Retired union worker with ALS struggling with loss of vital insurance benefit

Every day for the last four years has been struggle to live for Joe Swider, a 66-year-old retired plumber who suffers from ALS— Lou Gehrig’s disease— an incurable neurodegenerative condition that's left him reliant on a power wheelchair and gasping for each breath.

But in January, his daily battle became unaffordable after he lost union-provided health insurance coverage for the nursing care that’s kept him alive— a benefit for which his family now is shelling out about $4,200 a week.

The Swiders' case signals a harsh reality that is becoming more common under ObamaCare, some experts say.

Joe, who shares four children and 11 grandchildren with his wife, Donna Swider, has a tracheotomy and depends on an inner tube about the diameter of a No. 2 pencil to breathe. When that tube gets plugged up, Joe stops breathing, and unclogging it is risky, requiring the skills of specially trained nurses.

“Everything has changed,” Donna Swider, 59, told FoxNews.com. “This is a man that’s walking, talking, eating, working, driving one day— and the next, he’s on a ventilator.”

After a federal judge ruled in December that Swider’s local union didn’t break the law by switching health insurance plans, the Swiders, of Atco, New Jersey, have begun tapping into donations to pay for the nursing they thought Joe’s 27 years with the union would always cover. Donna, who works full time as a physicians’ recruiter for emergency departments, alternates shifts with the skilled nurses: She acts as Joe’s caregiver from 4 p.m. to 11 p.m. on weekdays and 3 p.m. to 11 p.m. on weekends.

“Overnight, we have a nurse for seven hours so I can rest before I start it all over again,” Donna said.

Tommy Swider, Joe’s youngest brother and an executive at a software company, set up a GoFundMe.com page to help raise money for Joe’s care. But as far as he’s concerned, he said the crowdfunding is simply “buying time.”

“It’s like, over $233,000 a year,” Tommy, 55, of Mount Laurel, New Jersey, told FoxNews.com. “Who the hell has money like that laying around?”

Taking on the system

As Tommy, Joe and Donna race to raise funds, thousands of strangers are rallying around the family. Meanwhile, the Swiders are searching for options.

“This is a man who is completely dedicated to his family,” Donna said. “He’ll tell you— there’s so much to live for.”

Michael Burns, an attorney at South Hampton, Penn.-based firm Bowlen & Burns, began working with the Swiders when they took their case to court in October 2015 because he witnessed his grandfather, a unionized steelworker with Bethlehem Steel, face a similar health insurance hurdle.

“I just felt compelled to help Joe out given his circumstances,” Burns told FoxNews.com.

The Swiders recalled Burns thinking the case would be easy to win.

“We thought we had such a slam dunk,” said Joe, who speaks hoarsely through a microphone because ALS has weakened the muscles that help his vocal chords function.

The Swiders say the U.A. Local Union No. 322 promised equal or greater benefits with the new plan, but the union and its board of trustees ended up not delivering on that promise. The switch ultimately translated to a basic Medicare supplement plan, categorized as supplement F, that didn’t cover the private skilled nursing Swider needed.

“It’s the difference between a Mercedes and a Ford Pinto,” Joe said.

Joe had been receiving the private skilled nursing for free under his previous Horizon Blue Cross plan for about 16 hours a day, seven days a week for nearly all of the previous three and a half years. Donna said the health insurance she could get through her job doesn’t cover the benefit either, and the family also explored using a rider that would grant them the benefit, but those efforts were unsuccessful. They also couldn’t get the coverage extended via COBRA because the union terminated the plan, Donna noted.

Paying out of pocket for the skilled nursing is costly, but the family said they can’t afford to pursue further legal action because they need that money to keep Joe alive.

“[Joe] has a tracheotomy, so he does require skilled nursing care,” Jill Romoff, client services manager at Bayada, which has provided Joe’s care since mid-2012, told FoxNews.com. “Caregivers aren’t nurses; they wouldn’t know what to do.”

Not only do the skilled nurses help feed Joe, and help him shower and use the restroom, but they also are trained to perform cough assists and maintain his trach, which contains an inner tube— similar to a straw inside a garden hose. The hose helps dispose of the mucus and phlegm Joe’s body still produces, but that he cannot cough up. Without the device, those substances would accumulate in his lungs— which operate on a ventilator— and he would contract pneumonia.

Sometimes, the inner tube itself gets plugged up.

“If he gets plugged up, he stops breathing,” Mary Adekanye, a registered nurse and the clinical manager at Bayada who oversees Joe’s care, told FoxNews.com. “That means someone needs to act fast. They need to change the trach, and that needs to be done within the minute, and if not, he could pass away.”

Joe said the problem is twofold: “When I do plug up, it’s cut off from my lungs but also my vocal chords— so I can’t talk. So whoever’s watching me has to know what they’re doing. They have to react.”

Kurt R. Krueger, business manager of the U.A. Local Union 322, declined to discuss the case with FoxNews.com, but he provided a memo stating that its welfare fund lost over $5 million in 2014, “and the Welfare Trustees have a duty to the some 1,700 other participants in the Welfare Fund and their families as well.” The memo also stated that Joe didn’t have a case under a discriminatory basis, “as he is not an employee and has not been denied any benefit promised by the plan.”

In the memo, the union attributed the funding of Joe’s private nursing care to “an administrative mistake as a Horizon’s appeal determination sets a May 2, 2012 cut-off date.”

The Swiders told FoxNews.com that Bayada submitted for re-certification of coverage with Blue Cross every three months, and that Joe’s care over that timespan totaled about $1.7 million. They argued in their case that their previous insurance plan booklet stated 100 percent coverage of skilled nursing with zero copay.

“Even assuming that Horizon was correct in covering the private nursing care,” the memo reads, “the Welfare Fund Trustees had a right to terminate the Horizon policy and replace it with a new policy.”

The Swiders hired Burns to handle their case following a union board of trustees Q&A meeting in mid-July, when they got a clear answer that the private skilled nursing wouldn’t be covered. However, a letter they received in mid-June specifically stated the plan would be changing but not the benefits, Donna said.

Burns said the judge’s final ruling came down to a simple settlor function under The Employee Retirement Income Security Act of 1974 (ERISA), a federal law that allows for certain institutions to change or eliminate terms in health plans.

The Swiders said the change was made possible due to four words stamped on the bottom of every page of their health insurance documents: “Plan subject to change.”

“I call it ‘the legal right to lie,’” Joe said. “You either say what you mean, or you don’t.”

A disturbing trend

Joe’s story may not be all that uncommon.

Gregory Dell, a nationwide disability insurance attorney with Hollywood, Fla.-based firm Dell & Schaefer, who was not involved in the Swiders’ case, said he has noticed an uptick in insurance policy changes that leave retirees at a disadvantage.

“Sometimes, what they do with these pension deals is they say, ‘We’re going to give you coverage, but it doesn’t have to [be] good coverage,’” Dell told Foxnews.com. “I think since ObamaCare came out, you’ve seen a lot more of this. It especially happens to retirees. Companies were able to get more affordable health plans for the company [with ObamaCare], but it ends up costing the disabled retirees, or retirees, more money.”

Burns said these sorts of health insurance switches are “what all the unions are doing.”

“It’s becoming more common to the extent they can do it, to change the health plans to limit the services,” he said.

Donna said she tried reaching out to U.S. Rep. Frank LoBiondo (R-N.J.), which serves the Swiders' hometown of Atco in the state’s second congressional district, Sens. Bob Menendez (D-N.J.), Assistant Majority Leader James Beach (D-N.J.) and Assemblyman Troy Singleton (D-N.J.), but they all said the family’s case was a private matter. FoxNews.com contacted the office of Rep. LoBiondo, as well as U.S. Rep. Chris Smith (R-N.J.), which deferred comment to the office of U.S. Rep. Donald Norcross (D-N.J.), and they all declined to comment.

Brian T. Murray, press secretary for New Jersey Gov. Chris Christie, also declined to comment on the Swiders’ case.

The legal trials compelled the union to extend Joe’s coverage until Jan. 17, after which the Swiders began paying for the service out of pocket. The benefit was originally scheduled to expire in August 2015.

“There’s no more,” Joe said of pursuing further legal action. “We can’t put money out toward a wild goose chase when we thought we had a good case and got the door slammed in our face.”

Fighting on

As Tommy Swider continues to research alternative health insurance options for his brother, the GoFundMe page he set up on Jan. 3, 2016 had raised about $49,000 of its $75,000 goal as of Tuesday morning— thanks to the support of more than 430 donors. The Swiders said the goal amount was picked somewhat arbitrarily and can be adjusted. They estimated the donations they have received so far would last them through the first week of April.

“When the money runs out, I guess we call hospice because I don’t see any other way around it,” Joe said. “Obviously, that doesn’t deliver very well with the family, but if you’ve got a better way, tell me about it.”

“The last thing I want to do is watch myself suffocate because something happened and the person watching over me didn’t know how to fix it,” Joe said, “and that’s nothing against my family, but they’re not trained like the nurses are.”

Donna described Joe as “the ultimate Mr. Fix-It”— someone who loved building furniture and helping his kids with plumbing issues when he was able and healthy. He also loved to babysit his grandchildren, whom he can no longer hold.

But she’s not giving up on Joe.

“Anytime I think we’re at the end of our rope, something miraculous happens,” Donna said. “We don’t know what we’re going to do when the funds dry out— and they will.”

“We just try to stay strong and have faith, and see what the next chapter is in our story,” she added. “And I know that sounds corny, but in our society, it just can’t happen like this.”