[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]



 
                         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




                  U.S. GOVERNMENT PRINTING OFFICE
72-280                    WASHINGTON : 2012
-----------------------------------------------------------------------
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




                    SUBCOMMITTEE ON HUMAN RESOURCES

                     GEOFF DAVIS, Georgia, Chairman

ERIK PAULSEN, Minnesota              LLOYD DOGGETT, Texas, Ranking
RICK BERG, North Dakota              JIM MCDERMOTT, Washington
TOM REED, New York                   JOHN LEWIS, Georgia
TOM PRICE, Georgia                   JOSEPH CROWLEY, New York
DIANE BLACK, Tennessee
CHARLES W. BOUSTANY, JR., Louisiana



                            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


                         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:]

ADVISORY

FROM THE 
COMMITTEE
 ON WAYS 
AND 
MEANS

                    SUBCOMMITTEE ON HUMAN RESOURCES

                                                CONTACT: (202) 225-1721
FOR IMMEDIATE RELEASE
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 unable 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.''

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/.

                                 

    Chairman DAVIS. Good morning, thank you for joining us 
today. At today's hearing we are going to review Supplemental 
Security Income, or SSI, benefits for children. SSI provides 
monthly Federal payments of up to $674 to 1.2 million low-
income disabled children across the United States. In all, SSI 
provides about $9 billion in payments to children each year, 
averaging about $8,000 per child. That $9 billion nearly 
matches the amount taxpayers spend for welfare checks under the 
Temporary Assistance for Needy Families program.
    It is one of several reasons The Boston Globe published a 
series last year that called the children's SSI program ``the 
other welfare.'' As that series detailed and we will hear 
today, SSI benefits for children are not only significant in 
size and expense, but they are also growing rapidly, with 
nearly a 50 percent rise of children receiving payments over 
the last decade. This growth has been driven by mental and 
behavioral impairments, which include attention deficit, 
hyperactive disorder, autism, learning disabilities, and speech 
and language delays. Boys are twice as likely to receive 
monthly disability payments as girls, and over 60 percent of 
children on SSI at age 18 continue collecting payments as 
adults over a period that can span decades.
    Especially troubling in The Boston Globe series were 
allegations that some children are being placed on dangerous 
psychotropic medications in order to increase their chances of 
qualifying for SSI checks.
    That is one reason why I, along with our colleague 
Congressman Richie Neal from Massachusetts, who has joined us 
today, and Senators Susan Collins, Tom Carper, and Scott Brown 
asked the Government Accountability Office to review this 
program. From GAO's preliminary findings we have already 
learned that medication is merely one factor of many that are 
used to make a determination.
    GAO's review goes on to cover a broader array of issues 
important to the oversight rule of the Subcommittee, including 
trends for disabilities under which children qualify, the role 
of medical evidence in determining eligibility, and SSA 
reevaluations of children in the years after they start 
collecting benefits.
    We are privileged to be joined by Katie and Will Bentley of 
Covington, Kentucky, part of the congressional district I am 
honored to represent. Will is a child who receives SSI 
benefits. We need to keep the interest of children like Will 
and their families squarely in mind as we consider ways of how 
to improve this program and how it serves them.
    A review of the hearing's testimony revealed all of our 
witnesses today propose changes in how SSI works with a common 
goal of doing a better job helping children and families 
overcome the disabling conditions that led them to apply for 
SSI in the first place. For example, as several experts have 
noted, SSI today offers monthly checks without any requirements 
that benefits be spent on helping the child to overcome his or 
her disability. Some question whether that may create a 
financial disincentive to overcoming the disability, because 
that would mean the checks come to 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 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 severe disabilities across the Texas hill 
country. This is not an isolated case. It is an example of the 
challenges that families face that we need to be assisting, not 
blaming them for the problem that they have.
    There has been some growth in the SSI program since 2001 
largely in response to the growing number of children that live 
in poverty in this country. Just because more families like the 
Roberts are receiving SSI benefits to help raise their children 
with autism and other significant problems doesn't mean they 
should be targeted for cuts. During the last decade almost 5 
million more children have fallen below the poverty line. One 
could reasonably assume that the increase would have an impact 
on a program designed to help low-income families with disabled 
children.
    While we hear suggestions that the program has changed, the 
Congressional Research Service concludes that the rate of 
children on SSI as a percentage of children living in poverty 
is about the same now as it was in 2001.
    Further, we have increased efforts to identify childhood 
disabilities. The Center for Economic and Policy Research found 
that the number of children receiving screening and diagnostic 
services under Medicaid rose from a little over 5 million to 
over 20 million children from 1998 to 2008. Nevertheless, there 
has not been an increase in SSI approval rates for children 
with mental impairments. According to the Social Security 
Administration, the percentage has actually dropped from 2001 
to 2010.
    There are a number of steps that we can and should take to 
improve the administration of SSI, and I hope we will explore 
those in the hearing. First, I think Congress needs to make 
good on its pledge to provide adequate resources to conduct 
continuing disability reviews to ensure that SSI recipients 
maintain their eligibility for service. And President Obama's 
administration has nearly doubled the number of those reviews 
compared to the last year of President Bush.
    Second, if we are serious about improving outcomes for 
children receiving SSI, I look forward to discussing other 
supports we can offer these families as they work with their 
children and they seek employment opportunities for unemployed 
disabled children.
    We are, as the Chairman indicated, joined by the Bentley 
family, by Katie and her son Will, who receive SSI. They are 
accompanying Jonathan Stein, who is testifying. Despite the 
severe impairments that Will faces, Mrs. Bentley and her 
husband were reluctant as many families are to even apply for 
SSI. They wanted to support Will on their own. But after Mrs. 
Bentley had to close her business to care for Will the 
financial burden was heavy and she took the benefits that she 
is entitled to take. Since Will has been receiving these 
benefits his outcomes have improved remarkably. According to 
Mrs. Bentley, the life altering value of SSI is worth so much 
more than its monetary value. It is truly priceless in her 
words.
    Mr. Chairman, we can all agree on the need to improve and 
strengthen SSI outcomes, and I look forward to working with you 
on reform, but let's reject any direct cuts in assistance to 
the disabled in the name of helping them. However great our 
Nation's fiscal challenges may be, we ought not to balance the 
budget on the backs of disabled children.
    Thank you.
    Chairman DAVIS. I thank you very much, Mr. Doggett. We are 
also pleased to be joined by our colleague on the Ways and 
Means Committee, Representative Richie Neal of Massachusetts, 
who joins me and others in requesting the GAO review showing 
concerns of families and about how they access SSI benefits for 
children and ultimately how the program might be improved.
    Mr. Neal, do you have any comments before we get 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.
    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.
    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 percent, with personality disorders and speech and 
language delays having higher rates of rescission at 34 and 33 
percent respectively.
    SSA has acknowledged the importance of conducting CDRs but 
has primarily attributed its failure to do all required reviews 
to resource constraints and competing workloads. Thus the 
program continues to be exposed to substantial overpayments.
    The recently enacted Budget Control Act of 2011 authorizes 
additional funding for SSA to do more CDRs and SSI 
redeterminations, and the agency is currently assessing how it 
will use such funding should it be appropriated.
    Plus, it is not yet known whether SSA will use this funding 
to do additional childhood CDRs or target its efforts toward 
those mental impairments with the highest potential cessation 
rates as a means of best leveraging its limited resources.
    Mr. Chairman, this concludes my statement. I am happy to 
answer any questions that you or other Members of the 
Subcommittee may have. Thank you.
    [The prepared statement of Mr. Bertoni follows:]
    [GRAPHIC] [TIFF OMITTED] 72280A.001
    
    [GRAPHIC] [TIFF OMITTED] 72280A.002
    
    [GRAPHIC] [TIFF OMITTED] 72280A.003
    
    [GRAPHIC] [TIFF OMITTED] 72280A.004
    
    [GRAPHIC] [TIFF OMITTED] 72280A.005
    
    [GRAPHIC] [TIFF OMITTED] 72280A.006
    
    [GRAPHIC] [TIFF OMITTED] 72280A.007
    
    [GRAPHIC] [TIFF OMITTED] 72280A.008
    
    [GRAPHIC] [TIFF OMITTED] 72280A.009
    
    [GRAPHIC] [TIFF OMITTED] 72280A.010
    
    [GRAPHIC] [TIFF OMITTED] 72280A.011
    
    [GRAPHIC] [TIFF OMITTED] 72280A.012
    
    [GRAPHIC] [TIFF OMITTED] 72280A.013
    
    [GRAPHIC] [TIFF OMITTED] 72280A.014
    
    [GRAPHIC] [TIFF OMITTED] 72280A.015
    
    [GRAPHIC] [TIFF OMITTED] 72280A.016
    
    [GRAPHIC] [TIFF OMITTED] 72280A.017
    
    [GRAPHIC] [TIFF OMITTED] 72280A.018
    
    [GRAPHIC] [TIFF OMITTED] 72280A.019
    
    [GRAPHIC] [TIFF OMITTED] 72280A.020
    
    [GRAPHIC] [TIFF OMITTED] 72280A.021
    
    [GRAPHIC] [TIFF OMITTED] 72280A.022
    
    [GRAPHIC] [TIFF OMITTED] 72280A.023
    
    [GRAPHIC] [TIFF OMITTED] 72280A.024
    
    [GRAPHIC] [TIFF OMITTED] 72280A.025
    
    [GRAPHIC] [TIFF OMITTED] 72280A.026
    
    [GRAPHIC] [TIFF OMITTED] 72280A.027
    
    [GRAPHIC] [TIFF OMITTED] 72280A.028
    
    [GRAPHIC] [TIFF OMITTED] 72280A.029
    
    [GRAPHIC] [TIFF OMITTED] 72280A.030
    


                                 
    Chairman DAVIS. Thank you, Mr. Bertoni.
    Dr. Burkhauser, please proceed with your testimony.

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

    Mr. BURKHAUSER. Thank you for the opportunity to submit a 
summary of my research on the SSI disabled children's program 
contained in my new book with Mary Daly.
    In 1974, the SSI disabled children's program provided 
benefits to a small subpopulation of poor families with age-
eligible children. Only about 10 per thousand poor children 
received such benefits. Program caseloads grew modestly to 20 
per thousand by 1989. Between then and 1996 the number more 
than tripled to 65 per thousand, fell modestly for a year, and 
then increased to 80 per thousand in 2007.
    Based on our reading of the evidence, this dramatic growth 
is not a result of a growing health epidemic of poor children, 
but rather the consequence of several policy decisions that 
have turned a modest program for disabled children into a more 
general welfare program that in large part serves the same poor 
single mothers in the TANF population.
    Seventy-one percent of SSI families are headed by single 
mothers or other non-two-parent families. Increasingly, their 
children have medical conditions that are difficult to 
objectively measure and they are coming onto the SSI program 
via increasingly subjective evaluations by SSA gatekeepers.
    So why has the SSI caseload risen? Is it a health epidemic? 
While it is difficult to obtain information on the underlying 
health of poor children, we find no evidence of worsening 
health in this population. While the number of poor children 
has increased, the number of children in that population 
receiving SSI benefits has increased even faster; hence, the 
400 percent growth in their share among poor children 
previously mentioned.
    Is it program policy factors? I believe it is and I focus 
on three policy effects. The first is TANF and SSI 
interactions. The typical SSI applicant family is headed by a 
poor single mother who is eligible for TANF. Because SSI 
benefits are larger than TANF benefits and have no work 
requirements, it is in the interest of these single mothers to 
apply and economists have shown that the greater the difference 
the more likely they are to do so. States also have an 
incentive to move their TANF families to the SSI program, thus 
cost shifting their payments to the Federal Government. This 
becomes a more realistic option, the lower the standard for 
establishing SSI eligibility and the more subjective SSI's 
eligibility decisions are.
    So here is where the second change comes in. Eligibility 
standards were both lowered and made more subjective in the 
wake of the Zebley case, and this explains much of the increase 
in SSI caseloads between 1989 and 1996. As part of welfare 
reform, Congress modified definitions of disability for 
children, creating a new stricter standard. This reduced 
caseloads per child, but only for 1 year.
    Here is where the third change comes in; that is, a change 
in the way SSI gatekeepers interpret these rules. The outcome 
of applying more subjective criteria to determine eligibility 
can be seen in the percentage of SSI awards for two conditions: 
Mental retardation and other mental conditions. These two 
conditions represent extremes between medically measurable and 
more subjectively determined outcomes.
    In 1983, approximately 37 percent of new beneficiaries 
qualified based on mental retardation, and only 5 percent based 
on other mental conditions. Today over 55 percent of new 
beneficiaries claim other mental conditions.
    In sum, the research findings provide plausible evidence 
SSI program growth has primarily been driven by policy changes 
rather than the declining health of poor children. But what 
policy caused, new policies can change, but only if they are 
fundamental changes.
    The SSI program closely resembles more general welfare 
programs and thus can be changed using many of the same 
principles applied in moving from AFDC to TANF. This would mean 
moving SSI from the Federal Government to the States. This 
devolution would, like TANF, hold States accountable to Federal 
guidelines regarding outcomes of children with disabilities. 
Like TANF, SSI could be funded by block grants and States could 
be asked to comply with broader goals.
    Devolution to the States would also solve three major 
problems with the current program. First, on equity grounds, 
placing responsibility for all welfare families with the States 
would reduce the difference in treatment of poor families based 
on the often subjective decision of whether their children meet 
the SSI standards.
    Second, devolving the SSI program to the States would limit 
State incentives to shift the cost of managing welfare 
caseloads to the Federal Government through the SSI.
    And third, devolution to the States, who have far more 
experience than SSA in transitioning poor single mothers in the 
workforce, would allow these single mothers to work now and 
eventually allow their disabled children the opportunity to 
work after the children age off the SSI rolls.
    Thank you for the opportunity for speaking today.
    [The prepared statement of Mr. Burkhauser follows:]
    [GRAPHIC] [TIFF OMITTED] 72280A.031
    
    [GRAPHIC] [TIFF OMITTED] 72280A.032
    
    [GRAPHIC] [TIFF OMITTED] 72280A.033
    
    [GRAPHIC] [TIFF OMITTED] 72280A.034
    
    [GRAPHIC] [TIFF OMITTED] 72280A.035
    
    [GRAPHIC] [TIFF OMITTED] 72280A.036
    
    [GRAPHIC] [TIFF OMITTED] 72280A.037
    
    [GRAPHIC] [TIFF OMITTED] 72280A.038
    
    [GRAPHIC] [TIFF OMITTED] 72280A.039
    

                                 
    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 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:]
    [GRAPHIC] [TIFF OMITTED] 72280A.040
    
    [GRAPHIC] [TIFF OMITTED] 72280A.041
    
    [GRAPHIC] [TIFF OMITTED] 72280A.042
    
    [GRAPHIC] [TIFF OMITTED] 72280A.043
    
    [GRAPHIC] [TIFF OMITTED] 72280A.044
    
    [GRAPHIC] [TIFF OMITTED] 72280A.045
    
    [GRAPHIC] [TIFF OMITTED] 72280A.046
    
    [GRAPHIC] [TIFF OMITTED] 72280A.047
    
    [GRAPHIC] [TIFF OMITTED] 72280A.048
    
    [GRAPHIC] [TIFF OMITTED] 72280A.049
    
    [GRAPHIC] [TIFF OMITTED] 72280A.050
    
    [GRAPHIC] [TIFF OMITTED] 72280A.051
    
    [GRAPHIC] [TIFF OMITTED] 72280A.052
    
    [GRAPHIC] [TIFF OMITTED] 72280A.053
    
    [GRAPHIC] [TIFF OMITTED] 72280A.054
    
    [GRAPHIC] [TIFF OMITTED] 72280A.055
    
    [GRAPHIC] [TIFF OMITTED] 72280A.056
    
    [GRAPHIC] [TIFF OMITTED] 72280A.057
    
    [GRAPHIC] [TIFF OMITTED] 72280A.058
    
    [GRAPHIC] [TIFF OMITTED] 72280A.059
    

                                 
    Chairman DAVIS. Thank you, Dr. Wittenburg.
    Mr. Stein, you may proceed.

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

    Mr. STEIN. Good morning. I am Jonathan Stein, General 
Counsel at Community Legal Services in Philadelphia, where I 
have represented children with disabilities and their families 
for most of my 43 years of practice. CLS is a member of the SSI 
Coalition for Children and Families, 80 organizations that 
share the belief that SSI is a critical lifeline for children 
with severe disabilities, our Nation's most vulnerable children 
and youth.
    I first would like to introduce you all to Will Bentley, 
and his picture is up there on the wall. Will is an 8-year-old 
boy who lives in Covington, Kentucky with parents and sister. 
Nearly from birth Will's parents knew something was wrong. Will 
was very slow in learning to speak and had trouble eating and 
drinking because he wasn't able to keep liquid in his mouth. 
His parents enrolled him in First Steps, Kentucky's Early 
Intervention program, where he learned to sign with his hands 
so that he could communicate with his family.
    At age 3 Will began to have frequent violent seizures. His 
diagnoses grew to include developmental delays, speech delays, 
Sensory Integration Disorder, Anxiety Disorder, frequent bouts 
of depression, among others. Taking Will to all his needed 
medical and therapy appointments became a full-time job for his 
mother, Kate.
    Katie Bentley was forced to shut down her small business to 
stay home and care for Will and the family suffered a huge loss 
of income. In Katie's own words, ``My husband and I really 
wanted to support Will on our own, but we quickly learned that 
the dream we had of our own family would never become a 
reality. I surrendered my career and we adapted our lives so 
that Will's needs could be met. Before he was granted SSI in 
2010 we barely could even afford the gas to drive him to his 
therapy appointments with his specialist. Now SSI allows us to 
focus on Will's needs.''
    And as she further says, ``At one time Will was unable to 
do anything for himself, he couldn't even feed himself. Now he 
has learned to write his name, and a few days ago Will learned 
to zip his own jacket, and is even learning to read. The wealth 
of support that comes from SSI and Medicaid is a dream come 
true for us,'' says Katie Bentley.
    Helping children with severe disabilities like Will lead 
their fullest lives possible requires access to treatment and 
support services as well as financial support to replace lost 
income when a parent must stay home to care for the child. SSI 
is a key ingredient to helping them get the care and support 
they need.
    Sensational and ill-informed media accounts as in The 
Boston Globe and elsewhere have relied almost entirely on 
anecdotal observations and half truths. So let's instead 
consider some facts.
    Fact, only the most severely impaired children qualify for 
SSI. Fewer than 10 percent of all children in the Nation with 
disabilities receive SSI. And this is because of the 
extraordinarily strict SSI disability standard, an objective 
standard, unlike Mr. Burkhauser's characterization of it as 
subjective. Just 39 percent of children who apply are awarded 
SSI, a figure that has remained essentially unchanged for well 
over the past decade.
    Fact, SSI was established by Congress to aid children and 
adults with physical as well as mental impairments. As a nation 
we have made great strides toward achieving parity between 
mental and physical disabilities. Any debate over whether 
mental impairment, such as ADHD or autism, are as 
``legitimate'' as physical disabilities represents a 
significant and shameful step 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:]
    [GRAPHIC] [TIFF OMITTED] 72280A.060
    
    [GRAPHIC] [TIFF OMITTED] 72280A.061
    
    [GRAPHIC] [TIFF OMITTED] 72280A.062
    
    [GRAPHIC] [TIFF OMITTED] 72280A.063
    
    [GRAPHIC] [TIFF OMITTED] 72280A.064
    
    [GRAPHIC] [TIFF OMITTED] 72280A.065
    
    [GRAPHIC] [TIFF OMITTED] 72280A.066
    
    [GRAPHIC] [TIFF OMITTED] 72280A.067
    
    [GRAPHIC] [TIFF OMITTED] 72280A.068
    
    [GRAPHIC] [TIFF OMITTED] 72280A.069
    
    [GRAPHIC] [TIFF OMITTED] 72280A.070
    

                                 
    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.
    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:]
    [GRAPHIC] [TIFF OMITTED] 72280A.071
    
    [GRAPHIC] [TIFF OMITTED] 72280A.072
    
    [GRAPHIC] [TIFF OMITTED] 72280A.073
    

                                 
    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 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.
    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:]
    [GRAPHIC] [TIFF OMITTED] 72280A.074
    
    [GRAPHIC] [TIFF OMITTED] 72280A.075
    

                                 
    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.
    Now, there is a kind of myth out there that this is the new 
welfare; this is almost a defamation of the SSI kids program. 
And it is the wrong assumption that suddenly when you reduce 
the TANF rolls, all those kids go on to SSI. I think you have 
heard a little theme about that by a couple of people at this 
table. But despite those allegations that SSI is or has become 
a general welfare program, the truth is that being poor is not 
enough to qualify for SSI. To get SSI you also have to have a 
very severe disability, and the Congress in 1996 in the welfare 
legislation then upped the severity standard greatly.
    Mr. DOGGETT. Let me just ask you one other question that 
has been referred to in testimony I think by Dr. Roberts and by 
others here. Looking at the testimony that is on file with the 
Committee today from Dr. James Scully on behalf of the American 
Psychiatric Association, that testimony indicates in response 
to this issue of well, aren't the people out there just passing 
out drugs to these kids so they can qualify for this program. 
He says that the medication treatment for disorders like ADHD 
actually reduces the likelihood of eligibility for SSI. Is that 
correct?
    Mr. STEIN. That is exactly true.
    Chairman DAVIS. Mr. Stein, I am sorry to interrupt.
    Mr. DOGGETT. Continue with another Member.
    Chairman DAVIS. Time has expired and part of the reason for 
needing to expedite is we are going to have a vote coming in 
the next 15 to 30 minutes. I want to make sure that every 
panelist has the opportunity. If you could give that response 
to the Committee in writing we would be very grateful for that.
    Mr. STEIN. Yes. I was in mid sentence, Mr. Chairman. May I 
just complete that sentence?
    Thank you for that.
    Chairman DAVIS. I tell you what we are going to do. Since 
the last sentence was a minute and a half long I think we will 
let it come back in writing. I share equal passion for helping 
young people and have volunteered and worked in this space for 
nearly 30 years. So I think that we can have some common ground 
in this.
    With that I would like to recognize the gentleman from 
Minnesota, Mr. Paulsen.
    Mr. PAULSEN. Thank you, Mr. Chair. I will be pretty quick. 
I want to thank you for holding this hearing. And I want to get 
back to this issue of the timely reviews. Mr. Stein had noted I 
think back in January regarding children on SSI that existing 
law already requires disability reviews every 3 years where 
improvement is likely. But the data really does suggests that 
those reviews have not actually been happening recently in 
years.
    For example, the Social Security Administration Inspector 
General recently reported that although required by statute, 
SSA failed to complete 79 percent of scheduled child reviews 
resulting in an estimated 1.4 billion in overpayments. So there 
is obviously concern about this issue on a bipartisan basis. In 
fact, in the Budget Control Act which we just adopted in August 
we provided more resources for these reviews, as well as other 
program integrity activities to the tune of $623 million for 
2012.
    Mr. Bertoni, you also note in your statement and made some 
comments that SSA does not appear to be conducting childhood 
CDRs in a very timely manner. In your opinion, how vital is it 
for SSA to conduct childhood CDRs? And in what ways could SSA 
better target those efforts?
    Mr. BERTONI. Certainly. The CDRs they are conducting, as I 
said earlier, are for age 18 redeterminations as well as the 
low-birth-weight babies, but there is a vast range of other 
mental impairments that they are not getting to. We do know 
that many of them are increasing and represent a significant 
portion of the rolls: Speech delay, 21 percent; ADHD, 26 
percent; autism, 11 percent. In excess of 50 percent of the 
rolls are within those three impairments.
    They are getting very few CDRs, and again, some of those 
cases potentially could have medically improved, the science 
says that that is a possibility. A number of those are probably 
listed as medical improvement expected, so I think you are 
foregoing an opportunity, I think, not just to save taxpayer 
dollars but to put children who are medically impaired on a 
different track to a track toward productivity and integration, 
toward something other than lifelong Social Security benefits.
    Mr. PAULSEN. So knowing there is that opportunity there, do 
you believe that SSA has a plan for how to use the moneys in 
the Budget Control Act that we just passed a couple of months 
ago to target these reviews more efficiently and effectively?
    Mr. BERTONI. I do know they are concerned about certain 
trends in the caseload, certain impairments, and they are 
eyeing it very closely. I do not believe there is a specific 
plan to get to the existing backlog or what they would do going 
forward.
    Mr. PAULSEN. Mr. Chairman, I just think we are going to 
have to monitor this because we are all looking at, you know, 
stretched resources, and there is broad agreement here that 
these reviews, timely reviews, are critical, so I will yield 
back my time to move on.
    Chairman DAVIS. I thank the gentleman.
    I now recognize Mr. McDermott from Washington State for 5 
minutes.
    Mr. MCDERMOTT. Thank you, Mr. Chairman. It seems to me this 
hearing has two issues in it, and we can't deal with both of 
them. One is the effect of poverty on poor kids and what we 
have done, and Dr. Burkhauser and Dr. Wittenburg both talked 
about that, we ought to have a hearing about that and what we 
ought to do about it, but the more important issue here, it 
seems to me, is what Dr. Roberts says.
    Dr. Roberts says that child psychiatrists are fraudulently 
putting children on SSI. She says in her testimony, because 
diagnosing a child with psychiatric condition is based almost 
exclusively on the verbal report by a child's parents, it is 
easy for the doctor to arrive at the wrong conclusion.
    Now, that would imply that you don't examine the kid. I am 
a child psychiatrist; you are a child psychiatrist. You saw 
that child, and you made the diagnosis on the basis of reports 
but also what you saw in front of you. For you to imply that 
any kid out of the 1.2 million kids that are on SSI in this 
country were put there by somebody who didn't see the child is 
an absolute accusation of fraud.
    And I know you went on Oprah, and you have been on CNN, so 
I know you have the ear of the media. That is why I am taking 
you on, because you are in the media here. And the fact is that 
I would like to hear, did you ever report a doctor for doing 
such a thing? Because it is against the ethics of the American 
Psychiatric Association to make a diagnosis without seeing the 
patient. You know that. I can't make it--I can't say what I 
think of Mr. Davis' psychiatric condition because I haven't 
examined him. Everybody understands that.
    Chairman DAVIS. If I could interrupt, I would only agree to 
that if I could have reciprocity with the gentleman from 
Washington State.
    Mr. MCDERMOTT. Well, I make my point. You don't--the 
business about making a decision about Miss Schiavo by Dr. 
Frist. Making a decision about somebody in Florida on a 
breathing machine when you haven't seen the patient is 
malpractice, and it is unethical.
    So now you are accusing doctors of doing that. Give me an 
example of someone you know by name that saw a patient or 
didn't see a patient and signed a paper and said they are 
eligible for SSI.
    Chairman DAVIS. I just, in respect of HIPAA, I would ask 
that you not name any individuals that you are citing if you 
have those records.
    Mr. MCDERMOTT. Well, you can give me a false name like 
Sarah, all right?
    Dr. ROBERTS. Thank you, Mr. McDermott, for the opportunity. 
I don't know how you came to the conclusion that I said that 
because the diagnosis is made primarily on the report by the 
parent that the child is never seen. Evaluations of children, 
as it is done in practice--it is very nice that there is so 
much testimony here that getting a child on to SSI is so 
difficult and the requirements are so strict and stringent. 
They are not. In practice--now, I don't know how many people 
here actually treat children still today in poverty and see and 
help them apply for SSI every week, because I do. Every week. 
Filling out SSA forms. And the children----
    Mr. MCDERMOTT. How long do you spend with these kids, 2 
minutes or 3 or an hour?
    Dr. ROBERTS. See, that is the difference. I spend 2 hours 
or more, and my colleagues spend 20 or 5, and that is the 
problem.
    Mr. MCDERMOTT. Twenty minutes or 5?
    Dr. ROBERTS. Five minutes, right.
    Mr. MCDERMOTT. How do you know that?
    Dr. ROBERTS. How do I know that? Because the doctors tell 
me that, and the patients who have seen these doctors report 
that to me. The doctors----
    Mr. MCDERMOTT. Have you reported them for an ethics 
violation for seeing the patient for 5 minutes and then going--
--
    Dr. ROBERTS. It is a common practice, Mr. McDermott, a 
common practice.
    Mr. MCDERMOTT. Common practice?
    Dr. ROBERTS. And, yes, I report it to the supervisors at 
the county, and they tell me forget about it.
    Mr. MCDERMOTT. Wow.
    Dr. ROBERTS. For example, in the case of Sarah, when I 
denied her, her mother came back a year later and said, my 
house burned down; we need the money.
    Mr. MCDERMOTT. You have given me one example. You--and, I 
am sorry--let me tell you----
    Dr. ROBERTS. Oh, I can give you hundreds of examples. 
Hundreds.
    Mr. MCDERMOTT. You are trying to draw a general policy.
    Dr. ROBERTS. No, I am not.
    Mr. MCDERMOTT. Yes, you are.
    Dr. ROBERTS. I am not. I am trying to say there is a lot of 
fraud and abuse in the system, and it needs to be fixed. I am 
not referring to Will; I am talking about kids like Sarah.
    Mr. MCDERMOTT. And what have you done to repair it? Where 
have you used the organizations that one would use to repair 
that fraud and abuse? What have you done?
    Dr. ROBERTS. I report the--I write books. I write articles. 
And I report it to supervisors. What else can I do? I testified 
before a Subcommittee; that is the best I can do.
    Mr. MCDERMOTT. Are you a member of the AMA? Are you a 
member of the American Psychiatric Association?
    Dr. ROBERTS. No, I let my membership lapse because they are 
making statements like they did that completely ignores what 
happens in the trenches for those of us who are actually 
treating these children. They make these blanket statements as 
if everyone is getting a very strict review. They are not. 
After Sarah was denied----
    Mr. MCDERMOTT. You are making the blanket statements----
    Dr. ROBERTS [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 be a goal is 
how do we have people feel a part of our society, have them be 
engaged in work that they enjoy, work that they feel a value 
to? And so a lot of what I have heard here today seems we have 
barriers and disincentives to that direction.
    And so, Dr. Wittenburg, you know, from your research, you 
know, there are very low rates of enrollment in vocational 
rehabilitation services on these youth that are transitioning, 
and you mentioned several demonstration projects. I guess one 
of the brief questions is the Youth Transition Demonstration. 
What is the theory behind that?
    Mr. WITTENBURG. That is a very good question, Mr. Berg, and 
the Youth Transition Demonstration is one of the demonstrations 
that I am very optimistic about because I feel like it is 
asking the right questions, which is, how can we promote the 
long-term outcomes of these youth? It looks at the exact poor 
outcomes that I put in that slide, and it says, what do we know 
about best practices in terms of delivering employment supports 
to youth with disabilities? What do we know about incentives 
that may affect youths' choices regarding the labor market? And 
it combines a series of intervention approaches, and I think 
one of the key points of it, Mr. Berg, is that it is designed 
to be a customized approach to meet the individual needs of the 
youth. It is not a standard system.
    So the Youth Transition Demonstration is operating in 
several sites across the country, and sites have developed 
their own models around these general parameters, and it is a 
flexible sort of model. It is too early to tell what the 
impacts of YTD are, but demonstrations like YTD are really 
important because they are changing the way that we are 
approaching youth with disabilities, and the way we should be 
approaching, quite frankly, all the youth because the outcomes 
of these populations are not acceptable currently.
    Mr. BERG. Well, then the next question is a follow up, 
really relates to the high school graduation.
    Mr. WITTENBURG. Yeah.
    Mr. BERG. And, I mean, I am just stunned by, again, the 
statistics where, you know, two out of five don't have a 
diploma; four out of five are not working; one out of five is 
arrested.
    Mr. WITTENBURG. Yeah.
    Mr. BERG. Again, it seems like there are some things that 
are failing here. So, you know, back to you, and even within 
the program, where we have people receiving survivor benefits, 
children, they must remain in school, so I guess my question to 
you is, you know, does this current policy undermine what we 
are trying to do and should this be a requirement in the system 
for the education?
    Mr. WITTENBURG. I think that is an excellent question, Mr. 
Berg, and I do believe that we should be putting requirements 
in the system that help youth achieve all the outcomes that 
they need to achieve.
    Now, all these requirements are not going to be appropriate 
for all youth. For example, it may not be appropriate to apply 
these requirements to say, youth who are homebound, but I think 
that we can move beyond a one-benefit-fits-all-needs model, and 
if we can customize supports to better meet the needs of these 
youth--and I want to be clear, I am not advocating cutting the 
child SSI program in any way. It provides a vital source of 
low-income support. I am suggesting that we rethink the way the 
benefits are provided so youth, getting back to your question, 
so that when we come to a youth, they don't say to themselves, 
look, I am afraid to work because it might jeopardize my 
benefit status.
    Mr. BERG. Right, right.
    Mr. WITTENBURG. So----
    Mr. BERG. Well, and that is kind of in the bigger picture 
here; I think the one-size-fits-all strategy from the top down 
is a problem. I think the States are the innovators, so if 
States can come up with solutions. And, you know, you talked 
really about again I think the Federal program restricts 
innovation at the State level in trying to be more effective 
and better outcomes for children. And so I guess kind of my 
question is this integration you talked about with the States, 
if they have more flexibility, what--I mean, I understand the 
benefits. What are the issues we should be aware of if we are 
going to transition more of those decisions down to the State 
level?
    Mr. WITTENBURG. Well, the first issue you should be aware 
of is we don't know what works, and so part of the history of 
the SSI program is that it became a Federal program because 
States were having a problem serving people with disabilities.
    Chairman DAVIS. Dr. Wittenburg, if I could suggest, if you 
could complete that answer for the record, that would be 
helpful. I hate to be the traffic cop this morning, but knowing 
that we have this impending vote, I want to make sure that all 
our Members have the opportunity to question.
    Mr. WITTENBURG. I am sorry, Mr. Berg.
    Mr. BERG. I yield back.
    Mr. WITTENBURG. Okay.
    Chairman DAVIS. The chair now recognizes Mr. Lewis from 
Georgia.
    Mr. LEWIS. Thank you, Mr. Chairman, thank you for holding 
this hearing.
    Thank members of the panel for being here.
    Mr. Chairman, I would like for Mrs. Bentley to come before 
the witness table.
    Mrs. BENTLEY. Thank you.
    Mr. LEWIS. Mrs. Bentley, thank you and Will for being here. 
Can you tell the Subcommittee something about your son Will's 
disability and about how SSI benefits have helped you better 
care for him? Or do you think SSI benefits have made a positive 
difference for Will? What improvement has he made since 
receiving SSI? What would happen to Will and your family if you 
did not have assistance from the SSI program?
    Mrs. BENTLEY. Thank you.
    Will has a seizure disorder that when he has seizures, and 
most of the time, they are at night--he does have some during 
the daytime, but he has them when he sleeps, and he loses 
skills that he has learned during the day. So if it is in his 
short-term memory, Will may not get it back for some time. And 
he was unable to feed himself, unable to communicate. He 
communicated with his hands. We learned how to tell stories, 
and then he learned how to talk after we started controlling 
the seizures somewhat, but they are in the part of his brain 
that controls speech, so that was huge for him.
    For Will to be able to dress himself and be able to read 
that he can today, he is learning so much, and feeding himself 
and being able to talk to us and to tell us things. His speech 
still has delays, but Will can say so much, and he can 
communicate in so many ways.
    Without--with the SSI program and being able to have those 
benefits, it brought so many things to Will, resources that I 
couldn't even imagine doing without. I don't think that Will 
would be where he is at today if I had not had that 
opportunity. These programs just really are priceless to 
families, to have the support, the doctors, to be able to buy 
his medicines and not worry, to be able to take him to therapy 
and get a good home program that I could use so that when Will 
is in the community or he is at home, we are able to find ways 
to help him be a part of that. I am not sure if I have answered 
all your questions.
    Mr. LEWIS. Well, thank you, you have done very well.
    Mrs. Bentley, thank you so much.
    How would you respond to some of the comments from the 
witnesses here today, particularly those who claim that the 
childhood SSI program is not working, that it is devastatingly 
corrupt, it is a menace to children, and a tragic misuse of 
public funds? How does that make you feel when you have to read 
these type of allegations, when you are trying to do the best 
for your son Will?
    Mrs. BENTLEY. It makes me want to ask you guys to come home 
with me, spend some time with me, some time with Will, and to 
see how great his life is. The opportunities we are giving him 
are priceless.
    I have huge hopes and dreams for my son, and I am working 
with him to help do that.
    If SSI was not available to our family, I could not do 
that; I couldn't give him an opportunity.
    Some day my son is going to be a productive part of the 
community. He is not going to be someone who is there just 
getting a check, and right now that gives us an opportunity for 
me to be there and really be enriched in his life, not just on 
the sidelines. I am here with him making sure that he has a 
future, and I put my career back where it needs to be right 
now. I can always pick that up later. If I don't make the 
changes in Will's life today, if I don't invest my time in him, 
I am never going to change the outcome for him. He is going to 
be the same way his entire life.
    But now I know that Will has a chance because I am not 
going to quit. I am going to be there for him and every other 
child that is tucked in my heart today as I come here before 
you.
    Mr. LEWIS. Mrs. Bentley, I appreciate you saying what you 
said. It is my philosophy, it is very simple, that you cannot 
give up or give in or give out, and thank you for your standing 
up for Will and speaking up for this program.
    Mr. Chairman, you know, in spite of all of the difficulties 
that we have as a country, I don't think this is the time to 
cut this program and try to balance the budget on the backs of 
the most disabled children, young people in our society. We can 
do better.
    Thank you very much, Mrs. Bentley.
    Mrs. BENTLEY. Thank you.
    Chairman DAVIS. I thank the gentleman.
    And, you know, as we move forward, I think one of the 
highlights that speaks to me and points all the more to why 
Congressman Neal and I requested the GAO report in the first 
place is the Sarahs of the world are the ones who take away the 
opportunities for the Wills of the world, and nobody, I think, 
has implied or remotely suggested cutting the budget on the 
backs of the needy. I think what we are trying to do is 
understand broken processes so that we can repair them and 
improve the quality of our systems overall, and that 
unemotional focus in a very emotional situation, I believe, is 
critical and nonpartisan in nature. Just as we were able to 
have such a successful reform in the child welfare 
reauthorization, I would hope as we move forward with these 
programs, we can accomplish the same thing.
    With that, I recognize Mr. Reed for 5 minutes.
    Mr. REED. Thank you so much, Mr. Chairman, and I strongly 
associate myself with your words because I think, Mrs. Bentley, 
I am a new Member of Congress, and everybody up here 
recognizes. My son's name is Will. I have two nephews that have 
autism, one low functioning, one high functioning, and the 
system needs to be secured. And I hope you take some comfort in 
knowing that we all up here recognize the system needs to be 
here for you and for Will. But what we need to focus on is 
making sure that the abuses and the program is sustainable and 
the abuses are weeded out so that it will be here in the future 
for Will and the future Wills.
    And so I come out here from a new perspective of trying to 
look forward, and when I hear my colleagues who have been here 
for quite sometime talk about how the Federal Government has 
done it so well and we shouldn't give it to the States or we 
shouldn't experiment with things at the State level, I just go 
to the scoreboard. I mean, I look at Social Security, bankrupt 
2036; Medicare, bankrupt 2019; Medicaid, every county in my 
district, I represent eight counties in New York State, 100 
percent of the property tax levy goes to Medicaid. It is 
driving my seniors out of the homes that their parents built 
because they can't pay the property tax bill. So I came here to 
make a difference. I came here not to talk about how President 
Bush cut the program but President Obama is restoring the 
program. That partisan stuff, I am tired of it.
    So we are here to ask the questions of, how do we 
strengthen this program, how do we--and I will start 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 voc-rehab services are very minimal these days to 
nonexistent. They could be much more proactive. Vocational 
Rehabilitation is a State agency, so this is State action.
    Mr. REED. So you recommend State action?
    Mr. STEIN. We recommend that there be improved and pumped-
up and targeted services by State voc-rehab agencies that work 
with Social Security and with other Federal and State agencies 
to really assist kids who are older kids and teenagers and 
those transitioning after 18. Indeed, you know, you don't have 
an automatic ride onto SSI after 18. One-third of SSI kids are 
terminated at age 18.
    Mr. REED. Thank you.
    Mr. STEIN. That is a population that also needs voc-rehab 
services as well.
    Mr. REED. That is a very reasonable recommendation. I 
appreciate you giving us that thoughtful comment.
    Mr. Bertoni, from your perspective, what is one of the top 
areas we could target to go after the fraud and abuse in the 
system?
    Mr. BERTONI. Aside from the income and asset, there is a 
lot that can be done on the income and assets with the parents, 
but that is not the subject of this hearing.
    From a medical standpoint, I think really targeting those 
cases that are most likely to improve, doing the appropriate 
reviews and identifying those children who can move, as you 
said, to that different track, that more productive track, is 
key. If you don't, there is the likelihood if it is not fraud, 
it could be abuse, whereby folks will linger on the rolls for 
many years well past their eligibility period, and that is a 
cost to the taxpayer. So if we don't want to touch the front 
end, which folks can argue whether it is subjective or not 
subjective, we really need to look at existing folks, the 
existing folks on the rolls and making sure that they are truly 
eligible for benefits, and the way you do that is by doing the 
reviews that you are required to do.
    Mr. REED. The reviews. Now on the front end, Dr. Roberts, 
any recommendations as to how to make this more of an objective 
standard?
    Dr. ROBERTS. It would be very hard because, like I said, 
when children are being assessed, it is really their parents' 
report. I am not speaking of children like Will. I am not 
talking about the children I have helped on to the SSI rolls 
who definitely needed the help, their family needed the help, 
but the system has to be reformed in terms of the way the money 
is used by those who receive it. Regular reviews are a good 
start, but if the patient is still being seen very quickly----
    Mr. REED. I see my time has expired. Maybe we can talk 
offline or maybe written recommendations as to creating a more 
objective standard from the gatekeeper perspective.
    Thank you, Mr. Chairman. With that, I yield back.
    Chairman DAVIS. I thank the gentleman.
    And Mr. Neal, my partner in the original request, will have 
the last word.
    Mr. NEAL. Just a couple of thoughts. First how difficult it 
is to have these conversations, how really hard it is because 
they become so charged when we really are trying to discern 
evidence that might support Mrs. Bentley and her family, and 
that is what the goal ought to be here. That is the priority.
    Now, Social Security is not going bankrupt in 2036. I have 
not heard one actuarial suggestion that that is the case.
    Dr. Wittenburg I believe is correct, the reason that the 
Federal Government took over the initiative was because the 
States were ineffectual in their approach, and the suggestion 
that I offered earlier, and I hope that the Subcommittee and 
the Full Committee might entertain, is the idea of having the 
Institute of Medicine take a look at the program. I do think 
that Mr. Bertoni has raised a reasonable point when he says 
there is a difference between fraud and abuse. There is a chasm 
there, and abuse clearly could be perhaps an overworked 
physician suggesting, well, medication becomes the first 
option. And there are educators in Springfield and Holyoke, 
Massachusetts, that I have enormous regard for--I have known 
them my whole life, professionally and personally--and they 
have suggested to me that this is a worthwhile examination 
based upon the challenges they face every day in the classroom. 
And there is evidence that the rolls have grown, and if it is 
for children like Will, they should grow. If it is an abusive 
State, then we have an obligation just to examine it, and I 
don't think we ought to be afraid of the outcomes that the 
Institute of Medicine might produce, and I would hope we could 
all rally around the suggestion and the responsibility we have 
to ensure that people that need the benefit get it and the 
people that don't need the benefit are removed from it. That is 
a simple equation.
    So thank you, Mr. Chairman, and I appreciate very much you 
allowing me to participate today.
    Mr. STEIN. Mr. Neal, may I just add something to your 
response, which is I think we fully agree with that, and I 
think the heart of what you are saying is the need not to rush 
in haste. I think that we need to wait for the GAO study, which 
is in its ``preliminary observation'' stage today. We need an 
Institute of Medicine study, and I think the danger, as Dr. 
Wittenburg says in his statement, is to rush, like Congress did 
15 years ago. He states in two places in his testimony today 
that there were media reports at that time in the mid-1990s, 
which were later proved to be totally untrue about abuse, about 
parents coaching, and all of this, and that fueled changes in 
the law in this Congress in 1996, changes that he says, at 
pages 3 and 4 of his testimony, were unwise and made things 
worse. And he is urging, and I think we all in this room should 
be in agreement, that this is not a program that we should rush 
into changing. We should take time--we should look at the 
studies. We should take our time because the lives and health 
of too many children are at stake for hasty action.
    Mr. WITTENBURG. And if I could just say for the record, I 
would say that welfare reforms made in 1996 were not evidence-
based changes. They were made in haste. So I don't want to put 
a judgment on whether they were good or bad changes, but 
certainly, when you look at the outcomes that we are seeing 
today, I think it does cause us to look at what is going on in 
the SSI program.
    Chairman DAVIS. Does the gentleman yield back?
    Mr. NEAL. I did already.
    Chairman DAVIS. I thank the gentleman.
    And I thank all of our witnesses who came to join us today 
for this discussion. If Members have additional questions, they 
will be submitting them directly to you all in writing. What I 
would ask is that the witnesses submit a copy of their response 
to the Committee for the record so that it can be shared with 
all Members and staff. We appreciate your time that you have 
invested in preparation, especially the Bentleys for coming 
from my home area in Covington, Kentucky.
    And with that, this hearing stands adjourned.
    [Whereupon, at 10:31 a.m., the Subcommittee was adjourned.]
    [Questions for the Record follow:]
    [GRAPHIC] [TIFF OMITTED] 72280A.076
    
    [GRAPHIC] [TIFF OMITTED] 72280A.077
    
    [GRAPHIC] [TIFF OMITTED] 72280A.078
    
    [GRAPHIC] [TIFF OMITTED] 72280A.079
    
    [GRAPHIC] [TIFF OMITTED] 72280A.080
    
    [GRAPHIC] [TIFF OMITTED] 72280A.081
    
    [GRAPHIC] [TIFF OMITTED] 72280A.082
    
    [GRAPHIC] [TIFF OMITTED] 72280A.083
    
    [GRAPHIC] [TIFF OMITTED] 72280A.084
    
    [GRAPHIC] [TIFF OMITTED] 72280A.085
    
    [GRAPHIC] [TIFF OMITTED] 72280A.086
    
    [GRAPHIC] [TIFF OMITTED] 72280A.087
    
    [GRAPHIC] [TIFF OMITTED] 72280A.088
    
    [GRAPHIC] [TIFF OMITTED] 72280A.089
    
    [GRAPHIC] [TIFF OMITTED] 72280A.090
    
    [GRAPHIC] [TIFF OMITTED] 72280A.091
    
    [GRAPHIC] [TIFF OMITTED] 72280A.092
    
    [GRAPHIC] [TIFF OMITTED] 72280A.093
    
    [GRAPHIC] [TIFF OMITTED] 72280A.094
    
    [GRAPHIC] [TIFF OMITTED] 72280A.095
    
    [GRAPHIC] [TIFF OMITTED] 72280A.096
    
    [GRAPHIC] [TIFF OMITTED] 72280A.097
    
    [GRAPHIC] [TIFF OMITTED] 72280A.098
    

                                 

    [Submissions for the Record follow:]
    [GRAPHIC] [TIFF OMITTED] 72280A.099
    
    [GRAPHIC] [TIFF OMITTED] 72280A.100
    
    [GRAPHIC] [TIFF OMITTED] 72280A.101
    

                                 
[GRAPHIC] [TIFF OMITTED] 72280A.102

[GRAPHIC] [TIFF OMITTED] 72280A.103

[GRAPHIC] [TIFF OMITTED] 72280A.104

[GRAPHIC] [TIFF OMITTED] 72280A.105



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.106

[GRAPHIC] [TIFF OMITTED] 72280A.107

[GRAPHIC] [TIFF OMITTED] 72280A.108

[GRAPHIC] [TIFF OMITTED] 72280A.109



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.110

[GRAPHIC] [TIFF OMITTED] 72280A.111

[GRAPHIC] [TIFF OMITTED] 72280A.112


                                 
[GRAPHIC] [TIFF OMITTED] 72280A.116

[GRAPHIC] [TIFF OMITTED] 72280A.117

[GRAPHIC] [TIFF OMITTED] 72280A.118

[GRAPHIC] [TIFF OMITTED] 72280A.119

[GRAPHIC] [TIFF OMITTED] 72280A.120

[GRAPHIC] [TIFF OMITTED] 72280A.121


                                 
[GRAPHIC] [TIFF OMITTED] 72280A.122

[GRAPHIC] [TIFF OMITTED] 72280A.123

[GRAPHIC] [TIFF OMITTED] 72280A.124



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.125

[GRAPHIC] [TIFF OMITTED] 72280A.126

[GRAPHIC] [TIFF OMITTED] 72280A.127


                                 
[GRAPHIC] [TIFF OMITTED] 72280A.128





                                 
[GRAPHIC] [TIFF OMITTED] 72280A.129

[GRAPHIC] [TIFF OMITTED] 72280A.130

[GRAPHIC] [TIFF OMITTED] 72280A.131

[GRAPHIC] [TIFF OMITTED] 72280A.132

[GRAPHIC] [TIFF OMITTED] 72280A.133


                                 
[GRAPHIC] [TIFF OMITTED] 72280A.134

[GRAPHIC] [TIFF OMITTED] 72280A.135

[GRAPHIC] [TIFF OMITTED] 72280A.136

[GRAPHIC] [TIFF OMITTED] 72280A.137

[GRAPHIC] [TIFF OMITTED] 72280A.138

[GRAPHIC] [TIFF OMITTED] 72280A.139



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.140



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.141

[GRAPHIC] [TIFF OMITTED] 72280A.142

[GRAPHIC] [TIFF OMITTED] 72280A.143

[GRAPHIC] [TIFF OMITTED] 72280A.144



                                 
[GRAPHIC] [TIFF OMITTED] 72280A.145

[GRAPHIC] [TIFF OMITTED] 72280A.146

[GRAPHIC] [TIFF OMITTED] 72280A.147

[GRAPHIC] [TIFF OMITTED] 72280A.148

[GRAPHIC] [TIFF OMITTED] 72280A.149


                                 
[GRAPHIC] [TIFF OMITTED] 72280A.150

[GRAPHIC] [TIFF OMITTED] 72280A.151

                                 
