Richard West didn’t believe in letting things stop him.
He didn’t let muscular dystrophy stop him — even though the disease paralyzed him and put him in a wheelchair that he needed until he died last month, at 65. He also needed help from a ventilator to breathe, for decades.
When West, of Tuckerton, realized his wheelchair would keep him out of meetings at his son’s school — the meetings were upstairs, and there were no elevators — he didn’t let that stop him. That was part of the start of his becoming an advocate for disabled people around Ocean County.
He sued his hometown for not abiding by the Americans with Disabilities Act. And in doing that, he made a liar out of the old wisdom that you can’t fight city hall: When West sued Tuckerton, he won — and the town had to pay his legal fees.
Then it was a few years later that West — a Vietnam veteran and former commercial fisherman, construction worker and auto mechanic who lived mostly on disability payments — noticed major problems with his bills from an at-home nursing-care company.
The bills were so big that West was being told he’d used up all his benefits — which threatened his ability to live at home. West knew the bills were wrong, but when he reported the problem to New Jersey’s Medicaid-fraud hotline and other agencies, no one was interested, he said.
Of course, West didn’t let that stop him. He hired his own lawyer to fight the fraud in a battle that lasted eight years — but in 2011, led to the health-care company agreeing to pay $150 million in fines and penalties to the federal government to settle the charges against it. The FBI got into the case, which stretched to 40 states in which the company operated.
As the whistleblower who started the investigation, West was entitled to a share of the settlement — widely reported to be worth $15.4 million to him.
“But that’s before the lawyer fees,” said his sister-in-law, close friend and advocate Cecilia West, a nurse practitioner from Waretown. “And the money pays out over a lifetime, so he said, ‘A lifetime? I could die tomorrow — I’m on a ventilator, in a wheelchair.’ ... But he was a man who had nothing, and then he had some money.”
He had enough money that he lost his Medicaid, but he could hire his own nurses to take care of him at home for 12 or so hours a day. That let him live life on his own terms, and it gave him some new friends and believers, because his nurses say he wasn’t just a patient to them. He was a mentor, too.
“He was most amazing person I’ve ever met,” said Mary O’Donnell, of Tuckerton, his night nurse for about three years who has been getting sympathy cards from her friends since her patient died.
“If you met him once, all your problems you thought you had were gone,” O’Donnell said. “He was extremely limited in what he could do, but there was nothing he wouldn’t do. He taught me to never give up. Sometimes life isn’t fair, but it’s still life.”
Michelle Dunlap, of Galloway Township, was West’s nurse for four years. She said his strengths included the ability to adapt to anything his disease did to him — often by inventing a way around it.
“He had a limited ability to use ... his arms, but he had strong hands. He could move his fingers, and he adapted tools to himself,” she said, including a system he came up with for dipping pencils or other similar-shaped items into a liquid rubber. The coating made the sticks soft, grippable and useful in all kinds of ways.
“He told me what he wanted, I went to the hardware store and got it, and it worked wonders,” she said. “I told him he needed to (patent) it somehow.”
His lawyer in the fraud case, Robin Page West, of Baltimore, also spent a lot of time with Richard West — no relation — over the eight years it stretched on, although many of their dealings were by phone or email.
He apparently found her online, because he specializes in whistleblower cases. She said few of them succeed, but she didn’t hesitate to take his.
“He wasn’t out to get someone, or to make any money. It was something happening that was wrong, and he wanted to do something about it. And he was fastidious in his record-keeping, and his focus on what was going on here. ... He just kept going and going to the next step and the next step,” she said.
“He was superorganized and supermethodical and superfocused and superrational,” the lawyer added. “And when he explained it, you understood. It wasn’t about him; it was about the government being ripped off, and this is not right. And nobody is paying attention — and this is not right.”
Long before he got involved in that case, back when he started as a disabled advocate, Richard West helped start a wheelchair race every June on Long Beach Island. The race goes from Harvey Cedars to Barnegat Lighthouse. West was such a big part of the event that a few years after it started in 1999, the race was renamed the Richard West 5-Mile Wheelchair Race.
He drafted his family, friends and fans as his volunteer helpers. His nurse, O’Donnell, said it was a complicated operation that drew racers from as far away as Argentina. One year, the winner covered those 5 miles in 13 minutes — but everyone also had to wait for the last-place finisher, who took more than three hours.
“He would get food, trophies, buses — and his favorite thing was the race T-shirts,” the nurse said. He also got a giant tent at the finish line — and Cecilia West, his sister-in-law, knows the tent alone cost about $2,000. She also knows Richard paid a lot of those race expenses himself, long before he got any cash from his fraud case.
“He was using money he didn’t have to give prizes to other people,” Cecilia said. “One time I asked him, ‘How are you going to pay for that?’ He said, ‘Oh, I’ll just remortgage my house. What the heck.’”
People who loved and admired him aren’t sure they can pull off the Richard West 5-Mile Wheelchair race this June without Richard West. Some want to keep the tradition going for the 15th straight year, but West’s family thinks they may have to wait until next June to bring it back.
Nobody doubts they have to keep the race alive in his honor. They can’t let difficulty stop them, either. O’Donnell gives a thought from her friend and mentor — one he liked enough to put on his T-shirts from last year’s race — that could apply in this case.
“It’s not your fault if you’re down,” as she quoted him. “It’s your fault if you don’t get up.”
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