[Senate Hearing 117-850]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 117-850

                        TOXIC CONSERVATORSHIPS:
                          THE NEED FOR REFORM

=======================================================================

                                HEARING

                               BEFORE THE

                    SUBCOMMITTEE ON THE CONSTITUTION

                                 OF THE

                       COMMITTEE ON THE JUDICIARY
                          UNITED STATES SENATE

                    ONE HUNDRED SEVENTEENTH CONGRESS

                             FIRST SESSION

                               __________

                           SEPTEMBER 28, 2021

                               __________

                          Serial No. J-117-37

                               __________

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                       COMMITTEE ON THE JUDICIARY

                   RICHARD J. DURBIN, Illinois, Chair
PATRICK J. LEAHY, Vermont            CHARLES E. GRASSLEY, Iowa, Ranking 
DIANNE FEINSTEIN, California             Member
SHELDON WHITEHOUSE, Rhode Island     LINDSEY O. GRAHAM, South Carolina
AMY KLOBUCHAR, Minnesota             JOHN CORNYN, Texas
CHRISTOPHER A. COONS, Delaware       MICHAEL S. LEE, Utah
RICHARD BLUMENTHAL, Connecticut      TED CRUZ, Texas
MAZIE K. HIRONO, Hawaii              BEN SASSE, Nebraska
CORY A. BOOKER, New Jersey           JOSH HAWLEY, Missouri
ALEX PADILLA, California             TOM COTTON, Arkansas
JON OSSOFF, Georgia                  JOHN KENNEDY, Louisiana
                                     THOM TILLIS, North Carolina
                                     MARSHA BLACKBURN, Tennessee
             Joseph Zogby, Chief Counsel and Staff Director
      Kolan L. Davis, Republican Chief Counsel and Staff Director

    
                    SUBCOMMITTEE ON THE CONSTITUTION

                 RICHARD BLUMENTHAL, Connecticut, Chair
DIANNE FEINSTEIN, California         TED CRUZ, Texas, Ranking Member
SHELDON WHITEHOUSE, Rhode Island     JOHN CORNYN, Texas
JON OSSOFF, Georgia                  MIKE LEE, Utah
                                     BEN SASSE, Nebraska

                 David Stoopler, Majority Chief Counsel
                  Andrew Davis, Minority Chief Counsel
                            
                            
                            C O N T E N T S

                              ----------                              

                     SEPTEMBER 28, 2021, 2:37 P.M.

                    STATEMENTS OF COMMITTEE MEMBERS

                                                                   Page

Blumenthal, Hon. Richard, a U.S. Senator from the State of 
  Connecticut....................................................     1
Cruz, Hon. Ted, a U.S. Senator from the State of Texas...........     3

                               WITNESSES

Witness List.....................................................    35
Brennan-Krohn, Zoe, staff attorney, American Civil Liberties 
  Union Disability Rights Program, San Francisco, California.....     9
    prepared statement...........................................    36
Clouse, Nicholas, warehouse forklift operator, Huntington, 
  Indiana........................................................     7
    prepared statement...........................................    57
Kripke, Clarissa, health sciences clinical professor, director, 
  Office of Developmental Primary Care, Univeristy of California, 
  San Francisco, California......................................    12
    prepared statement...........................................    62
Slayton, David, vice president, Court Consulting Services, 
  National Center for State Courts, Bellevue, Texas..............    14
    prepared statement...........................................    69
Whitlatch, Morgan, legal director, Quality Trust for Individuals 
  with Disabilities, Washington, DC..............................    10
    prepared statement...........................................    76

                               QUESTIONS

Questions submitted to Dr. Clarissa Kripke by:
    Senator Feinstein............................................    84

                                ANSWERS

Responses of Dr. Clarissa Kripke to questions submitted by:
    Senator Feinstein............................................    85

                MISCELLANEOUS SUBMISSIONS FOR THE RECORD

American Bar Association (ABA) Letter, September 27, 2021........    87
American Bar Association Resolution, August 3,4, 2020............    88
April Statement on Guardianship, October 5, 2021.................   166
Anderson, Jordan from Auburndale, Wisconsin, Written Testimony...   256
Apple, Richard, Richmond County, New York,, written testimony, 
  September 28, 2021.............................................   205
ASAN Recommendations for Federal Legislation on Alternatives to 
  Guardianship, September 10, 2021...............................   132
Association of Programs for Rural Independent Living (APRIL) 
  Statement, October 5, 2021.....................................   166
Autisic Self Advocacy Network (ASAN) Informational Document......   107
Autistic Self Advocay Network, Written Testimony, October 5, 2021   129
Bentley, Cindy, Milwaukee, WI, Rights Restoration................   254
Bergum, Marie from California, Written Testimony, September 28, 
  2021...........................................................   167
Bulwinkle, Kalei, Written Testimony..............................   175
Carlotto, Cory from Pittsfield, Massachusetts, Written Testimony, 
  September 28, 2021.............................................   187
Carmany, Sarah from Kalamazoo, MI, Written Testimony.............   199
Center for Public Representation (CPR) Testimony, October 4, 2021   136
Center for Public Representation (CPR) Recommendations for 
  Federal Legislation to Reduce the Reliance on Guardianship.....   141
Dias, Michael, Written Testimony.................................   127
Disability Rights, Texas Statement, October 5, 2021..............   227
Disability Rights Network, Written Testimony, September 28, 2021.   148
Disability Rights North Carolina, Written Testimony, October 5, 
  2021...........................................................   201
Disability Rights, Wisconsin, Written Testimony, October 4, 2021.   263
Dryer, James from Detroit, MI, Written Testimony.................   198
Exceptional Rights Advocacy, LLC, Testimony of Suzanne Bennett 
  Francisco, October 5, 2021.....................................   171
Hatch, Jenny from Virginia, Written Testimony, September 28, 2021   253
Indiana Disability Rights Statement, October 5, 2021.............   183
Jin, Tim from California, Written Testimony, September 28, 2021..   169
King, Susie J. and Ryan H., Written Testimony, October 2, 2021...   173
Kratch, Jennifer, Restoration of Voter Rights....................   255
Massachusetts Developmental Disabilities Council, Written October 
  4, 2021........................................................   188
Max, Libra, Written Testimony, October 5, 2021...................   104
National Disability Rights Network, Written Testimony, September 
  28, 2021.......................................................   148
Partners of Georgia's Developmental Disabilities Network, 
  Statement of October 5, 2021...................................   179
Platt, Kathie Northrup, Statement, October 4, 2021...............   243
SDMNY Restoration................................................   207
South Carolina's Statement on Guardianship Reform................   210
TASH Letter, October 5, 2021.....................................   164
Tennessee Guardianship/Conservator Information Document..........   212
Terry, Robert, Written Testimony, Rochester, New York, September 
  28, 2021.......................................................   206
Toxic Conservatorships, Written Testimony, October 5, 2021.......   128
Vermillion, Victoria, mother of Kalei Bulwinkle, Written 
  Testimony......................................................   177
Willard, Diana from Joplin, MO, Written Testimony................   200
Wisconsin Board for People with Developmental Disabilties 
  (Wisconsin BPDD) Testimony, September 27, 2021.................   257
Zimmerman, Jordyn, Written Testimony, September 28, 2021.........   208

 
                        TOXIC CONSERVATORSHIPS:
                          THE NEED FOR REFORM

                              ----------                              


                      TUESDAY, SEPTEMBER 28, 2021

                               United States Senate
                   Subcommittee on The Constitution
                                 Committee on the Judiciary
                                                    Washington, DC.
    The Subcommittee met, pursuant to notice, at 2:37 p.m., in 
Room 226, Dirksen Senate Office Building, Hon. Richard 
Blumenthal, Chair of the Subcommittee, presiding.
    Present: Senators Blumenthal [presiding], Ossoff, and Cruz.

         OPENING STATEMENT OF HON. RICHARD BLUMENTHAL,

          A U.S. SENATOR FROM THE STATE OF CONNECTICUT

    Chair Blumenthal. Toxic Conservatorships: The Need for 
Reform. It is a topic of critical importance. I'm glad that we 
have such expert witnesses here with us to talk about 
conservatorships, or, as they are known in many States, 
guardianships. These legal arrangements wrest control from a 
person of their own life and livelihood and give it to a court-
appointed conservator or guardian.
    Individuals under conservatorship lose their power to make 
legal decisions on their own, financial decisions, and 
sometimes even personal decisions. In some cases, individuals 
may be truly unable to care for themselves at all, and 
guardianships may be appropriate. In too many instances, they 
don't. Through a lack of fundamental due process, people who 
could care for themselves with some additional support become 
entrapped in a conservatorship.
    In recent months, one conservatorship has captivated the 
world, revealing the deeply restrictive nature of these 
arrangements, and just how easily they can be abused, and how 
difficult it can be to escape. Of course, I'm talking about 
Britney Spears. We know Britney Spears as an undeniable music 
superstar. She has been and will always be a cultural icon, but 
we can't forget she's also a mother, she's a human being, she's 
worthy of dignity and respect. For the last 13 years, she has 
lived under a conservatorship.
    That arrangement was initiated out of a concern for her 
mental health, but, as has been reported and Ms. Spears herself 
has said, it appears to have been commandeered by those who 
were supposed to have her best interests in mind but are now 
alleged to have effectively held her captive and profited 
handsomely at the expense.
    The allegations are, in fact, chilling. Ms. Spears was 
isolated, kept away from family, friends, and her broader 
support network. She was financially exploited. She was spied 
upon, including with a listening device in her own bedroom. She 
was medicated against her will, including being forced to be on 
birth control. She was even denied access to her own children.
    Yet, through it all, and in the public eye, she released 
four albums, headlined a $130 million global tour, and starred 
in her own Las Vegas show. She was far from being incapacitated 
as people ordinarily would know it.
    For years, we now know, Ms. Spears tried to end her 
conservatorship, only to have her wishes ignored by the court. 
Sadly, we'll hear this afternoon that Britney Spears' story is 
not a singular or isolated incident. The only thing, the only 
thing, that's unusual about Britney Spears' story is that 
people are paying attention to it. That's the only thing that 
makes it different from many other conservatorships around the 
country.
    In fact, there are many others whose names, whose lives, 
whose stories we often don't know. They've experienced, and 
they continue to experience, this conservatorship trap. Under 
State laws, conservatorships are supposed to be a protection of 
last resort for those who are truly incapacitated. We're 
learning, and many of us have seen in our own legal experience, 
that frequently they're imposed with little or no notice at 
hearings that last only minutes and have no consideration of 
other options.
    Many people under conservatorship arrangements aren't able 
to hire their own lawyer and instead are left to a court-
appointed lawyer. Conservatees might not fully understand how 
restrictive these arrangements can be, and so they may not 
object before it happens. Many don't realize, or perhaps 
they're never made aware of the fact, that these 
conservatorships are difficult to change in any way, let alone 
end.
    This issue is a big deal for a lot of people. In 2016, the 
National Center for State Courts estimated that across the 
United States, there were more than 1.3 million adults and at 
least $50 billion in assets under conservatorship. In my own 
State of Connecticut, there are about 20,000 conservatorships 
right now. There are about 4,000 new ones every year. These 
numbers likely only represent a snapshot, since most States 
don't have a centralized data collection system on 
conservatorships, and the data that they do collect varies from 
State to State.
    This afternoon, we're going to hear from witnesses who will 
tell us about their experience living with and fighting against 
conservatorships. They will also tell us about how there are 
other options, better alternatives to these legal 
straitjackets. They may be available to people who need that 
kind of extra support but can do without a conservatorship.
    One alternative that is gaining increased prominence is 
supported decisionmaking. I look forward to hearing from our 
witnesses about that alternative and others, particularly when 
they've had some success.
    Finally, let me just say Ms. Spears' next public hearing in 
her own conservatorship battle is literally tomorrow. While she 
continues to fight to make her own decisions and to live her 
own life, we can and we must fight for reforms in these legal 
straitjackets, arrangements that are potentially abusive and 
certainly a disservice to many people that are under them.
    That's why I'm so pleased that the Ranking Member and I 
could come together to hold this hearing. I hope we can use 
this afternoon to have a productive discussion, find common 
ground to identify ways to promote transparency, 
accountability, and overall reform of the current 
conservatorship system.
    Let me just pose a couple of initial thoughts to get your 
reactions to them. First, it's clear we need to strengthen the 
State systems to ensure alternatives to this kind of legal 
straitjacket, and make sure they're considered first. Make sure 
civil rights are protected, and where a conservatorship is 
imposed, that it is effectively overseen and supervised to 
avoid abuse.
    Second, Federal agencies, including the Department of 
Health and Human Services and the Department of Justice, can 
promote the sharing of information and best practices across 
jurisdictional lines, as well as improve data collection. I 
know that our colleagues, Senator Casey and Warren, have begun 
considering that data issue.
    Third, we need to consider strengthening Federal 
enforcement. The Department of Justice Civil Rights Division 
already has a Disability Rights Section, but it has not 
historically focused on deprivation of rights and abuses in 
conservatorships. Maybe we need that kind of effective 
oversight and intervention.
    The scale and scope of abuses that we're seeing now demand 
a response, and those countless people who are victims of abuse 
because of conservatorships need protection. I look forward to 
hearing from you and working with my colleagues as we explore 
these alternatives, and I want to take a moment to extend a 
particular welcome today to Nick Clouse, who's here to testify 
today about his own experience. We welcome you here. Your 
living as a subject of a conservatorship, and your fight to 
have your rights restored are an example of courage, and we 
welcome your--again, demonstrating that courage to share your 
story with us today. Thank you very much for being here, and 
I'll now turn to the Ranking Member, Senator Cruz.

              OPENING STATEMENT OF HON. TED CRUZ,

             A U.S. SENATOR FROM THE STATE OF TEXAS

    Senator Cruz. Thank you, Mr. Chairman, and let me start by 
thanking you for holding this hearing. I think this is an 
important topic, and I welcome each of the witnesses for 
attending and testifying.
    Every so often, an individual case of injustice captures 
the Nation's attention. It opens our eyes to issues that are by 
no means unique to that individual, but that previously had 
remained hidden from the public. That's what has happened with 
Britney Spears, one of the most iconic American pop stars of 
all time, who has been under a California conservatorship since 
2008. The case has captured the attention of the world, and I 
myself count myself emphatically in the Free Britney camp and 
have been so vocally for some time.
    For more than a decade, someone else, Britney Spears' 
court-appointed conservator, has made all of the critical 
decisions in her life, even though she's a grown woman who has 
grown to incredible heights in her career. Even though she's a 
mother, to this day, she can't make basic decisions about her 
own life, her own career, her own health, her own finances.
    Ms. Spears has fought this conservatorship, but it seems 
that at each critical juncture, the legal system has been 
designed not for her benefit, but to trample on her rights. 
When the conservatorship was first put into place, for example, 
Ms. Spears tried to hire a lawyer to fight the conservatorship, 
but the California court threw out her lawyer, saying 
effectively, no, she's not capable of hiring a lawyer. The 
court based its reasoning on a purported medical report, but 
because she didn't have a lawyer or a copy of the medical 
report, she didn't have someone on her side to challenge that 
determination. As a result, she was placed in a 
conservatorship, even though from outside appearances, there 
was nothing to indicate the lack of competence that should have 
been required to justify a conservatorship for one week, much 
less for 13 years.
    Ms. Spears has made stunning allegations that, because she 
is subject to the whims of the conservatorship, doctors force 
her to have an IUD, a birth control device, against her wishes 
because her conservator didn't want her to have children. That 
is not somebody else's choice to make. That is grotesque. This 
type of forced prevention of childbearing and forced 
sterilization, sadly it goes on all the time in oppressive 
nations and Communist countries like China. Sadly, it has an 
ugly, ugly history here in the United States. But few of us 
would have believed it was happening in America today.
    Given recent changes, including Ms. Spears' first ever 
public testimony in her conservatorship case, Britney may be 
able to get out of the conservatorship as early as tomorrow, 
and if so, that will be a great victory for justice.
    For so many people across the country, their 
conservatorships are likely to continue under the same system 
or a similar system as the one that has trampled on Ms. Spears' 
rights for over a decade.
    There are approximately 1.3 million adult conservatorship 
cases in the United States, with an estimated $50 billion in 
assets controlled by those conservatorships. Sadly, in at least 
some of the instances, it's all about the money and control of 
the assets in that conservatorship.
    Conservatorships can have their place. They can be 
necessary; they can be appropriate. They can help protect 
individuals who cannot care for themselves, whether because 
they suffer from a severe developmental or intellectual 
disability or an injury or an illness, such as dementia. We 
rarely hear about conservatorships where honest and 
conscientious courts and conservators act in the best interest 
of the individual and are responsible and responsive to 
changing circumstances. Those cases don't make the news.
    Unfortunately, conservatorships can also be abused. They 
can deprive individuals of rights, of liberties, of 
opportunities to make decisions that most of us take for 
granted. We must be vigilant when individuals suffer from 
diminished capacity. We protect and we respect their personal 
liberty and their fundamental rights, including the right to 
make decisions that many of us disagree with or find 
irresponsible. That's important here. The question is not 
whether you agree with every decision the individual might 
make. The question is whether they have such diminished 
capacity that the law has to step in and protect them.
    That means ensuring that conservatorship process affords 
full due process protections, from basic steps, like providing 
adequate notice of proceedings to ensuring that individuals 
have the right to counsel, and that the burden of proof rests 
on the State.
    I talked a minute ago about the beginning of Britney 
Spears' case. For the court to throw out her lawyer based on a 
secret medical report that she couldn't access, the lawyer 
couldn't access, and couldn't be charged, is something straight 
out of Kafka. It's not right. It's not how our legal system is 
meant to operate. Instead, we need to ensure that there is 
ample opportunity for people to contest conservatorships. We're 
fortunate today that one of our witnesses will be able to speak 
firsthand about how difficult it can be to terminate a 
conservatorship and to have his rights returned to him.
    It also means seriously considering alternatives to 
conservatorships and whether individuals have reasonable access 
to those alternatives. That could include supported 
decisionmaking, which allows an impacted individual to form a 
support network of people they know and trust and consult this 
group in the course of making their decisions. It could also 
include the use of representative payees, special needs trusts, 
joint bank accounts, power of attorney agreements, and advanced 
healthcare directives.
    As a general matter, State law and State courts create and 
manage conservatorships. That means that most meaningful reform 
should be driven primarily by the States, not the Federal 
Government. The States are equipped to drive reform in this 
area. My home State of Texas, for example, has been at the 
forefront of reforming conservatorships to protect individual 
rights. In 2015, Texas was the first State to codify supported 
decisionmaking as an alternative to legal guardianship. Texas 
also implemented several other fundamental reforms, including a 
Bill of Rights for wards and increased court oversight of 
existing conservatorships. Other States, thankfully, have 
followed Texas' lead and have instituted similar reforms.
    The Britney Spears conservatorship has brought to light 
real issues with conservatorship law that should shock every 
American. If the conservatorship process can deprive someone 
like Ms. Spears, someone with immense celebrity, immense 
wealth, immense material success, of her fundamental liberties, 
then what chance does the average American have? Because of 
what has happened to Ms. Spears under California laws and 
California courts, States all across the country should be 
asking themselves what they can do in this area to make sure 
that they aren't falling into the same traps and that they are 
instead protecting the interests and the rights of every one of 
their citizens.
    I look forward to the discussion today. In today's 
polarized environment, there are many issues on which the two 
parties disagree. There are many issues on which Chairman 
Blumenthal and I disagree, and I'm sure we will again in the 
future. But I'm glad we have found a topic on which there is 
very significant common ground, and I know both of us look 
forward to learning more from our witnesses today. Thank you.
    Chair Blumenthal. Thanks, Senator Cruz, and I will second 
the remark that he just made. Perhaps somewhat unusually, we 
are in complete agreement that this problem needs to be 
addressed, and we are also in agreement on the witnesses that 
we invited today, who are really impressive for all you've 
seen, all you've done. We welcome you.
    Before I introduce you for your testimony, I'd like to do a 
short video which will really demonstrate the fact that Mr. 
Clouse and Ms. Spears are among far too many people who have 
been impacted by unnecessary or abusive guardianships. We're 
going to have this video played now, if we may, and they're not 
sworn under oath, but we want to give you some idea of people 
from all over the country, literally, who couldn't be here and 
we couldn't have because of time constraints, but will give you 
a flavor of what their experience has been. We can do that 
video now.
    [Video played.]
    Chair Blumenthal. Thanks to all who participated in that 
video, and thanks to our staff who recorded it. I'll now 
introduce the witnesses. Nick Clouse is 28 years old, and he is 
from Huntington, Indiana, where he lives with his wife, 
Chelsea, and their four-year-old daughter. Mr. Clouse works 
full time as a warehouse forklift operator. He previously 
worked as a welder and biotechnician.
    In a 2011 automobile accident just before his senior year 
of high school, Mr. Clouse experienced a traumatic brain injury 
that led to his parents obtaining a guardianship over his 
person and estate. Mr. Clouse began working to end the 
guardianship and restore his rights in 2017, and he was finally 
able to do so just last month, but only after he secured his 
own independent counsel with Indiana Disability Rights, and he 
engaged in lengthy legal proceedings.
    Mr. Clouse, welcome, and you can correct any parts of your 
story that I've gotten wrong so far when you testify.
    Zoe Brennan-Krohn is a staff attorney at the ACLU 
Disability Rights Program. At the ACLU, she has advocated for 
conservatorship reform and the necessary protection of disabled 
people's civil rights and civil liberties. She has also worked 
extensively to help people with disabilities and used supported 
decision-making to expand public understanding of the risks and 
civil liberties harms of guardianship and the potential of 
alternatives.
    Ms. Brennan-Krohn has represented and advised people 
seeking to get out of guardianships. She has drafted and argued 
an amicus brief in Britney Spears' conservatorship case, and 
she's joined more than 20 disability and civil rights 
organizations. That brief has been joined by that many. She's 
highlighted the disability rights and constitutional aspects of 
the Spears case and urged the court to allow Ms. Spears to 
select a lawyer of her own choice, which she now has been able 
to do.
    Morgan Whitlatch. Morgan Whitlatch is the legal director of 
Quality Trust for Individuals with Disabilities. She also 
serves as the lead project director of the National Resource 
Center for Supported Decision-Making. Ms. Whitlatch has devoted 
her legal career to working with, and on behalf of, people with 
disabilities and older adults in matters involving capacity and 
guardianship alternatives.
    Ms. Whitlatch's extensive experience also includes co-
representing an adult with Down Syndrome in fighting for her 
right to engage in supported decision-making, as well as 
representing the first senior in DC to have her guardianship 
terminated in favor of supported decision-making.
    Dr. Clarissa Kripke is a clinical professor of family and 
community medicine at the University of California, San 
Francisco School of Medicine. She has a comprehensive 
background in primary care of transition-age youth and adults 
with developmental disability. She directs the Office of 
Developmental Primary Care, a program dedicated to improving 
outcomes for people with developmental disabilities across the 
lifespan, with an emphasis on adolescents and adults.
    David Slayton. He is the vice president of Court Consulting 
Services at the National Center for State Courts. Mr. Slayton 
is a former State court administrator for Texas, as well as the 
past president of the National Association for Court 
Management. Mr. Slayton has been employed by the judicial 
branch in various roles since 1998. He has previously provided 
testimony to the Senate Special Committee on Aging regarding 
the exploitation of older Americans by guardians in Texas.
    He's helped lead guardianship reform efforts in Texas, 
including supported decision-making, and he's an advocate for 
increased regulation of guardians by the State.
    If you would all now rise, I will administer the oath.
    [Witnesses are sworn in.]
    Chair Blumenthal. Thank you. Mr. Clouse, we'll begin with 
you.

                 STATEMENT OF NICHOLAS CLOUSE,

        WAREHOUSE FORKLIFT OPERATOR, HUNTINGTON, INDIANA

    Mr. Clouse. Thank you for having me. Good afternoon. My 
name is Nicholas Clouse, and I want to thank Senator Blumenthal 
and Senator Cruz for the invitation for having me.
    In July 2011, I was in a terrible car accident that left me 
with a traumatic brain injury, headaches and memory loss. 
Thinking that someone might take advantage of me if I were to 
receive a large sum of money from a personal injury lawsuit, my 
parents convinced me to--they should become my legal guardians. 
They told me to sign a piece of paper and that would let them 
take care of the lawsuit, so I could focus on recovery.
    There was no discussion about what this would mean, or what 
rights would be taken away from me, or whether something less 
restrictive might have met my needs at the time. I do not know 
whether a hearing was even held before a judge signed the order 
that essentially turned me back into a child in the eyes of the 
law.
    In September 2014, I was blessed to meet my now wife, 
Chelsea, and the mother of my child. The symptoms from the TBI 
that had improved by that point, but my vision of the future 
was clouded by constantly being told that I could not--of what 
I could not do. When Chelsea looked at me, she saw who I could 
become. On Valentine's Day, 2016, I asked Chelsea to marry me. 
I was excited to start a family, but my parents were extremely 
hesitant to allow me to work, let alone let me get married.
    Two months later, we found out Chelsea was pregnant. This 
was unquestionably the best thing that ever happened to me, and 
I'm not sure my parents would have ever allowed me to get a job 
or move out if that hadn't happened.
    With a baby on the way, by that summer, I had moved into 
Chelsea's house, which we still live in now. I worked full time 
as a biotechnician at a nearby ethanol production facility. In 
December 2016, I became a father, but in many ways, my parents 
still treated me like a child. I had no control over my 
paychecks I earned and had to get permission from my stepfather 
to buy diapers and formula for my daughter.
    My parents wholly controlled my earnings and refused to 
even provide the contact information for the trustee overseeing 
my settlement funds. I could make medical appointments for my 
daughter, but I was not allowed to make them for myself. My 
parents allowed--finally allowed Chelsea and I to get married 
in May 2018. Before and after the wedding, I regularly asked my 
parents about ending the guardianship. They eventually arranged 
a meeting between their lawyer and my wife and I--or my soon-
to-be wife and I, and basically told us that the guardianship 
was unable to go away, and they had the power to fight us if we 
ever contested it.
    When we heard about Indiana Disability Rights, our State's 
protection and advocacy organization, and reached out to them 
in spring of 2020, I did not know what to expect. Without 
having any control over my finances, I had no way to hire my 
own attorney. If the IDR had not accepted my case and offered 
to represent me free of charge, I'm not sure if I ever would 
have had a path out.
    When the petition to terminate guardianship was filed 
January 2021, my parents refused to even consider agreeing to 
it until I first underwent a psychological evaluation. When the 
evaluation was finally released, the psychologist chosen by my 
parents determined that I had no need for legal guardianship.
    Sorry, I'm out of time. Do you want me to finish, or?
    Chair Blumenthal. You can take a couple minutes more.
    Mr. Clouse. Thank you. After everything I've been through, 
I'm incredibly lucky to be in my current position. I have a 
wife who is my best friend and biggest supporter, and a healthy 
child who is the light of my life, close friends and family, 
and a successful career.
    If it was this difficult for me to be released from 
unnecessary guardianship, I cannot imagine what it is like for 
those who are not as privileged. We need better protections to 
keep this from happening, and we need more attorneys like 
Justin and the Indiana Disability Rights to enforce those 
protections.
    Thank you again, Senator Blumenthal and Senator Cruz, and 
the rest of the Committee, for having me.
    [The prepared statement of Mr. Clouse appears as a 
submission for the record.]
    Chair Blumenthal. Thank you. Thank you for that excellent 
testimony. I understand your wife may be with you today?
    Mr. Clouse. Yes.
    Chair Blumenthal. You can acknowledge her, if you wish. 
Thank you. We're going to go now to Ms. Brennan-Krohn.

        STATEMENT OF ZOE BRENNAN-KROHN, STAFF ATTORNEY,

        AMERICAN CIVIL LIBERTIES UNION DISABILITY RIGHTS

               PROGRAM, SAN FRANCISCO, CALIFORNIA

    Ms. Brennan-Krohn. Thank you. Tough act to follow. Chair 
Blumenthal, Ranking Member Cruz, thank you for inviting me to 
speak today and for convening this hearing. My name is Zoe 
Brennan-Krohn, and I'm a staff attorney at the ACLU Disability 
Rights Program.
    Britney Spears' high profile case battle to get out of 
conservatorship was the first time many people in this country 
had heard of conservatorship or guardianship, and I'll use 
those terms interchangeably, but guardianship is, as we've 
heard, a widespread phenomenon. It's estimated that courts have 
stripped 1.3 million people of their civil liberties.
    The most unusual thing about Britney's case is the 
attention it's getting. Spears' experience of getting into a 
guardianship in a period of crisis, then facing a Kafka-esque 
maze to try to get out, is astonishingly routine.
    Guardianship is fundamentally a civil liberties issue. It 
is the Government stripping away a person's civil liberties and 
autonomy. It has been called a civil death. If you are under 
guardianship, you cannot decide where you will live, who you 
will spend time with, who you won't spend time with, how you 
will earn and spend your money, or what medical care you will 
get.
    Guardianship is fundamentally a disability civil liberties 
issue because only people with disabilities, or perceived to 
have disabilities, risk this type of civil death. People with 
intellectual and developmental disabilities, psychiatric 
disabilities, and older adults who age into disabilities like 
dementia, are at particularly high risk for guardianship.
    Guardianship is a major invasion by the Government into a 
person's life. It's dangerous to be in a guardianship. The 
enormous power of the guardian, coupled with the lack of 
transparency and oversight, is a recipe for abuse, neglect, 
exploitation, and harm.
    I want to be clear that many individuals involved in 
guardianships are acting with the utmost good faith and 
integrity. Systemically, guardianship is dangerous. Yet the 
harms and risks of guardianships stand in alarming contrast 
with the routine approach that courts take in establishing 
them. Guardianships are often established as a matter of 
course, with few of the due process protections that should 
accompany such an invasive loss of rights. Notice, opportunity 
to be heard, access to counsel, and mechanisms to end the 
guardianship are often entirely absent or, at best, inadequate 
and inaccessible.
    Many people have lost their civil liberties without having 
any idea of the gravity or permanence of guardianship.
    We need to change this system. We need to strengthen due 
process protections and treat guardianship like the invasive 
last resort that it is. We need to make changes beyond 
guardianship toward a world in which far fewer people are in 
guardianship and far more people with disabilities live self-
directed, autonomous lives with the supports they need and want 
to do so.
    Part of this requires changing our conception of 
independence and recognizing that none of us live truly 
independent lives. We are all interdependent. We all rely on 
others: friends, lawyers, staffers, reminder apps on our phones 
to live our lives. People with disabilities use these same 
types of supports. Some people have more significant support 
needs, but they also have preferences, and wishes, and values.
    We need to strengthen and encourage structures in our 
society through which people with disabilities, like those 
without disabilities, can get the supports they need and want 
to live their lives consistent with their own preferences, all 
while retaining their core civil liberties. Supported decision-
making is a key model for this, and my colleague, Morgan 
Whitlatch, will give you more information on this.
    While guardianships are primarily established by State law, 
Congress can and should change this system. First, Congress 
should set up guard rails to strengthen the due process 
protections within guardianship. It should recognize and remedy 
the constitutional violations that pervade guardianship 
proceedings. This includes identifying and enforcing minimum 
due process rights, including a right to accessible notice, a 
right to counsel, meaningful participation in a hearing, and 
meaningful access to counsel and support to dissolve existing 
guardianships. Because guardianships have existed in the 
shadows for so long, Congress should also fund data collection 
so that we know who is under a guardianship, public education 
on the risks of guardianship, and monitoring of State court 
systems to reduce their use of guardianship.
    Congress should also take steps to strengthen the world of 
voluntary support and self-direction outside of guardianship. 
Congress can and should recognize and advocate for alternatives 
like supported decision-making, which allow people with 
disabilities to get the supports they need without Government 
intervention or losing their civil liberties.
    Congress should encourage the Department of Justice and 
other agencies to formally identify supported decision-making 
as a reasonable modification and a less restrictive alternative 
that must be tried before guardianship.
    Thank you, Senators, for your interest in this issue and 
for holding this hearing, and I look forward to your questions.
    [The prepared statement of Ms. Brennan-Krohn appears as a 
submission for the record.]
    Chair Blumenthal. Thank you very much. Morgan Whitlatch. I 
think you may have to turn on your microphone.

         STATEMENT OF MORGAN WHITLATCH, LEGAL DIRECTOR,

        QUALITY TRUST FOR INDIVIDUALS WITH DISABILITIES,

                         WASHINGTON, DC

    Ms. Whitlatch. I did. Okay, thank you. Thank you for that. 
Thank you for the invitation. My name's Morgan Whitlatch, and 
I'm the legal director of Quality Trust for Individuals with 
Disabilities. Quality Trust is an independent advocacy and 
monitoring organization based in Washington, DC. We also lead 
the National Resource Center for Supported Decision-Making, 
which was created in 2014, and is dedicated to advancing the 
decision-making rights of people with disabilities and older 
adults, through training, technical assistance, research, and 
promotion of promising practices.
    Through Quality Trust Jenny Hatch Justice Project, we 
provide legal advocacy and representation to assist people with 
disabilities, including older adults, to access less 
restrictive options for decisionmaking support, and to go to 
court to prevent, limit, or end overly restrictive 
guardianship. We serve under cooperative agreements with the 
National Council on Disability that resulted in two reports 
analyzing the impact of guardianship and alternatives through 
the lens of the U.S. Constitution and federal civil rights laws 
and policies. Those NCD reports offer findings on 
recommendations to the administration and Congress that inform 
this Subcommittee's deliberations.
    We also were involved with the 4th National Guardianship 
Summit that resulted in recommendations in May of this year.
    Britney Spears' story has shined a national and very public 
spotlight on the problems of guardianship and conservatorship 
systems. In our almost two decades of working with and on 
behalf of many people impacted by these systems, Quality Trust 
knows that Ms. Spears is not alone. We have seen the kinds of 
rights restrictions she reported experiencing imposed upon 
adults of all ages, with different diagnoses or disabilities, 
life experiences, and socio-economic backgrounds. We know 
through direct experience how hard it can be to get a 
guardianship terminated.
    Today, so far, you've heard directly from Nicholas Clouse 
from Indiana, and those wonderful videos that you showed. There 
are so many more stories from people around the country, and 
it's those testimonials that are the most important and the 
most compelling reason why reform must happen now.
    My colleague, Zoe Brennan-Krohn, rightfully emphasized the 
need for federally supported reform to address serious due 
process problems within guardianship and conservatorship 
systems. In my almost 20 years of legal practice, I have seen 
such problems firsthand over and over and over again, and they 
pose significant and untenable challenges to people facing 
guardianship petitions and those seeking redress from the court 
or having those rights restored.
    We welcome Federal scrutiny of guardianship and 
conservatorship systems, and we thank this Subcommittee for its 
leadership in this conversation. In responding to this strong 
public outcry for change, we urge you not to concentrate 
reforms solely on efforts to make guardianship and 
conservatorship systems better or improved. More attention and 
investment must also be placed on reforms that promote the 
avoidance of guardianship and conservatorship in the first 
place, as they are overutilized legal tools that have the 
effect of removing legal personhood from an individual.
    This means taking concrete and decisive steps to dismantle 
the many pipelines to overbroad and undue guardianship, 
including those linked to schools, healthcare providers, adult 
protective services, and the legal profession, among others. It 
means promoting less restrictive and voluntary options such as 
supported decisionmaking that advances self-determination and 
does not involve the courts.
    Supported decision-making occurs when people use their 
family, friends, and others they trust to help them understand 
the choices they face so that they can make their own 
decisions. It allows a person to retain their legal rights 
while getting support from those they choose and trust.
    SDM is already part of the mainstream disability rights 
discourse, and it's gaining traction for older adults, as well. 
It's been the subject of pilot State legislation and laws, and 
court decisions terminating or refusing to order guardianship. 
It also has been recognized and endorsed by influential 
associations, national organizations, and Federal agencies.
    More work is needed to ensure that its promise and practice 
actually reaches more people with disabilities and older adults 
across the country. Promotion, expansion, and advancement of 
supported decision-making should be considered one of the ways 
in which to address the problems identified here today.
    My written testimony includes additional recommendations, 
but I'll focus my limited time on some key ones. In addition to 
the ones Ms. Brennan-Krohn referenced, Congress should urge the 
Department of Justice to issue guidance, recognizing and 
clarifying that supported decision-making is a reasonable 
modification that public entities and accommodations must 
recognize in order to avoid disability discrimination under the 
Americans with Disabilities Act. Congress should ensure that 
already federally funded programs, such as those associated 
with the Individual and Disability Education Act, are not 
pipelines to overbroad and undue guardianship by funding 
technical assistance and demonstration projects on using 
alternatives to guardianship and promoting training.
    Congress should support programs that fund grants to 
promote States adopting and implementing supported decision-
making. Congress should support qualified legal service 
programs independent from the courts and steeped in civil 
rights advocacy experience to provide legal assistance to 
individuals like Nick, who are trying to avoid guardianship or 
have their rights restored. Congress should also fund 
incentives to support the State collection of data that Zoe 
spoke of.
    We also would encourage the continued funding of the 
National Resource Center for Supported Decision-Making to 
coordinate national practices.
    Thank you, Senators, for your interest in this issue, and I 
look forward to answering your questions.
    [The prepared statement of Ms. Whitlatch appears as a 
submission for the record.]
    Chair Blumenthal. Thank you so much. Dr. Kripke.

         STATEMENT OF CLARISSA KRIPKE, HEALTH SCIENCES

            CLINICAL PROFESSOR, DIRECTOR, OFFICE OF

           DEVELOPMENTAL PRIMARY CARE; UNIVERSITY OF

             CALIFORNIA, SAN FRANCISCO, CALIFORNIA

    Dr. Kripke. Senator Blumenthal and Senator Cruz and Members 
of the Subcommittee, it's a great honor to be here to talk to 
you about conservatorships. People with disabilities have the 
same freedom to pursue their dreams as other Americans. My name 
is Dr. Clarissa Kripke, and I'm the Director of Developmental 
Primary Care in the Department of Family and Community Medicine 
at the University of California, San Francisco.
    I provide primary medical care to some of the Bay Area's 
most medically fragile and behaviorally complex residents. I'm 
the vice chair of Communication First, a national nonprofit 
that is focused on the rights and interests of people who 
cannot speak, or whose speech is unreliable for communication.
    I also have personal experience as a parent. My daughter 
cannot speak and requires help with all of her activities of 
daily living, but she can direct her life and her healthcare.
    One of the most common reasons that people cite for 
pursuing conservatorships is that they fear that their loved 
one won't be able to access medical care or that family members 
won't be able to provide support. In my experience, number one, 
conservatorship is not necessary to deliver high quality 
medical care. This is true even for people with the most 
complex disabilities. Two, conservatorships don't make people 
safer or prevent abuse. In fact, people with disabilities, as 
well as conservators, can get trapped in bad situations. Three, 
supported decision-making simply works better than 
conservatorship. Conservatorships encourage healthcare 
providers to focus on who is authorized to make a medical 
decision instead of on the patient.
    In one case I had, a patient came to me with her sister, 
who thought something was wrong, but didn't know what. I 
suggested that we try to ask. I put her in front of a keyboard 
to see if she would type. I asked her to show me how she says 
yes. I showed her some anatomy charts to see if she would 
point. Finally, I said, ``Touch hurt,'' and she took my hand 
and put it on her right upper abdomen, and based on that, I got 
an ultrasound, and I was able to diagnose gallstones. That 
would have been a very difficult diagnosis to make if I had 
assumed she had nothing to say.
    Conservatorships don't protect people with disabilities 
from abuse. Choice and control over one's life is what makes 
someone safe. Most conservators are trying to do right by 
someone they care about, however, statistics show that most 
abusers are family members, caregivers, or other just trusted 
people who a judge might appoint as a conservator.
    I had a patient who we suspected who was being abused by 
their conservator. Because of the conservator's privileged 
role, Adult Protective Services closed the case quickly due to 
the lack of proof. Had my patient not been conserved, her 
distress and our suspicion would have been enough to help her 
end visits with the conservator and to help her choose someone 
else to provide her support.
    Conservators can also get trapped in a role they no longer 
can fulfill as they age or their circumstances change. I've had 
to try to contact conservators who reside in nursing homes or 
out of the country, who are only available during business 
hours, or who are actively avoiding being called. Delays in 
making medical decisions can be life-threatening.
    Supported decision-making simply works better. Supported 
decision-making is a process where people with disabilities can 
name trusted supporters to assist them with communicating, 
accessing health services, and making decisions in implementing 
their healthcare plan.
    It improves communication. It's flexible and respectful. 
Instead of relying on a single person, it enables a person with 
disabilities to receive support from family members or 
supporters whose knowledge, skills, and availability are best 
matched to the situation.
    Despite our best efforts, there are times when we can't 
clearly determine a patient's preference. In those situations, 
we invite the people in the patient's life to help make 
decisions as a team. At the meeting, we address the patient 
directly, regardless of whether we think they're understanding, 
and even if they aren't responding. Patients often surprise us 
with their understanding and their insight. Also, the 
healthcare team behaves more respectfully when speaking 
directly to a patient.
    Overall, for the delivery of healthcare, involving courts 
doesn't add value. It doesn't prevent abuse. Supported 
healthcare decision-making gives people with disabilities 
control and flexibility they need to make medical decisions in 
a timely fashion so they can get the best care.
    Thank you, and I'm happy to answer any questions.
    [The prepared statement of Dr. Kripke appears as a 
submission for the record.]
    Chair Blumenthal. Thank you. Mr. Slayton.

          STATEMENT OF DAVID SLAYTON, VICE PRESIDENT,

           COURT CONSULTING SERVICES, NATIONAL CENTER

               FOR STATE COURTS, BELLEVUE, TEXAS

    Mr. Slayton. Chairman Blumenthal, Ranking Member Cruz, and 
distinguished Members of the Subcommittee, my name is David 
Slayton, and I'm the vice president of Court Consulting 
Services at the National Center for State Courts, and former 
State court administrator for the courts in Texas.
    Conservatorship, or guardianship, as it's called in Texas, 
is a proceeding in which a court, after the determination by a 
judge that an individual lacks mental capacity to make 
decisions independently, appoints a guardian to make decisions 
and oversee the affairs of the individual.
    It is the most restrictive form of oversight a court can 
place on an individual outside of the criminal context. 
Sometimes referred to as a civil death penalty, guardianship is 
meant to protect individuals from abuse or exploitation by 
others due to the limitation in their mental capacity. In most 
guardianships, this is exactly what happens. Family members or 
friends protect their loved ones with intense attention to the 
needs of the individual.
    Sometimes, this doesn't happen. Sometimes, the individual 
is placed in a restrictive facility and rarely visited. 
Sometimes, the individual regains mental capacity but remains 
subject to the guardianship for years. Sometimes, a trusted 
guardian begins to appeal for the individual's hard-earned 
estate. Sometimes, the individual dies under the guardianship, 
but the court is not made aware of that for years.
    This isn't supposed to happen. Courts are charged with 
closely scrutinizing guardianship proceedings beginning at the 
point where guardianship is sought and lasting throughout the 
guardianship. The courts do this by requiring certain 
information prior to establishing guardianships, regular 
reports from the guardian about the well-being of the 
individual, and detailed accounting reports about the revenue 
and expenditures from the estate. Without adequate resources or 
staff, judges are asked to serve in the role of judge, social 
worker, law enforcement, and accountant.
    In a review of over 55,000 cases in Texas, the Judiciary 
found over 5,000 individuals who were deceased without the 
guardian alerting the judge. Forty percent of those cases 
lacked current required reports, meaning that the court was 
uninformed about the well-being of the individual, or how the 
guardian was managing the finances of the estate.
    The Texas Judiciary has been working diligently to address 
these issues by providing resources to courts and making 
statutory changes. Some of those include requiring attorneys 
and judges in guardianship cases to explore all alternatives to 
guardianship prior to establishing one, to consider the ability 
of the individual to make her--his or her own decisions about 
residence, to provide for a regular review of the necessity of 
continuing the guardianship, and to create a new alternative 
guardianship called supported decisionmaking, the first State 
in the country to do so statutorily.
    Texas also enacted a robust Bill of Rights for individuals 
under guardianship. After finding that 98 percent of all issues 
were in guardianships where family members or friends were the 
guardian, Texas now requires family members and friends to 
register as guardians with the State, have a criminal 
background check, and participate in online training about 
their responsibilities as guardians prior to their appointment.
    Texas has also appropriated $2.5 million and provided 28 
new employees to assist judges statewide in monitoring 
guardianships and reviewing annual accountings for financial 
fraud or exploitation.
    Last, just this year, Texas continued its reforms by 
providing additional authority to have specialized guardianship 
courts and increasing the ability to access financial records 
from financial institutions.
    Texas is not alone in its desire to improve monitoring of 
guardianship cases. The Conference of Chief Justices and 
Conference of State Court Administrators have worked 
collectively to make improvements in this area for over a 
decade, making recommendations for reform, and endorsing at 
least 14 resolutions in the past 10 years.
    Unfortunately, most State courts lack the resources to put 
these kinds of reforms into action. While States and State 
courts are responsible for the oversight of the guardianship 
system, there are several areas where the Federal Government 
could assist. First, social security representative payees are 
not always the same person as a court-appointed guardian, 
meaning that the State court is responsible for monitoring the 
activities of one person who may be managing a portion of the 
individual's estate or well-being, while another, not under the 
State's court's control, is managing some other portion of the 
individual's finances. Even when the State court removes a bad 
actor for cause, SSA does not honor State court orders and 
limits the exchange of information between the State courts and 
Social Security Administration.
    Second, bad actors who run into issues establishing a 
guardianship in one State may choose to move the individual and 
seek a guardianship at another State. Or an individual found by 
one State court to have abused or exploited an individual in 
one State may move his practice to another State, only to be 
court-appointed again without knowledge of the issues of any 
other State. Giving congressional consent to an interstate 
compact creating a national registry of guardianships and 
procedures is critically important.
    Last, the Federal Government could assist the State courts 
by enacting an Adult Guardianship Court Improvement Program, 
provide targeted funding to each state's highest court, similar 
to the extremely successful Child Welfare Court Improvement 
Program, to improve data collection analysis, evaluation, 
development of best practices and training, and collaboration 
to improve the management and outcome of guardianships.
    I look forward to answering any questions from the Members 
of the Committee. Thank you very much.
    [The prepared statement of Mr. Slayton appears as a 
submission for the record.]
    Chair Blumenthal. Thanks so much to all of you. We're going 
to begin the first round of questioning. A vote has been 
called, so I'm going to begin with a round of questioning. I'm 
going to go vote while Senator Cruz then asks a round of 
questioning. If he finishes and I'm not back, we'll take a 
short recess, and I'll be back to follow-up with more questions 
because your testimony has really raised a series of very 
profound and important issues that we should discuss and make a 
record of.
    I will just tell you, a lot is going on in the U.S. Senate 
today and this week, so I apologize that some of my colleagues 
are not here. They may appear, but there are all kinds of 
meetings and floor proceedings going on, but have no doubt that 
what you say will be read. It will be not only part of the 
record, but I'm hoping that it will give rise to action in the 
form of proposed legislation, and that it will be bipartisan 
because we have that kind of consensus here on the need for 
some action.
    Let me begin with you, Mr. Clouse, if I may. You have 
worked consistently since your injury--pretty much 
consistently, as a warehouse and forklift operator, a welder, a 
biotechnician. You've clearly been productive, and you also 
have some income as a result of the personal injury case that 
was brought on your behalf. Let me ask you if you could expand 
a little bit more on how the guardianship affected your 
financial decisions or your inability to make decisions even 
after you were married. You made reference earlier to the 
guardian or conservator having to approve your purchases of 
diapers and baby formula. Maybe if you could expand on the 
impact on your financial decisions of the guardian or 
conservator.
    Mr. Clouse. Yes, it went as far down to as asking--I had to 
ask for money every time I wanted to make a purchase. It could 
be all the way down to just wanting some gas so I could get to 
work. I'd say more times than not, any of my requests, they'd 
be denied.
    Chair Blumenthal. Those requests actually were denied when 
you asked to spend money?
    Mr. Clouse. Yes, and my wife--well, she was my fiancee at 
the time, and after she became my wife, she had to pick up 
those costs.
    Chair Blumenthal. She was paying for your expenses because 
the conservator or guardian was denying permission?
    Mr. Clouse. Yes.
    Chair Blumenthal. How did that make you feel?
    Mr. Clouse. Worthless, to be honest.
    Chair Blumenthal. I can understand that.
    Mr. Clouse. Absolutely worthless. Work all those hours and 
not be able to bring that money home to my family.
    Chair Blumenthal. You were earning that money, but you were 
denied the right to decide how to use it.
    Mr. Clouse. Yes.
    Chair Blumenthal. Ms. Brennan-Krohn, that is pretty 
striking for me, and I wonder if I could ask you whether that 
happens a lot, whether it's common. You know, I'm struck by the 
fact that those paychecks from Mr. Clouse's job paid the legal 
fees, among other things, for the parents' lawyer, and that 
strikes me as a pretty stark conflict of interest among many 
other indignities that it caused Mr. Clouse. Maybe you could 
talk a little bit about that facet.
    Ms. Brennan-Krohn. Certainly. We don't have, as many people 
have said, we don't have comprehensive data on anything in this 
sphere. We don't even know how many people are in 
guardianships, so we don't know statistically how often this 
happens, but the guardian or a conservator having control over 
the person's money is a very routine part of guardianships and 
conservatorships, and how that control is exercised is very 
much in the hands of the guardian, who can make choices out of 
spite, who can make choices because they think the person 
should be prioritizing other things. They think they're going 
to the gas station--whether the gas is more expensive. It can 
be anything, and so these types of experiences where people 
are--you know, it's really creating dependence where it's not 
necessary, and that has a real harm on people financially, but 
also emotionally, as well. I mean, the way Nick has testified 
as to how this affected him is very compelling and, 
unfortunately, is not an unusual situation.
    Chair Blumenthal. That one word, worthless, is haunting.
    Ms. Brennan-Krohn. Yes, and the idea of guardianship is 
supposed to be this sort of benevolent way to help people, and 
it is so far from that in so many cases. In cases where there's 
outright abuse, and even in cases where there isn't, the 
message that you're being told, that you're a child and your 
choices and your wishes don't matter, is an extraordinarily 
compelling message to give to people and very, very harmful.
    Chair Blumenthal. In some ways, it's worse than treating 
someone as a child because a parent--I'm a parent of four 
children--tries to really develop decision-making and 
encourages someone to make a decision, even though you may 
think as a parent it's not the best thing in the world to do. 
The idea of decision-making is that you learn from mistakes. 
That's sometimes how we learn best. At least, speaking for 
myself, I made a lot of mistakes.
    Ms. Brennan-Krohn. Yes, exactly. It's--you're exactly 
right. It's treating capacity and what you can do as completely 
static, that what you can do right now is all you will ever be 
able to do, which is particularly devastating for people who 
get into guardianships right when they turn 18, people with 
intellectual and developmental disabilities. It's called the 
school to guardianship pipeline.
    To be told when you're 18--you know, I think many of us can 
think back of when we were 18, and if a judge looked at, you 
know, how things were going, they might have had some 
questions, right? We sort of learn from those and things 
improve, we hope, for many of us in some ways. That is presumed 
to be not what's going to happen for people with disabilities, 
and that's simply not true. People with disabilities learn. 
They might learn differently, but they learn. You're told that 
if you can't count back from 100 by sevens, you can't do 
anything in your life. Like, unless your job is counting back 
from 100 by sevens, that is not a core life skill.
    Chair Blumenthal. I have a lot of other questions. I'm 
going to pursue them. I'm going to turn to Senator Cruz. He has 
another commitment, I believe, a floor speech, at 4 p.m., so 
I'm going to let him do his questions. I'm going to vote. I'll 
be right back.
    Senator Cruz. [Presiding.] Thank you, Mr. Chairman, and I 
will say, Ms. Brennan-Krohn, I very much hope that Senators are 
not expected to count backward from 100 by sevens.
    [Laughter.]
    Senator Cruz. I was told there would be no math in this 
hearing, Mr. Chairman, and I'm really concerned that you've 
changed the rules on us.
    Chair Blumenthal. I share that hope.
    Senator Cruz. The Senate would be a much smaller body if 
that were a test required for continued membership in it. Thank 
you to each of you for your participation in this hearing. 
Thank you for addressing these important questions.
    You know, as I listen to these policy issues, I'm reminded 
of 22 years ago. 1999, I was a young policy staffer on the 
George W. Bush campaign when he ran for President, and that's 
where I met my wife, Heidi, and one of the policy 
responsibilities I had was focusing on disability issues. I 
worked with then-Governor Bush, I worked with a number of 
disability rights advocates in designing what became one of 
President Bush's first initiatives, the New Freedom Initiative, 
which we hammered out on a laptop with bullet points, and it 
ultimately got enacted into law. The guiding principle was that 
individuals with disability, like everybody else, want to be 
free, want the maximum autonomy possible, want the maximum 
independence possible.
    Not every person is capable of total autonomy, depending on 
their circumstances and their physical condition, but to the 
extent possible, everyone deserves to have the right to control 
their own life, whether we agree or disagree with the decisions 
that person might make. I think this discussion, all of the 
witnesses powerfully highlighted that.
    I'd like to start my questioning, Mr. Clouse, with you. I 
want to thank you for being here. This is a--this can be a 
daunting place, and telling your story, I'm sure, is not easy. 
I want to thank you for your courage because right now, there 
are people at home watching this on television who may, like 
you, have faced a traumatic brain injury, or some other 
accident where they're struggling with the repercussions of it. 
There may be people in conservatorships who themselves are 
wanting to be free of those constraints, and your courage, I 
believe, is inspiring people at home right now. I appreciate 
that.
    You know, I have to say, sitting and listening to you and 
hearing your story, you're a grown man. You're gainfully 
employed, you've had a series of impressive and difficult jobs. 
You're a husband, you're a father, and yet, you lacked, for a 
significant period of time, the legal right to make decisions 
in your own life. I think for a lot of people, that's an 
astonishing state of affairs.
    Could you share with this Committee, while you were under 
the guardianship, what kind of decisions and activities were 
you not allowed to make on your own, and how has life been 
different after it was terminated?
    Mr. Clouse. First off, I talked about my financial. I 
wasn't allowed to make financial decisions or medical 
decisions. I wasn't allowed to decide who I was allowed to hang 
out with or where I was allowed to go. I was pretty much 
treated as a child in every aspect, even down to what phone 
plan I could be on if I wanted to--if I had a phone.
    Since then, I mean, it's life changing. I'm--first thing I 
did was I was able to go fill up my tank of gas and not have to 
worry about my card getting declined even before swiping it. I 
haven't done anything irresponsible or anything since I had the 
guardianship terminated, but I'm just living like a normal 
adult, and I'm watching my--finally watching my hard-earned 
paychecks come in, and it actually feels amazing. I lost that 
sense of worthlessness on August 24th.
    Senator Cruz. Thank you for sharing that. As someone who 
just--Heidi and I just celebrated our 20th anniversary, and I 
will say, if what you said is right, that you haven't done 
anything irresponsible, you may be the only husband on planet 
Earth who can make that claim.
    [Laughter.]
    I certainly would not be so bold as to say such a thing. 
Ms. Whitlatch, we've heard about the constraints that Mr. 
Clouse faced. We have also heard about the constraints that 
Britney Spears is facing. In your experience, how unusual are 
these constraints for people facing conservatorships, and how 
does Mr. Clouse's story or Britney Spears' story compare with 
the other clients you work with?
    Ms. Whitlatch. I wish I could say they're uncommon stories. 
They're not uncommon stories. I've been practicing in this area 
for around 20 years, and I've seen many people in the same kind 
of situations, having their health controlled or 
psychological--not having control over their psychiatric 
treatment, not having control over their money, not having 
access to a cell phone. Not even their own, you know, ID. Not 
even being able to travel.
    All of these other kinds of issues are very common, and 
they affect people with all kinds of disabilities, all ages. I 
wish I could say that these were outliers in some way, but 
they're not. Unfortunately, guardianship can be very 
restrictive, and there's not the same kind of court oversight 
that people think there's going to be in a guardianship. Like, 
you think you go to court, you think you're going to have a 
court that's going to be overseeing this. It's very uneven kind 
of court oversight. Unfortunately, I hear very--a lot of 
stories like this.
    Senator Cruz. Thank you. That Ms. Brennan-Cohn--Krohn, 
sorry, Ms. Whitlatch just talked about the lack of court 
oversight. You also talked about the lack of due process 
protections. In your judgment, what due process protections are 
lacking, and how can they be improved?
    Ms. Brennan-Krohn. In a lot of cases, they're almost all 
lacking. There's really--the whole way down the line, 
guardianships are launched, and implemented, and imposed as 
though they're very routine, sort of pro forma circumstances, 
which they're really not.
    It varies State by State, like, the precise process, but if 
you start at the base of, you know, notice, that notice in some 
States can be by mail. It could be by mail to the address where 
your future guardian is also living. Even if you get the mail, 
you know, it's a legalese document. You check this box, which, 
you know, means that this other thing has happened, and then 
that box is checked. Like, people don't meaningfully understand 
what is going to happen.
    Often the people seeking the guardianship don't either. You 
know, take even one step before notice, that people start this 
process thinking that it's just what they have to do because 
that's what a school told them, or that's what a family member 
told them, that's what they'd heard. Then hearings themselves 
are often--they can be seconds long, these hearings. You might 
not be at the hearing. You--your voice might not be heard. 
There might be no opportunity for you to say, ``Hey, I don't 
want this,'' or, ``I don't like this,'' or, ``I don't 
understand what's happening here.''
    Senator Cruz. Let me ask both Ms. Brennan-Krohn and Ms. 
Whitlatch, I talked about the facts in Britney Spears' case, 
that she was denied a lawyer initially, based on a medical 
report that she wasn't allowed to see and the lawyer wasn't 
allowed to see. How common or uncommon is something like that?
    Ms. Whitlatch. No, I would say that I have seen that kind 
of circumstance before where it's difficult for the--the person 
is not given access to medical evidence that's being used 
against them. I can't say how common it is, but I have 
experienced that within my career. I think what it takes is 
really, really zealous advocacy, but in circumstances like 
you're describing, that kind of zealous advocacy of express 
wishes to be able to challenge the evidence that's being used 
against you, did not appear to be present. I think it really 
highlights the fact that there's a deep importance in having 
access to attorneys of your choice and attorneys that are 
advocating for your express wishes. Because that's another big 
issue that I see, where attorneys are advocating perhaps for 
what they believe is in the person's best interest. Or these 
systems can be very insular, and, you know, there can--very 
insular systems that aren't really based on a kind of civil 
rights focus.
    Those can also be challenges when it comes to guardianship 
proceedings.
    Senator Cruz. Dr. Kripke, you spoke some about alternatives 
to conservatorship. Can you describe the efficacy of some of 
the alternative mechanisms to deal with someone with diminished 
capacity?
    Dr. Kripke. Yes, so we work as a team to deliver 
healthcare. Healthcare for people with developmental 
disabilities is interdisciplinary, team-based care, and it 
includes not just the healthcare providers, but the people who 
provide direct support to the patients, whether that means 
personal assistance in their lives, day program, staff, job 
coaches. Everyone who is in their life has a part in 
recognizing when someone is ill, alerting a doctor when there's 
a problem, and when--and then supporting that person to make 
the right decision for them, and then in carrying out the plan.
    We work together as a team to make healthcare happen, and 
when you have a conservator, it's only one person, and that one 
person may or may not be a part of the day-to-day life of the 
person we're talking about, and they may make decisions that 
the team as a whole doesn't feel that they can implement, and 
doesn't feel bought into along with the patient.
    Our--we work together collaboratively, and work toward 
consensus instead of putting decision-making in a single 
person's--in a single person's hands.
    Senator Cruz. Okay. Mr. Slayton, you were able to 
participate in the process in Texas to identify the need for 
State guardianship reform and oversee its implementation. Can 
you walk us through some of these State law reforms and how 
they helped create greater due process protections?
    Mr. Slayton. Sure, Senator. You know, I think one of the 
things that we started doing was just having a conversation 
with people under guardianship, guardianship advocates, and 
really begin identifying some, and I think, as has been noted 
here, one of the keys is, you know, changing from maybe what's 
been described as a pro forma system to full guardianship is 
the last alternative that's explored.
    One of the things Texas law now requires is that every 
individual that's filing for guardianship, every attorney 
involved, all the judges must consider all alternatives to 
guardianship, all supports and services that could be offered, 
and then has to find--the judge has to find by clear and 
convincing evidence that there are no other alternatives to a 
guardianship. It's, you know, obviously a high burden of proof 
to get there.
    Then, you know, one of the things I was thinking about with 
Mr. Clouse's situation, one of the things we did in Texas was 
it is often that someone with a traumatic brain injury or 
someone with--that has a stroke, often times get placed under 
guardianships, but their conditions improve. One of the 
requirements under Texas law is that when the doctor is doing 
the evaluation for guardianship, they have to state in their 
report what the likelihood of improvement is and what timeframe 
that's expected. The judge is required to re-evaluate the need 
for continuing guardianship in that timeframe and continuously 
doing stuff. It puts in place these due process protections to 
where this is continuously occurring.
    The last thing I would say--there's a whole series of 
reforms that we could go through here and spend some time, and 
I've submitted that with my written testimony, but another big 
one is really this idea of making sure that family members and 
friends are adequately informed about what their responsibility 
is and isn't. What we have found, as is noted in someone's 
previous testimony, that the majority of the issues come up 
when it's a family member or friend guardian who--let's just 
give them the benefit of the doubt--maybe they don't know what 
their responsibilities are or what the limits are, and what 
other options they have. For instance, supported decision-
making or other types of alternatives. Making sure they're 
aware of those situations before they're in a guardianship is 
really important.
    I guess I would just say that--I said last thing, but one 
more last thing--is this idea of the Bill of Rights. It was a 
really important development in Texas to really put in writing, 
these are a person under guardianship's rights, and that must 
be provided to them. Every year, in conjunction with the report 
given the court, the person under guardianship has to be 
provided with their Bill of Rights again so that they 
understand they have the right to go petition the court to have 
the guardianship terminated.
    I think those are all things that have been really 
important and I think have made a difference in our State.
    Senator Cruz. That's helpful. Let me, if I could, Mr. 
Slayton, ask you a hypothetical----
    Mr. Slayton. Sure.
    Senator Cruz [continuing]. Which is Britney Spears' 
conservatorship is under California law, but given the reforms 
in Texas, had a similar fact pattern arisen with those reforms, 
how do you think the case might have proceeded differently?
    Mr. Slayton. You know, I think first of all--let's just 
pretend that the reforms were in place before the guardianship 
was established--you know, I think there would have been a 
pretty significant mountain to climb about whether or not there 
weren't other alternatives that would have been more 
appropriate.
    Or maybe there could have been limitations in the 
guardianship. Could, you know, there have been supports and 
services put in place that would have satisfied the concerns of 
the court or the medical professionals looking at her 
situation? I think one thing is, right off the bat, you know, 
the question would be whether or not the guardianship would 
have ever been established in the first place.
    I think the second thing is that there would have been, 
under these reforms, a more natural review of the need to 
continue the guardianship. You know, I think there's been 
difficulty in getting that looked at, and in Texas, I think 
under these reforms, it would have been of a more natural 
approach. The judge would have to again find by clear and 
convincing evidence that the need for the guardianship 
continues and that there are no lease--less restrictive 
alternatives that would be more appropriate.
    Senator Cruz. Okay. That is very helpful. The time is 
expiring on the vote on the floor, and actually Chairman 
Blumenthal is back, so I'm going to run and vote and hand the 
gavel back to the Chairman, but I want to thank each of the 
witnesses for your testimony, particularly you, Mr. Clouse. 
Your story is powerful, and to your wife, thank you for being 
here as well.
    Chair Blumenthal. [Presiding.] Thank you, Senator Cruz. 
You're going to miss my counting down by sevens, Senator.
    [Laughter.]
    Senator Cruz. Admit it. You practiced.
    [Laughter.]
    Chair Blumenthal. I didn't practice, and I'm not going to 
do it. Again, thank you for your patience. I'd like to continue 
kind of the topic that I was beginning to explore with--Ms. 
Brennan-Cohn--Ms. Brennan-Krohn. Let me ask all of you. On the 
issue of financial exploitation, which I think affects not only 
people with disabilities, but older people, maybe I can just 
ask all of you--and, Mr. Clouse, you're free to talk about this 
issue as well from your personal experience. Financial 
exploitation. How common is it? Maybe you can give us some 
examples.
    Mr. Slayton. I'm happy to take a start here. In Texas, 
we've looked at 55,000 guardianship cases, and I want to pause 
here and say the vast majority are by people who are trying to 
protect their loved ones and they're doing the right thing. As 
was pointed out, the ones we hear about are the bad actors, but 
there are a lot where the situation is good.
    I have--you know, we in Texas have found over and over 
again financial exploitation occurring. I've got a whole list 
of examples. You know, just looking here at, you know, 
basically, we had a guardian whose license was revoked by the 
State oversight board after a financial audit revealed that the 
guardian had removed over $10,000 in cash withdrawals without 
any--they just were going to the ATM and withdrawing money from 
the person's estate.
    We have a situation where a whirlpool tub was installed in 
the guardian's home using the proceeds from the estate of the 
individual under guardianship.
    Over and over again, examples. You know, it's kind of like 
uncovering a terrible onion, and every time you peel back the 
layers of that, it gets worse and worse. I would say it is more 
frequent than we would like to--than we would be comfortable 
with. Even if it's not extensive, certainly there's plenty of 
it going on and something that should be a concern for all of 
us.
    Chair Blumenthal. Ms. Brennan-Krohn.
    Ms. Brennan-Krohn. Yes, I absolutely agree that it happens. 
We don't have the data because we don't have any data, but the 
system is set up so that it's very easy to exploit someone 
financially. I also want to say that there's sort of--there's 
outright financial abuse and fraud, and that happens 
undoubtedly and is very significant.
    There are also this very large number of cases, and perhaps 
Mr. Clouse's case, part of it was sort of in this area where 
maybe it's not outright fraud, but you have someone who's 
controlling the person's money for no particular reason, or 
certainly not for any reason that's based on, ``This is what I 
think we need to do to help you learn how to manage your own 
money.''
    I think that shouldn't be underestimated, that even in 
cases where, you know, you're not putting a hot tub in your 
house at your ward's expense, you can still be causing a lot of 
financial harm by not supporting the person's development and 
by mistreating them. The psychological harm of being told you 
have to ask to fill up your car with gas, even if all that 
money is still sitting there and waiting for you, is a really 
big harm. I think that's extremely widespread.
    Chair Blumenthal. Thank you. Ms. Kripke. Dr. Kripke.
    Dr. Kripke. I think that financial exploitation is, 
unfortunately, very common. In conservatorship, you have to go 
to a judge to make a change. In supported decision-making, 
however, if you don't like how somebody is managing your money 
or managing you with money, you can change the authorized 
representative on your CalABLE account. You can change your 
representative payee who is helping you with your bank account 
for your SSI checks. You can change trustees who are not 
acting.
    Trustees--conservators often perform well and then develop 
disabilities themselves as they age, and may not be able to 
provide the same level of support. In supported decision-
making, you can switch them out. In a conservatorship, it's a 
much more complicated process.
    Chair Blumenthal. Other comments? Ms. Whitlatch.
    Ms. Whitlatch. Yes, and I just also want to say, you know, 
I think when we talk about the legal tools, be it powers of 
attorney, be it guardianship, be it conservatorship, be it 
representative payeeship, all of those tools can be misused by 
bad actors. It really is about how do you create the support 
networks necessary to kind of create the checks and balances. 
With guardianship and conservatorship, you know, that's--the 
guardian and conservator is wielding a great power that doesn't 
have the kind of oversight frequently that's required to. It's 
why you can see some really egregious cases of financial abuse.
    Chair Blumenthal. Mr. Clouse, I'd like to ask you to tell 
us how your conservatorship ended, how you managed to end it.
    Mr. Clouse. I was able to get in contact with the IDR and 
they set me up with Justin Shaw, and he immediately knew my 
case was special, and saw that there was no need for a 
guardianship just by talking to me and hearing about my 
experiences and my jobs I've held.
    My guardians, they often made me jump through hoops to get 
things done. They set up--they wanted me to go see a 
psychologist and have a neuropsych evaluation done, and after a 
few weeks of going back and forth, we finally gave in and went 
to the one that they wanted me to go to. Without a doubt, the 
psychologist said that there's no need for guardianship in her 
report. Shortly after that, we were able to get the 
guardianship terminated.
    Chair Blumenthal. Was there opposition to terminating it? 
Did they try to keep it in place?
    Mr. Clouse. They opposed it from the very beginning when we 
gave them notice that we were challenging the guardianship, and 
they drug their feet the whole way.
    Chair Blumenthal. How long did it take to terminate it?
    Mr. Clouse. Roughly a year and a half after we had served 
them.
    Chair Blumenthal. I invite others to comment on the process 
of terminating guardianships. How often it occurs that someone 
who is subject to guardianship wishes to terminate it.
    Ms. Whitlatch. It is very difficult to terminate a 
guardianship or conservatorship. It is very resource intensive. 
Speaking as someone who has represented people in restoration 
of rights proceedings as an attorney for a nonprofit, it is 
very resource intensive to be able to provide that kind of 
service.
    People can face all sorts of barriers. Some people don't 
know what attorney to go to, to go to Indiana Disability 
Rights. Some can't access attorney in that way. Some attorneys 
refuse to represent people who are under guardianship because 
they have concerns that they're not ethically able to do that 
for someone who's been adjudicated incapacitated because of 
certain kinds of ethics rules.
    You know, I think a really big issue is, you know, having 
to face paying for actually the opposing party's--not only your 
own legal fees, but the opposing party's legal fees. There's a 
system that's set up where it's the person who's under 
guardianship, in some States, that have to pay those kinds of 
fees.
    I think getting the kinds of evaluations that Nick is 
talking about can be very difficult, too. There's a tendency 
when we talk about, you know quote, ``incapacitated,'' unquote 
for, you know, traditional kind of psychological evaluations to 
really link that to diagnoses and IQs, and some diagnoses are 
static diagnoses, you know? They're not going--you know, you're 
not going to not have an intellectual disability, for example. 
Nick has a history of a traumatic brain injury. Those are 
things that are--exist. Some people have certain kinds of IQ 
scores.
    These evaluations don't really look at the options for less 
restrictive alternatives to guardianship or really the 
functional abilities of someone to either direct their own life 
or direct someone else to manage their own lives.
    It can be--you know, I've been involved, for example, Jenny 
Hatch you heard today. That was--when Quality Trust got 
involved, you know, we were preparing for months. We had a host 
of experts that we had to retain to show that a person with 
Down Syndrome didn't need to be under permanent plenary 
guardianship. We had six days of trial, very kind of resource 
intensive. It can be very difficult determining a guardianship, 
and it's why we really need to rethink how people get under 
guardianship in the first place. It's much easier to establish 
a guardianship than it is to terminate one.
    Chair Blumenthal. Other comments.
    Ms. Brennan-Krohn. I'll just echo what Morgan said. It's 
the current--the strength of the current to get into 
guardianship is just as strong against you when you're trying 
to get out, and that people have no idea what they're getting 
into when they start it. Then, the barriers, like, even very 
practical barriers, if you're in a guardianship, like these new 
revelations about Britney Spears' surveillance. If you're in a 
guardianship where you can't have a phone, that's very common. 
I mean, the complex surveillance of Britney Spears is probably 
less common. It must have been wildly expensive.
    Very common to not be able to have a phone, not be able to 
have access to the internet, not have access to your money, so 
you're going to hitchhike into town and hope you find your way 
to a lawyer who can do this? Like, just the very practical 
barriers to having any idea of how to try to challenge a 
guardianship are insurmountable.
    Then there's a real reluctance by courts to dissolve 
guardianships. Often, in cases where the fact of a disability 
remains, which is true for most disabilities, that they are 
lifelong realities, and you will have a disability for your 
whole life in many cases. That doesn't mean that you won't 
change, and you won't learn, and you won't develop, and you 
won't have preferences, and you won't be able to uses supports 
to help you. I think judges very often think of it as, ``Oh, 
well, this person, they still have an intellectual disability. 
What could be different here?'' That's a really mistaken view.
    Chair Blumenthal. Mr. Slayton.
    Mr. Slayton. One thing I would say, this just points to the 
need for sort of a systemic, procedural way for this to occur. 
As I mentioned when you were out of the room taking the vote a 
minute ago, that one of the things we did in Texas was, as part 
of the--if someone is--let's say they have a traumatic brain 
injury or a stroke, and they are placed under guardianship, 
that there is a process that those automatically get reviewed 
to see if there is a continuing need where there is clear and 
convincing evidence that no other alternative is appropriate 
other than guardianship.
    Then in the annual reports, the well-being reports that are 
required to be filed every year, that there is a discussion and 
a review about whether or not there is a need to continue that 
guardianship. It has to be part of the process. If it's just 
sort of, well, maybe at some point this will get brought up by 
someone who, as was pointed, hitchhikes to and successfully 
finds a lawyer who's willing to take on their case, that's 
probably less likely to be effective in really providing a 
robust way to review these. I think it points to the need for 
States to really look at ways to make that happen.
    Dr. Kripke. In 20 years of practice, I've never had anyone 
who was able to get out of a conservatorship, but I have had 
conservators die or develop their own disabilities, and I don't 
know what happens legally. I think the conservatorships just 
sort of fade away and we carry on as if it hadn't existed.
    I've also had conservators who no longer wanted to serve in 
that role because they developed other caregiver 
responsibilities for other family members and developed their 
own disabilities, and were denied by the court to get out of 
serving in that role, which is a very intense and difficult 
role if you--making all of the decisions for another human 
being, doing all their finances, doing all their healthcare, 
especially for somebody with a complex disability is not a 
small job. I think people don't realize what they're getting 
into, a lifelong commitment to doing that.
    Chair Blumenthal. For the kind of evaluation that was done 
in Mr. Clouse's case by a psychologist, I assume that 
psychologist is hired by the conservator or the court. I don't 
know what happened in your case, but I would expect that a 
psychologist who's hired by one side or the other, whether it's 
the court or the conservator would have a probably some 
professional interest in upholding the status quo. I don't know 
whether any of you have had enough experience. I would guess 
that Mr. Clouse's experience may be somewhat unusual where the 
psychologist concluded you were able to do without it.
    Mr. Clouse. Actually, we had to financially split the 
psychologist. I was willing to pay up front for it so I could 
obtain my freedom because I had no doubt that the psychologist 
would find me competent. My parents were reluctant to.
    Chair Blumenthal. You had to pay for the services of the 
psychologist yourself?
    Mr. Clouse. Yes, sir.
    Ms. Whitlatch. I would say, you know, it really does vary 
upon State systems as to how those kind of evaluations occur. 
I've worked in different jurisdictions. In some courts, they 
have like a panel of, you know, examiners, or evaluators that 
are used to evaluate people who raise questions of capacity or 
regaining of capacity are raised.
    I've also worked in jurisdictions where, you know, it's 
about agreement between the parties as to who would be served 
as the evaluator, and frequently in the cases I'm involved in 
where I'm working on restoration, you know, we, as the 
nonprofit go out and want to seek--we want to pick who our 
evaluator is. We want to make sure that they have the right 
values and think about disability in the way that we think 
about disability, that look beyond IQ scores or diagnosis and 
really looked to the kind of core of a person and the 
alternatives to guardianship.
    You can bet, you know, that latter kind of approach can be 
a very kind of costly approach, but an effective approach to 
trying to seek restoration.
    Chair Blumenthal. Let me ask you, Ms. Brennan-Krohn, when 
an individual in conservatorship becomes aware of their right 
to seek full restoration--and the rest of you, as well--or they 
push for less restrictive alternatives, what is the most likely 
outcome? The reason I raise it is the standard--I think Mr. 
Slayton may have mentioned it--is clear and convincing evidence 
to overturn a conservatorship. In other words, the burden of 
proof is a pretty high threshold. Clear and convincing evidence 
is not proof beyond a reasonable doubt, but it's a lot more 
difficult than a preponderance of the evidence.
    Maybe you could talk about, in effect, how the legal deck 
is stacked against someone seeking restoration or less 
restrictive alternatives.
    Ms. Brennan-Krohn. Sure, yes. Like I said, the people who 
get themselves into court are a very small minority of people 
who probably want to get out, who shouldn't be there. By the 
time you get to court, it varies by State, and some States 
don't have clear standards at all about what the burden is and 
how the burden works for restoration proceedings.
    In some States, the burden is on the person under 
guardianship to demonstrate that they no longer need a 
guardianship, which is incredibly difficult in term--you know, 
the guardianship itself may be really self-fulfilling. It may 
be that you still don't know how to balance your checkbook 
because nobody's told you how to balance your checkbook because 
you're not allowed to balance your checkbook.
    That, you know, the idea of the sort of Kafka-esque thing, 
you know, people say a lot of stuff is Kafka-esque, but it 
really is. But, you know, also, how do you prove what you can 
do if you haven't had the opportunity to do it?
    I think it's really important that the burden exists, 
similar to how they do in Texas, of the person who wants to 
keep you stripped of your rights is the person who has the 
burden to show that they should be able to do that.
    Like, all of the--there's so many defaults in the system 
that, like, default to guardianship, and default to 
guardianship lasting forever, and we really need to change some 
of those points so that, at the hearing, if your guardian can't 
prove that there's nothing else, they can't prove that they've 
tried supported decision-making, they can't prove that this 
is--the only option is stripping you of all of your civil 
liberties, then that's the end of the guardianship. That's 
really how it should be, and it's rare for it to exist that way 
in States.
    Chair Blumenthal. You know, it strikes me, in trying to end 
a guardianship, even if you could get a ride into town and even 
if you could find a lawyer--having been in private practice as 
well as a prosecutor, you know, my first instinct, somebody 
walks in the door and says they already have a lawyer, would be 
to call the other lawyer just as a matter of professional 
courtesy, as it's called.
    I've been chewed out by some lawyers for not calling them 
as a legislator when I try to do things on behalf of someone 
who had a lawyer when that person actually denied he had--or 
she--had a lawyer. We all have these professional instincts 
about contacting a lawyer, and so I think that's an additional 
hurdle. There's a financial hurdle, there's the kind of 
logistical hurdle, and then there's the professional hurdle of 
lawyers generally being unwilling to take cases from other 
lawyers when they're represented, and in a lot of places, that 
lawyer's likely to know the lawyer who represents the guardian.
    Unless you find someone like the people on this panel who 
are independent, and whose job it is to fight for people who 
want restoration or less restrictive alternative, there are 
just so many hurdles in the path of termination.
    Dr. Kripke. I totally agree, and just to add one thing is 
that sometimes in that situation, you don't have a lawyer and 
you've never had a lawyer, that most States, there's a right to 
counsel in some way in appointing a guardianship, but not in 
all States. You might actually not have somebody else who's 
even technically your lawyer.
    Yes, having somebody who understands this, having--you 
know, there's such a lack of disability competence in a lot of 
professions, not just lawyers, but we're among them, of people 
who just don't know where to begin if they're talking to 
someone, you know, who has a disability and there's, you know, 
there's something about incompetence, and they worry about 
ethics, and I think it just--you know, lawyers don't really 
know how to proceed with that, and so are likely to sort of not 
know where to go and not take those cases, or know how to take 
those cases thoughtfully, and with disability competence.
    Chair Blumenthal. Let me ask all of you. What would be your 
preferred Federal reform? In other words, as has been observed 
a number of times, guardianships and conservatorships are 
creatures of State law, whatever their defects and advantages, 
and I take your point, Mr. Slayton that maybe by and large, 
they--the majority are well done.
    That may be. We have no real numbers or overall evaluations 
to show, but based on your experience, what would be your 
preferred Federal reforms to protect the individuals who are 
under guardianships of conservatorships and, you know, you can 
go in whatever order you would like.
    Ms. Whitlatch. Mr. Slayton talked a little bit about, like, 
court improvement program to try to kind of incentivize, 
creating certain kinds of due process protections and 
bolstering them within States. You know, I do see some value in 
that, given there is such unevenness that's, you know, across 
the United States on these kinds of issues.
    Again, I really do say, as I did in my testimony, that we 
need to also have more investment and try not to get to 
conservatorship and guardianship in the first place. To really 
look closely at the pipelines to guardianship that we've 
discussed, be it healthcare, be it schools, and think about the 
kinds of Federal investments that could be made to dismantle 
those kinds of pipelines.
    Looking at, you know, pushing for the other funds that are 
going to school systems, which are the number one referral for 
guardianship based upon some recent reports. That was really 
highlighted in the National Council on Disability Report, and 
saying, you know, you need to be looking at less restrictive 
options, schools. When students reach the age of majority and 
can be in special education until they turn 22, you should be 
really informing families of all the options, including 
supported decision-making. You should be looking at robust 
transition planning processes for people with intellectual 
developmental disabilities and students with disabilities.
    When you look at trying to, you know, advance supported 
decision-making pilots and other projects that would reach more 
diverse populations. There have been a number of pilots in the 
intellectual and developmental disability field.
    We should look at them for older adults, who I have also 
represented in getting guardianship terminated in favor of 
supported decision-making. How can we make sure that those 
kinds of options and less restrictive options reach that 
population, as well?
    How can we took to try to promote robust funding of the 
very civil rights minded lawyers that we were talking about 
when we talked about, you know, disability sensitivity in 
representation?
    I think there are a lot of investments that need to happen 
in that and kind of coordination to be trying to promote less 
restrictive options to guardianship because it is an 
overutilized tool.
    Chair Blumenthal. Mr. Slayton.
    Mr. Slayton. I think one of the things that--you know, 
recognizing that this is an issue that States and State courts 
oftentimes do, one of the things the Congress and the Federal 
Government could do to assist is really trying to help 
incentivize States to make changes. One of the ways it 
obviously can do that is through a, you know, the court 
improvement program.
    Senator Blumenthal, you were a co-sponsor on--in the 115th 
Congress--of Senate Bill 178, which was the Elder Abuse 
Prevention and Prosecution Act. In that bill, there was an 
authorization for demonstration grants to the States. They 
would basically begin to prove out models of reform that would 
begin to make changes and some systematic changes, including 
data collection, evaluation, best practices.
    Unfortunately, that program has never been funded, so we 
don't, you know, we don't have the data we need. We don't have 
the demonstration projects that can really show--you know, 
Texas did it kind of on its own, but many other States, maybe 
the State legislators haven't put the funding in there.
    I think really if the Federal Government could really begin 
to think about ways to incentivize States through funding to 
make these reforms. Obviously, you all can place requirements 
on that that assist with, you know, looking at least 
restrictive alternatives and things like that, but I think 
that's really a way to begin to change this conversation, begin 
to incentivize States to really take a hard look at that, and 
without the funding I worry about whether or not that's 
possible.
    Ms. Brennan-Krohn. I agree with what's been said. I think, 
you know, providing supports for States to expand alternatives, 
to collect data, all of that is really important. I think, you 
know, at a very high level, what Congress can and should be 
focusing on is what it can do--what you can do to dramatically 
reduce the number of people who've lost their civil rights and 
civil liberties permanently through the system.
    From my position, that has to be the sort of guiding 
principle, is that people having been stripped of their rights 
is a bad thing, and how can we make that happen less? I think, 
you know, there is room--there are clear Federal, 
constitutional rights at issue here. These are squarely 
procedural due process issues, and so there's room for Congress 
to act on that and to enforce rights to notice, to opportunity 
to be heard, you know, a right to counsel as a combination of, 
you know, procedural due process rights and taking into account 
the reality that the person has disabilities.
    It sort of, you know, can be justified as a reasonable 
accommodation, using sort of ADA speak, Americans with 
Disabilities Act speak to say, if you have someone who's, you 
know, alleged to be incompetent, unable to direct their own 
life, then--and you're taking that seriously enough that 
there's a court hearing about it, but then you're not taking it 
seriously enough to make sure this person has an advocate to 
help them navigate this process, it's such a disconnect.
    There's a lot of way to think about and use Federal, 
constitutional powers and hooks to make the due process side of 
this much stronger, and to build in alternatives to that. Like 
I don't think--it's not really either-or, like is the notice 
good or are you doing supported decision-making? I think it has 
to be all of a piece to, you know, make it so that more people 
essentially get kicked out of the guardianship system or never 
go near it, and they find something else there because just 
saying, ``You're on your own. There's no guardianship, but 
there's no support either,'' is not realistic, either.
    I think there's a lot of creative ways for Congress to 
engage on this and to break some of the sort of business as 
usual, which I think can be a real problem in these systems, 
that people are sort of used to doing things the way they've 
always done them, and they have incentives to do that, and they 
have, you know, people have their like psychological biases to 
keep doing things the way they've always done them, and there's 
some room to really shake that up. It really needs to be done.
    Chair Blumenthal. Ms. Kripke. Dr. Kripke.
    Dr. Kripke. Thank you. Without communication, there is no 
self-direction, and when people can't direct their lives, 
that's when they're most vulnerable to conservatorship or 
guardianship. We have some really good laws, Federal laws, and 
some of them may need to be clarified and enforced. 
Communication access is a right under the Americans with 
Disabilities Act, and people's ability to choose how they 
communicate and have their communication accommodated, whether 
they use pointing on a letterboard or an alternative 
communication device or other ways that people communicate 
without using speech needs to be recognized as valid.
    We have the legislation for that, but not everybody 
respects that legislation, so we could enforce it better and we 
could clarify it better. For health professionals, we can 
reassure health professionals that working with supporters 
doesn't violate HIPAA, and that they can rely on decisions that 
are made with support.
    Chair Blumenthal. You know, it strikes me in what you were 
describing, Ms. Brennan-Krohn, as a kind of Federal right of 
action, including notice and right to be heard and so forth, 
and periodic review. Maybe that's one of the areas we should 
explore. Then, the absence of data and information, that's 
something certainly the Federal Government can do. We're 
supposed to be doing it on crime. There are a lot of holes in 
that system, lack of reporting in many instances, so it would 
have to be enforceable, and then maybe some standards for 
guardianship.
    I agree with you, Mr. Slayton, that the best way to 
incentivize, if that's the route to take, would be to provide 
support for State court systems, for the--in Connecticut, it's 
a probate court, it's a separate court. I don't know about 
other States. They are almost an independent branch. They've 
improved greatly over the past few years, and there has been 
reform in the system in Connecticut, but there is still a need 
around the country, I think, for additional data collection, 
additional reforms, and incentives for those State court 
systems to do more.
    You know, I was struck by a recent series of articles in 
BuzzFeed News that highlighted some especially egregious 
examples of repeat players in the guardianship industry who 
frequently take hundreds of clients, make millions of dollars, 
and very often neglect basic responsibilities and duties.
    In particular, the stories identify a Rebecca Fierle, who 
quote, ``made millions while controlling the lives and finances 
of more than 500 people before she was charged last year with 
abuse and neglect of an older adult ward who died after she had 
him placed under DNR, and allegedly told doctors to cap his 
feeding tube. When police raided her office, they found urns 
containing the cremated remains of nine former wards on 
display'', end quote.
    Maybe I'll ask you, in your experience, are there instances 
of these kinds of lawyers, we're talking here about lawyers who 
fail in their responsibilities in that really criminal way, or 
bordering on criminal, where the legal profession itself, or 
the courts, or someone, should be exercising greater scrutiny?
    Mr. Slayton. I'll jump in here and say in Texas, one of the 
things that Texas did was to begin the regulation of private, 
professional guardians. You've got family members and friends, 
and I talked a little bit in my testimony about how we started 
doing some things recently, but the first reform that was made 
back in the early 2000's or mid 2000's, was to begin to require 
licensing, testing, and regulation of private, professional 
guardians, putting limits on the number they can have, 
requiring certain continuing education, and then having a 
complaint process, where someone could complain and there would 
be an investigation.
    I--not every State does that, and I think it's really 
important to make sure that individuals who are being appointed 
by the court and being trusted by the court have some sort of 
oversight professionally where, you know--and we've had 
situations in the State where those private, professional 
guardians have abused that responsibility and then had their 
license revoked. Even recently, Federal--State criminal charges 
against that person for abuse of several of their persons under 
guardianship.
    Ms. Brennan-Krohn. Yes, I think there are these high-
profile stories, and not high-profile stories, that I've heard 
of people who report really egregious criminal or bordering on 
criminal conduct by guardians and report that they--there isn't 
a mechanism to complain about that that gets anywhere. I think, 
you know, one part of that is that we should have better 
mechanisms where people can complain. Better oversight, like 
Mr. Slayton is talking about.
    I also think it goes to the really fundamental issue, which 
is if you give someone that much power, people are going to use 
it, and having, you know, power corrupts, absolute power 
corrupts absolutely, like, we're building up--out a system in 
guardianship where people are invited to do things like that. 
Many people won't. Most people won't, but it's a sort of built-
in risk if you're going to give one person such extraordinary 
power and unchecked on a day-to-day basis.
    Even if there is some reporting, you know, you can go a 
long--unchecked for a long time over a person with 
disabilities.
    Chair Blumenthal. I would just note that in 2018, the 
Senate Special Subcommittee on Aging--I'm a member of that 
Subcommittee, or Committee, actually, as well, released a 
report recognizing the impact of the guardianship system on the 
health and well-being of seniors, as well as people with 
disabilities. They found many of the same--the themes of that 
report are very similar to this one, as I'm sure you know.
    I would just highlight again, we've been talking about 
people with disabilities, people with injuries, but I would 
guess that these issues are very common with people who are 
elderly, people who may have onset dementia, and I would guess 
courts would find it very difficult to make distinctions among 
these people, which again calls for the need for standards, 
maybe some Federal right of action.
    Ms. Brennan-Krohn. Could I just add one thing to that? 
Simply that I totally agree, and when I talk about disability, 
I'm including people who age into disabilities----
    Chair Blumenthal. Yes.
    Ms. Brennan-Krohn [continuing]. Who don't necessarily think 
of themselves as disabled, but dementia or any sort of age-
related changes in your ability are, in my mind, in the 
disability space, so I totally agree that we--but it's a 
different experience to age into disability than to have a 
traumatic brain injury, than to be born with a disability, so I 
think it's important to be mindful of that full range of 
experiences and disabilities.
    Ms. Whitlatch. I would just also add that I do think that 
there's a lot of misunderstandings around--just as there's 
misunderstandings about what an IQ test does or means or 
doesn't mean about someone's incapacity, so too there's a lot 
of misunderstandings what a diagnosis of dementia is. I 
recently co-authored an article that looked at supported 
decision-making specifically within the context of older 
adults, including older adults that had dementia.
    There are different factors to consider within the context 
of older adults. You know, their support networks look 
different. As you're aging, you know, your natural support 
networks may fall apart, you may not have, you know, you might 
be more isolated. When you're talking about a question of--we 
talk about in the disability world a question of kind of 
building capacity. What do you do when you're talking about 
diminishing capacity? How do you plan for that?
    I do think that there still remain options other than 
guardianship within those contexts.
    Chair Blumenthal. Great. I think we've taken a lot of your 
time. I really appreciate your generosity and giving us that 
time, and I want to thank again Mr. Clouse for sharing your 
personal story. Always difficult to come in this kind of 
setting and talk about a personal experience like yours, so 
we're very much indebted to you and your family for being here 
today.
    I commented at the beginning based on the Britney Spears 
case, but I think it applies to so many that we need some 
reforms. The Federal Government can play a part at the very 
least in incentivizing reforms in enabling better data 
collection, so we are dealing with a little bit more of a known 
challenge. We know there is a need to strengthen State systems 
provide alternatives. I think that's one clear theme here, that 
there are options and alternatives to the very straitjacketed 
approach that conservatorships can take.
    We need to improve oversight so that there is some 
independent scrutiny, and maybe some best practices and data 
collection among states and with the Federal agencies. For me, 
as a former prosecutor, enforcement, I think a number of you 
have noted that there are laws already. I think Dr. Kripke, you 
mentioned it most recently. Laws that may be unenforced right 
now because we don't devote the resources, or we don't give it 
enough priority.
    I would like to thank all of you for devoting your lives to 
it. This is not kind of a sidelight for you. This is your 
life's work, and it's very, very profoundly important work, and 
I hope that we can achieve some changes in law that are worthy, 
Mr. Clouse, of your courage and experience, and the courage and 
experience that you all have devoted to this very, very 
important area of our law and our life's experience because the 
chances are very good that one or more of us in this room today 
may be placed in some kind of conservatorship or guardianship, 
and that a less restrictive supported decision-making option 
might be more appropriate and more valuable to us.
    Again, my thanks to you. We will be in touch with each of 
you. We're going to keep open the record in case any of my 
colleagues have written questions for you. We'll keep open the 
record for a week in this hearing, but I can assure you that we 
will be back to each of you in the course of our considering 
potential Federal reforms.
    Chair Blumenthal. With that, I'm going to close the 
hearing. Thank you very much.
    [Whereupon, at 4:43 p.m., the hearing was adjourned.]
    [Additional material submitted for the record follows.]
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