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By Robin Respaut
SAN JUAN, Puerto Rico, Dec 9 (Reuters) - Juanita Gomez Cruz irons clothes and fries pasteles to help support her family. At 77, she is the sole caretaker for her elderly husband Pedro and her adult son Dafner, both of whom are disabled.
Pedro, 65, lost part of his foot three years ago to diabetes. Dafner, 51, suffered so many seizures as an adult that his mind turned off, she said. Now, he can't dress or feed himself and doesn't recognize family members. He spends his days in bed or slumped in front of the TV.
Both men depend entirely on Juanita - a slender, cheerful woman - as both a breadwinner and a nurse. Juanita depends on help from above as she nurses her own health problems.
"I'm suffering from my knees. I feel tired," she said in Spanish. "I pray to God to give me strength."
Disabled citizens across Puerto Rico get almost no help from either the local or the U.S. government. For 40 years, Congress has repeatedly refused to give the impoverished island - a U.S. territory - the same support it provides disabled Americans in the 50 states under the federal Supplemental Security Income program (SSI).
Such disparities have come into stark relief as Puerto Rico wrestles with the largest municipal debt crisis in U.S. history and related economic turmoil. As a territory, the island cannot declare bankruptcy. Instead, Congress has formed a board to fix the financial mess.
The seven-member, bipartisan panel, including four Puerto Ricans, is tasked with approving island budgets and restructuring its debt with creditors.
If history is any guide, those difficult deliberations will likely ignore or reject any push to provide basic benefits to the island's most vulnerable citizens. The island's disabled deserve better from the federal government, argues Puerto Rico's delegate to the U.S. Congress.
"Of all the disparities that Puerto Rico faces," said Pedro Pierluisi, "none is as shocking to the conscience - or as unappreciated by policymakers and the public."
$74 A MONTH
Pierluisi, as the outgoing resident commissioner, represents Puerto Rican interests in Congress but gets no vote, one illustration of the island's long-standing political predicament. Puerto Ricans have U.S. citizenship, and the island has been under U.S. control since it was ceded by Spain in the Treaty of Paris in 1898. But Puerto Rico and the other territories have neither self-determination nor the federal financial backing accorded to U.S. states.
Disability benefits are one of many ways in which the U.S. government has shorted Puerto Rico, and these disparities have exacerbated many of the island's economic problems. For example, federal funds cover a small fraction of Puerto Rico's outlays for Medicaid, the public health insurance program for low-income families.
For years, Puerto Rico sought help from the municipal bond market to shore up its Medicaid budget. Over time, healthcare-related debt grew to constitute an estimated one-third of Puerto Rico's massive $70 billion of outstanding bonds.
The disabled in Puerto Rico are lost in the larger crisis. Instead of getting SSI benefits, they have only a meager and nearly forgotten federal program from the 1960s, called Aid to the Aged, Blind, or Disabled.
The program now exists only for the territories, and funding has been capped since 1996. It offers just 1.3 percent of the money that would be provided if Puerto Rico were a state, the Government Accountability Office found in 2014.
Recipients receive $74 monthly on average for living expenses, compared to the $733 a disabled person can collect in the states. The lack of benefits has contributed to nearly half of Puerto Rico's disabled community living in poverty - twice the rate of those in the 50 states.
Adding to the disparity, Washington treats the disabled differently in each territory. The Northern Mariana Islands gets the same support as a state, and the average payment is $560 monthly. Recipients in Guam and the Virgin Islands get $164 and $176, respectively, each month through a patchwork of federal programs. American Samoa receives nothing.
The inequities stem from ad hoc treatment of benefits for territories, which were granted individually under different federal programs in different years and never examined holistically. The higher amount paid to the disabled in Northern Mariana, for instance, stems from the fact that the islands negotiated their territory status at about the same time as the United States launched the SSI program for states.
In Puerto Rico, fewer than 37,500 islanders receive the limited allotment. If Congress extended SSI to Puerto Rico, eligibility would expand ten-fold to 354,000.
For most people, "if you are unemployable and can't get a job, there's not going to be any services for you," said Myrainne Roa Mendez, head of Puerto Rico's State Council on Developmental Disabilities. "Mom and dad will have to take care of them."
WHEN MOM AND DAD ARE GONE
One perceived benefit of being a territory - the right of Puerto Ricans to move freely to the United States - has indirectly deepened the problems of many poor and disabled residents on the island. Tens of thousands of young professionals have fled the economic meltdown - leaving behind a population that is older, poorer, and more dependent on social welfare programs that, at best, provide scant benefits.
About a dozen people between ages 22 and 59 arrive each morning at Ramona Febo-Boarman's day center in Bayamon, a city outside San Juan. They come with a vast array of serious needs. Some are unable to speak, feed themselves, or use the restroom alone.
"Most of them, mom and dad are gone, so they are living with siblings," said Febo-Boarman, who started the program four years ago while caring for her severely disabled son, Joey Cintron, now 33. "I don't know how they can live with them 24-7. They are hard to control. They run around. They pull off diapers and make a mess everywhere."
Febo-Boarman receives $180,000 from the State Council on Developmental Disabilities to run her organization. Families pay $500 monthly plus $100 for transportation, a large expense for some. Still, there are 122 people on her waiting list.
"The need is so high," she said.
The U.S. Census Bureau estimates that five percent of Puerto Rico residents - 169,000 people - have a disability that makes it hard to bathe or dress. More than 12 percent, or 330,000 people, struggle to live independently, meaning shopping or visiting a doctor is difficult.
Yet fewer than 37,500 disabled Puerto Ricans are covered by Aid to the Aged, Blind, or Disabled, which sends $30.8 million annually to the island, according to Puerto Rico's Administration of Socioeconomic Development of the Family.
The U.S. Department of Health and Human Services' Administration for Children and Families, the agency that oversees the program, said the monthly benefit amount is at the discretion of the Puerto Rican government. The agency declined to make anyone available to speak with Reuters because "no one is completely versed in all the details," spokesman Pat Fisher wrote in an emailed message.
Many families with disabled relatives just leave the island, at least those with the means and opportunity. Over 67,000 Puerto Ricans migrated to the mainland last year, up from 28,000 in 2010. Many are seeking jobs, economic stability and better medical care.
In the years after Alma Rivera, now 39, left the support programs she was provided in public school, her family struggled to find her physical, occupational and speech therapies for her severe cerebral palsy. They watched Alma stop trying to walk or practice her dexterity skills. She couldn't sit by herself and wouldn't try to stand up.
Alma's sister Nathalie Rivera moved to Florida in 2005 in search of work. Soon she had a job at the state's health department and a home in a predominantly Puerto Rican community outside of Orlando.
In 2012, Nathalie called her mother and told her she needed to move Alma to the U.S. mainland.
"Pack your stuff," Nathalie recalled saying. "They aren't going to do anything for her over there" in Puerto Rico. "You have to see doctors."
Within weeks of moving, Alma was insured under Florida's public insurance programs as a disabled adult. She regularly attends physical and speech therapy, Nathalie said, and has started to stand on her own, even taking a few steps, and trying to use a fork at meals.
"We would never go back," Nathalie said. "Things are getting worse over there."
HISTORY OF NEGLECT
For the disabled on the island, things have been getting worse for decades. The debate over their benefits dates back to at least 1972, when Congress launched the SSI program to prevent disabled Americans from falling into poverty.
In the following five years, Congress repeatedly considered extending SSI to the other territories but rejected it each time. The concern was the monthly benefit - up to $158 then - would be too high in Puerto Rico, an island where the median household income was one-third of the U.S. average.
"The basic benefit level would be disproportionate to the incomes on the island," said Carolyn Merck, a retired Congressional Research Service specialist, who testified at a 1990 hearing where extending SSI to Puerto Rico was debated. "It would distort their income distribution."
Merck, whose job was to provide impartial research, remembers that Congress focused more on the economics of social welfare than on any moral obligation to prevent the disabled from living in poverty.
Today, the reason typically given in Washington against extending social benefits to Puerto Ricans is that islanders don't pay federal income taxes, a main source of funding for social programs like SSI.
But even if Puerto Rico became a state - and its citizens paid federal taxes - the islanders would still receive much more in benefits than they would pay in federal taxes, according to a 2014 study by the Government Accountability Office, the investigative arm of Congress. The federal share for disabled Puerto Ricans would skyrocket from $24 million to as much as $1.8 billion annually, the largest percentage jump of any program.
In 2012, a group of six Congressmen proposed a new bill to extend SSI to the territories.
"The disparity between the treatment that is provided to our nation's most vulnerable citizens is, in a word, shocking," they wrote to the House Ways and Means Committee in 2012. The bill never got a hearing. "Puerto Rico is just an afterthought," said Representative Jose Serrano, a New York Democrat, and bill co-sponsor.
Juanita Gomez Cruz's adult son Dafner wasn't always disabled. He worked as a public accountant for more than a decade. He played seven musical instruments, and he planned to marry his fiancé.
Then, three years ago, the seizures started. Dafner crashed his car. His fiancée awoke one night to find him mid-seizure. His bosses said he was no longer completing his assignments. After experiencing a seizure at the office, he stopped going to work altogether.
"I don't know what happened to him," said his mother during an interview at her small home in San Juan's sprawling suburbs. "Something happened to his mind."
Now she helps Dafner brush his teeth, take a bath and shave. She prepares his meals, feeds him, helps him in the bathroom, and sometimes washes his bed sheets several times a week when he soils them. She uses the $74 that he receives each month from the government to subsidize rides to doctors' appointments and hospital visits.
In June, Dafner fractured his hip from a fall. His mother, a septuagenarian with aged, shaking hands, pulls him up to a walker, so he can shuffle between his bed, the couch, and the bathroom.
In October, Dafner started having seizures again. Juanita is determined to carry on.
"As long as I'm strong enough to do it," she said, "I want to take care of him."
(Reporting by Brian Thevenot)
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