. He listened to Patrick.”

Mary Jo has cared for Patrick since he suffered a brain stem stroke at age 18 that resulted in Locked-In Syndrome. 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.

When the tracheostomy tube Patrick used to breathe was removed, the State of Illinois informed the Stein family that the change would result in Patrick being ineligible for the waiver program. Mary Jo argued that Patrick’s condition and standard for care hadn’t changed, and that he still required expert support 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. After reviewing the case, Gov. Quinn’s office agreed.

It’s remarkable to see how thousands of people joined Mary Jo to be a voice for Patrick,” said Tim Newman, deputy campaign director at Change.org. “We’ve seen numerous petitions on Change.org about ensuring health coverage for those in need, and it’s exciting to see how people like Mary Jo are succeeding.”

Posted July 16, 2013

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