Storm panel told of challenges faced by people with disabilities

When the power went out at her home in Cromwell, Nanfi Lubogo used her cell phone to access the town’s website to find information on shelters. There wasn’t any. She tried calling 2-1-1, the state’s infoline, but couldn’t get through and after 20 minutes, with her phone’s battery waning, she gave up.

Many Connecticut families faced similar challenges in the aftermath of last month’s Nor’easter, but for Lubogo, the challenge was particularly acute. Her 12-year-old daughter relies each night on a sleep apnea machine that uses electricity, and takes medication that must be refrigerated.

No one Lubogo knew had power. Leaving home is a challenge with medical equipment, but after three days, Lubogo’s family left. Because they didn’t know if their destination would have power, they left the medication, which costs $600 for a vial, in their deep freezer. Days later, she learned the town had a shelter from a friend who had gone to town hall to check. But because sleeping on cots would be problematic for her daughter, Lubogo and her family chose to stay where they were. She also heard from others unsure about who to call in their towns to get information.

“There’s no one system that is statewide that people should know to go to,” Lubogo told members of Gov. Dannel P. Malloy’s Two Storm Panel Wednesday.

The panel is examining the preparedness, response and recovery efforts for Tropical Storm Irene and the October Nor’easter and will make recommendations for improvements to the governor. On Wednesday, panel members heard how the storm challenged people with disabilities and health care needs and the agencies and facilities that serve them.

James McGaughey, executive director of the state Office of Protection and Advocacy for Persons with Disabilities, noted that the storm made clear that the number of large trees that can fall and cause damage is far different than it was when Hurricane Gloria struck in 1985.

“Well, guess what? Connecticut communities are different than they were in 1985 as well,” he said, noting that there are now many older people who live at home and people who were once institutionalized who now live in the community, some in organized residential settings and some on their own. For some, electricity means being able to charge their wheelchairs, medical equipment or the lifts that get them in and out of bed, and clear roads means the ability to get services from people who bring meals or help them bathe or dress.

Leaders of human service agencies described workers using flashlights and cellphones at facilities without power, hiking to work to get around closed roads or facing scrutiny from police as they tried to get to work or clear trees from streets outside group homes.

Hospital leaders spoke of working to handle the influx of people who didn’t need hospitalization but came to stay warm, eat at the cafeteria, or because they thought they had no other options. Roseann Williams, director of environment care, safety and security at Eastern Connecticut Health Network, said ambulances were not taking oxygen-dependent people to shelters, and instead brought them to the hospitals.

Advocates spoke of the need to include people with disabilities in preparedness planning, making sure shelters are accessible and ensuring that people with disabilities are not treated as patients or someone else’s responsibility when a disaster strikes.

Therese Nadeau, who advocates for people with disabilities and has been involved in emergency planning efforts, said people who need electricity to help with breathing or nutrition struggled. Some were told to go to hospitals even though they were not sick. In addition, some people with disabilities were taken to shelters and left with little or no support.

But Nadeau said she also heard stories of people feeling a sense of community and supported by their neighbors. “What people with access and functional needs want most is to be a ‘true’ member of their community where they can share experiences together,” she said.

In the week after the storm, Nadeau spent days in her van to keep warm, hoping she would not run out of gas, and getting breathing treatments at her town’s shelters while charging her medical equipment. She slept in her wheelchair, or with her service dog against her to keep warm.

McGaughey said many people reported confusion about registering themselves or their family members as people who might need assistance during an emergency. Some towns keep registries through the fire chief or the first selectman, while other towns don’t keep registries at all. Some people might think that because they filled out a “special needs” registration form for the enhanced 911 system they also signed up for communication through the state’s reverse 911 system, which isn’t the case. There’s also confusion about notifying power companies that a person in the household requires life-supporting equipment that needs power.

“There’s a lot of confusion as to what you’re signing up for,” he said. Instead, he said, people need to get a consistent message, such as a list of what they need to sign up for.

Lubogo noted her family signed up for the list of people who depend on life-sustaining medical equipment through Connecticut Light & Power. She said she got a phone call before the storm saying they would be the first to be restored. But her street was among the last in the area to get power back, making her wonder why she bothered signing up.

CL&P spokeswoman Katie Blint said the list, which has about 20,000 people on it, is not used to set priorities for restoring power. Instead, she said, the company uses it to notify customers in advance of pending weather events, call during the storm to check on them, and urge customers to have a backup plan.

“We’re not prioritizing them,” she said. “We’re reaching out to them to let them know we know that they have medical issues that need to be taken into consideration but we’re asking them if they need help and we’re trying to put them in touch with organizations like the Red Cross.”

The leaders of human service agencies also spoke of frustration at not being prioritized to have their power restored, their streets cleared or even for their workers to travel to work.

At Oak Hill, which serves people with disabilities, 40 of the agency’s 84 residential facilities lost power, and maintenance mechanics traveled to those without power to bring portable generators, assess the damage and clear evacuation routes. But in some cases, workers clearing trees from streets near group homes faced scrutiny from police, President Patrick J. Johnson Jr. said, and one woman was berated by a local police officer when her car slid off the road while she tried to get to work at a group home.

“They do not see group homes…as a priority,” Johnson said.

“That’s the first place they ought to make sure are safe,” said Maj. Gen. James Skiff, who co-chairs the storm panel. Rather than berate the Oak Hill worker, Skiff said, the officer should have given her a ride and told her he’d drive her to work the next day too.

After losing power at a group home that didn’t have a generator, staff at Wellmore, a Waterbury behavioral health agency, worked double shifts to make sure clients were safe.

“But there was no choice,” CEO Gary Steck said. “We were on our own and it did not appear any of our locations were determined to be ‘high priority,’ or at least there is no way for us to determine if even in Waterbury the city has us noted as an essential service.”

He said it took days to find a portable generator for the facility to power heat, emergency lights and hot water.

At Gilead Community Services in Middletown, which provides mental health services, the electronic medical record system that doctors, nurses, therapists and case managers rely on only worked in one of the agency’s buildings, despite having multiple layers of backup, CEO Barry Simon said. But the communications companies the agency works with said Gilead wouldn’t get priority in having its services restored, he said.

Other recommendations made by those who spoke included:

• Rethink messages about personal preparedness to make it clear people could be without power for more than three days and urge people to have multiple preparedness plans for different situations.
• Create a state position to focus on coordinating the inclusion of people with access and functional needs into emergency preparedness and response.
• Allow agencies to keep more reserve medications for people on Medicaid. Currently, the Department of Social Services limits the supply to three days, which Johnson said was a problem last week when drug stores rationed supplies because they did not know when they would get supplied.
• Allow the state to help finance the cost of generators for group homes and facilities for people with disabilities by reimbursing agencies that buy them over several years.
• Give medical personnel who rely on electronic records priority standing in restoring cellphone, cable and Internet services.
• Plan for shelters to accommodate people who are medically compromised but do not meet the criteria for hospital admission.