U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001

72–280 2012

SUPPLEMENTAL SECURITY 

INCOME BENEFITS 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 No. 112–HR9 

Printed for the use of the Committee on Ways and Means 

( 


dkrause on DSKHT7XVN1PROD with HEARING
ii 

SUBCOMMITTEE ON HUMAN RESOURCES 

GEOFF DAVIS, Georgia, Chairman 

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, Ranking 

JIM MCDERMOTT, Washington 

JOHN LEWIS, Georgia 

JOSEPH CROWLEY, New York 


dkrause on DSKHT7XVN1PROD with HEARING
iii 

C O N T E N T S 

Page 

Advisory of October 27, 2011, announcing the hearing ........................................ 2 

WITNESSES 

Daniel Bertoni, Director, Education, Workforce, and Income Security, U.S. 

Government Accountability Office ...................................................................... 8 

Richard V. Burkhauser, Ph.D., Professor, Department of Policy Analysis and 

Management, Cornell University ........................................................................ 41 

David Wittenburg, Ph.D., Senior Researcher, Mathematica Policy Research .... 52 

Jonathan M. Stein, General Counsel, Community Legal Services of Philadelphia, and Member, SSI Coalition for Children and Families ........................... 74 

Elizabeth J. Roberts, M.D., Child and Adolescent Psychiatrist ........................... 87 

SUBMISSIONS FOR THE RECORD 

American Psychiatric Association, statement ....................................................... 132 

American Academy of Child and Adolescent Psychiatry, statement ................... 135 

Center for Fiscal Equity, statement ....................................................................... 139 

Center for the Study of Empathic Therapy, Education, and Living, statement 143 

Children and Adults with Attention Deficit Hyperactivity Disorder, statement ...................................................................................................................... 146 

Client Rights Interventions Advisory Committee for FACT Specialized Services, LLC, statement ............................................................................................ 152 

First Focus, statement ............................................................................................ 155 

Gena Pontious, statement ....................................................................................... 158 

Greater Boston Legal Services, statement ............................................................ 159 

National Health Care for the Homeless Council, statement ................................ 164 

Pacer Center, statement .......................................................................................... 170 

The Arc of the United States, statement ............................................................... 171 

The National Alliance on Mental Illness, statement ............................................ 175 

The National Alliance to Advance Adolescent Health, statement ....................... 180 


dkrause on DSKHT7XVN1PROD with HEARING

dkrause on DSKHT7XVN1PROD with HEARING
(1) 

SUPPLEMENTAL SECURITY 

INCOME BENEFITS FOR CHILDREN 

THURSDAY, OCTOBER 27, 2011 

U.S. HOUSE OF REPRESENTATIVES, 

COMMITTEE ON WAYS AND MEANS, 

SUBCOMMITTEE ON HUMAN RESOURCES, 

Washington, DC. 

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 announcing the hearing follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
2 

ADVISORY 

FROM THE COMMITTEE ON WAYS AND MEANS 

SUBCOMMITTEE ON HUMAN RESOURCES 

FOR IMMEDIATE RELEASE CONTACT: (202) 225–1721 

Thursday, October 27, 2011 

HR–9 

Chairman Davis Announces a Hearing on 

Supplemental Security Income 

Benefits for Children 

Congressman Geoff Davis (R–KY), Chairman of the Subcommittee on Human Resources of the Committee on Ways and Means, announced today that the Subcommittee will hold a hearing on Supplemental Security Income (SSI) benefits for 

children. The hearing will take place on Thursday, October 27, 2011, in B– 

318 Rayburn House Office Building, beginning at 9:00 a.m. 

In view of the limited time available to hear witnesses, oral testimony at this 

hearing will be from invited witnesses only. Witnesses will include the U.S. Government Accountability Office (GAO) and other experts on SSI benefits for children. 

However, any individual or organization not scheduled for an oral appearance may 

submit a written statement for consideration by the Committee and for inclusion in 

the printed record of the hearing. 

BACKGROUND: 

The Supplemental Security Income program supports adults who are aged or un- able to work due to disability with monthly cash benefits of up to $674 per person 

in 2011. The program also provides monthly payments to disabled children. Currently, there are 1.2 million children receiving SSI benefits at an annual cost of 

about $10 billion, not including Medicaid expenses. 

In November 2010, The Boston Globe ran a three-part series on increases in children’s payments under the Supplemental Security Income program, identifying two 

areas of concern: a lack of program integrity efforts by the Social Security Administration (SSA) and allegations that psychotropic drugs may be improperly prescribed 

to children with certain mental and behavioral impairments (especially Attention 

Deficit Hyperactivity Disorder or ADHD) in order to improve their chances of collecting SSI disability payments. 

The series prompted Chairman Davis and a bipartisan, bicameral group of Members of Congress to request that GAO review: trends in the rate of children receiving 

SSI benefits due to ADHD, depression, and other mental impairments; the role of 

medical evidence, such as the presence of medication, in SSA disability determinations; and the impact of SSA’s not completing continuing disability reviews on current recipients of SSI benefits. While final results and recommendations from GAO 

are not expected until 2012, the hearing will include testimony from GAO on their 

preliminary findings as well as from other experts on SSI benefits for children, 

among related issues. 

In announcing the hearing, Chairman Geoff Davis (R–KY) stated, ‘‘The SSI program provides financial support for families with a disabled child. But as 

currently constructed, the program makes no effort to ensure that benefits 

are used to help children overcome their disabilities and lead productive 

lives. As a result, too many children on SSI drop out of school, experience 

poor employment outcomes, and continue receiving year after year of disability payments as adults. This hearing will review how the SSI program 

is currently coming up short and possible remedies.’’ 


dkrause on DSKHT7XVN1PROD with HEARING
3 

FOCUS OF THE HEARING: 

The hearing will focus on oversight of SSI benefits for children, including trends, 

program growth, and recipient outcomes. 

DETAILS FOR SUBMISSION OF WRITTEN COMMENTS: 

Please Note: Any person(s) and/or organization(s) wishing to submit for the hearing record must follow the appropriate link on the hearing page of the Committee 

website and complete the informational forms. From the Committee homepage, 

http://waysandmeans.house.gov, select ‘‘Hearings.’’ Select the hearing for which you 

would like to submit, and click on the link entitled, ‘‘Click here to provide a submission for the record.’’ Once you have followed the online instructions, submit all requested information. Attach your submission as a Word document, in compliance 

with the formatting requirements listed below, by the close of business on 

Thursday, November 10, 2011. Finally, please note that due to the change in 

House mail policy, the U.S. Capitol Police will refuse sealed-package deliveries to 

all House Office Buildings. For questions, or if you encounter technical problems, 

please call (202) 225–1721 or (202) 225–3625. 

FORMATTING REQUIREMENTS: 

The Committee relies on electronic submissions for printing the official hearing record. As always, submissions will be included in the record according to the discretion of the Committee. 

The Committee will not alter the content of your submission, but we reserve the right to format 

it according to our guidelines. Any submission provided to the Committee by a witness, any supplementary materials submitted for the printed record, and any written comments in response 

to a request for written comments must conform to the guidelines listed below. Any submission 

or supplementary item not in compliance with these guidelines will not be printed, but will be 

maintained in the Committee files for review and use by the Committee. 

1. All submissions and supplementary materials must be provided in Word format and MUST 

NOT exceed a total of 10 pages, including attachments. Witnesses and submitters are advised 

that the Committee relies on electronic submissions for printing the official hearing record. 

2. Copies of whole documents submitted as exhibit material will not be accepted for printing. 

Instead, exhibit material should be referenced and quoted or paraphrased. All exhibit material 

not meeting these specifications will be maintained in the Committee files for review and use 

by the Committee. 

3. All submissions must include a list of all clients, persons and/or organizations on whose 

behalf the witness appears. A supplemental sheet must accompany each submission listing the 

name, company, address, telephone, and fax numbers of each witness. 

The Committee seeks to make its facilities accessible to persons with disabilities. 

If you are in need of special accommodations, please call 202–225–1721 or 202–226– 

3411 TDD/TTY in advance of the event (four business days notice is requested). 

Questions with regard to special accommodation needs in general (including availability of Committee materials in alternative formats) may be directed to the Committee as noted above. 

Note: All Committee advisories and news releases are available on the World 

Wide Web at http://www.waysandmeans.house.gov

f 

/. 

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. 


dkrause on DSKHT7XVN1PROD with HEARING
4 

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 an 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 


dkrause on DSKHT7XVN1PROD with HEARING
5 

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 a 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 seVerDate Nov 24 2008 08:33 Jan 24, 2012 Jkt 072280 PO 00000 Frm 00009 Fmt 6633 Sfmt 6602 I:\WAYS\WAYSPS\72280\72280.XXX 72280

dkrause on DSKHT7XVN1PROD with HEARING
6 

vere 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. 


dkrause on DSKHT7XVN1PROD with HEARING
7 

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 to 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 has 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 professionals, 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 has 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 overprescribing 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 review 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. 


dkrause on DSKHT7XVN1PROD with HEARING
8 

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 their 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. 


dkrause on DSKHT7XVN1PROD with HEARING
9 

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 indepth 

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 perVerDate Nov 24 2008 08:33 Jan 24, 2012 Jkt 072280 PO 00000 Frm 00013 Fmt 6633 Sfmt 6602 I:\WAYS\WAYSPS\72280\72280.XXX 72280

dkrause on DSKHT7XVN1PROD with HEARING
10 

cent, 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 prepared statement of Mr. Bertoni follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
11 


dkrause on DSKHT7XVN1PROD with HEARING72280A.001
12 


dkrause on DSKHT7XVN1PROD with HEARING72280A.002
13 


dkrause on DSKHT7XVN1PROD with HEARING72280A.003
14 


dkrause on DSKHT7XVN1PROD with HEARING72280A.004
15 


dkrause on DSKHT7XVN1PROD with HEARING72280A.005
16 


dkrause on DSKHT7XVN1PROD with HEARING72280A.006
17 


dkrause on DSKHT7XVN1PROD with HEARING72280A.007
18 


dkrause on DSKHT7XVN1PROD with HEARING72280A.008
19 


dkrause on DSKHT7XVN1PROD with HEARING72280A.009
20 


dkrause on DSKHT7XVN1PROD with HEARING72280A.010
21 


dkrause on DSKHT7XVN1PROD with HEARING72280A.011
22 


dkrause on DSKHT7XVN1PROD with HEARING72280A.012
23 


dkrause on DSKHT7XVN1PROD with HEARING72280A.013
24 


dkrause on DSKHT7XVN1PROD with HEARING72280A.014
25 


dkrause on DSKHT7XVN1PROD with HEARING72280A.015
26 


dkrause on DSKHT7XVN1PROD with HEARING72280A.016
27 


dkrause on DSKHT7XVN1PROD with HEARING72280A.017
28 


dkrause on DSKHT7XVN1PROD with HEARING72280A.018
29 


dkrause on DSKHT7XVN1PROD with HEARING72280A.019
30 


dkrause on DSKHT7XVN1PROD with HEARING72280A.020
31 


dkrause on DSKHT7XVN1PROD with HEARING72280A.021
32 


dkrause on DSKHT7XVN1PROD with HEARING72280A.022
33 


dkrause on DSKHT7XVN1PROD with HEARING72280A.023
34 


dkrause on DSKHT7XVN1PROD with HEARING72280A.024
35 


dkrause on DSKHT7XVN1PROD with HEARING72280A.025
36 


dkrause on DSKHT7XVN1PROD with HEARING72280A.026
37 


dkrause on DSKHT7XVN1PROD with HEARING72280A.027
38 


dkrause on DSKHT7XVN1PROD with HEARING72280A.028
39 


dkrause on DSKHT7XVN1PROD with HEARING72280A.029
40 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.030
41 

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 


dkrause on DSKHT7XVN1PROD with HEARING
42 

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 prepared statement of Mr. Burkhauser follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
43 


dkrause on DSKHT7XVN1PROD with HEARING72280A.031
44 


dkrause on DSKHT7XVN1PROD with HEARING72280A.032
45 


dkrause on DSKHT7XVN1PROD with HEARING72280A.033
46 


dkrause on DSKHT7XVN1PROD with HEARING72280A.034
47 


dkrause on DSKHT7XVN1PROD with HEARING72280A.035
48 


dkrause on DSKHT7XVN1PROD with HEARING72280A.036
49 


dkrause on DSKHT7XVN1PROD with HEARING72280A.037
50 


dkrause on DSKHT7XVN1PROD with HEARING72280A.038
51 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.039
52 

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 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 toward 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 effects on the outcomes of young 

adults. And this slide shows between the ages 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 


dkrause on DSKHT7XVN1PROD with HEARING
53 

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 prepared statement of Mr. Wittenburg follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
54 


dkrause on DSKHT7XVN1PROD with HEARING72280A.040
55 


dkrause on DSKHT7XVN1PROD with HEARING72280A.041
56 


dkrause on DSKHT7XVN1PROD with HEARING72280A.042
57 


dkrause on DSKHT7XVN1PROD with HEARING72280A.043
58 


dkrause on DSKHT7XVN1PROD with HEARING72280A.044
59 


dkrause on DSKHT7XVN1PROD with HEARING72280A.045
60 


dkrause on DSKHT7XVN1PROD with HEARING72280A.046
61 


dkrause on DSKHT7XVN1PROD with HEARING72280A.047
62 


dkrause on DSKHT7XVN1PROD with HEARING72280A.048
63 


dkrause on DSKHT7XVN1PROD with HEARING72280A.049
64 


dkrause on DSKHT7XVN1PROD with HEARING72280A.050
65 


dkrause on DSKHT7XVN1PROD with HEARING72280A.051
66 


dkrause on DSKHT7XVN1PROD with HEARING72280A.052
67 


dkrause on DSKHT7XVN1PROD with HEARING72280A.053
68 


dkrause on DSKHT7XVN1PROD with HEARING72280A.054
69 


dkrause on DSKHT7XVN1PROD with HEARING72280A.055
70 


dkrause on DSKHT7XVN1PROD with HEARING72280A.056
71 


dkrause on DSKHT7XVN1PROD with HEARING72280A.057
72 


dkrause on DSKHT7XVN1PROD with HEARING72280A.058
73 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.059
74 

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. BurkVerDate Nov 24 2008 08:33 Jan 24, 2012 Jkt 072280 PO 00000 Frm 00078 Fmt 6633 Sfmt 6602 I:\WAYS\WAYSPS\72280\72280.XXX 72280

dkrause on DSKHT7XVN1PROD with HEARING
75 

hauser’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 backward. 

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 one 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 prepared statement of Mr. Stein follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
76 


dkrause on DSKHT7XVN1PROD with HEARING72280A.060
77 


dkrause on DSKHT7XVN1PROD with HEARING72280A.061
78 


dkrause on DSKHT7XVN1PROD with HEARING72280A.062
79 


dkrause on DSKHT7XVN1PROD with HEARING72280A.063
80 


dkrause on DSKHT7XVN1PROD with HEARING72280A.064
81 


dkrause on DSKHT7XVN1PROD with HEARING72280A.065
82 


dkrause on DSKHT7XVN1PROD with HEARING72280A.066
83 


dkrause on DSKHT7XVN1PROD with HEARING72280A.067
84 


dkrause on DSKHT7XVN1PROD with HEARING72280A.068
85 


dkrause on DSKHT7XVN1PROD with HEARING72280A.069
86 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.070
87 

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 again 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 overmedicating 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 to 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. 


dkrause on DSKHT7XVN1PROD with HEARING
88 

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 programs 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 prepared statement of Dr. Roberts follows:] 


dkrause on DSKHT7XVN1PROD with HEARING
89 


dkrause on DSKHT7XVN1PROD with HEARING72280A.071
90 


dkrause on DSKHT7XVN1PROD with HEARING72280A.072
91 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.073
92 

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 second, 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 


dkrause on DSKHT7XVN1PROD with HEARING
93 

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 

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. 


dkrause on DSKHT7XVN1PROD with HEARING
94 

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:] 


dkrause on DSKHT7XVN1PROD with HEARING
95 


dkrause on DSKHT7XVN1PROD with HEARING72280A.074
96 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.075
97 

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 decisionmaking in child disability cases is something like 97 percent. 


dkrause on DSKHT7XVN1PROD with HEARING
98 

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 


dkrause on DSKHT7XVN1PROD with HEARING
99 

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 lowbirth-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 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. 


dkrause on DSKHT7XVN1PROD with HEARING
100 

And I know you went on Oprah, and you have been on CNN, so 

I know you have 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. 


dkrause on DSKHT7XVN1PROD with HEARING
101 

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 [continuing]. 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 work force, and I think that should 


dkrause on DSKHT7XVN1PROD with HEARING
102 

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 supVerDate Nov 24 2008 08:33 Jan 24, 2012 Jkt 072280 PO 00000 Frm 00106 Fmt 6633 Sfmt 6602 I:\WAYS\WAYSPS\72280\72280.XXX 72280

dkrause on DSKHT7XVN1PROD with HEARING
103 

port. 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. 


dkrause on DSKHT7XVN1PROD with HEARING
104 

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. 


dkrause on DSKHT7XVN1PROD with HEARING
105 

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 backward. 

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 vocrehab 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. 


dkrause on DSKHT7XVN1PROD with HEARING
106 

Mr. REED. So you recommend State action? 

Mr. STEIN. We recommend that there be improved and pumpedup 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. 


dkrause on DSKHT7XVN1PROD with HEARING
107 

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 evidencebased 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. 


dkrause on DSKHT7XVN1PROD with HEARING
108 

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 follow:] 


dkrause on DSKHT7XVN1PROD with HEARING
109 


dkrause on DSKHT7XVN1PROD with HEARING72280A.076
110 


dkrause on DSKHT7XVN1PROD with HEARING72280A.077
111 


dkrause on DSKHT7XVN1PROD with HEARING72280A.078
112 


dkrause on DSKHT7XVN1PROD with HEARING72280A.079
113 


dkrause on DSKHT7XVN1PROD with HEARING72280A.080
114 


dkrause on DSKHT7XVN1PROD with HEARING72280A.081
115 


dkrause on DSKHT7XVN1PROD with HEARING72280A.082
116 


dkrause on DSKHT7XVN1PROD with HEARING72280A.083
117 


dkrause on DSKHT7XVN1PROD with HEARING72280A.084
118 


dkrause on DSKHT7XVN1PROD with HEARING72280A.085
119 


dkrause on DSKHT7XVN1PROD with HEARING72280A.086
120 


dkrause on DSKHT7XVN1PROD with HEARING72280A.087
121 


dkrause on DSKHT7XVN1PROD with HEARING72280A.088
122 


dkrause on DSKHT7XVN1PROD with HEARING72280A.089
123 


dkrause on DSKHT7XVN1PROD with HEARING72280A.090
124 


dkrause on DSKHT7XVN1PROD with HEARING72280A.091
125 


dkrause on DSKHT7XVN1PROD with HEARING72280A.092
126 


dkrause on DSKHT7XVN1PROD with HEARING72280A.093
127 


dkrause on DSKHT7XVN1PROD with HEARING72280A.094
128 


dkrause on DSKHT7XVN1PROD with HEARING72280A.095
129 


dkrause on DSKHT7XVN1PROD with HEARING72280A.096
130 


dkrause on DSKHT7XVN1PROD with HEARING72280A.097
131 

f 

[Submissions for the Record follow:] 


dkrause on DSKHT7XVN1PROD with HEARING72280A.098
132 


dkrause on DSKHT7XVN1PROD with HEARING72280A.099
133 


dkrause on DSKHT7XVN1PROD with HEARING72280A.100
134 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.101
135 


dkrause on DSKHT7XVN1PROD with HEARING72280A.102
136 


dkrause on DSKHT7XVN1PROD with HEARING72280A.103
137 


dkrause on DSKHT7XVN1PROD with HEARING72280A.104
138 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.105
139 


dkrause on DSKHT7XVN1PROD with HEARING72280A.106
140 


dkrause on DSKHT7XVN1PROD with HEARING72280A.107
141 


dkrause on DSKHT7XVN1PROD with HEARING72280A.108
142 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.109
143 


dkrause on DSKHT7XVN1PROD with HEARING72280A.110
144 


dkrause on DSKHT7XVN1PROD with HEARING72280A.111
145 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.112
146 


dkrause on DSKHT7XVN1PROD with HEARING72280A.116
147 


dkrause on DSKHT7XVN1PROD with HEARING72280A.117
148 


dkrause on DSKHT7XVN1PROD with HEARING72280A.118
149 


dkrause on DSKHT7XVN1PROD with HEARING72280A.119
150 


dkrause on DSKHT7XVN1PROD with HEARING72280A.120
151 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.121
152 


dkrause on DSKHT7XVN1PROD with HEARING72280A.122
153 


dkrause on DSKHT7XVN1PROD with HEARING72280A.123
154 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.124
155 


dkrause on DSKHT7XVN1PROD with HEARING72280A.125
156 


dkrause on DSKHT7XVN1PROD with HEARING72280A.126
157 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.127
158 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.128
159 


dkrause on DSKHT7XVN1PROD with HEARING72280A.129
160 


dkrause on DSKHT7XVN1PROD with HEARING72280A.130
161 


dkrause on DSKHT7XVN1PROD with HEARING72280A.131
162 


dkrause on DSKHT7XVN1PROD with HEARING72280A.132
163 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.133
164 


dkrause on DSKHT7XVN1PROD with HEARING72280A.134
165 


dkrause on DSKHT7XVN1PROD with HEARING72280A.135
166 


dkrause on DSKHT7XVN1PROD with HEARING72280A.136
167 


dkrause on DSKHT7XVN1PROD with HEARING72280A.137
168 


dkrause on DSKHT7XVN1PROD with HEARING72280A.138
169 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.139
170 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.140
171 


dkrause on DSKHT7XVN1PROD with HEARING72280A.141
172 


dkrause on DSKHT7XVN1PROD with HEARING72280A.142
173 


dkrause on DSKHT7XVN1PROD with HEARING72280A.143
174 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.144
175 


dkrause on DSKHT7XVN1PROD with HEARING72280A.145
176 


dkrause on DSKHT7XVN1PROD with HEARING72280A.146
177 


dkrause on DSKHT7XVN1PROD with HEARING72280A.147
178 


dkrause on DSKHT7XVN1PROD with HEARING72280A.148
179 

f 


dkrause on DSKHT7XVN1PROD with HEARING72280A.149
180 


dkrause on DSKHT7XVN1PROD with HEARING72280A.150
181 

Æ 


dkrause on DSKHT7XVN1PROD with HEARING72280A.151