A cruel dilemma for those on the cusp of adult life
Many teenage recipients of federal disability benefits say they feel pressure to avoid work, not wanting to raise doubts about their status and jeopardize vital family income
Last of three parts
HOLYOKE — Bianca Martinez is 15 and has a dream, to work someday as an animation artist, preferably in Japan, a country she has been fixated on for years.
But for now the idea of getting any kind of paid job, even at the Holyoke Mall, where many of her teenage friends work, worries her because of what she might lose: Her $600-a-month federal disability check, which represents more than half her family’s income.
“That’s why I’m not working this summer,’’ said Martinez, a freshman at Holyoke High School who is being treated for ADHD and depression. “If I work and I get a certain amount, then they’ll take money away from my mom. She needs it. I don’t want my mom’s money to go down.’’
Tens of thousands of teenagers who receive disability checks through the $10 billion federal Supplemental Security Income face this same painful dilemma: They are old enough to accept part-time jobs, but they worry that the extra income will be detected by the government and cause their benefits to be docked or terminated. In many cases, their indigent families have depended on the income for years.
This is, a Globe review has found, another disturbing unintended side effect of a program built on good intentions — targeting aid to the disabled children of America’s poorest households. Teens whose diagnosis has meant vital income for their families feel pressure to stay away from work — even if they are capable of being employed — and rue missing out on a vital part of growing up, the proving ground for the adult workplace.
It is a problem the Social Security Administration, which runs SSI, is concerned about but does not know how to resolve. And it is a problem that many of the dozens of poor families interviewed by the Globe are remarkably candid about, even as it pains them to speak of it.
Milly Cruz, Bianca’s mother, was laid off earlier this year from her job as a special education aide. She acknowledged that Bianca’s benefit, in addition to her oldest daughter’s $500-a-month SSI check for ADHD and speech delays, has sustained the family for more than a decade. She is not happy about it, but she also does not see an easy way out.
“It makes me sad that my daughter worries about me and the income, the SSI check,’’ she said while sitting in her daughter’s bedroom, filled with Japanese artwork. “She’s got enough issues. She shouldn’t have to worry about the budget in the family, or my income problems.’’
According to Social Security Administration rules, a teenager’s first $85 a month in earned income can be kept without affecting SSI benefits; beyond that, however, the federal agency deducts $1 for every $2 earned, which many teens see as a virtual 50 percent tax rate. If a family’s total household income passes certain thresholds, SSI checks can be cut off entirely. Such Social Security scrutiny, triggered by income, can also lead to a more serious consequence: a determination that a teen is no longer disabled at all.
Youth job counselors and lawyers who handle disability cases say this work predicament runs deepest among teens who became eligible for SSI based on behavioral, learning, and mental disorders, the rapidly growing categories under which more than half of the children in the program now qualify for benefits. These teens are more likely than those with profound physical and congenital disabilities — such as Down syndrome, blindness or cerebral palsy— to take on the kind of part-time job that their classmates typically pursue.
“Most young people want to work,’’ said James Smith of the Vermont Division of Vocational Rehabilitation, which received a grant from Social Security to help youth on SSI acquire job skills. “It’s often their parents who complain about their child working. These families are poor, and they depend on the SSI check.’’
Smith said renewed efforts are needed to help these young people acquire the employment skills — and personal confidence — to become financially independent. The alternative is easy to fall into but dreary, indeed.
“It’s sad to go a lifetime on SSI,’’ Smith said. “It’s a poverty program.’’
Since he was 16, Long has qualified for the children’s SSI program for his depression and bipolar illness. When he was a student at New Bedford High School, he recalled, he felt envious of peers who earned extra money by working at restaurants and stores. He says he did not work because he did not dare jeopardize his $700-a-month SSI check, which was critical to his family.
“I heard that if I was working, my check would be reduced,’’ said Long, now 21, who grew up in this struggling port city. “It gave me a reason not to work.’’
Just before Long’s 18th birthday, he requalified for the adult version of the SSI program, a transition that is often hard but wasn’t for him because he was able to convince Social Security of the severity of his disability.
Many teens are jolted by the reality that a disabled adult and a disabled child are very different people in the eyes of the Social Security Administration. Under the agency’s definitions, children are deemed disabled if they exhibit “marked and severe’’ impairments compared to their peers. The adult standard focuses only on an individual’s ability to hold a paying job or participate in “substantial gainful activity.’’
As Michael Kelly, a Boston lawyer who specializes in SSI cases, bluntly put it, “Just because you have a learning disability doesn’t mean you can’t dig a hole.’’
As a result, of all the teens who apply for adult SSI benefits just before their 18th birthday, four of every 10 are rejected — and the odds are worse for those with behavioral, learning, and mental disorders. Two of every three teens who qualified for SSI for those impairments are turned down for adult benefits.
Though Long feels fortunate to have cleared the hurdle, he says he has mixed emotions about it. He eagerly awaits the check’s arrival in his mailbox each month but is wary of becoming addicted to the benefit. Living in a New Bedford studio, he takes the bus to computer courses at Bristol Community College and dreams of earning good money as a video game designer. But giving up the familiar SSI check, he acknowledged, will not be easy because he sees the work world as highly unpredictable, especially for someone with a thin resume, like his, and mental struggles that require medication.
“It does feel like a trap,’’ he said. “You depend on the check, and you don’t want to let go. Sometimes I’m afraid to lose the check. It’s attached to me.’’
Children who qualify at a very young age often go years before connecting their medical and therapy visits with the money their parents depend on. Many parents say they avoid telling their children, not wanting them to feel stigmatized by a “disability’’ label. Some also put it off in the hopeful belief that the child’s impairment, and the family’s need for the money they get as a result of it, will pass.
But when these children reach adolescence, the reality is hard to miss. The family’s financial struggles are as plain to see as the comforting constant of the SSI check.
A private psychologist who conducts hundreds of independent disability evaluations each year for the Social Security Administration, and who asked not to be named because he is not authorized to speak about his cases, said children who grow up on SSI often cannot see themselves ever living outside the system. It is a habit of mind that can have serious implications.
“They develop an identity as being disabled,’’ he said.
Some teens even come to see their monthly disability checks as partly their money; their parents give them a portion to spend like an allowance. Social Security officials say such a practice is acceptable if the allowance is spent on necessary expenses specific to the disabled child.
One South Boston High School student, sitting among friends on a bench at the Mary Ellen McCormack housing project, said his parents give him $100 out of each monthly SSI check. The student, who asked not to be named because he wanted to keep his involvement with the disability program private, said he has been receiving SSI checks for years due to ADHD and learning disabilities. Of the $100 he receives, he says, “I can do anything I want with it.’’
His friend, Shamus Flaherty, 21, said he grew up in the South Boston housing projects seeing many adults and children qualify for SSI based on emotional or behavioral issues, none of which seemed serious to him. Despite periods of homelessness and being laid off, Flaherty said, he hopes never to have those checks become part of his life.
“There are people who absolutely need it — they’re blind, they’re deaf,’’ he said. “And then there’s the other half. They should have more serious screening.’’
A fear of becoming dependent on the check is why Eliseo Ramirez, a 15-year-old New Bedford High School student, has virtually begged his mother not to apply for SSI benefits for him, even after a state social worker suggested she do so. His mother said the social worker predicted quick approval of benefits, given Eliseo’s behavioral and learning problems.
In the past year, the teenager was diagnosed with ADHD and depression, and placed on medications. He also spent some time in a residential facility for behaviorally troubled youth after he began skipping school, experimenting with drugs, and getting into fights.
Eliseo said he has seen troubled classmates qualify for SSI, then lose their ambition to get part-time jobs or strive for better things in their lives. Some, he said, have drifted into the underworld of drug dealing because they didn’t want any above-board income.
Ramirez said he is turning his life around and wants to earn his own way in life, possibly as a professional boxer or singer.
“I don’t want to depend on the check,’’ said Ramirez, sitting on the back steps of a city housing project. “I’ll be lazy, hanging around the house.’’
Busy hanging laundry on a clothesline behind her apartment, Eliseo’s mother, Yolanda Rosa, 40, said that she respects his views, but that money is tight. The mother of four said she receives about $1,300 a month in welfare, food stamps, and child support, which is not enough to cover all of the bills. She said she had worked briefly as a $7.25-an-hour seamstress in a factory but quit because she believed the bosses exploited the workers.
“I feel sad,’’ she said about the remote possibility that she will still apply for SSI for Eliseo. “But I need the money.’’
She knows the risks. Her extended family includes some teenagers on SSI who work very little, if at all, and simply are, as she put it, “used to getting checks.’’
“The question becomes whether it increases the chances the child will see himself forever dependent on government programs of some sort,’’ said David Rust, deputy commissioner in the agency’s Office of Retirement and Disability Policy. “It’s very destructive to the child and child’s well-being.’’
In one of the agency’s own studies, researchers found evidence suggesting that many teens, in the year before turning 17, apparently try to work less or to conceal income, perhaps to boost their chances of qualifying for the adult SSI program. The study found that at a time when the number of children on SSI children is growing rapidly, the percentage of teens reporting an annual income of $250 or more had declined, down from 24 percent in 2000 to 16 percent in 2005.
Researchers speculated that this decline may be related to a deliberate effort to hold down reportable income and may be, in part, due to “a conscious effort to remain on SSI.’’
Federal officials have tried to address the problem by creating programs that could encourage teens to work. In one such program, for instance, any full-time student under age 22 is eligible, upon request, to earn up to $6,600 a year, without facing reductions in their SSI check. But the program is not used much, because few families seem to know about it. So far, only 3 percent of those eligible have taken advantage of it.
Gathered around one set of concrete steps, a half-dozen young men — nearly all of whom were enrolled in the SSI program as children — chatted among themselves about how they make ends meet.
“It’s takes too long to get a job!’’ said a 19-year-old New Bedford High School senior, who had been on SSI since he was a preschooler diagnosed with ADHD and asthma.
The student said that he was rejected for SSI benefits after turning 18, and that he is appealing. The young man, who asked to remain unidentified to avoid adversely affecting his appeal, said his dream is to go to college and become a lawyer. But for now he cannot even get a job at McDonald’s or Walmart because he was told he needed a high school diploma. At times, he said, he wonders if the SSI checks will ultimately be a more reliable source of income than a low-level job. After all, there is the nagging fear: “What if you’re laid off?’’
This student, like the other men in his group, said the benefits of the SSI checks go beyond their reliability. Qualifying for SSI means being instantly eligible for MassHealth, the state’s health insurance plan for the poor. Many of the young men still live with their parents, so the maximum $700 a month in SSI payments goes a long way toward cover extra expenses.
Some of the men are also fathers, who say that while work wages can be garnished for child support, the SSI check cannot.
David, a 23-year-old father of three, said he was tempted to stay on SSI but is now working a full-time $9-an-hour job at a food distributor because he feels an obligation to pay his child support. If not for his sense of financial responsibility to his children, the man, who asked to be identified only by his first name, said he would have tried to stay on SSI after turning 18. He had been receiving SSI for ADHD since his middle school days.
“I love free money,’’ he said, his work identification badge still attached to his clothes. “But I got kids to support.’’
Still, he said, he is often jealous of friends who can do as they please every day, sustained, however meagerly, by the hundreds of dollars from their disability checks.
Another man in the group, William Keefe, 36, who qualified for SSI as a child, based on ADHD and learning disorders, said he feels fortunate to still receive his disability checks. Keefe, who grew up in Quincy, said he was easily passed from one class to another in school, without learning the basics. Even in 10th grade, he said, he still “couldn’t read.’’ While he briefly fell off the SSI rolls after turning 18 and worked part-time in landscaping, he requalified for SSI in his early 20s. He said his mental disabilities prevent him from working.
“And if I get a job, is it worth it,’’ he said, “if it gives me a McDonald’s job?’’
Raya Umansky, a 17-year-old Salem girl, is among those at this transition point. She has struggled with ADHD, bipolar illness, and learning disabilities, but has no plans to quit her part-time $8-an-hour job as a grocery store bagger.
“I love my job,’’ said Umansky, who hopes eventually to move up to a cashier’s job. “It’s fun. Sometimes you might have some grumpy customers, but they always smile when you say, ‘Thank you for coming.’ ’’
Her mother, Meryl Umansky, said her daughter’s pay stubs were cited by the Social Security Administration as one of the reasons it suspended her family’s $400-a-month federal disability checks this summer. Authorities said the teen’s $80 a week, combined with her mother’s wages as a part-time swim instructor, put the family’s household income just above the allowable threshold. The mother said she has not told Raya about the latest suspension of the SSI check, because she is worried it might cause her daughter to feel guilty or affect her positive attitude about work.
“These kids don’t want to be dependent, but the system makes them dependent,’’ she said.
Sitting one summer afternoon outside the Brighton housing project where she lives, 16-year-old MayMay Martin — who has qualified for SSI payments based on ADHD, bipolar disorder, and learning problems since elementary school — is well versed in the role that teenage wages have on the benefit. Her older brother, now 21, also qualified for SSI, and she frequently overheard conversations about how his income affected his SSI check.
“I’m less likely to work,’’ she said near the project’s basketball courts. “I feel my mom needs the money to pay the rent.’’
For that reason, she said, she does not plan to take a job anytime soon, even though last year she enjoyed her a temporary stint as a day-care assistant making $326 every two weeks.
“I love working with kids,’’ she said.
Thinking ahead, she said she aspires to go to college, get a good job, and have an apartment of her own. But she also realizes that many adults, including her parents, managed to care for themselves and even raise a family on disability checks, and she does not rule out that possibility.
“I might be on SSI,’’ she said. “Most of my family has had it for a while. I don’t know. To me, if I have it, I have it. If I don’t, I don’t.’’
END OF SERIES
Patricia Wen can be reached at firstname.lastname@example.org