To those who believe the federal Supplemental Security Income program for severely disabled children is a lifesaver and not a boondoggle, Hulston Poe is a great example.
The 4-year-old was diagnosed with severe ADHD last October, after more than a year of violent temper tantrums, and kicked out of preschool. Case workers said there wasn't much they could do for him.
"We were at a standstill," says his mother, Suzanne Poe, who was scraping by as a single parent of two in Des Moines, Iowa.
Then doctors recommended that she enroll her son in the SSI program this year, and everything changed. A monthly check of $674 helps pay for Hulston's day care, a private tutor and medicines. Perhaps most importantly, the program made Hulston newly eligible for Medicaid, the joint state-federal health insurance program for the poor. He gained access to the doctors he needed.
"I can see a light in his eyes again," Poe says. "He just looks so much happier."
A Question Of Eligibility
The SSI program for children is rapidly expanding, with the biggest increase among kids with mental, behavioral and learning disorders, including ADHD, speech delays, autism and bipolar disorder. But as it pulls in children like Hulston, the program is sparking criticism in Congress.
The Boston Globe fueled a lot of the backlash with a series last December that termed the children's SSI program "The Other Welfare" and followed several families whose children's eligibility for the program was questionable. Several of the families, the articles reported, believed that they had to medicate their children with psychotropic drugs in order to qualify for the benefit.
The Globe series spurred Reps. Geoff Davis (R-KY) and Richard E. Neal (D-MA) and Sen. Scott Brown (R-MA) to request an investigation by the Government Accountability Office, which is expected to be released by the end of the year.
In a January letter to the GAO, the three lawmakers expressed concern about "recent reports in the media and elsewhere" that "have identified potentially alarming practices ... [that raise] numerous concerns, including the potential for fraud and abuse in the program."
Fighting (For) Potential Cuts
Republicans in Congress are not waiting for the results of the GAO study; they have twice proposed limiting SSI benefits. The House budget resolution passed earlier this year by Republicans, for example, proposed that the government could save $1.4 billion over 10 years by reducing incentives in the SSI program "for parents to place their children on medication solely to receive SSI benefits." The resolution didn't mention ADHD, but it was specifically cited in a separate budget proposal by Rep. Eric Cantor (R-VA) during the debt-ceiling debate.
Neither proposal provided details of how the savings would be achieved, and a preliminary study from the Social Security Administration found that children with ADHD taking medication were not more likely to be approved for benefits than those who were not medicated. It's unclear whether any savings would result from the proposals.
Advocates for children and people with mental illness have rallied against the potential cuts. Sixteen of the largest advocacy groups, including the Bazelon Center for Mental Health Law, the American Psychiatric Association, the American Academy of Pediatrics, and Children and Adults with Attention Deficit/Hyperactivity Disorder, have formed a coalition to protect the SSI program for kids and launched a major campaign to lobby Congress.
SSI currently provides cash assistance and Medicaid to the families of 1.2 million low-income children who struggle from severe disabilities, at a cost of $10 billion a year. Since 2000, the program has grown by about 40 percent.
"Cutting the SSI program could have disastrous consequences for families, many of which already are struggling well below the poverty line," says Rebecca Vallas, a lawyer at Community Legal Services, a Philadelphia nonprofit that also is part of the coalition.
Explaining The Program's Growth
Vallas says the increase in the SSI program can be explained by a national increase in child poverty and increased access to health care for kids, who get diagnosed earlier and more frequently with disabilities that might otherwise be missed.
She also says some children who were once characterized as mentally retarded may now be diagnosed as having autism or another mental disability. Overall, the percentage of kids in the program with any form of mental disability, including retardation, has remained largely stable since the early 1990s, according to Vallas.
"I think a lot of the skepticism about the children's SSI program really is just thinly veiled skepticism about the legitimacy of mental health disorders," she says.
But Richard Burkhauser, a professor at Cornell University who recently wrote a book about disability benefits, says the increase in kids on SSI, especially those with disorders that can be difficult to diagnose, is troubling. He points to a long history of expanding the benefits.
"The issue is: Has there been a stupendous increase in the number of kids out there with other mental conditions, or is the SSI kids program increasingly being used as a more general welfare program to help poor kids?" Burkhauser says.
When the program began in 1974, the majority of recipients had disabilities such as Down syndrome, cerebral palsy, blindness and mental retardation. In 1990, a class action lawsuit that reached the Supreme Court led to a fundamental change in the way Social Security Administration made eligibility determinations for children and expanded the number of kids who were eligible for the program.
In addition, Burkhauser argues, a major overhaul of the welfare program in 1996 led some low-income families to apply for SSI instead. SSI is an attractive option because, relative to welfare, it provides a higher benefit level and has no work requirements or time limits.
States also acquired a financial incentive to shift both low-income kids and adults off welfare benefits and onto SSI, which is fully funded by the federal government. States now have staff members whose job is to evaluate whether welfare recipients can be switched over to SSI instead.
Among all poor children, the percent on SSI has quadrupled over the past 30 years, due in large part to program eligibility and other policy changes. Much of the growth has come from kids like Hulston, with ADHD or what's called "other mental disorders," who now make up more than half of recipients.
Burkhauser says that while he's not against providing more assistance for needy families, SSI is the wrong way to do it because it creates perverse incentives for families. If the child's disability improves or the family finds other ways to climb out of poverty, they lose their SSI benefits. Two-thirds of kids on SSI stay on the program as adults and "never enter the workforce," he says.
A 'Fundamental Rethinking'
While the program is easy to target for cuts, "it's easier said than done," says Mark Duggan, a professor of business and public policy at the Wharton School at the University of Pennsylvania. He compares it to lawmakers seeking to cut down on waste, fraud and abuse in health care.
David Wittenburg, a senior researcher at Mathematica Policy Research, says cuts could prove expensive in the long term.
"Given that SSI is the program of last resort and many of these youth live in families that were on other programs that have been cut back, a key question is where would they go now?" he says.
What's really needed, he continues, is a "fundamental rethinking of how cash supports are provided to youth with disabilities," so that there are incentives to promote their long-term employment as adults.
President Obama's 2012 budget proposed another approach: Increase funding for the SSA to do more regular medical reviews that evaluate whether SSI recipients are still eligible for the benefits. If the reviews find people receiving benefits who are no longer disabled, they can result in significant savings.
Poe feels so strongly about SSI that she recently traveled to Washington to testify at a congressional briefing and lobby her representatives to preserve the program. She says the SSI program is holding her family together. After her son Hulston was kicked out of preschool, she had to drop two college classes to care for him.
"I can't even express to you how much it was disrupting my household," Poe says.
She says she'd be thrilled if Hulston's ADHD improved enough to get off of the SSI program.
"The reason I applied for disability was not because that's what I want to live on for the rest of my life or my kid's life. I want to achieve things in life. I want my family to be self-sufficient," Poe says. "Right now, that isn't happening."
This story was produced through collaboration between NPR and Kaiser Health News (KHN), an editorially independent program of the Henry J. Kaiser Family Foundation, a nonpartisan health-care policy research organization. The Kaiser Family Foundation is not affiliated with Kaiser Permanente.
RENEE MONTAGNE, Host:
Jenny Gold of our partner Kaiser Health News has the story.
JENNY GOLD: By the time Hulston Poe was two years old, his mother, Suzanne, knew there was something wrong. He had tantrums several times a day, often injuring himself and others.
SUZANNE POE: Hitting his head against the wall, screaming, yelling, kicking, biting. And this temper tantrum would go on for a good hour at least.
GOLD: Poe is a single mom with two kids trying to put herself through college. She lives in Des Moines, Iowa. When things got tough with her son, she quickly sought help, but local caseworkers said there wasn't much they could do.
POE: I remember one time I dropped my son off at preschool; within 15 minutes they told me to come back and get him - 15 minutes. I hadn't even gotten out of the garage yet.
GOLD: Doctors diagnosed the four-year-old with severe ADHD and recommended SSI. In May, Hulston began receiving a monthly check of $674, and perhaps more importantly, Medicaid. Poe says his new coverage got him to the right doctors and the extra money helps her afford an appropriate daycare, a private tutor, and medication.
POE: I can see light in his eyes again. You know, he just looks so much happier.
GOLD: Much of the growth has come from kids like Hulston with ADHD, or what's called other mental disorders. They now make up over half of recipients.
RICHARD BURKHAUSER: We are overusing this program to the detriment of children.
GOLD: Richard Burkhauser is a professor at Cornell and an expert on Social Security. He argues that some of the needy families that are no longer eligible for welfare benefits turn to SSI instead.
BURKHAUSER: The issue is, has there been a stupendous increase in the number of kids out there with other mental conditions, or is the SSI kids program increasingly being used as a more general welfare program to help poor kids?
GOLD: Republicans in Congress have proposed limiting benefits for kids with ADHD, which they say could save the federal government $1.4 billion over the next 10 years. But child advocates say the move would target a critical lifeline for very vulnerable kids.
REBECCA VALLAS: Cutting the SSI program could have disastrous consequences for families, many of which are already struggling well below the poverty line.
GOLD: Rebecca Vallas is a lawyer at Community Legal Services in Philadelphia. She says the jump in SSI numbers can be explained by a national increase in child poverty and better access to health care, so children get diagnosed earlier.
VALLAS: I think a lot of the skepticism about the children's SSI program really is thinly veiled skepticism about the legitimacy of mental health disorders.
GOLD: Last month, Suzanne Poe visited Washington, D.C. to tell Congress how important the SSI program has been for her son.
POE: The reason why I applied for disability was not because that's what I want to live on for the rest of my life or my son's life. I want to achieve things in life. I want my family to be self-sufficient, and right now that's not happening.
GOLD: For NPR News, I'm Jenny Gold. Transcript provided by NPR, Copyright NPR.