Hurricane Maria exposed big gaps in help for Puerto Rico’s disabled. So how to fix it?

SAN JUAN, Puerto Rico — When the 155 mph winds began to hit Puerto Rico one year ago, Luis Alonso, 23, took out his hearing aid. His mom, Monica Quesada, said it was better that way because then he couldn’t hear Hurricane Maria ravage outside his home.

“He doesn’t understand the wind and the rain,” Quesada said of her son, who is partially deaf and blind. “He gets very scared and very upset and he began to cry.”

That’s when Quesada had to make one of the hardest decisions of her life and send her son to his father in the U.S., where Alonso could have access to the care he needed.

After the storm hit, families, officials and advocates in Puerto Rico grappled with the reality of a government unprepared to care for disabled people during the aftermath of Hurricane Maria.

“We didn’t prepare accurately for the emergency and to address the needs of people with disabilities,” said Janet Collazo, executive director of the Defensoría de las Personas con Impedimentos (DPI). The independent government agency, which operates with federal and state funds, is in charge of protecting the island’s disabled communities and ensuring that the federal and local government are complying with laws to help the disabled.

“I didn’t feel like I had the support I needed, at all,” said Collazo. “Because we’re a small agency, we’re clearly not a priority.”

DPI counts with just 52 employees, many of whom are also impaired, to serve people with disabilities in Puerto Rico. Collazo told NBC News that a third of the island’s population have some sort of impairment; a report from Cornell University estimates that more than 21 percent of the Puerto Rican population has a disability, a rate higher than any of the 50 states.

The most prevalent disabilities are deafness, blindness and respiratory and physical conditions requiring oxygen tanks, wheelchairs and even diapers for older adults, explained Collazo.

Image: Nicky Sanchez Quiles, a resident of the San Rafael nursing home and a dialysis patient, is taken to a hospital in Arecibo
Nicky Sanchez Quiles, 71, a resident of the San Rafael nursing home and a dialysis patient, is taken to a hospital in Arecibo, Puerto Rico, on Feb. 14.ALVIN BAEZ / Reuters

Even with the nation’s highest disabled population, the U.S. territory has historically lacked in funding and resources designated to this group.

Unlike the 50 states, there is no Supplemental Security Income program (SSI), the federal program that provides monthly cash benefits to disabled people to help them cover basic living expenses. Instead, Puerto Rico funds these through the Aid to the Aged, Blind, or Disabled (AABD), a federal matching-grant program that has been capped since 1996.

Through AABD, some receive as little as $64 a month in aid — about a tenth of what citizens in the 50 states collect. By comparison, a disabled person in the mainland U.S. collects about $733 a month through SSI.

Nearly 40,000 islanders receive the limited AABD allowance. If Congress extended SSI to Puerto Rico, over 350,000 people would be eligible to receive aid.

After Maria, the lack of aid was unchanged and the already unmet needs and concerns of people with disabilities became exacerbated.

DPI is the one of at least three government agencies that entirely lost their main headquarters due to Maria and a year after the storm, they’re still waiting for their offices to be rebuilt. In the meantime, they’re operating in a temporary space and “working with boxes and our personal cellphones,” said Collazo.