A legacy of unintended side effects
First in a three-part series.
Geneva Fielding, a single mother since age 16, has struggled to raise her three energetic boys in the housing projects of Roxbury. Nothing has come easily, least of all money.
Even so, she resisted some years back when neighbors told her about a federal program called SSI that could pay her thousands of dollars a year. The benefit was a lot like welfare, better in many ways, but it came with a catch: To qualify, a child had to be disabled. And if the disability was mental or behavioral — something like ADHD — the child pretty much had to be taking psychotropic drugs.
Fielding never liked the sound of that. She had long believed too many children take such medications, and she avoided them, even as clinicians were putting names to her boys’ troubles: oppositional defiant disorder, depression, ADHD. But then, as bills mounted, friends nudged her about SSI: “Go try.’’
Eventually she did, putting in applications for her two older sons. Neither was on medications; both were rejected. Then last year, school officials persuaded her to let her 10-year-old try a drug for his impulsiveness. Within weeks, his SSI application was approved.
“To get the check,’’ Fielding, 34, has concluded with regret, “you’ve got to medicate the child.’’
There is nothing illegal about what Fielding did — and a lot that is perhaps understandable for a mother in her plight. But her worries and her experience capture, in one case, how this little-scrutinized $10 billion federal disability program has gone seriously astray, becoming an alternative welfare system with troubling built-in incentives that risk harm to children.
A Globe investigation has found that this Supplemental Security Income program — created by Congress primarily to aid indigent children with severe physical disabilities such as cerebral palsy, Down syndrome, and blindness — now largely serves children with relatively common mental, learning, and behavioral disorders such as ADHD. It has also created, for many needy parents, a financial motive to seek prescriptions for powerful drugs for their children.
And once a family gets on SSI, it can be very hard to let go. The attraction of up to $700 a month in payments, and the near-automatic Medicaid coverage that comes with SSI approval, leads some families to count on a child’s remaining classified as disabled, even as his or her condition may be improving. It also leads many teenage beneficiaries to avoid steps — like taking a job — that might jeopardize the disability check.
The latest federal statistics, obtained by the Globe through a public records request, show a stunning rise over the past two decades in the number of children who qualify for SSI because of a variety of mental disabilities.
Of the 1.2 million low-income children nationwide who received SSI checks last year, 53 percent, or 640,000, qualified because of mental, learning, or behavioral issues, up from 8 percent in 1990. By significant margins, the top two disorders are Attention Deficit Hyperactivity Disorder, or ADHD, and delayed speech in young children, followed by autism spectrum disorders, bipolar illness, depression, and learning problems, according to the Social Security Administration, which runs this program and the $55 billion SSI system for adults.
In New England, the numbers are even higher — 63 percent of children qualify for SSI based on such mental disabilities. That is the highest percentage for any region in the country. And here and across the nation, the SSI trend line is up, with children under 5 the fastest-growing group. Once diagnosed, these children often bring in close to half their family’s income.
“This has become the new welfare,’’ said MIT economics professor David Autor. “This is a very valuable resource to families, but you’re providing incentives for them to produce a diagnosis for their children to be part of this program, and there’s also incentives to medicate them. This is a substantial public policy problem.’’
This transformation of the children’s SSI program is viewed as a victory by many disability and mental health advocates, who have long pressed for serious cases of depression and learning disorders to be recognized alongside cerebral palsy and Down syndrome as major disabilities. The program’s expansion has also undoubtedly helped many new families cope with the exhausting needs of deeply troubled children.
“A few years ago, we never saw a bipolar diagnosis in a child; now we do,’’ said David Rust, a top Social Security official who defended the agency’s handling of the SSI children’s program in an interview with the Globe. “The world is changing in terms of who we serve and the kinds of conditions we see.’’
But, the Globe review found, the changing nature of the SSI program has had some disturbing side effects. Many cash-strapped parents have come to believe that if only they can muster the necessary array of medical records, their children have a good shot at this benefit, even if it means carrying the stigma of the word “disabled.’’ And while some parents see their children’s behavior improve from psychotropic drugs — as has been the case so far with Fielding’s youngest boy — they bristle at the outsize role that these medications seem to them to play in securing SSI approval.
For many, the motivation to apply comes down to economics: SSI payments can be a lifeline in a bad economy, and they beat welfare checks in almost every way. For a Massachusetts parent with two children, welfare pays a maximum of about $600 a month. If one of those two children is approved for the SSI program, the total government benefit can be twice as much.
“Everybody’s poor, everyone’s got issues,’’ Fielding said, as she sat in her family’s apartment near Madison Park. “People are going to try to get a check.’’
The children on SSI represent a cross section of the poor. Federal data show that roughly half identified as white, half as black; some 16 percent self-identified as Hispanic. Two of every three recipients are boys, in part because ADHD diagnoses skew heavily male. And ADHD is the top diagnosis, constituting 31 percent of all children on SSI for behavioral, learning, and mental disorders.
As the Globe investigated the surge in SSI cases — mostly by visiting housing projects, Social Security offices, and downtown districts — many parents were reluctant to talk, fearful of losing this coveted benefit. Still, some two dozen families agreed to be interviewed, in part to vent their frustration at what they perceive to be the government’s arbitrary approval process in mental disability cases. Some wanted only their first names to be used as they described their persistent efforts to figure out what Social Security wanted, and their growing conviction that medication for the child was a critical step.
Waiting on a bench in a rundown commercial strip of Lawrence, Yessenia was among the frustrated.
The 28-year-old woman said late last summer that she will be trying, for the third time, to obtain SSI payments for her 7-year-old son based on his ADHD symptoms: impulsivity and inattention.
Yessenia said she is convinced her son’s first two applications were rejected because she had nothing to list in the section labeled “medications.’’ But in recent months, she has convinced the boy’s doctor to write a prescription. Her son is now taking a stimulant often used for ADHD.
“If you child doesn’t have medications, the SSI office thinks he doesn’t have any big problem,’’ she said.
Yessenia and her extended family have long experience with the SSI program. As a child, she said, she qualified for SSI based primarily because of learning disabilities, and after her 18th birthday, she requalified as an adult on the same basis. Her older sister, diagnosed with bipolar disorder, has been receiving SSI benefits since childhood.
Yessenia said she has other reasons to be optimistic that her son’s new application will be approved.
“Since he was denied all the time, the therapist said she’d give him another diagnosis, and that’s when she said he’s got depression,’’ said the mother, who has yet to submit the new application. “She’s also recommending another drug.’’
Yessenia, and the others interviewed, insisted that they do only what is best for their children’s health and would never medicate purely to boost their SSI application. But some of the parents said they know of others who exaggerate their children’s symptoms so that clinicians prescribe medications or add additional psychiatric diagnoses.
“A lot of people do it,’’ said Makeysha, a Jamaica Plain mother whose child is on SSI for ADHD. “A lot of people don’t have income coming in.’’
A special education teacher at Holyoke High School with two decades of experience said it is clear to her that indigent parents learn, through word of mouth, the strategic “ins and outs’’ of the SSI system. The teacher, who asked not to be named because she is not authorized to speak about student records, said she has seen hundreds of teenagers on SSI for mental disabilities.
“I don’t know anyone who isn’t on drugs,’’ she said.
She also said she is frequently asked by parents to complete SSI paperwork about a child’s academic level, in hopes that it will confirm a diagnosis for some kind of mental disorder.
Their story was horrifying and far from typical, but also telling about how a child’s mental health diagnosis can be abused in the name of money.
Each of their three children was, according to medical records, diagnosed with ADHD and bipolar disorder, and prescribed three powerful drugs. The parents made sure to highlight the youngsters’ prescription data in their SSI applications: “If not for medication, my son would not be able to sleep more than 3 hours in a 24-hour period,’’ Michael Riley wrote. The parents obtained SSI benefits for the oldest two children, and for themselves through the SSI program for adults. They were applying for benefits for 4-year-old Rebecca, when the girl turned gravely ill sometime after midnight on Dec. 13, 2006.
Rebecca had been sick with an respiratory infection, but the Rileys did not take her to a doctor. Instead, they fed her excessive amounts of clonodine, a sedating medication often prescribed for ADHD, to get her to sleep. She ultimately died of a drug overdose, and jurors this year convicted her parents of killing Rebecca with their reckless care. Records made public during the murder trials showed the parents’ casual approach to medication over years, and how their calculated pursuit of SSI checks and psychiatric pills caused them to exaggerate their children’s behaviors to clinicians, including a Tufts Medical Center psychiatrist.
Until the day Rebecca died, the family depended largely on SSI checks totaling roughly $30,000 a year.
As extreme as their case proved to be, the way this family sustained itself financially is far from rare. As more families are cut off from the nation’s welfare benefits, millions of indigent parents have turned to SSI.
Said Williams College economist Lucie Schmidt: “It’s become the de facto backup safety net.’’
Top officials in the Social Security Administration, in an interview this fall at the agency’s headquarters just outside Baltimore, insisted they do their best to implement the Congressional mandates for the SSI children’s program, which require sensitivity to a wide range of physical and mental disabilities, while approving only those children with severe impairments.
Art Spencer, associate commissioner in the agency’s office of disability programs, said he was disturbed to hear that the Globe’s review found that many indigent families are convinced that psychotropic drugs are critical in obtaining SSI benefits.
“Medication helps confirm a diagnosis, but most of the decision is going to be based on the child’s function,’’ said Spencer, whose agency’s primary job is overseeing the nation’s $800 billion program for retirees’ and other workers’ benefits.
Rust, deputy commissioner in the office of retirement and disability policy, said each child’s case is carefully reviewed by a disability examiner, as well as an in-house pediatrician.
He said that the agency does not currently track how many children on SSI are prescribed psychotropic medications, but that a new computerized record-keeping system may give them the ability to do so. Rust emphasized that, ultimately, awarding benefits rests largely on what the child’s doctors and clinicians say about the child’s impairment, and that the agency needs to trust that information. He said, on occasion, disability officials have spotted clusters of SSI families with the same doctors, and with strikingly similar diagnosis and treatments, and referred those for possible fraud prosecution. But mostly, he said, “We work off the medical evidence we get.’’
Rust, a former high school teacher, acknowledged, however, the risk that long-term SSI enrollment may exact a psychic toll.
“One of my concerns about the program is that by designating a child as being disabled, it creates a certain mindset with the child, with the family, with the schools. . . . You’re disabled. You are unable to do certain things,’’ he said. “I really do wor ry, in the program’s attempt to help children, and that’s what we’re trying to do, we can create a certain psychology of disability that is hard to break. ’’
On paper, the eligibility requirements are daunting. According to the most recent Social Security rules, passed in 1996, a child can be approved for mental disability benefits only if he or she has a “medically determinable impairment that results in marked and severe functional limitations.’’ The impairment should be one that persists for at least a year or may result in death.
In some instances, a specific diagnosis for a severe condition — schizophrenia, for example — is a virtual and uncontroversial guarantee of benefits. But most diagnoses are not of that severity and SSI approval hinges on the highly subjective determination of whether a child’s condition, or cluster of conditions, amounts to a “severe’’ impairment.
Officials wade through piles of medical, clinical, pharmacy, and school records, some haphazardly or partially completed, to determine how a child functions in six designated “domains,’’ such as how well he or she communicates, or gets along with peers, or can take care of his or her own basic needs. One “marked’’ impairment is not enough for SSI approval, but a “severe’’ impairment in one domain, or, alternatively, “marked’’ impairments in two domains, is.
Officials may also rely on standardized neuropsychological and other tests or hire an independent medical expert to evaluate the child. Nevertheless, in many cases, diagnoses are based largely on a parent’s account, and disability evaluators never meet the child face-to-face.
Jennifer Erkulwater, a coauthor of the Harvard University Press book “Medicating Children,’’ about the rise of ADHD diagnoses nationwide, said it is easy to see how psychotropic drugs have turned into a potential marker of a mental disorder’s severity.
“If the doctor says it’s serious, he’s giving a prescription,’’ said Erkulwater, a political science professor at the University of Richmond.
She said it is unclear whether the SSI approval process is a factor behind federal data showing that indigent children are diagnosed and prescribed psychiatric drugs at a higher rate than more well-off children. A 2008 study found, for example, that 12 percent of children on Medicaid were diagnosed with ADHD, compared with 8 percent of children on private insurance. Other national studies using Medicaid data have found that poorer children with behavioral and mental diagnoses are also medicated with ADHD drugs and antipsychotic medications at higher rates.
Erkulwater said researchers have cited many explanations for this difference, including the possibility that doctors are more inclined to medicate poor children or that higher rates of mental disorders exist among the destitute. She said that “among the nexus of reasons’’ is that indigent families may be more open to psychotropic drugs if they believe a prescription will help a child’s SSI application.
Patrisha Thompson, a Fall River mother of two, cited another reason why poor families may be quicker to medicate their children for behavioral problems: They don’t have the time for bus or subway rides to talk-therapy sessions, and they know that counseling sessions are unlikely to impress a disability examiner.
Thompson, 28, said her job in the health care industry made her realize the importance of trying behavioral therapy. She took her sons to such sessions before agreeing reluctantly last year to let her sons start a prescription of an ADHD medication. She has since put in SSI applications for both boys, ages 7 and 10, whose diagnoses also include depression, anxiety, and learning disorders. But many indigent parents, she said, do not realize that there are alternatives to drugs, or don’t have the time to pursue them.
“It’s easier to medicate,’’ said Thompson, recounting what she hears from other parents.
Thompson is still waiting to hear how SSI rules on her oldest boy’s application. Her 7-year-old boy was denied, she said, adding that she was not given a reason.
She said the denial may indicate that drugs are not a decisive factor. But she said that, based on her knowledge of other cases, an application with no mention of drugs has “little to no chance’’ of success. Even if both sons’ applications are denied, she said, she is grateful that her job gives her enough income to provide the basics. But she can understand why others, more impoverished, seek SSI approval.
“Money determines everything,’’ she said. “It determines how much you eat, what you eat, and how you treat your kids.’’
Instead, as a compromise of sorts, federal lawmakers approved the Supplemental Security Income program for the elderly, as well as for blind and disabled adults. Some early drafts of the proposal made no mention of children. But at the 11th hour, and virtually as a footnote, lawmakers in 1972 designated disabled children eligible for SSI payments.
The idea was that the benefit would help replace wages lost by indigent parents as they took time out to care for children with severe physical and congenital disabilities, such as cerebral palsy, muscular dystrophy, and deafness, or those with life-threatening illnesses, such as cancer. The money was also seen as a way to help families with extra expenses, such as wheelchairs or taxi rides to hospitals.
It remained for many years a relatively small, highly restrictive program; as late as 1990, it served fewer than 300,000 children, and only 8 percent qualified based on behavioral or mental disorders.
Then, after a landmark legal ruling, the ground began to shift.
The case grew out of a campaign in the early 1980s under President Reagan to reduce SSI rolls. Social Security officials, responding to the new mandate, cut off Brian Zebley, a boy who had been receiving benefits since he was toddler, ruling that he was no longer disabled despite a variety of physical and intellectual disabilities. His family’s lawyer challenged the fairness of the eligibility rules, arguing they were too adult-oriented and rigid, and in 1990, the US Supreme Court agreed. Social Security authorities then rushed to implement new, looser rules, and also widened eligibility for children’s behavioral and learning disorders.
A subsequent spike in mental disability cases led to a national uproar. Media accounts described parents coaching their children to misbehave or flunk tests. Some of those who desired change wanted ADHD cut from the list of allowed SSI diagnoses, arguing that the condition was not typically severe, and that its inclusion was leaving the system vulnerable to an explosion of claims. But they were drowned out by advocates for the disabled. Meanwhile, some federal authorities raised concerns about the program’s potential to harm children.
“Here the moral hazard is that the family may become dependent on SSI, and in order to continue to receive payments, decline to seek treatment aggressively or fail to encourage a child to do his or her best to overcome a disability,’’ said Jim Slattery, a former congressman and chairman of the National Commission on Child Disability, during a 1995 hearing.
By the mid-1990s, federal lawmakers were cracking down.
Congress passed tougher standards for SSI mental disability disorders, saying a child now had to exhibit a “medically determinable’’ disability with “marked and severe’’ limitations. These changes were included as part of sweeping 1996 welfare reforms.
The children’s SSI disability rolls instantly shrunk — but the decline would be short-lived. Families and clinicians began to adjust to the new rules, which emphasized extensive medical records for any claimed disability. From 1997 to 2007, the number of children who qualified under behavioral, mental, and learning disorders more than tripled from 180,000 to 562,000. By last year, more than 639,000 children were on SSI, 53 percent of all cases.
This abrupt climb in cases is a sign, some researchers say, that the SSI program has veered far from its original purpose.
Dr. James Perrin, a Massachusetts General Hospital pediatrician who has served on federal panels evaluating the SSI program, defended the program, saying it cares for many of the most vulnerable youngsters. One of SSI’s main benefits, he said, is providing near-automatic Medicaid coverage for disabled children. But he said some aspects of the program may need to be reconsidered, including the no-strings-attached cash benefit.
“Families with children with disabilities have real needs for additional income - but perhaps that money should be linked to meeting the specific needs of the child’s disability and, where possible, to supporting that child’s transition to productive adult life.’’
One nurse practitioner in a large urban clinic who asked to be unnamed because she is not authorized to speak about her patients said she recently faced the wrath of a parent whose 4-year-old child’s SSI benefits, granted at birth due to prematurity, were cut off because the child was much better now. The nurse said she had candidly filled out the SSI form about the child, saying the boy had caught up with his peers and had only “minimal deficits.’’ The mother was livid, shouting at her, “Don’t you think this child’s disabled?’’
“They get angry with us,’’ the nurse practitioner said.
One diagnosis she believes is seriously overused is “the whole vague developmental delay’’ category for young children, often preschoolers who are behaving badly at home or in day care for undetermined reasons. She said clinicians often attribute such behavior to developmental delay, especially if they are sympathetic to that family’s needs for SSI payments.
“It’s all driven by the dollar,’’ she said.
Many doctors, therapists, and social workers say they are well aware of the impact SSI benefits can have on indigent families. Indeed, some clinicians said they often feel pressure to upgrade a diagnosis or tailor the SSI paperwork to increase the odds of approval. Some say they go that extra mile because they believe that furthering the financial stability of needy families is essential in helping a troubled child.
“Some psychiatrists do feel these people are entitled to benefits,’’ said Judy Rolph, a pediatric psychiatric nurse in Boston for more 30 years. “You know these people are poor.’’
Also pushing hard for SSI approvals is the growing number of for-profit firms that specialize in helping poor families tap into SSI benefits. These companies, which call themselves “eligibility service providers,’’ are hired by hospitals, which stand to lose money when caring for uninsured patients. If these firms successfully obtain SSI benefits for an uninsured child, the youngster’s medical bills are paid by Medicaid. The reimbursement rates are even higher if the child is deemed disabled.
Health insurance companies, which administer Medicaid plans, also sometimes hire these firms, for similar financial reasons.
State welfare department officials also often urge poor families to apply for SSI benefits on behalf of their children. There, too, money is the motivation. An indigent child cannot be on both welfare and SSI at the same time, so states save money if a child goes on SSI, which is entirely paid for by federal funds. The cost of traditional welfare is covered by state and federal money.
Such help with the SSI application can be critical for parents, many of whom are at a loss to complete the complex paperwork.
Giselle Cabrera, a family services coordinator at the Head Start preschool in Holyoke, who helps families with SSI applications, sees firsthand how parents struggle to complete certain SSI forms and wonder how candid to be about their children’s symptoms. They are often desperate, she said, and often medication is what they believe will help their child’s case.
“It’s very frustrating for parents,’’ she said.
She acknowledges that her youngest boy is focusing more on his schoolwork, and that doctors say his dosages of Concerta are safe. But still, she says, she wants to stop these drugs as soon as possible. She says she does not worry if her benefits, in the future, are cut.
“God’s been good to me. If they cut me off, I’ll be all right,’’ says Fielding, who is active in parent and neighborhood groups.
As she folds laundry in her three-bedroom apartment, she says she believes her middle child, the 14-year-old, has the greatest mental disabilities. He has been diagnosed with dyslexia, and he struggles with reading. He also has asthma and emotional issues. She worries he will wind up illiterate, like her father. His SSI application has been rejected, but she is appealing.
Fielding says the SSI checks have helped get her through difficult economic times, but she has mixed feelings about the role they play among poor families. She says she decided to speak to the Globe to highlight the worrisome incentive to prescribe children drugs.
“Sometimes I don’t know why we get a check for this,’’ she said, referring to her youngest son’s case. “But if someone says you have ADHD and you’re depressed and you can get a check, they’re going to try to get a check. The poor people will take that every time. It’s all about surviving.’’
Patricia Wen can be reached at firstname.lastname@example.org.