HEARING ON SUPPLEMENTAL SECURITY INCOME FOR CHILDREN HEARING BEFORE THE SUBCOMMITTEE ON HUMAN RESOURCES OF THE COMMITTEE ON WAYS AND MEANS U.S. HOUSE OF REPRESENTATIVES ONE HUNDRED TWELFTH CONGRESS FIRST SESSION October 27, 2011 SERIAL 112-HR9 Printed for the use of the Committee on Ways and Means

COMMITTEE ON WAYS AND MEANS GEOFF DAVIS, Kentucky
ERIK PAULSEN, Minnesota RICK BERG, North Dakota TOM REED, New York TOM PRICE, Georgia DIANE BLACK, Tennessee CHARLES W. BOUSTANY, JR., Louisiana	LLOYD DOGGETT, Texas JIM MCDERMOTT, Washington JOHN LEWIS, Georgia JOSEPH CROWLEY, New York
JON TRAUB,  Staff Director JANICE MAYS, Minority Staff Director

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C O N T E N T S

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The subcommittee met, pursuant to call, at 9:05 a.m., in Room B‑318, Rayburn House Office Building, Hon. Geoff Davis [chairman of the subcommittee] presiding.

[The advisory of the hearing follows:]

Chairman Davis.  Good morning, thank you for joining us today.  At today’s hearing we are going to review Supplemental Security Income, or SSI, benefits for children.  SSI provides monthly Federal payments of up to $674 to 1.2 million low‑income disabled children across the United States.  In all, SSI provides about $9 billion in payments to children each year, averaging about $8,000 per child.  That $9 billion nearly matches the amount taxpayers spend for welfare checks under the Temporary Assistance for Needy Families program. 

It is one of several reasons the Boston Globe published a series last year that called the children’s SSI program “the other welfare.”  As that series detailed and we will hear today, SSI benefits for children are not only significant in size and expense, but they are also growing rapidly, with nearly a 50 percent rise of children receiving payments over the last decade.  This growth has been driven by mental and behavioral impairments, which include attention deficit, hyperactive disorder, autism, learning disabilities, and speech and language delays.  Boys are twice as likely to receive monthly disability payments as girls, and over 60 percent of children on SSI at age 18 continue collecting payments as adults over a period that can span decades. 

Especially troubling in the Boston Globe series were allegations that some children are being placed on dangerous psychotropic medications in order to increase their chances of qualifying for SSI checks. 

That is one reason why I, along with our colleague Congressman Richie Neal from Massachusetts, who has joined us today, and Senators Susan Collins, Tom Carper, and Scott Brown asked the Government Accountability Office to review this program.  From GAO’s preliminary findings we have already learned that medication is merely one factor of many that are used to make a determination. 

GAO’s review goes on to cover a broader array of issues important to the oversight rule of the Subcommittee, including trends for disabilities under which children qualify, the role of medical evidence in determining eligibility, and SSA reevaluations of children in the years after they start collecting benefits. 

We are privileged to be joined by Katie and Will Bentley of Covington, Kentucky, part of the Congressional district I am honored to represent.  Will is a child who receives SSI benefits.  We need to keep the interest of children like Will and their families squarely in mind as we consider ways of how to improve this program and how it serves them. 

A review of the hearing’s testimony revealed all of our witnesses today propose changes in how SSI works with a common goal of doing a better job helping children and families overcome the disabling conditions that led them to apply for SSI in the first place.  For example, as several experts have noted, SSI today offers monthly checks without any requirements that benefits be spent on helping the child to overcome his or her disability.  Some question whether that may create a financial disincentive to overcoming the disability, because that would mean the checks come to and end. 

Other recommendations focus on expecting teenagers on SSI to remain in school in order to qualify for payments.  A disturbing 30 percent of older teens on SSI drop out of school, which only adds to the barriers they face in going to work and leading productive lives. 

Still other recommendations go to the basic architecture of the SSI program, a largely Federal program that since its inception in the 1970s has spent $160 billion while being run from the Social Security Administration headquarters in Baltimore. 

We look forward to all the testimony today and working with our colleagues across the aisle to improve how this program serves the children and families who depend on it as well as ensuring that the program efficiently and effectively uses taxpayer dollars. 

One of the things that I would like to emphasize in this hearing, and my friend and ranking member Lloyd Doggett and I worked very hard during the course of this Congress so far in addressing the programs that we have, is to look at processes.  In many cases the processes within the Federal Government are broken.  The information systems don’t communicate with one another, it is often difficult to identify data that is helpful in helping the people that are being served by the safety net, and to find errors inside of that.  That is part of the underlying motivation as we go forward in this hearing today.  We are here to gather facts, to get information and hopefully to gain insight how to better improve that program, to improve the process and to better serve both our taxpayers and recipients of the benefits. 

Without objection, each member will have the opportunity to submit a written statement and have it included in the record at this point as well.  And with that, I will now defer to my friend Lloyd Doggett from Texas, the ranking member. 

Mr. Doggett.  Thank you very much, Mr. Chairman.  And the objective that you mentioned in your opening statement of helping families deal with these great challenges that they encounter with a child or children with disabilities is a shared goal that we have.  And seeing that the Supplemental Security Income program, or SSI, is administered in an efficient and effective way is a goal that we share.  It is one of the reasons that Mr. Neal and others have joined to ask the Government Accountability Office to take a look at the reports that were raised by the Boston Globe. 

On the other hand, when we have studied unemployment we have had some members almost suggest that the main problem with unemployment is the unemployed and that they can be blamed for the situation.  And we ought not to follow a course along those lines as it relates to children with disabilities. 

SSI assists families who are dealing with a child with a disability, physical, mental or both.  And only about a tenth of the children in the country with such disabilities receive SSI and the benefits amount to about $600 a month.  These are benefits that help offset the cost of caring for severely disabled children. 

SSI is particularly important in my home State of Texas where we have so many poor children generally and particularly poor disabled children, about 130,000 in the State who are receiving benefits.  Two such children live near where I do in central Texas in Bastrop County, Tyler and Noah Roberts.  They are 5‑year old twins.  When you look at their photos you see two very beautiful little boys, but they are little boys who have severe autism.  One is nonverbal and engages in behaviors like flapping his arms, spinning and throwing tantrums.  The other is verbal but has severe anxiety, intestinal and sensory problems.  These are serious conditions that have greatly impeded their mother’s ability to maintain a regular work schedule, and she depends on SSI to keep food on the table and roof over their heads. 

I have seen situations just like this in the work that my wife has done.  Before I came to Congress she headed an early intervention program working with infants and very young children who had severe disabilities across the Texas hill country.  This is not an isolated case.  It is an example of the challenges that families face that we need to be assisting, not blaming them for the problem that they have. 

There has been some growth in the SSI program since 2001 largely in response to the growing number of children that live in poverty in this country.  Just because more families like the Roberts are receiving SSI benefits to help raise their children with autism and other significant problems doesn’t mean they should be targeted for cuts.  During the last decade almost 5 million more children have fallen below the poverty line.  One could reasonably assume that the increase would have an impact on a program designed to help low‑income families with disabled children. 

While we hear suggestions that the program has changed, the Congressional Research Service concludes that the rate of children on SSI as a percentage of children living in poverty is about the same now as it was in 2001. 

Further, we have increased efforts to identify childhood disabilities.  The Center for Economic and Policy Research found that the number of children receiving screening and diagnostic services under Medicaid rose from a little over 5 million to over 20 million children from 1998 to 2008.  Nevertheless, there has not been an increase in SSI approval rates for children with mental impairments.  According to the Social Security Administration, the percentage has actually dropped from 2001 to 2010. 

There are a number of steps that we can and should take to improve the administration of SSI, and I hope we will explore those in the hearing.  First, I think Congress needs to make good on its pledge to provide adequate resources to conduct continuing disability reviews to ensure that SSI recipients maintain their eligibility for service.  And President Obama’s administration has nearly doubled the number of those reviews compared to the last year of President Bush. 

Second, if we are serious about improving outcomes for children receiving SSI, I look forward to discussing other supports we can offer these families as they work with their children and they seek employment opportunities for unemployed disabled children. 

We are, as the chairman indicated, joined by the Bentley family, by Katie and her son Will, who receive SSI.  They are accompanying Jonathan Stein, who is testifying.  Despite the severe impairments that Will faces, Mrs. Bentley and her husband were reluctant as many families are to even apply for SSI.  They wanted to support Will on their own.  But after Mrs. Bentley had to close her business to care for Will the financial burden was heavy and she took the benefits that she is entitled to take.  Since Will has been receiving these benefits his outcomes have improved remarkably.  According to Mrs. Bentley, the life altering value of SSI is worth so much more than its monetary value.  It is truly priceless in her words. 

Mr. Chairman, we can all agree on the need to improve and strengthen SSI outcomes, and I look forward to working with you on reform, but let’s reject any direct cuts in assistance to the disabled in the name of helping them.  However great our Nation’s fiscal challenges may be, we ought not to balance the budget on the backs of disabled children. 

Thank you.

Chairman Davis.  I thank you very much, Mr. Doggett.  We are also pleased to be joined by our colleague on the Ways and Means Committee, Representative Richie Neal of Massachusetts, who joins me and others in requesting the GAO review showing concerns of families and about how they access SSI benefits for children and ultimately how the program might be improved. 

Mr. Neal, do you have any comments before we get hear from our witnesses?

Mr. Neal.  Thank you, Mr. Chairman.  Just a couple of thoughts if I could, just a brief statement and I find myself in agreement with what you said and with what Mr. Doggett said.  I think that is the path forward, to have deliberative effort here. 

I want to thank you first for allowing me to give some brief opening comments even though I am not a member of the subcommittee.  And I am very pleased the subcommittee through you and Mr. Doggett have called the hearing to examine the state of SSI in America.  SSI for children is a program that has been brought to my attention as well as New Englanders by an illuminating and powerful three‑piece and three‑part series by Patricia Wen of the Boston Globe, but also anecdotally by educators, parents and health care professional, in Springfield, Holyoke and other cities and towns in Massachusetts with high populations of SSI recipients. 

The Globe map that I would encourage all of us to take a look at that demonstrated a clear concentration of SSI recipients in the older cities in Massachusetts speaks to the issues that you have raised and the issues that Mr. Doggett have raised.  But I also believe that the role of the Federal Government is to aid the most vulnerable amongst us.  The SSI program was created to do just that, originally to provide financial support for children with severe physical disabilities and to evolve as our health care system has evolved to support children who suffer from behavioral and mental health issues as well. 

I have met with the Social Security Administration and the Administrator, Michael Astrue, about my concerns with SSI.  I requested the administration meeting with President Obama as well as SSI administrators and I would suggest to this committee that we include an Institute of Medicine study to examine the concentration of SSI recipients in the old cities of Massachusetts.  And why?  Simply to get to the bottom of the issue as to the role that the program plays in helping those who need it and to avoid the potential for stigmatizing children when it becomes the first option that is suggested from health professionals. 

I have asked the GAO along with the members of the subcommittee to conduct an objective and balanced analysis of the SSI program and to specifically look into provocative topics like suspected over prescribing of medications and the lack of a periodic review of the health care progress for children.  I think everybody would agree with that, that is not a system that we reviews sufficiently the progress that children might be making.  I am interested in what the report concludes.  You should know I have drawn no conclusions and would be anxious to hear from the Institute of Medicine. 

The Social Security administrator has indicated that that study would cost about $10 million.  I think that is a reasonable expenditure so that we might determine how we go forward.  Supplemental Security Income for Children is an important program for the very vulnerable and neediest of the population, but oversight of the program is necessary as well to ensure its mission in assisting those vulnerable children remain intact while abuse might be examined and identified and where possible eliminated. 

I also want to emphasize that I have not again drawn any conclusions, but I want to tell you the series that the Boston Globe outlined is a powerful reminder of the responsibilities that we have to these children. 

I thank you and Mr. Doggett for allowing me to participate this morning. 

Chairman Davis.  Thank you, Mr. Neal.  Before we move on to our testimony I would like to remind each of our witnesses that they need to limit your oral statements to no longer than 5 minutes.  Without objection, all of the written testimony will be made part of the permanent record. 

On our panel this morning we will be hearing from Dan Bertoni, Director of Education, Workforce and Income Security, the U.S. Government Accountability Office; Richard Burkhauser, Professor, Department of Policy Analysis and Management at Cornell University.  Dr. Burkhauser will also be testifying before another subcommittee this morning and so will need to leave before the end of the hearing, but we certainly appreciate his taking the time to join us and including your testimony in the record.  He is also joined by David Wittenburg, Senior Researcher from Mathematica Policy Research; Jonathan Stein, General Counsel to Community Legal Services in Philadelphia and also representing the SSI Coalition for Children and Families; and Elizabeth Roberts, Child and Adolescent Psychiatrist joining us from Murrieta, California. 

Mr. Bertoni, please proceed with your testimony.

STATEMENT OF DANIEL BERTONI, DIRECTOR, EDUCATION, WORKFORCE, AND INCOME SECURITY, U.S. GOVERNMENT ACCOUNTABILITY OFFICE

Mr. Bertoni.  Mr. Chairman, Ranking Member Doggett, Mr. Neal, members of the subcommittee, good morning.  I am pleased to discuss our preliminary observations on children with mental impairments and supplemental security ‑‑

Chairman Davis.  Could you make sure that the light is on there?

Mr. Bertoni.  It is on.

Chairman Davis.  Okay, maybe the mic needs to be a little closer, thank you. 

Mr. Bertoni.  In 2010, SSA paid over $9 billion in SSI benefits to more than 1.2 million children.  In prior work we reported that the number of children on SSI had increased substantially due in part to program changes that expanded eligibility for those with mental impairments.  And despite modifications intended it address this growth, the number of children on SSI with such impairments has continued to rise. 

My testimony draws on our ongoing work, presents our observations on trends in the rate of children receiving SSI, the role medical and non‑medical information plays in the disability decision process and steps SSA has taken to review the continued eligibility of children. 

In summary, we found that the number of children who applied for SSI benefits due to mental impairments increased 60 percent over the last decade, and such cases now comprise a growing majority of all child beneficiaries.  Moreover, between fiscal years 2000 and 2010 the number of children found eligible for benefits increased for almost every mental impairment category with the most prevalent being ADHD, speech and language delays, and autism.  However, over the last decade the average allowance rate for all children with mental impairments has held steady at about 46 percent. 

Several factors may have contributed to trends in the roles, including agency and advocate outreach, increased diagnoses of certain mental impairments, and the number of children living in poverty.  However, it is unclear how any single factor or combination of factors have driven such trends. 

During our field work DDS examiners noted that they rely on a combination of medical and non‑medical information such as treatment records, prescribed medications, school records and teacher assessments in determining a child’s eligibility.  In short, the decision is based on the totality of information rather than any one piece in isolation. 

Examiners obtain evidence such as psychological tests and physician’s notes to assess children with alleged mental impairments and when such evidence is inconclusive they may purchase an independent consultative exam of the child. 

With regard to the role of prescription medication, DDS examiners in various locations told us it is generally given no more weight than any other information, and in some cases if medication improves functioning, it can be a factor in denying a claim.  However, certain field offices acknowledge that some parents may believe that medicating their children will improve their likelihood of receiving benefits.  In going forward we plan to conduct an in‑depth case file review to assess the relative weight medication and other evidence plays in SSI decisions. 

In regard to non‑medical information, we found that some DDSs face challenges in obtaining school records and teacher assessments, which can be a critical source of information for assessing a child’s functioning over time, partly due to the school’s and teacher’s reluctance to complete such assessments.  And finally, although SSA is required to periodically conduct continuing disability reviews, or CDRs, of children on the rolls, such reviews decreased substantially over the last decade, from more than 200,000 to about 126,000.  And those for children with mental impairments decreased from 84,000 to only 13,000 last year. 

We identified over 400,000 child SSI cases with mental impairments that were overdue for a CDR, with thousands of cases exceeding their scheduled dates by several years.  Of the CDRs SSA did conduct last year the average benefit cessation rate was 24 percent, with personality disorders and speech and language delays having higher rates of rescission at 34 and 33 percent respectively. 

SSA has acknowledged the importance of conducting CDRs but has primarily attributed its failure to do all required reviews to resource constraints and competing workloads.  Thus the program continues to be exposed to substantial overpayments. 

The recently enacted Budget Control Act of 2011 authorizes additional funding for SSA to do more CDRs and SSI redeterminations, and the agency is currently assessing how it will use such funding should it be appropriated. 

Plus, it is not yet known whether SSA will use this funding to do additional childhood CDRs or target its efforts toward those mental impairments with the highest potential cessation rates as a means of best leveraging its limited resources. 

Mr. Chairman, this concludes my statement.  I am happy to answer any questions that you or other members of the subcommittee may have.  Thank you.

[The statement of Mr. Bertoni follows:]

Chairman Davis.  Thank you, Mr. Bertoni. 

Dr. Burkhauser, please proceed with your testimony.

STATEMENT OF RICHARD V. BURKHAUSER, PH.D., PROFESSOR, DEPARTMENT OF POLICY ANALYSIS AND MANAGEMENT, CORNELL UNIVERSITY

Mr. Burkhauser.  Thank you for the opportunity to submit a summary of my research on the SSI disabled children’s program contained in my new book with Mary Daly. 

In 1974, the SSI disabled children’s program provided benefits to a small subpopulation of poor families with age eligible children.  Only about 10 per thousand poor children received such benefits.  Program caseloads grew modestly to 20 per thousand by 1989.  Between then and 1996 the number more than tripled to 65 per thousand, fell modestly for a year, and then increased to 80 per thousand in 2007. 

Based on our reading of the evidence, this dramatic growth is not a result of a growing health epidemic of poor children, but rather the consequence of several policy decisions that have turned a modest program for disabled children into a more general welfare program that in large part serves the same poor single mothers in the TANF population. 

Seventy‑one percent of SSI families are headed by single mothers or other non two‑parent families.  Increasingly, their children have medical conditions that are difficult to objectively measure and they are coming onto the SSI program via increasingly subjective evaluations by SSA gatekeepers. 

So why has the SSI caseload risen?  Is it a health epidemic?  While it is difficult to obtain information on the underlying health of poor children, we find no evidence of worsening health in this population.  While the number of poor children has increased, the number of children in that population receiving SSI benefits has increased even faster; hence, the 400 percent growth in their share among poor children previously mentioned. 

Is it program policy factors?  I believe it is and I focus on three policy effects.  The first is TANF and SSI interactions.  The typical SSI applicant family is headed by a poor single mother who is eligible for TANF.  Because SSI benefits are larger than TANF benefits and have no work requirements, it is in the interest of these single mothers to apply and economists have shown that the greater the difference the more likely they are to do so.  States also have an incentive to move their TANF families to the SSI program, thus cost shifting their payments to the Federal Government.  This becomes a more realistic option, the lower the standard for establishing SSI eligibility and the more subjective SSI’s eligibility decisions are. 

So here is where the second change comes in.  Eligibility standards were both lowered and made more subjective in the wake of the Zebley case, and this explains much of the increase in SSI caseloads between 1989 and 1996.  As part of welfare reform, Congress modified definitions of disability for children, creating a new stricter standard.  This reduced caseloads per child, but only for 1 year. 

Here is where the third change comes in; that is, a change in the way SSI gatekeepers interpret these rules.  The outcome of applying more subjective criteria to determine eligibility can be seen in the percentage of SSI awards for two conditions:  Mental retardation and other mental conditions.  These two conditions represent extremes between medically measurable and more subjectively determined outcomes. 

In 1983, approximately 37 percent of new beneficiaries qualified based on mental retardation, and only 5 percent based on other mental conditions.  Today over 55 percent of new beneficiaries claim other mental conditions. 

In sum, the research findings provide plausible evidence SSI program growth has primarily been driven by policy changes rather than the declining health of poor children.  But what policy caused, new policies can change, but only if they are fundamental changes. 

The SSI program closely resembles more general welfare programs and thus can be changed using many of the same principles applied in moving from AFDC to TANF.  This would mean moving SSI from the Federal Government to the States.  This devolution would, like TANF, hold States accountable to Federal guidelines regarding outcomes of children with disabilities.  Like TANF, SSI could be funded by block grants and States could be asked to comply with broader goals. 

Devolution to the States would also solve three major problems with the current program.  First, on equity grounds, placing responsibility for all welfare families with the States would reduce the difference in treatment of poor families based on the often subjective decision of whether their children meet the SSI standards. 

Second, devolving the SSI program to the States would limit State incentives to shift the cost of managing welfare caseloads to the Federal Government through the SSI. 

And third, devolution to the States, who have far more experience than SSA in transitioning poor single mothers in the workforce, would allow these single mothers to work now and eventually allow their disabled children the opportunity to work after the children age off the SSI rolls. 

Thank you for the opportunity for speaking today.

[The statement of Mr. Burkhauser follows:]

Chairman Davis.  Thank you very much, Dr. Burkhauser.  Dr. Wittenburg, if you could give your testimony.

STATEMENT OF DAVID WITTENBURG, PH.D., SENIOR RESEARCHER, MATHEMATICA POLICY RESEARCH

Mr. Wittenburg.  Thank you, Chairman Davis, Ranking Member Doggett, and members of the subcommittee, for the opportunity to testify on how we can improve efforts to provide supports to child SSI recipients. 

I have written several reports about the outcome of the these youth.  And I will make three points about this program related to issues raised in recent media reports, including the Boston Globe series. 

The first point is about the importance of the child SSI program as an anti‑poverty tool.  A key indicator of the program’s effect on poverty is that on average the child’s SSI benefit check currently accounts for approximately half of the income of the family. 

A second related point is about the strong individual and State incentives that encourage families to apply for SSI over existing State welfare programs like TANF.  This point, that goes to Dr. Burkhauser’s point just made, that families might be enticed to apply for SSI on behalf of their child because the Federal SSI benefit on average is $200 larger than State TANF benefits.  Because TANF is funded by a block grant, States can also financially gain because every dollar saved by a transfer of a TANF recipient to SSI remains within the State.  For these reasons a low‑income parent who has a child with even a moderate disability has a financial incentive to apply for SSI, and could even be encouraged to do so by a State worker. 

The caseload trends illustrate this gradual federalization.  Since 1989 child SSI caseloads have increased by 350 percent while the corresponding State welfare caseloads have dropped by more than 50 percent.  There is evidence of direct transitions across the programs.  A key question is whether this movement increasingly towards using child SSI supports for low‑income families is appropriate. 

This question leads to my third point, which is the most important point in my testimony, and is illustrated on the slide above.  A major concern is the program’s affects on the outcomes of young adults.  And this slide shows between the ages of 19 to 23 former child SSI recipients reported first of all substantial dropout rates.  Two in five did not have a high school diploma and were not actively attending school.  Low employment rates, almost four in five are not currently working.  Most disconcerting, high arrest rates, one in five had been arrested.  And unfortunately these arrest trends are consistent with other reports that indicate 30 to 50 percent of incarcerated youth with disabilities could qualify for other services. 

Finally, reliance on SSI benefits is a long‑term option.  Just over three in five are receiving SSI after age 18.  Taken together, these poor outcomes suggest a need to rethink the current policies.  Any approach though should balance the outcomes needed above with also providing income supports that keep low‑income families out of poverty. 

One approach to reforming policy and to reverse the outcome shown on this slide is to pilot the addition of education and/or work requirements for continuing SSI eligibility.  This option maintains the current structure of the child program but alters the potential adverse incentives children face regarding school and work.  The infusion of education requirements would also make the child SSI program more consistent with the Individuals With Disabilities Education Act, which provides free and appropriate education services to youth with disabilities. 

A second more ambitious approach is to look at the broader safety net and consolidate service delivery to more specifically meet the diverse needs of youth with disabilities and their family.  This option is especially important given the fact that the line between TANF and SSI has become blurred.  Improving program design requires rethinking of existing programs and designing new approaches that should be tested to build a consensus on what works.  Such rethinking could include local, State, Federal or even private providers who provide a more integrated set of reports. 

While we do know some information to approach the problem, the exact model for reform is not known at this time because it has not been tested.  So we should not rush to a solution.  Experimentation, however, can lead to innovation of promising practices, service delivery and effective policy.  For this reason I suggest the use of congressional authority to invest in major demonstrations which will highlight models that could improve health and social outcomes and potentially save significant tax dollars.  Failure to do so only delays our ability to develop policies to improve the lives of youth with disabilities.  Youth are worth the investment, and the outcomes I outline today indicate that we should be more aggressive in efforts to help them reach their full potential. 

Thank you and I would be pleased to take your questions.

[The statement of Mr. Wittenburg follows:]

Chairman Davis.  Thank you, Dr. Wittenburg. 

Mr. Stein, you may proceed.

STATEMENT OF JONATHAN M. STEIN, GENERAL COUNSEL, COMMUNITY LEGAL SERVICES OF PHILADELPHIA, AND MEMBER, SSI COALITION FOR CHILDREN AND FAMILIES

Mr. Stein.  Good morning, I am Jonathan Stein, General Counsel at Community Legal Services in Philadelphia, where I have represented children with disabilities and their families for most of my 43 years of practice.  CLS is a member of the SSI Coalition for Children and Families, 80 organizations that share the belief that SSI is a critical lifeline for children with severe disabilities, our Nation’s most vulnerable children and youth. 

I first would like to introduce you all to Will Bentley, and his picture is up there on the wall.  Will is an 8‑year‑old boy who lives in Covington, Kentucky with parents and sister.  Nearly from birth Will’s parents knew something was wrong.  Will was very slow in learning to speak and had trouble eating and drinking because he wasn’t able to keep liquid in his mouth.  His parents enrolled him in First Steps, Kentucky’s Early Intervention program, where he learned to sign with his hands so that he could communicate with his family. 

At age 3 Will began to have frequent violent seizures.  His diagnoses grew to include developmental delays, speech delays, Sensory Integration Disorder, Anxiety Disorder, frequent bouts of depression, among others.  Taking Will to all his needed medical and therapy appointments became a full‑time job for his mother, Kate. 

Katie Bentley was forced to shut down her small business to stay home and care for Will and the family suffered a huge loss of income.  In Katie’s own words, “My husband and I really wanted to support Will on our own, but we quickly learned that the dream we had of our own family would never become a reality.  I surrendered my career and we adapted our lives so that Will’s needs could be met.  Before he was granted SSI in 2010 we barely could even afford the gas to drive him to his therapy appointments with his specialist.  Now SSI allows us to focus on Will’s needs.” 

And as she further says, “At one time Will was unable to do anything for himself, he couldn’t even feed himself.  Now he has learned to write his name, and a few days ago Will learned to zip his own jacket, and is even learning to read.  The wealth of support that comes from SSI and Medicaid is a dream come true for us,” says Katie Bentley. 

Helping children with severe disabilities like Will lead their fullest lives possible requires access to treatment and support services as well as financial support to replace lost income when a parent must stay home to care for the child.  SSI is a key ingredient to helping them get the care and support they need. 

Sensational and ill‑informed media accounts as in the Boston Globe and elsewhere have relied almost entirely on anecdotal observations and half truths.  So let’s instead consider some facts. 

Fact, only the most severely impaired children qualify for SSI.  Fewer than 10 percent of all children in the Nation with disabilities receive SSI.  And this is because of the extraordinarily strict SSI disability standard, an objective standard, unlike Mr. Burkhauser’s characterization of it as subjective.  Just 39 percent of children who apply are awarded SSI, a figure that has remained essentially unchanged for well over the past decade. 

Fact, SSI was established by Congress to aid children and adults with physical as well as mental impairments.  As a Nation we have made great strides toward achieving parity between mental and physical disabilities.  Any debate over whether mental impairment, such as ADHD or autism, are as “legitimate” as physical disabilities represents a significant and shameful step backwards. 

Fact, ADHD is a neurobehavioral disorder with clear medical diagnostic criteria recognized by the National Institutes of Health and a myriad of other respected organizations.  Only the most severe cases of ADHD qualify for SSI.  Just 26 percent of children with ADHD who apply for SSI are approved.  Thus three out of every four children with ADHD are denied.  In fact, the allowance for ADHD has been declining in recent years. 

Fact, a prescription for medications would never on its own make a child eligible for SSI.  In fact being on medications can actually make a child less likely to be found eligible for SSI if they lessen the severity of the child’s impairments.  Moreover, SSA data show that children with ADHD who are taking medications are no more likely to be approved for SSI than those not taking medications.  And the fact is there is nothing in the GAO report that cites a study to be contrary to that. 

We look forward to hearing, though, GAO’s findings when it has completed its study and expect they will match SSA’s own findings. 

Fact, growth in the children’s SSI program in recent years is due primarily to increasing poverty.  As the number of poor children in this country has reached tragic new heights, over 16 million U.S. children now live in poverty versus 11 million a decade ago.  More low‑income children obviously are financially eligible for SSI.  Yet the share of children in poverty who receive SSI has remained unchanged for the past 10 years, 7.5 percent. 

I am nearing my end, Mr. Chairman.

Chairman Davis.  We are well past that.

Mr. Stein.  Might you just give me one more minute.

Chairman Davis.  No.  If you could sum up briefly with 1 sentence. 

Mr. Stein.  Okay.  I will be saying the following:  I would urge the subcommittee not to take hasty action, and to wait for the GAO study and then seek a study from the Institute of Medicine or the Association of University Centers on Disability.  And I would say, as I have said earlier, this is a critical lifeline for families like the Bentleys.  And if any members of the subcommittee have any questions of Mrs. Bentley, who is sitting behind me to the right, she is also available to respond to questions. 

Thank you.

[The statement of Mr. Stein follows:]

Chairman Davis.  I appreciate that, Mr. Stein.  I wish we had unlimited time for all of our witnesses.  It is simply a constraint with the overall schedule of the Congress today.  I am personally looking forward to meeting with the Bentleys against after the hearing concludes. 

We are going to move on now to Dr. Roberts.  You are recognized for 5 minutes. 

STATEMENT OF ELIZABETH J. ROBERTS, M.D., CHILD AND ADOLESCENT PSYCHIATRIST

Dr. Roberts.  Thank you, Chairman Davis, Mr. Doggett, for inviting me to speak today. 

As a child psychiatrist, I have treated hundreds of children who are receiving the Supplemental Security Income.  And what I have observed in the cases that I have been treating is an alarming abuse of the SSI system, but more importantly I have observed what a devastating effect the abuse of the SSI system can have on child and family.  Because diagnosing a child with a psychiatric condition is based almost exclusively on the verbal report of the child’s parent, it is easy for a doctor to arrive at the wrong conclusion.  There are no blood tests, CAT scans, MRIs, SPECT scans, and what have you, that can accurately diagnose a mental disorder. 

The misdiagnosis of children with psychiatric conditions and the consequential over medicating of these kids has become a problem of epidemic proportions in the United States.  And when you add the financial incentive of getting your child diagnosed and treated with a mental illness, the pursuit of SSI benefits for children has become an irresistible attraction of poor families.  If this abuse of SSI were only a waste of taxpayer dollars, that would be bad enough, but the fraudulent use of SSI is hurting children both emotionally and physically.  The best way that I can think to elucidate this problem is give you examples of children I have actually treated. 

In 2002, I met an 18‑year‑old girl who had been assigned to me at the Riverside County Mental Health Clinic for a psychiatric evaluation.  For the purpose of this testimony I will refer to her as Sarah.  Sarah explained to me that she was required by the SSA to be reevaluated if she wanted to continue to receive her benefit check.  She told me that since she was 14 she had been abusing every street drug imaginable, methamphetamine, cocaine, LSD, marijuana, alcohol, and others. 

It was at 14 that she started abusing drugs and this is when her mother took her for an evaluation at the county mental health clinic.  When she was high on speed she was hyperactive and agitated.  When she was drunk, she was depressed.  She only experienced her mood symptoms while she was using or withdrawing from drugs. 

Prior to the time that Sarah started using drugs, she had no serious mood problems, aside from being belligerent and demanding with her mother.  Regardless, her physiatrist diagnosed her with bipolar disorder.  And with this diagnosis her mother was able to secure SSI benefits.  And though she was prescribed psychiatric medications for her mood disorder she told me she never took the medications consistently and usually refused them altogether. 

Furthermore, Sarah explained that she continued to abuse street drugs for the next 4 years.  She described her own behaviors as defiant and rebellious and wild throughout those drug‑soaked teen years from 14 to 18 years old.  Sarah presented her history with pride and impunity. 

At 18 Sarah moved out of her mother’s house, starting to cash and keep her SSI benefits of over $800 a month.  I guess kids get more in California than they get elsewhere.  Though she abused drugs excessively she was an otherwise beautiful, physically healthy, able bodied, trim, attractive, smart, Caucasian blonde girl. 

Sarah reported it to me in this first session that she established the practice of cashing her SSI check each month, checking into a cheap motel, buying up all the meth with the SSI funds that she could afford.  And then she and her boyfriend would use drugs continuously until the money ran out.  And when the motel evicted them for nonpayment, they would sleep on the streets and panhandle for money until the next SSI check arrived. 

With the start of each month Sarah and her boyfriend would cash the SSI check and repeat the same routine.  When I confronted her with the fact that using the SSI funds to do drugs was destroying her own life, she stated that she didn’t care and that she was having fun.  She told me that in spite of the fact that she was perfectly capable of working, her bipolar diagnosis entitled her to the SSI money and that she had every intention of continuing to use that money to finance her drug use. 

When I pointed out to Sarah that people worked hard, paid their taxes to support program such as SSI for the benefit of the truly needy, like Will Bentley, she responded by telling me people who work and pay taxes are chumps.  Furthermore, I explained to her the abuse of the SSI system was fraud.  She went on to provide me with the following advice:  If working people had half a brain they would figure out her scam and take advantage of the system as she had. 

I offered Sarah psychotherapy, vocational training, drug rehabilitation.  She declined all of our services at the county clinic, and including I offered her medication prescriptions.  She said she hadn’t been taking them anyway and she refused all our services.  She asked that I please just simply complete her renewal application for the SSI benefits.  I completed the application, providing the SSA evaluators with all the information I had gathered in this first meeting, and her benefits were denied.

Chairman Davis.  Dr. Roberts, I just encourage you to wrap up. 

Ms. Roberts.  We are out of time.  I am sorry, I didn’t notice.

[The statement of Dr. Roberts follows:]

Chairman Davis.  Thank you.  And we have the rest of your statement in the record as well for further review.  I appreciate everybody’s testimony.  We are going to go ahead and move now to questions. 

In the testimony that we have heard today, it appears there are both short- and long-run recommendations on how to help disabled children better prepare for adulthood and recognizing a wide range of needs within the population of children receiving SSI benefits. 

Mr. Bertoni, your testimony indicates that, while mental impairments are the diagnosis for two‑thirds of the children receiving SSI, the continuing disability reviews, or CDRs needed to confirm children in this group remain eligible, have dropped by 84 percent in the past decade.  On page 21, you display a chart that shows how the reviews are years overdue for nearly all child recipients with mental impairments. 

Looking at the short-run, Mr. Bertoni, of the trends involving children on SSI due to mental impairments, what does the evidence suggest SSA should be doing to better manage this program?

Mr. Bertoni.  I think at the front end SSA should be concerned and looking at the rise in some of these impairments.  Especially in speech and language it appears to have increased precipitously.  Many of those ‑‑ that impairment can be viewed as transient in nature, likely to improve.  But at the back end much of their focus has been on age 18 redeterminations and low birth weight babies, about 87 percent of all CDRs.  So we have 13 percent of all other CDRs that are looking at all other mental impairments. 

I think it would behoove the agency to sort of tease out some of these impairments that, number one, are growing in terms of raw numbers, and our own CDRs have shown to have fairly large high cessation rates, speech and language 33 percent cessation rate right now.

Chairman Davis.  So you are saying in effect, if I could just offer a possible example, and tell me if I am right or wrong, that a person who might have been a young person 3 or 4 years old was diagnosed with this, it is possible without the CDR say coming at a reasonable time, within a couple of years, would remain on SSI all the way until age 18 without reviews. 

Mr. Bertoni.  Certainly right now the case goes up to 174,000 cases and if they are only doing 13 percent of all mental impairments, I think it is fair to say that very few speech and language delay cases are being reviewed.  It is probably fair to say that many of those children are probably on the rolls well beyond a CDR that could possibly have ceased them.

Chairman Davis.  Thank you.  Dr. Wittenburg, the outcomes you describe in your research for older youth on SSI are terrible, quite frankly.  No one would want that for their children: high rates of school dropout and low rates of work, training, or other positive activities.  Two questions, really.  First, what should we do about that?  And secondly, is the Social Security Administration equipped to take the steps needed to improve the outcomes or is this the type of effort that State? agencies need to be involved in as we saw with welfare reform?

Mr. Wittenburg.  That gets to the heart of my testimony, I think that is an excellent question, Chairman Davis.  I think the short answer for what can SSA do about it is look into school and possibly work requirements for child SSI recipients as well as young adult SSI recipients to reorienate them around the concept of work is potentially an important step, but the bigger picture that I wanted to focus on is the appropriateness of the child SSI benefit and meeting all the diverse needs of the families. 

I think as you heard across all the testimonies today, you have got a diverse spectrum of youth here.  So when we talk about devolving to the State level, I think that is an interesting concept because that is where the services are provided to these youth, that is where schools and voc rehab is provided, and that is where Medicaid is provided.  So there is an interesting potential to bundle services, but I would stop short of saying we should go ahead and block grant that to States because at least in some of the experiences under TANF States have not spent their money for other resources.  So if you block grant SSI and TANF, a key question is will some states have enough resources to serve both programs given that they are having difficulties serving just TANF in some states?  That is why I suggest a more integrated approach that could occur at the State or other levels that might even include private providers.  And that is why experimentation is really important. 

Mr. Stein.  Mr. Chairman, may I add to that answer if I could in response to your question? 

Chairman Davis.  Sure.  We just have a few seconds though. 

Mr. Stein.  Yes, sure.  Concerning the whole idea of bad outcomes to which Mr. Wittenburg refers, isn’t it really not a surprise that there is a high unemployment rate for disabled children; whether they are on SSI or not, they are not going to be employed in great numbers or may be dropping out of school.  What Mr. Wittenburg is not doing is comparing those disabled kids on SSI with other disabled children.  Don’t they all share similar problems or outcomes that we are not that pleased with but we have to understand come because of severe disabilities?  Yes, they will drop out of school, and yes, they will have somewhat lower employment rates than others because of the very severity of their disabilities.

Chairman Davis.  I appreciate your perspective.  The reason we are holding this hearing today is to ask some questions that often don’t get asked.  We are trying to work in a number of areas related to processes and really understanding how to help these young people the best way possible so they can go back to work.  And I think the one mistake we don’t want to make is to assume, well, because this has been the issue in the past, we therefore should continue to insist that we won’t address the root causes of that.  Rather, I think the point of asking is to assure that we look at creative ways to address that and make sure that very worthy young people like Will and his family receive support.  And for those who may never be able to make that transition we understand that.  But on the other hand, I have seen some great success personally in the professional world with young people, incredible disabilities that had been able to move into meaningful work.  I think it comes back to community involvement, working the front lines and asking questions like we are asking today.  Whether we all agree with each other or not, there is great benefit.

Mr. Stein.  And we do, Mr. Chairman, have specific recommendations in our written testimony which I won’t repeat here.

Chairman Davis.  Reclaiming my time.  You will have plenty of opportunity, I am sure, to share as the other members of the panel ask questions.  And with that I will defer now to Ranking Member Doggett for 5 minutes.

Mr. Doggett.  Thank you, Mr. Chairman.  I would ask to be made part of our record an excellent article in today’s USA Today, Cutting SSI Would Only Hurt Children, written by Dr. Susan Parish of Brandeis University and Dr. James Perrin, a Professor of Pediatrics at Harvard Medical School.

Chairman Davis.  Without objection.

[The information follows:]

Mr. Doggett.  Just reading a couple of lines from that report, I think we have had testimony in my opening statement to this effect, but “SSI serves only low‑income children with the most severe mental and physical impairments.  Its medical and financial eligibility requirements are so strict that only 1.6 percent of the children in the United States and fewer than 10 percent of kids with disabilities receive SSI.  In fact, the overwhelming majority of children who apply for SSI are denied.  Congress should look for ways to support our Nation’s most vulnerable children and families instead of painting a target on their backs in the name of deficit reduction.” 

That certainly summarizes my own feeling about this.  I am against scams.  I think everybody on this Committee is against scams.  I am against them whether they are committed by giant pharmaceutical companies at the cost of tens of millions of dollars to public service programs or they are committed by one young woman who goes off to have drugs with her boyfriend.  And it seems to me that the focus ought to be on getting at the scams rather than on denying benefits to many deserving families. 

We have one way of getting at scams under the system and that is the disability reviews.  Unfortunately, under the Bush administration the resources for those disability reviews were significantly reduced and finally under the current Administration we have begun to increase the review process.  That is where the focus ought to be, rather than across‑the‑board cuts. 

I find the testimony of Dr. Burkhauser has left the suggestion that because the States have done such a great job reducing benefits in Temporary Assistance for Needy Families, in cutting the level of those benefits and affording them to fewer and fewer families, let’s let them do the same thing for families with children with severe physical or mental disabilities.  It is a little like the argument that some people have made that because the States do so little with Medicaid in our nursing homes, let’s let them administer Medicare too and save some money at the expense of seniors and individuals with disabilities.  I think that is very backward thinking.  I know what will happen in Elgin, Texas to this beautiful set of twins who suffer from Autism.  They will get the same kind of second rate support from the State of Texas that the State of Texas provides through the Medicaid program for those who rely on it who can barely get by and can’t get all the prescriptions that their doctors provide to them. 

Mr. Stein, what would be the effect as you see it in States across the country for these families if we just turn all this, we use I believe the term devolution, let’s give it all back to the States instead of maintaining any Federal program with reference the SSI.

Mr. Stein.  I think there would be terrible consequences, Mr. Doggett.  There would be a lack of equity.  There would be a lack of minimum standards.  There would be the very subjectivity that perhaps Mr. Burkhauser is concerned about. 

When you have a national system like the Social Security one for kids and adults, you have national standards, you have quality controls in place.  In fact, the quality control accuracy rate for decision making in child disability cases is something like 97 percent. 

Now, there is a kind of myth out there that this is the new welfare; this is almost a defamation of the SSI kids program.  And it is the wrong assumption that suddenly when you reduce the TANF rolls, all those kids go on to SSI.  I think you have heard a little theme about that by a couple of people at this table.  But despite those allegations that SSI is or has become a general welfare program, the truth is that being poor is not enough to qualify for SSI.  To get SSI you also have to have a very severe disability, and the Congress in 1996 in the welfare legislation then upped the severity standard greatly. 

Mr. Doggett.  Let me just ask you one other question that has been referred to in testimony I think by Dr. Roberts and by others here.  Looking at the testimony that is on file with the Committee today from Dr. James Scully on behalf of the American Psychiatric Association, that testimony indicates in response to this issue of well, aren’t the people out there just passing out drugs to these kids so they can qualify for this program.  He says that the medication treatment for disorders like ADHD actually reduces the likelihood of eligibility for SSI.  Is that correct? 

Mr. Stein.  That is exactly true.

Chairman Davis.  Mr. Stein, I am sorry to interrupt. 

Mr. Doggett.  Continue with another Member.

Chairman Davis.  Time has expired and part of the reason for needing to expedite is we are going to have a vote coming in the next 15 to 30 minutes.  I want to make sure that every panelist has the opportunity.  If you could give that response to the committee in writing we would be very grateful for that. 

Mr. Stein.  Yes.  I was in mid sentence, Mr. Chairman.  May I just complete that sentence? 

Thank you for that. 

Chairman Davis.  I tell you what we are going to do.  Since the last sentence was a minute and a half long I think we will let it come back in writing.  I share equal passion for helping young people and have volunteered and worked in this space for nearly 30 years.  So I think that we can have some common ground in this. 

With that I would like to recognize the gentleman from Minnesota, Mr. Paulsen. 

Mr. Paulsen.  Thank you, Mr. Chair.  I will be pretty quick.  I want to thank you for holding this hearing.  And I want to get back to this issue of the timely reviews.  Mr. Stein had noted I think back in January regarding children on SSI that existing law already requires disability reviews every 3 years where improvement is likely.  But the data really does suggests that those reviews have not actually been happening recently in years. 

For example, the Social Security Administration Inspector General recently reported that although required by statute, SSA failed to complete 79 percent of scheduled child reviews resulting in an estimated 1.4 billion in overpayments.  So there is obviously concern about this issue on a bipartisan basis.  In fact, in the Budget Control Act which we just adopted in August we provided more resources for these reviews, as well as other program integrity activities to the tune of $623 million for 2012. 

Mr. Bertoni, you also note in your statement and made some comments that SSA does not appear to be conducting childhood CDRs in a very timely manner.  In your opinion, how vital is it for SSA to conduct childhood CDRs?  And in what ways could SSA better target those efforts?

Mr. Bertoni.  Certainly.  The CDRs they are conducting, as I said earlier, are for age 18 redeterminations as well as the low‑birth‑weight babies, but there is a vast range of other mental impairments that they are not getting to.  We do know that many of them are increasing and represent a significant portion of the rolls:  Speech delay, 21 percent; ADHD, 26 percent; autism, 11 percent.  In excess of 50 percent of the rolls are within those three impairments. 

They are getting very few CDRs, and again, some of those cases potentially could have medically improved, the science says that that is a possibility.  A number of those are probably listed as medical improvement expected, so I think you are foregoing an opportunity, I think, not just to save taxpayer dollars but to put children who are medically impaired on a different track to a track toward productivity and integration, toward something other than lifelong Social Security benefits.

Mr. Paulsen.  So knowing there is that opportunity there, do you believe that SSA has a plan for how to use the moneys in the Budget Control Act that we just passed a couple of months ago to target these reviews more efficiently and effectively? 

Mr. Bertoni.  I do know they are concerned about certain trends in the caseload, certain impairments, and they are eyeing it very closely.  I do not believe there is a specific plan to get to the existing backlog or what they would do going forward.

Mr. Paulsen.  Mr. Chairman, I just think we are going to have to monitor this because we are all looking at, you know, stretched resources, and there is broad agreement here that these reviews, timely reviews, are critical, so I will yield back my time to move on.

Chairman Davis.  I thank the gentleman. 

I now recognize Mr. McDermott from Washington State for 5 minutes.

Mr. McDermott.  Thank you, Mr. Chairman.  It seems to me this hearing has got two issues in it, and we can’t deal with both of them.  One is the effect of poverty on poor kids and what we have done, and Dr. Burkhauser and Dr. Wittenburg both talked about that, we ought to have a hearing about that and what we ought to do about it, but the more important issue here, it seems to me, is what Dr. Roberts says. 

Dr. Roberts says that child psychiatrists are fraudulently putting children on SSI.  She says in her testimony, because diagnosing a child with psychiatric condition is based almost exclusively on the verbal report by a child’s parents, it is easy for the doctor to arrive at the wrong conclusion. 

Now, that would imply that you don’t examine the kid.  I am a child psychiatrist; you are a child psychiatrist.  You saw that child, and you made the diagnosis on the basis of reports but also what you saw in front of you.  For you to imply that any kid out of the 1.2 million kids that are on SSI in this country were put there by somebody who didn’t see the child is an absolute accusation of fraud. 

And I know you went on Oprah, and you have been on CNN, so I know you have got the ear of the media.  That is why I am taking you on, because you are in the media here.  And the fact is that I would like to hear, did you ever report a doctor for doing such a thing?  Because it is against the ethics of the American Psychiatric Association to make a diagnosis without seeing the patient.  You know that.  I can’t make it ‑‑ I can’t say what I think of Mr. Davis’ psychiatric condition because I haven’t examined him.  Everybody understands that. 

Chairman Davis.  If I could interrupt, I would only agree to that if I could have reciprocity with the gentleman from Washington State.

Mr. McDermott.  Well, I make my point.  You don’t ‑‑ the business about making a decision about Miss Schiavo by Dr. Frist.  Making a decision about somebody in Florida on a breathing machine when you haven’t seen the patient is malpractice, and it is unethical. 

So now you are accusing doctors of doing that.  Give me an example of someone you know by name that saw a patient or didn’t see a patient and signed a paper and said they are eligible for SSI.

Chairman Davis.  I just, in respect of HIPAA, I would ask that you not name any individuals that you are citing if you have those records.

Mr. McDermott.  Well, you can give me a false name like Sarah, all right?

Dr. Roberts.  Thank you, Mr. McDermott, for the opportunity.  I don’t know how you came to the conclusion that I said that because the diagnosis is made primarily on the report by the parent that the child is never seen.  Evaluations of children, as it is done in practice ‑‑ it is very nice that there is so much testimony here that getting a child on to SSI is so difficult and the requirements are so strict and stringent.  They are not.  In practice ‑‑ now, I don’t know how many people here actually treat children still today in poverty and see and help them apply for SSI every week, because I do.  Every week.  Filling out SSA forms.  And the children ‑‑

Mr. McDermott.  How long do you spend with these kids, 2 minutes or 3 or an hour? 

Dr. Roberts.  See, that is the difference.  I spend 2 hours or more, and my colleagues spend 20 or 5, and that is the problem.

Mr. McDermott.  Twenty minutes or 5? 

Dr. Roberts.  Five minutes, right.

Mr. McDermott.  How do you know that? 

Dr. Roberts.  How do I know that?  Because the doctors tell me that, and the patients who have seen these doctors report that to me.  The doctors ‑‑

Mr. McDermott.  Have you reported them for an ethics violation for seeing the patient for 5 minutes and then going ‑‑ 

Dr. Roberts.  It is a common practice, Mr. McDermott, a common practice. 

Mr. McDermott.  Common practice? 

Dr. Roberts.  And, yes, I report it to the supervisors at the county, and they tell, me forget about it.

Mr. McDermott.  Wow.

Dr. Roberts.  For example, in the case of Sarah, when I denied her, her mother came back a year later and said, my house burned down; we need the money. 

Mr. McDermott.  You have given me one example.  You ‑‑ and, I am sorry ‑‑ let me tell you ‑‑

Dr. Roberts.  Oh, I can give you hundreds of examples.  Hundreds. 

Mr. McDermott.  You are trying to draw a general policy.

Dr. Roberts.  No, I am not.

Mr. McDermott.  Yes, you are.

Dr. Roberts.  I am not.  I am trying to say there is a lot of fraud and abuse in the system, and it needs to be fixed.  I am not referring to Will; I am talking about kids like Sarah.

Mr. McDermott.  And what have you done to repair it?  Where have you used the organizations that one would use to repair that fraud and abuse?  What have you done? 

Dr. Roberts.  I report the ‑‑ I write books.  I write articles.  And I report it to supervisors.  What else can I do?  I testified before a subcommittee; that is the best I can do.

Mr. McDermott.  Are you a member of the AMA?  Are you a member of the American Psychiatric Association? 

Dr. Roberts.  No, I let my membership lapse because they are making statements like they did that completely ignores what happens in the trenches for those of us who are actually treating these children.  They make these blanket statements as if everyone is getting a very strict review.  They are not.  After Sarah was denied ‑‑

Mr. McDermott.  You are making the blanket statements ‑‑

Dr. Roberts.  ‑‑ her mother came back in to me.

Mr. McDermott.  Excuse me ‑‑

Dr. Roberts.  No, I am not making a blanket statement. 

Mr. McDermott.  It is my time.

Dr. Roberts.  Oh, sorry.

Mr. McDermott.  You are making statements ‑‑ 

Chairman Davis.  Actually, it is now my time.  Thank you. 

Mr. Berg.  Our time.

Chairman Davis.  I appreciate the spirited dialogue on this issue with my friend from Washington, with whom I have worked on many legislative initiatives, and yours, Dr. Roberts, as well.  We do have a copy of your book, among others. 

Now I would like to defer to the gentleman from North Dakota, Mr. Berg. 

Mr. Berg.  Thank you, Mr. Chairman. 

And I truly do want to thank all the panelists that are here. 

Thank the chairman for pulling this together. 

You know, back in September, we had really a hearing on the SSI program for adults.  And I am just happy here that we are looking at the same issue with children, and one of the things that strikes me is before we get in the weeds, we have to kind of look at the outcomes.  And really, what in the big picture long term are we doing, what are we creating, how are we impacting these people’s lives?  And so that is kind of the thrust of where I would like to go with the questioning, and you know, we talked about the incentives in September for adults on vocational rehabilitation and how to help them reenter the workforce, and I think that should be a goal is how do we have people feel a part of our society, have them be engaged in work that they enjoy, work that they feel a value to?  And so a lot of what I have heard here today seems we have barriers and disincentives to that direction. 

And so, Dr. Wittenburg, you know, from your research, you know, there are very low rates of enrollment in vocational rehabilitation services on these youth that are transitioning, and you mentioned several demonstration projects.  I guess one of the brief questions is the Youth Transition Demonstration.  What is the theory behind that? 

Mr. Wittenburg.  That is a very good question, Mr. Berg, and the Youth Transition Demonstration is one of the demonstrations that I am very optimistic about because I feel like it is asking the right questions, which is, how can we promote the long‑term outcomes of these youth?  It looks at the exact poor outcomes that I put in that slide, and it says, what do we know about best practices in terms of delivering employment supports to youth with disabilities?  What do we know about incentives that may affect youths’ choices regarding the labor market?  And it combines a series of intervention approaches, and I think one of the key points of it, Mr. Berg, is that it is designed to be a customized approach to meet the individual needs of the youth.  It is not a standard system. 

So the Youth Transition Demonstration is operating in several sites across the country, and sites have developed their own models around these general parameters, and it is a flexible sort of model.  It is too early to tell what the impacts of YTD are, but demonstrations like YTD are really important because they are changing the way that we are approaching youth with disabilities, and the way we should be approaching, quite frankly, all the youth because the outcomes of these populations are not acceptable currently.

Mr. Berg.  Well, then the next question is a follow up, really relates to the high school graduation.

Mr. Wittenburg.  Yeah.

Mr. Berg.  And, I mean, I am just stunned by, again, the statistics where, you know, two out of five don’t have a diploma; four out of five are not working; one out of five is arrested. 

Mr. Wittenburg.  Yeah.

Mr. Berg.  Again, it seems like there are some things that are failing here.  So, you know, back to you, and even within the program, where we have people receiving survivor benefits, children, they must remain in school, so I guess my question to you is, you know, does this current policy undermine what we are trying to do and should this be a requirement in the system for the education? 

Mr. Wittenburg.  I think that is an excellent question, Mr. Berg, and I do believe that we should be putting requirements in the system that help youth achieve all the outcomes that they need to achieve. 

Now, all these requirements are not going to be appropriate for all youth.  For example, it may not be appropriate to apply these requirements to say, youth who are homebound, but I think that we can move beyond a one‑benefit‑fits‑all‑needs model, and if we can customize supports to better meet the needs of these youth ‑‑ and I want to be clear, I am not advocating cutting the child SSI program in any way.  It provides a vital source of low‑income support.  I am suggesting that we rethink the way the benefits are provided so youth, getting back to your question, so that when we come to a youth, they don’t say to themselves, look, I am afraid to work because it might jeopardize my benefit status. 

Mr. Berg.  Right, right. 

Mr. Wittenburg.  So ‑‑

Mr. Berg.  Well, and that is kind of in the bigger picture here; I think the one‑size‑fits‑all strategy from the top down is a problem.  I think the States are the innovators, so if States can come up with solutions.  And, you know, you talked really about again I think the Federal program restricts innovation at the State level in trying to be more effective and better outcomes for children.  And so I guess kind of my question is this integration you talked about with the States, if they have more flexibility, what ‑‑ I mean, I understand the benefits.  What are the issues we should be aware of if we are going to transition more of those decisions down to the State level? 

Mr. Wittenburg.  Well, the first issue you should be aware of is we don’t know what works, and so part of the history of the SSI program is that it became a Federal program because States were having a problem serving people with disabilities. 

Chairman Davis.  Dr. Wittenburg, if I could suggest, if you could complete that answer for the record, that would be helpful.  I hate to be the traffic cop this morning, but knowing that we have this impending vote, I want to make sure that all our members have the opportunity to question.

Mr. Wittenburg.  I am sorry, Mr. Berg. 

Mr. Berg.  I yield back.

Mr. Wittenburg.  Okay. 

Chairman Davis.  The chair now recognizes Mr. Lewis from Georgia. 

Mr. Lewis.  Thank you, Mr. Chairman, thank you for holding this hearing.

Thank members of the panel for being here. 

Mr. Chairman, I would like for Mrs. Bentley to come before the witness table. 

Mrs. Bentley.  Thank you.

Mr. Lewis.  Mrs. Bentley, thank you and Will for being here.  Can you tell the subcommittee something about your son Will’s disability and about how SSI benefits have helped you better care for him?  Or do you think SSI benefits have made a positive difference for Will?  What improvement has he made since receiving SSI?  What would happen to Will and your family if you did not have assistance from the SSI program? 

Mrs. Bentley.  Thank you. 

Will has a seizure disorder that when he has seizures, and most of the time, they are at night ‑‑ he does have some during the daytime, but he has them when he sleeps, and he loses skills that he has learned during the day.  So if it is in his short‑term memory, Will may not get it back for some time.  And he was unable to feed himself, unable to communicate.  He communicated with his hands.  We learned how to tell stories, and then he learned how to talk after we started controlling the seizures somewhat, but they are in the part of his brain that controls speech, so that was huge for him. 

For Will to be able to dress himself and be able to read that he can today, he is learning so much, and feeding himself and being able to talk to us and to tell us things.  His speech still has delays, but Will can say so much, and he can communicate in so many ways. 

Without ‑‑ with the SSI program and being able to have those benefits, it brought so many things to Will, resources that I couldn’t even imagine doing without.  I don’t think that Will would be where he is at today if I had not had that opportunity.  These programs just really are priceless to families, to have the support, the doctors, to be able to buy his medicines and not worry, to be able to take him to therapy and get a good home program that I could use so that when Will is in the community or he is at home, we are able to find ways to help him be a part of that.  I am not sure if I have answered all your questions.

Mr. Lewis.  Well, thank you, you have done very well.

Mrs. Bentley, thank you so much. 

How would you respond to some of the comments from the witnesses here today, particularly those who claim that the childhood SSI program is not working, that it is devastatingly corrupt, it is a menace to children, and a tragic misuse of public funds?  How does that make you feel when you have to read these type of allegations, when you are trying to do the best for your son Will? 

Mrs. Bentley.  It makes me want to ask you guys to come home with me, spend some time with me, some time with Will, and to see how great his life is.  The opportunities we are giving him are priceless. 

I have huge hopes and dreams for my son, and I am working with him to help do that. 

If SSI was not available to our family, I could not do that; I couldn’t give him an opportunity. 

Some day my son is going to be a productive part of the community.  He is not going to be someone who is there just getting a check, and right now that gives us an opportunity for me to be there and really be enriched in his life, not just on the sidelines.  I am here with him making sure that he has a future, and I put my career back where it needs to be right now.  I can always pick that up later.  If I don’t make the changes in Will’s life today, if I don’t invest my time in him, I am never going to change the outcome for him.  He is going to be the same way his entire life. 

But now I know that Will has a chance because I am not going to quit.  I am going to be there for him and every other child that is tucked in my heart today as I come here before you.

Mr. Lewis.  Mrs. Bentley, I appreciate you saying what you said.  It is my philosophy, it is very simple, that you cannot give up or give in or give out, and thank you for your standing up for Will and speaking up for this program. 

Mr. Chairman, you know, in spite of all of the difficulties that we have as a country, I don’t think this is the time to cut this program and try to balance the budget on the backs of the most disabled children, young people in our society.  We can do better. 

Thank you very much, Mrs. Bentley.

Mrs. Bentley.  Thank you.

Chairman Davis.  I thank the gentleman.

And, you know, as we move forward, I think one of the highlights that speaks to me and points all the more to why Congressman Neal and I requested the GAO report in the first place is the Sarahs of the world are the ones who take away the opportunities for the Wills of the world, and nobody, I think, has implied or remotely suggested cutting the budget on the backs of the needy.  I think what we are trying to do is understand broken processes so that we can repair them and improve the quality of our systems overall, and that unemotional focus in a very emotional situation, I believe, is critical and nonpartisan in nature.  Just as we were able to have such a successful reform in the child welfare reauthorization, I would hope as we move forward with these programs, we can accomplish the same thing. 

With that, I recognize Mr. Reed for 5 minutes. 

Mr. Reed.  Thank you so much, Mr. Chairman, and I strongly associate myself with your words because I think, Mrs. Bentley, I am a new Member of Congress, and everybody up here recognizes.  My son’s name is Will.  I have two nephews that have autism, one low functioning, one high functioning, and the system needs to be secured.  And I hope you take some comfort in knowing that we all up here recognize the system needs to be here for you and for Will.  But what we need to focus on is making sure that the abuses and the program is sustainable and the abuses are weeded out so that it will be here in the future for Will and the future Wills. 

And so I come out here from a new perspective of trying to look forward, and when I hear my colleagues who have been here for quite sometime talk about how the Federal Government has done it so well and we shouldn’t give it to the States or we shouldn’t experiment with things at the State level, I just go to the scoreboard.  I mean, I look at Social Security, bankrupt 2036; Medicare, bankrupt 2019; Medicaid, every county in my district, I represent eight counties in New York State, 100 percent of the property tax levy goes to Medicaid.  It is driving my seniors out of the homes that their parents built because they can’t pay the property tax bill.  So I came here to make a difference.  I came here not to talk about how President Bush cut the program but President Obama is restoring the program.  That partisan stuff, I am tired of it. 

So we are here to ask the questions of, how do we strengthen this program, how do we ‑‑ and I will start backwards. 

You know, Mr. Stein, I would hope your goal is to have recommendations to us today to remove disabilities so that children can go on and become productive so that they don’t have the need for SSI going forward.  Give me one recommendation from you, sir, that would enhance that goal of removing the disability, and then I want to go to Mr. Bertoni about how we reform and go after the fraud, and then I want to go to Dr. Roberts to go to the qualifying events to make sure they are objective and not subjective. 

Mr. Stein.  Thank you, Mr. Reed. 

We have a number at the end of our written testimony.  One is improving vocational rehabilitation services for those youth who are under 18 and those who transition after 18 on to SSI.  The voc‑rehab services are very minimal these days to nonexistent.  They could be much more proactive.  Vocational Rehabilitation is a State agency, so this is State action. 

Mr. Reed.  So you recommend State action? 

Mr. Stein.  We recommend that there be improved and pumped‑up and targeted services by State voc‑rehab agencies that work with Social Security and with other Federal and State agencies to really assist kids who are older kids and teenagers and those transitioning after 18.  Indeed, you know, you don’t have an automatic ride onto SSI after 18.  One‑third of SSI kids are terminated at age 18.

Mr. Reed.  Thank you. 

Mr. Stein.  That is a population that also needs voc‑rehab services as well.

Mr. Reed.  That is a very reasonable recommendation.  I appreciate you giving us that thoughtful comment. 

Mr. Bertoni, from your perspective, what is one of the top areas we could target to go after the fraud and abuse in the system? 

Mr. Bertoni.  Aside from the income and asset, there is a lot that can be done on the income and assets with the parents, but that is not the subject of this hearing. 

From a medical standpoint, I think really targeting those cases that are most likely to improve, doing the appropriate reviews and identifying those children who can move, as you said, to that different track, that more productive track, is key.  If you don’t, there is the likelihood if it is not fraud, it could be abuse, whereby folks will linger on the rolls for many years well past their eligibility period, and that is a cost to the taxpayer.  So if we don’t want to touch the front end, which folks can argue whether it is subjective or not subjective, we really need to look at existing folks, the existing folks on the rolls and making sure that they are truly eligible for benefits, and the way you do that is by doing the reviews that you are required to do.

Mr. Reed.  The reviews.  Now on the front end, Dr. Roberts, any recommendations as to how to make this more of an objective standard? 

Dr. Roberts.  It would be very hard because, like I said, when children are being assessed, it is really their parents’ report.  I am not speaking of children like Will.  I am not talking about the children I have helped on to the SSI rolls who definitely needed the help, their family needed the help, but the system has to be reformed in terms of the way the money is used by those who receive it.  Regular reviews are a good start, but if the patient is still being seen very quickly ‑‑

Mr. Reed.  I see my time has expired.  Maybe we can talk offline or maybe written recommendations as to creating a more objective standard from the gatekeeper perspective. 

Thank you, Mr. Chairman.  With that, I yield back.

Chairman Davis.  I thank the gentleman. 

And Mr. Neal, my partner in the original request, will have the last word. 

Mr. Neal.  Just a couple of thoughts.  First how difficult it is to have these conversations, how really hard it is because they become so charged when we really are trying to discern evidence that might support Mrs. Bentley and her family, and that is what the goal ought to be here.  That is the priority. 

Now, Social Security is not going bankrupt in 2036.  I have not heard one actuarial suggestion that that is the case. 

Dr. Wittenburg I believe is correct, the reason that the Federal Government took over the initiative was because the States were ineffectual in their approach, and the suggestion that I offered earlier, and I hope that the subcommittee and the full committee might entertain, is the idea of having the Institute of Medicine take a look at the program.  I do think that Mr. Bertoni has raised a reasonable point when he says there is a difference between fraud and abuse.  There is a chasm there, and abuse clearly could be perhaps an overworked physician suggesting, well, medication becomes the first option.  And there are educators in Springfield and Holyoke, Massachusetts, that I have enormous regard for ‑‑ I have known them my whole life, professionally and personally ‑‑ and they have suggested to me that this is a worthwhile examination based upon the challenges they face every day in the classroom.  And there is evidence that the rolls have grown, and if it is for children like Will, they should grow.  If it is an abusive State, then we have an obligation just to examine it, and I don’t think we ought to be afraid of the outcomes that the Institute of Medicine might produce, and I would hope we could all rally around the suggestion and the responsibility we have to ensure that people that need the benefit get it and the people that don’t need the benefit are removed from it.  That is a simple equation. 

So thank you, Mr. Chairman, and I appreciate very much you allowing me to participate today.

Mr. Stein.  Mr. Neal, may I just add something to your response, which is I think we fully agree with that, and I think the heart of what you are saying is the need not to rush in haste.  I think that we need to wait for the GAO study, which is in its “preliminary observation” stage today.  We need an Institute of Medicine study, and I think the danger, as Dr. Wittenburg says in his statement, is to rush, like Congress did 15 years ago.  He states in two places in his testimony today that there were media reports at that time in the mid‑1990s, which were later proved to be totally untrue about abuse, about parents coaching, and all of this, and that fueled changes in the law in this Congress in 1996, changes that he says, at pages 3 and 4 of his testimony, were unwise and made things worse.  And he is urging, and I think we all in this room should be in agreement, that this is not a program that we should rush into changing.  We should take time ‑‑ we should look at the studies.  We should take our time because the lives and health of too many children are at stake for hasty action. 

Mr. Wittenburg.  And if I could just say for the record, I would say that welfare reforms made in 1996 were not evidence‑based changes.  They were made in haste.  So I don’t want to put a judgment on whether they were good or bad changes, but certainly, when you look at the outcomes that we are seeing today, I think it does cause us to look at what is going on in the SSI program.

Chairman Davis.  Does the gentleman yield back? 

Mr. Neal.  I did already.

Chairman Davis.  I thank the gentleman.

And I thank all of our witnesses who came to join us today for this discussion.  If members have additional questions, they will be submitting them directly to you all in writing.  What I would ask is that the witnesses submit a copy of their response to the committee for the record so that it can be shared with all members and staff.  We appreciate your time that you have invested in preparation, especially the Bentleys for coming from my home area in Covington, Kentucky.

And with that, this hearing stands adjourned.

[Whereupon, at 10:31 a.m., the subcommittee was adjourned.]

QUESTIONS FOR THE RECORD
Chairman Davis

SUBMISSIONS FOR THE RECORD
American Psychiatric Association
American Academy of Child and Adolescent Psychiatry
Center for Fiscal Equity
Center for the Study of Empathic Therapy, Education, & Living
Children and Adults with Attention Deficit Hyperactivity Disorder
Client Rights Interventions Advisory Committee for FACT Specialized Services, LLC
First Focus
Greater Boston Legal Services
National Health Care for the Homeless Council
Pacer Center
The Arc of the United States
The National Alliance on Mental Illness
The National Alliance to Advance Adolescent Health