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Now They Age Going After The Kids

The Arc of Illinois issues of the day from the desk of Tony

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The Arc of Illinois

The Arc of Illinois is a state chapter of The Arc

of the United States. The Arc of Illinois is committed to empowering persons

with disabilities to achieve full participation in community life through

informed choices.

Leaders in The Arc:

They won't tax the super rich! They can bail out

Wall Street and General Motors! We can afford two wars!

But let's cut off SSI to children with

disabilities! Hey, they don't vote!

This country's priorities are going the wrong way

and I am afraid we are not fighting back!

See story below from NPR this morning.

Tony

Benefits For Severely Disabled Children

Scrutinized

by Gold

August 18, 2011

Listen to the Story

Morning Edition

August 18, 2011

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 (R-KY)

and E. Neal (D-MA) and Sen. 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. Cantor (R-VA)

during the debt-ceiling debate.

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 2002, the program

has grown by nearly 40 percent.

" Cutting the SSI program could have disastrous

consequences for families, many of which already are struggling well below the

poverty line, " says 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 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.

The Incentives

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.

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.

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