For almost two months after Hurricane Sandy severely damaged his home in Brigantine, Craige Werner slept sitting in his motorized wheelchair because he could not lie flat in a motel bed.
In mid-December, his mother, Barbara, found a ranch home in Brigantine they could rent for the winter while their home was repaired, but it’s not really handicapped accessible and is a very tight fit.
“I can’t get into the bathroom,” Craige said. “I have to transfer to a shower chair.”
After months of dealing with insurance companies, repairs finally began on their home this month. The contractor has promised to be done before their rental assistance expires May 15.
“We’re mainly just trying to get his room and bathroom done so we can move back in,” Barbara said. With their handicapped-accessible van destroyed, moving will be a challenge.
There is no specific count of how many New Jersey residents with disabilities were affected by the storm. Joseph Amoroso, director of the Division of Disability Services for the state Department of Human Services, said that in the three days before the storm, workers made almost 4,000 outreach phone calls to clients to review their disaster plans.
In the three weeks after the storm, they got 647 calls from disabled residents looking for assistance, mostly with accessible shelter and medical needs.
The division has no funds to replace lost or damaged equipment. Amoroso said the division has tried to connect residents with agencies that work with the disabled and have been getting some grants.
Portlight Strategies, based in South Carolina, received $250,000 from the Sandy recovery fund overseen by Gov. Chris Christie’s wife, Mary Pat, to construct wheelchair ramps, vertical lifts and replace medical equipment.
The Kessler Foundation has provided $58,000 in emergency minigrants of as much as $10,000 to such agencies as Jewish Family Service in Margate. Disability Funders Network in Virginia is working with philanthropic agencies to match donors with projects.
Kimberly Hutchinson, president/CEO of Disability Funders Network, said her agency received more than 400 requests for assistance after Sandy, mostly to rebuild ramps and replace medical equipment, medications or special tools or equipment the person needed to work.
She said the network does not work directly with individuals, but through groups such as the Robin Hood Foundation to get funding to agencies that help people with disabilities.
“Many of them were independent people who led active lives,” she said. The group has finished its first round of immediate response requests and is moving toward infrastructure issues needed to get homes functional.
She said mold is an increasing problem, especially for people with respiratory issues.
“We got them ramps to get back into their homes, and now they are having other health issues,” she said.
Locally, schools and social service agencies have worked with families who are facing the same housing challenges as other Sandy victims but have the additional challenge of having to also meet the medical or physical needs of family members with a disability.
Nicole Terzakis, social service director of the Arc of Atlantic County, said it has been almost impossible to find replacement homes that are handicapped-accessible. She said the Arc has been working with New Jersey Hope and Healing and the Rutgers School of Social Work to reach out to more families.
“If people have had to move, and their children have had to switch schools, it can be very difficult,” she said. “We have a family with a child with autism, and the construction noise at their home has been very difficult for her to handle.”
The Atlantic County Special Services School staff and students put together 100 tote bags of necessities for families of their students. The California-based 1:2:1 Foundation also raised $13,000 that was distributed to 23 families at the school. School Superintendent Elizabeth Buoro said some lost their cars or specialized equipment.
The Werners lost the van that had been specially built for Craige’s wheelchair, leaving him housebound. Barbara paid $57,000 for it in 2001 and said she can’t afford to even think about another van while still paying her mortgage and needing money for home repairs beyond the insurance funds.
Craige’s girlfriend, Kiera DeCanio, whom he met online, had come down to visit and has stayed to help care for him and keep him company while Barbara is at work at Revel in Atlantic City. A family friend, Margaret Rajnic, set up a Web page to collect donations for a new van and has raised about $4,500.
A longtime resident of Brigantine, Craige was diagnosed with muscular dystrophy when he was 6 and has used a wheelchair since he was 8. He will be 28 in May, must use a ventilator to breath and has limited use of his hands.
The family had arranged to stay at Harrah’s Resort during the storm. But when Atlantic City was evacuated and the casinos closed, they could not find another place to go to until the Monday when the storm hit. They kept the van close to their home so Craige could get to it, but by then it was too late to move.
When the family called for help, it took eight men and a military truck to move Craige in his wheelchair. His ventilator is connected to the power source on his chair, so he can only be off it for several-minute periods. The family spent several days at the Brigantine Community Center shelter, and met President Barack Obama during his visit.
An aunt paid for rooms at the Econolodge in Absecon for a few days, then they received funds from the Federal Emergency Management Agency to stay at the Comfort Inn, where they were until mid-December.
At the home they are now living in, the owner put in a ramp off the back deck, but without a vehicle Werner can’t really leave. The NJ Transit Access Link bus system can transport him to doctors, but many are specialists out of the area, and the hours-long trips are hard on his health, so he has skipped appointments.
Craige said he is lucky that only one piece of his equipment was damaged and was replaced. The family put most of it on his adjustable bed and raised it as high as it would go to protect it. But after being cooped up indoors all winter, he would love to get outside more now that the weather is warming up.
“We really just want to go home,” Barbara said.
Contact Diane D’Amico: