Families With Special-Needs Kids Among Hardest-Hit Sandy Survivors

Andrew Kitchenman | September 17, 2013 | Health Care, Sandy
Health commissioner talks recovery with caseworkers, announces $10M in federal block grants

State Health Commissioner Mary E. O’Dowd (left).
Hurricane Sandy’s devastation was widespread, but for families whose children have special medical or social needs, the event was particularly traumatic. State officials heard yesterday from families and service providers about how to help hasten recovery, as well as how to prepare for future emergencies.

State Health Commissioner Mary E. O’Dowd and Children and Families Commissioner Allison Blake announced a total of $10 million in federal social-services block grants to help these families through county health departments, hospitals, and community agencies.

“These situations have brought out the best in our neighbors and ourselves and our communities in some ways,” O’Dowd said, adding that the state will look for opportunities to systematically harness the abilities of parents, nurses, and caseworkers to respond in the future.

At a roundtable discussion at the Visiting Nurse Association of Central Jersey in Red Bank, a recurring theme was the difficulty service providers had in communicating with families before, during, and after the storm.

“We’re dealing with the dynamics of people who are used to receiving help and that need a little extra and people have never asked for help before and are a little uncomfortable and unsure of how to do it and how to work through those dynamics,” O’Dowd said. “We’re here to remind you that we’re here to help.”

Blake said state officials are asking local service providers for suggestions on how to reach families who traditionally haven’t asked for support.

“Our main goal is to reach young parents early,” Blake said, noting that the department has been opening “family success centers” that provide support to families, including a new Union Beach center. The department also is aiming for home visits with 500 in the counties affected by the storm. “We’re really hoping to reach all of the families in need and to get a sense of where there are still gaps,” in services, Blake said.

Karen Antone expressed concern for the families she assists in her work with the nonprofit Statewide Parent Advocacy Network (SPAN) Inc. in Monmouth County.

“After Sandy the schools were pretty good and they really stepped up,” helping to locate displaced families and provide transportation to students, she said.

But many parents were unable to learn about the services that were available. “The people that really needed these services weren’t aware of them,” Antone said.

Antone said the psychological effects of the storm continue for families.

“The children can’t hear high wind without becoming very upset,” she said of one family.

Blake said distributing information is a lingering challenge. “We’re really struggling with how do we best get the word out,” she said.

Antone noted that during Sandy, emergency information on the Internet was inaccessible to families without power. She said it would be helpful to make clear that services will be provided at a central “one-stop” location. Others expressed frustration that radio announcements during the storm referred residents to websites for more information.

SPAN Executive Co-Director Diana Autin added that some children who didn’t have mental health needs before the storm have them now.

VNA Monmouth County unit coordinator Mary Remhoff, an advanced practice nurse, said the organization tried to anticipate difficulties during the storm, but she would have liked to have provided more information to families sooner. As a result, the organization lost contact with some families in the storm’s aftermath.

Even families that had prepared for emergencies found themselves overwhelmed.

For example, state Special Child Health Services Atlantic County unit manager Suzanne Miltenberger described working with her three children — including two with severe disabilities who do not walk or talk — at the same time that she continued to do her job helping area families. The storm struck days after one of her sons returned from the hospital. They had to move to a relative’s house only to have the power go out there before ultimately finding a room at a hotel.

“So many of my families still weren’t back at home, they had been relocated” Miltenberger said, before adding: “My memories about Sandy are just about how sick my son was and about how critical he was and the difficult part of moving all over the place and thinking I had a plan and the plans kind of fell apart.”

Jeannette Mejias, SPAN’s outreach coordinator for immigrant families, said undocumented immigrants were fearful of reaching out for support after the storm.

“They were in a really bad way. They didn’t know where to go in their community,” said. Autin noted that these residents often didn’t have reserves of food or medicine after the storm and aren’t eligible for rebuilding grants.

Autin said undocumented immigrant families need to know that they are eligible to receive healthcare at federally qualified health centers.

Autin said families of children with special needs were overwhelmed by Sandy. For example, she cited children who had eyeglasses that were broken or lost during the storm but weren’t eligible for insurance payments because their insurer only paid for one pair of glasses per year.

“If you don’t have a child who has special needs and haven’t dealt with that, you don’t really have any sense of what that experience is like, on top of all the things that happened to every family,” Autin said.