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Retired union worker with ALS struggling with loss of vital insurance benefit | Fox News

  • Joe and Donna Swider lost their case against their local union in December 2015. Now, Joe and his family are paying more than $4,000 a week for his private skilled nursing, which Joe needs because he has ALS. (Photo courtesy Donna Swider)

  • (Photo courtesy Donna Swider)

  • (Photo courtesy Donna Swider)

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 Gehrigs 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 thats 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 thats walking, talking, eating, working, driving one day and the next, hes on a ventilator.

After a federal judge ruled in December that Swiders local union didnt 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 Joes 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 Joes 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, Joes youngest brother and an executive at a software company, set up a GoFundMe.com page to help raise money for Joes care. But as far as hes concerned, he said the crowdfunding is simply buying time.

Its 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. Hell tell you theres 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 didnt cover the private skilled nursing Swider needed.

Its 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 doesnt 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 couldnt 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 cant 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 Joes care since mid-2012, told FoxNews.com. Caregivers arent nurses; they wouldnt 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 Joes 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 Joes 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, its cut off from my lungs but also my vocal chords so I cant talk. So whoevers watching me has to know what theyre 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 didnt 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 Joes private nursing care to an administrative mistake as a Horizons 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 Joes 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 wouldnt 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 judges 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 dont.

A disturbing trend

Joes 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, Were going to give you coverage, but it doesnt have to [be] good coverage, Dell told Foxnews.com. I think since ObamaCare came out, youve 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.

Its 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 states 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 familys 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 Joes 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.

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Originally found athttp://www.foxnews.com/