After losing nursing care for son living with Locked-in Syndrome, family sues Blue Cross Blue Shield

Chicago News

NORTHFIELD, Ill. — Patrick Stein was once a vibrant high school senior athlete. Since 2010, he’s been using a wheelchair and unable to speak, eat or care for himself following a tragic medical event. 

Now the insurance company that has been covering round the clock care for Patrick is suddenly no longer paying for it.

Nurses walked out during the coronavirus pandemic. 

It was Father’s Day nearly four weeks ago that the last skilled nurse packed up her things and left Colleen and Nick Stein alone to care for their adult son Patrick. 

Steins’ insurance company stopped his 24 hour nursing care. Now the family is fighting for the non-stop care they have been receiving under their health insurance policy ever since Patrick’s health crisis happened a decade ago.

Dr Phil Sheridan is Patrick’s primary care physician and has been overseeing his medical care since October 2010, when Patrick’s life changed forever.

 “Patrick is the most vulnerable patient I know,” Sheridan said.

Back then Patrick was a high school senior, captain of both the swim and water polo teams. Then he was struck with a debilitating brain aneurism followed by a stroke at the age of 17. It left the Northfield teen severely disabled. He is now a quadriplegic who is also unable to speak, to eat or care for himself. He lives with Locked-in Syndrome.

 “Patrick’s essence, his mind, soul, being is locked inside his body, that can’t move,” Sheridan said.

Locked-in Syndrome is a rare neurological disorder allowing Patrick to communicate using only his eyes.

The condition affects just 1% of stroke victims and 90% die within four months. 

Patrick is now 27. 

A constant fear for the Steins and his doctor is that his condition can change at any moment.

Patrick and his parents communicate using a complicated and labor-intensive verbal spell board technique that uses colors and letters to complete words or sentences. 

 “He can think, he can emote, love,” Sheridan said. “He can cry. He can get angry. He’s a person.”

For years, Blue Cross and Blue Shield of Illinois has covered the cost of skilled nursing care under the comprehensive plan the Steins have been paying for each month. On June 21, the nurses left and never returned. 

 “They’ve said we are the primary and only care for Patrick,” Nick Stein said. “And we’re supposed to do it 24 hours a day, seven days a week and somehow still have a livelihood to provide. …  It’s unconscionable to think that we are either able to do it or qualified to do it.”

According to a Blue Cross benefit determination record dated April 29, 2019, the insurance company said the kind of service Patrick has been getting is provided only when medically necessary. 

The statement reads, “…the member received private duty nursing for an extended period of time. Private duty nursing is not intended for long term care. The member is receiving maintenance care for their condition. No improvement is expected. Properly trained non-professional personnel can provide these services safely.”

 “We pay for the top Blue Cross and Blue Shield policy that there is, close to $4,000 a month,” Colleen Stein said.

The Steins are suing Blue Cross and Blue Shield of Illinois.

In response to WGN News’s request for clarification made to both the insurance company and the attorney representing it was this statement: 

As a matter of course, we do not comment on pending litigation… Our members are at the center of all that we do and we are committed to providing all of our members access to quality health care consistent with the terms of their benefit coverage.

The Steins estimate proper nursing care for their son would cost them upwards of a half million dollars a year out of pocket. Or they would have to do it themselves.

Colleen Stein is a real estate agent. Nick Stein is a builder/developer.

“It’s unfair and unreasonable to expect us to take this on,” Nick Stein said.

The Stein’s family attorney Aaron Rapier said, “What Blue Cross Blue Shield is saying is Patrick does not need nursing care at home.”

His doctor disagrees.

“There is no one better qualified than me to identify what Patrick needs,” Sheridan said. “There are multiple other physicians, every one of them who has taken care of Patrick over the years, in agreement with me.”

There are letters in the court filed from additional physicians that are in agreement.

 “If private duty nursing wasn’t in the policy, we wouldn’t be here, but it is,” Rapier said. “That’s what the Steins are paying for.”

 “Blue Cross Blue Shield is playing with our son’s life,” Colleen Stein said. “This is an impossible position to be put in as a mother and a father.”

“I struggle with it every day” Nick Stein said. “I can’t understand how anyone with a heart and any common sense could suggest that we should be doing this … and that that is the right thing to do for him or us.”

Patrick, although older than 26, remains on his parents’ medical plan. There is a settlement meeting scheduled for August, but the Steins’ attorney doesn’t expect anything to come of it. They are asking for their claims to no longer be denied and 24/7 private nursing duty to be re-instated. 

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