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Disability Rights Advocates Work For Inclusion In Disaster Planning Process

Disability Rights NC

Inaccessible shelters, untrained shelter staff and limited services and resources created unnecessary challenges for people with disabilities during and after Hurricane Florence. Disability Rights North Carolina, the state’s disability rights monitoring group, released a report in February describing these findings.  Advocates are now working to elevate the voices of people with disabilities and their caregivers to ensure that their needs aren’t overlooked when planning for the next disaster.

Terry Helvie and her two adult children left their home in Pamlico County to seek shelter in New Bern a few days before Hurricane Florence collided with the state’s coast. Helvie’s 26-year-old son Logan is nonverbal and has severe autism. She says that’s why they chose to stay at a hotel.

“He has fear of large groups of people. He has a fear of people he doesn’t know. He has fear of darkness,” Helvie said, speaking at a disability rights forum.  

Helvie says she tried to protect her son from triggers that could send him into a meltdown. They stayed at the Bridgepoint Hotel in New Bern for a couple of days. But then the building started to flood. They were evacuated to an emergency shelter at a nearby elementary school and were given their own room.

“We could eat and drink in the room. He didn’t have to be around other people. Then came the time for the kids to go back to school. Well, they told us before we ever left that when we went to go to the Recreation Center in New Bern, that we wouldn’t be given a room off to ourselves.”

Helvie says her son remained calm at the shelter inside the school. But that changed at the next shelter. They were placed in a room with people they didn’t know.

“Everybody in there had disabilities. There was about 14 other people. So, that’s another one of Logan’s phobias. And he was trying to good, and two of the gentlemen had service dogs, so Logan was trying to hold on.”

One night, a shelter worker turned off the lights.  Helvie says she begged for a night light, but the staff member on duty told her no.  She says her son couldn’t sleep that night, and the next morning he had a meltdown.

“Eventually, they gave him a lantern – a little lantern – but it was too late then.  He was having tantrums at least once a day, and then he had a really bad tantrum, and they called the police.”

Helvie says her son was admitted at a nearby hospital.  A nurse put him to bed and dimmed the lights. He slept through the night and was discharged the next day. Disability rights advocates helped the family find a hotel and temporary housing. But Helvie says her son hasn’t readjusted since his meltdown at the shelter.

“Now – my son – he’s back to square one. He’s having tantrums again. He’s doing behaviors that he hasn’t done in years.”

Helvie’s story was included in a recent report from Disability Rights North Carolina. CEO Virginia Knowlton-Marcus says they’ve been working with state emergency management officials to try to get better accommodations for people with disabilities in a disaster.

“There needs to be more disability awareness, and accommodations and accessibility, so that when people say, for example, ‘I need my dog,’ that it’s not questioned. ‘I need my medication,’ they can access it. A lot of things that shouldn’t be so hard, if we have that training and preparation in place before the next hurricane strikes.”

Knowlton-Marcus says disability rights investigators also discovered inaccessible shelters after Florence, such as Winston-Salem’s Colesium.

“They had people on the ground floor of the stadium, but a lot of the resources and the bathrooms were on the second floor, and there was a steep staircase. So, people with physical disabilities who couldn’t navigate the staircase, or at least, navigate it safely, ended up having to use adult diapers to make it through the night because the one elevator that was available to them could only be used when there was someone available to escort them.”

Disability rights advocates are calling for more input from people with disabilities and their advocates in the disaster planning process.  Marcie Roth leads the Partnership for Inclusive Disaster Strategies. Her group backs the READI for Disasters Act, which was introduced in Congress last year.

“We believe very strongly in the adage, ‘Nothing about us without us.’ We had a room full of people here today, who obviously very much want to be involved moving forward.  This legislation would open the door for a much more robust engagement of people with disabilities at the table, at the head of the table, and really directing what happens before the next disaster.” 

Roth says in the midst of Florence recovery she sees opportunities at the state and local levels to better accommodate people with disabilities in future disasters.

“Wouldn’t have wanted the crisis, but you have an opportunity. There’s a lot of rebuilding going on. There’s a lot of investments being made in infrastructure, in community services. And if those investments are made in compliance with the legal obligations under the Rehabilitation Act, then all of those investments will include, equal access, program access, physical access, effective communication access.”