A coveted benefit, a failure to follow up
As federal disability aid for poor children increasingly targets the very young, required case reviews to ensure the help is necessary or appropriate have dwindled to an alarming degree
Second of three parts
HOLYOKE — Her toddler was adorable and rambunctious, but his vocabulary was limited to “Mommy’’ and “that,’’ while other children his age knew dozens of words. When little Alfonso tried a full sentence it came out in a swirl of sounds, often followed by a major league tantrum when he realized he was not understood. And so his mother, Roxanne Roman, was not surprised when the 18-month-old was diagnosed by a specialist with speech delay.
It came as a shock, however, when she learned from relatives that Alfonso’s problem might qualify him for thousands of dollars in yearly disability payments through the federal Supplemental Security Income program. For Roman, pregnant with her second child at age 17 and living at her mother’s, the extra income was attractive. She wanted to rent her own place.
Within three months, the boy’s application was approved. Alfonso receives $700 in monthly cash benefits, plus free government-paid medical coverage. Roman said her relatives told her she can pretty much count on the disability checks for Alfonso, now 5, to keep arriving in the mailbox for the rest of his childhood.
“They don’t ask many questions about the child once you’re approved,’’ Roman said.
Alfonso is part of the wave of very young children swelling the ranks of this $10 billion disability program — once primarily for those with severe physical disabilities but now dominated by children with behavioral, learning, and mental disorders. Children under 5 are the fastest-growing age group qualifying for SSI benefits, representing four of every 10 new cases, according to data obtained from the Social Security Administration, which runs the program.
Driving much of that growth is the twelvefold spike since 1997 of children approved based on a primary diagnosis of delayed speech, a sometimes persistent but more often short-lived affliction that starts in toddlerhood.
It is a program with the idealistic goal of helping needy families with disabled children, part of the federal government’s broader drive to intervene early in such cases. But a Globe review has found that while SSI provides a coveted financial benefit for growing numbers of the very young children, it largely fails to monitor their progress or to guide out of the disability system those whose condition has improved.
Government data show that Social Security officials have, over the past decade, fallen far short when it comes to conducting the regular case reviews required by statute. A typical SSI disability case is supposed to get a full medical review every three years, but from 2000 to 2008 the agency examined, on average, only 10 percent of the children on SSI.
In both 2007 and 2008, the review rate dropped below 1 percent, and preliminary data suggest the record for the last two years is just as low. In fact, a Social Security study of children receiving SSI until age 18 found that some 40 percent never had even one disability reevaluation during their childhood years.
The importance of such reviews becomes obvious when Social Security does get around to conducting them. Agency staff typically find that one of every four children no longer meets the agency’s disability standards, though that ruling is often appealed by the parents.
The reviews are also considered a vital opportunity to check that a child’s treatment regimen is appropriate, and to monitor his or her progress, or the lack of it.
“The goal is to get kids help and see them improve,’’ said Julie Boatright Wilson, director of the Malcolm Wiener Center for Social Policy at Harvard’s Kennedy School and a specialist in poverty policy. “By not checking up, they’re sending the message of entitlement.’’
Several researchers who study family poverty said the SSI program deserves praise for trying to help the youngest of children, but they worry that it tends to pull them into a longstanding relationship with a disability system. Many early childhood specialists were stunned to learn that speech delay had become such a popular gateway for children’s SSI benefits and suggested that that may be because it is the easiest-to-measure impairment among preschoolers.
Some go further and suggest that delayed speech is being used as a catchall diagnosis for preschoolers with both communication and behavioral problems, and that it is often employed by clinicians loath to attach a psychological interpretation to the symptoms of children so young.
“It’s a fear of labeling,’’ said Dawn Thomas, a project coordinator of an early childhood program at the University of Illinois and author of an extensive study on disability programs at Head Start centers. “But a speech and language diagnosis can hide the real issues.’’
Wilson said she worries that Social Security officials, preoccupied with their financially shaky $800 billion annual operation for retirees’ and workers’ benefits, are ill-suited to manage a disability program with such serious repercussions for children.
“It’s not the centerpiece of what they do,’’ she said.
Indeed, despite the program’s focus on disability, the payments are not reserved only for disability care. Many parents use the money much like an ordinary welfare benefit, spending the SSI payments on general household expenses such as rent, food, clothes, and diapers — and federal rules permit them to do so. The only benefit that directly targets the child’s disability is the Medicaid coverage that almost always comes with SSI approval and which pays for a range of disability services.
“You got to do more to get into the [SSI] program, but once you do, it’s an easier and better form of welfare,’’ said Shauna Lougee, a Holyoke mother whose toddler was approved for benefits this summer after he was diagnosed with speech delay and potential signs of autism. “You get more money, and they don’t check up on you.’’
At a Social Security Administration waiting room in Lawrence one day this summer, the mother of a 9-year-old girl said her daughter was approved quickly for SSI payments as a toddler with speech delay and has never had a full review of her disability status.
“Nobody has ever checked,’’ said the mother, who asked to be identified only as Tina for fear of triggering an investigation of her case.
The mother, who came to the office to report a new address, said Social Security officials frequently contact families to see if they are earning extra wages on the side, which can affect the size of the SSI check. But she said she has never had a doctor, clinician, or speech therapist tell her about the need for a disability review of her daughter’s case.
When asked if she thinks her daughter is still severely disabled with her speech, Tina replied hesitantly, “No.’’ She said her daughter still has trouble pronouncing her R’s — which come out sounding more like W’s — and still receives speech therapy for what the mother called a moderate problem. But the girl can be easily understood by most people and performs at grade-level in her public school.
“I know she’s not severely disabled anymore,’’ the mother said. “It’s an interesting thing, really, that she does still qualify. She gets better and better.’’
Based on SSI rules, a child’s speech delay can result in new or continued benefits if testing documents a “severe’’ impairment. For a child under 3, for example, federal authorities often consider a severe case to be one in which the child speaks like someone half their age, or younger.
A less serious speech delay may also qualify, but only where the child suffers from other physical or mental problems that result, together, in a severe level of overall impairment.
Tina, whose family was on the brink of homelessness in August, said she will not voluntarily tell Social Security about her 9-year-old daughter’s improvement, nor that she still gets checks for her younger son, who qualified as an infant with developmental delay and has now caught up with his peers. She is not legally required to notify SSI about any perceived progress, nor are doctors or clinicians required to report such changes.
The mother said she desperately needs the SSI payments, which add up to about $1,400 monthly. If the checks stopped, she said, she would cope — but with great difficulty.
“I’m not a really educated person, so it’s not easy to get a job,’’ said the mother, who has a GED and has held a job at a gas station. “But I’d have to deal with it. I’d be stressed. I’d be asking, ‘How do I get a job?’ And maybe, ‘Does anyone have a job from 8 to 2:30 p.m., so I can pick up my kids?’ ’’
“For the system we run and the volume of the cases we handle, we do a very credible job,’’ said David Rust, deputy commissioner in the agency’s office of retirement and disability policy.
Officials said they recognize that the lack of disability reviews is a major problem, one they tie to a shortage of staff and funds. They said they must persuade Congress to award more funding for these reviews or find the money another way.
As for the increasingly commonplace diagnosis of speech delay, Rust said it would be too simplistic to think that most children in the category had just this one impairment. Many of the children also have ADHD and behavioral and learning disorders, though they may be listed as secondary diagnoses and not captured in computerized data, he said.
Rust, in an interview at the agency’s sprawling headquarters just outside Baltimore, also said it is an enormous challenge to serve as arbiter of what constitutes childhood disability. When the SSI program began four decades ago, it largely served children with severe physical disabilities such as cerebral palsy, Down syndrome, and blindness, as well as those with profound intellectual deficits, including low IQ. Since the 1990s, the agency has faced strong political pressures from disability groups and mental health advocates to expand the list of eligible behavioral, learning, and mental impairments for children.
Rust said the fact that such mental disabilities now represent 53 percent of all children’s SSI cases largely reflects the changing definition of disability within American society. And he conceded that there is, inevitably, some subjective judgment in the decision-making process.
“We would love it if there was a test for every condition,’’ Rust said. “There are very few of those in our business.’’
Here, 1 of every 5 children living in poverty receives SSI disability benefits. And of the 939 children who qualified last year, 699, or 74 percent, were approved for behavioral, learning, or developmental delays, data show — the highest percentage among all ZIP codes in Massachusetts. One of three of those on SSI was approved after a diagnosis of speech delay, according to federal data obtained by the Globe through a public records request.
This former mill town has no shortage of need, particularly among young mothers. A commercial thoroughfare this year featured a banner proclaiming, “Holyoke supports the National Campaign to Prevent Teen Pregnancy.’’ Amid the boarded-up storefronts, signs promote prenatal services.
There are no billboards about the SSI program, but when a mother from a low-income household mentions a child diagnosed with speech delay or another disorder, it is often not long before someone — a neighbor, clinician, day-care teacher or social worker — tells them about the possibility of SSI benefits.
Oneida Rivera, who lives in one of Holyoke’s toughest housing projects, said her daughter was 2 when she was diagnosed with speech delay through a federally funded early-intervention program. During a subsequent meeting that included her daughter’s Head Start teacher and other specialists, she was told about the possibility of cash benefits.
“They told me, ‘You can apply for SSI,’ ’’ said Rivera, whose daughter, 4, was approved in August for more than $700 a month.
The frequency with which preschoolers like Rivera’s daughter are identified with speech problems is related in no small part to the thousands of federally funded early childhood specialists nationwide, whose admirable mission is to catch troubles in children as early as possible and provide intensive services. Speech delay, compared with other disorders, is relatively easy to assess by judging word counts and how clearly a child articulates.
The $7 billion Head Start program, for instance, is required by congressional mandate to set aside 10 percent of its slots for preschool children deemed disabled. If a Head Start center does not fulfill that quota, designed to show the program’s commitment to helping the full range of children, that center’s federal funding is threatened. Often there are simply not enough cases of children with severe physical disabilities, such as Down syndrome or deafness, to come close to meeting the 10 percent threshold.
The Head Start centers do not have to meet the 10 percent target on the first day of each school year. They have several months into each school year — enough time for specialists to screen students or get referrals from elsewhere — to attain sufficient numbers.
Most centers do reach this level, but barely. Of the 1,100 children served by the Head Start centers covering Holyoke, Springfield, and Chicopee, 113, or 10.3 percent, have been identified as having disabilities, officials said. Among those, 90 percent are listed with speech or developmental delays. Head Start centers across the country have a similarly high percentage of children with these diagnoses.
Thousands of Massachusetts children are also identified with speech delay each year through the federal government’s “Child Find’’ early-intervention program, created through the Individuals with Disabilities Education Act. This program hires staff members to actively look for children from infancy to age 3, regardless of income, who may need special services.
Nora Moreau, a disability specialist at the Head Start center in Holyoke, said some parents, at first, are alarmed when informed their child has a disability, even though staff members try to break the news gently. Once the parents adjust to the diagnosis, Moreau said, many soon hear about the SSI program and apply for benefits. She said parents generally apply on their own but often ask Head Start to submit paperwork to back up the disability claim.
“We do submit paperwork when they ask,’’ Moreau said. “Overall, it’s smooth. We haven’t had many calls from the SSI office asking for more information. I haven’t heard any complaints.’’
A determination by Head Start that a child has a speech delay, however, is not a guarantee of monthly SSI benefits, because the federal preschool program’s threshold tends to be slightly lower than Social Security’s.
Some researchers worry that a diagnosis of speech delay may obscure the root cause of the child’s problems and could lead to ill-advised treatments. A child’s speech delay, for instance, may be due to a home environment in which few adults speak to the child, the result of emotional trauma within a volatile family, or an outgrowth of a neurological disorder.
Clinicians, they say, often resort to using “speech delay’’ because it is the least-stigmatizing diagnosis. Lori Chaves, head of clinical and support services at the Head Start center in Holyoke, added, however, that children with behavioral troubles often also display serious speech problems, an intertwining of issues she has witnessed increasingly over the past 15 years.
“With a lot of mental health diagnosis, we see a lot of communication disorders,’’ she said.
A longtime administrator for a private Massachusetts speech-evaluation clinic that is paid by Social Security to conduct independent testing on some SSI applicants described speech delay as a much overused category. The administrator, who asked to remain anonymous for fear of jeopardizing the clinic’s relationship with Social Security, said there has been an uptick in such claims in the last five years and was shocked that many children with relatively moderate speech issues end up getting approved by the government for benefits.
But some early childhood specialists say that federal authorities should be commended for trying to identify problems early on in preschoolers, and that they can understand the desire to help vulnerable families with limited cash. Sheila Smith, director of early childhood for the National Center for Children in Poverty in New York City, said all the best therapeutic services may not work well “if Mom can’t put dinner on the table.’’
Shauna Lougee was euphoric when she learned in July, only two months after she applied, that her 2-year-old son’s case was approved, though she is not clear if it was because of speech delay or autism. Her boy, Gavin, was awarded $700 a month, plus $1,400 in back payments from the date of her original application.
“I can move out and get my kids new beds!’’ exclaimed the mother of two, minutes after hearing the news this summer.
But as the months passed, she said, she began worrying that this extra money was sapping her motivation to get a job or more education. Gavin’s SSI check is her family’s second: Lougee has been receiving $600 a month through the adult SSI disability program based on her diagnosis of depression.
“SSI sucks you in,’’ she said. “Most people get lazy. I just don’t want to become lazy.’’
Lougee, 25, came of age during the emotionally charged debates over welfare overhaul in the 1990s. She said she agrees with the critics of the old welfare system who described receiving benefit checks as a hard habit to crack. She said she aspires to be a strong mother who can support her own family, feel good about her life, and be a good role model for her children.
“I’m trying — no, I mean, I’m going, I’m going to go back to school,’’ said Lougee, who hopes to become an electrician’s assistant.
She said she hopes 2-year-old Gavin makes significant strides in his speech. And though she has heard that disability reviews are rare, she said she does not care if Social Security takes away his benefits as a result.
“If they give the money easily, I figure they can take it back easily, too,’’ she said.
Gavin’s speech therapist, Jackie Neiman of the May Center in West Springfield, said some children’s speech problems improve rapidly, particularly those whose delay is largely due to a lack of verbal stimulation at home. But other cases are more difficult and improve slowly, even with regular therapy. She is hopeful that Gavin, who shows signs of being autistic, will improve steadily.
“We’re certainly hoping he’s not the same kid you’ll see at age 4,’’ Neiman said.
Roxanne Roman, who rents a $455-a-month apartment in downtown Holyoke for herself and her two sons, said Alfonso’s speech has improved considerably. He can now speak in full sentences, though he still has to be reminded to speak slowly enough to be understood. During his last year at the Head Start center in Holyoke, however, he became particularly disruptive and impulsive, and a doctor diagnosed him with ADHD. The boy is now on two psychotropic medications.
Some parents, Roman said, end up having mixed feelings when their children’s problems begin to go away, fearing this means that the disability checks may disappear, too. Roman, who said she does not want to become dependent on the money, has recently taken a temporary job at a nearby factory. Her shift begins at 3 a.m.
Mostly, she said, she wants her son to get better, and never intends to tell him the reason behind the monthly SSI checks in their mailbox.
“I don’t want him to grow up thinking he’s disabled,’’ she said.
Patricia Wen can be reached at firstname.lastname@example.org