members of a senate subcommittee heard from experts on the need for federal changes to conservatorships. they heard heard from people's experiences of living under a guardianship.

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-- 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. but in too many instances, they don't. but 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 we're talking about britney spears. we know britney spears is an undeniable music superstar. she has been and will always be a cultural icon and superstar. we can't forget she is also a mother. she is 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, as 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. and 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. so she was far from being incapacitated as people ordinarily would know it. for years 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. but 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. conservetees may not understand how restrictive these arrangements may be. so they may not object before it happens. many are not made we're 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'll also tell us about how there are other options, better alternatives to these legal straight jackets. and 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 decision making. 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 straight jackets, arrangements that are potentially abusive and certainly a disservice to many people that are under them. and 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. and 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 straight jacket, and make sure they are 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 improved data collection. i know that our colleague, senators 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 had 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 about his own experience. we welcome you here. you're 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 today. thank you very much for being here, and i'll turn to ranking member 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 and 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 or 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 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 child bearing and forced sterilization, sadly, it goes on

all the time in oppressive nations and communist countries like china. and 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 recently 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. but 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. and 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 interests 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. and 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 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 have rights returned to him. it also means seriously considering alternatives to conservatorships and whether individuals have reasonable access to those alternatives. that could include supportive

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 health care 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. and 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, i'm glad we've 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. >> 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, and so we welcome you in. 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. people from all over the country literally who couldn't be here, and we couldn't have because of time constraints, but we'll give you a flavor of what their experience has been. we can do that video now. >> when i was about 18, i got put in a full guardianship, they took away all my rights away, the right to vote, the right to marry, to sue. before the guardianship i was able to go out with friends, go to the movies, volunteer, do a

lot of volunteer work, and even go to the college. after i was put in the guardianship, i became fully restrictive, couldn't go see my friends, couldn't go see my family, couldn't go anywhere. i got my rights back in 2016 where i was able to get all of my freedom back with the supported decisionmaking agreement, and being able to make my own decisions with people i trust. >> i was in a group home. i did not want to be there. i told everyone that i was not happy and did not like it. i just wanted to live where i felt safe. i wasn't allowed to see my friends. i wasn't allowed to use my cell phone and my computer. i felt like a prisoner. but i didn't do anything wrong.

it was like i didn't exist. instead, i was tucked away from my community, my church, and my friends. just because people have a disability does not mean they need a guardianship. many times they may need just a little help. >> had a state guardian for almost a long time. i didn't like it. i like to go places. when i had a guardianship, i felt like i was living in prison. now that i don't have a guardianship, i got released from prison. >> i had a question to determine guardianship. i found out about it the day of the hearing, a few hours before the hearing, i told my parents that i did not want to lose all of my rights, and there is this thing called supportive decisionmaking that would allow me to keep my rights and to get

the help i needed to make decisions on my own. they stopped the hearing, they got more information about supportive decisionmaking. i used it along with a power of attorney has allowed me to keep my rights, to make decisions. >> the judge placed me under a professional guardian. during those past nine and a half years, my guardian would not allow me to have a cell phone, any kind of technology. she restricted me from my friends, my family, and she didn't even take in consideration of where i wanted to live. and she didn't even let me get my own clothes.

i am so happy that i am off a guardianship so i can live my life. >> i grew up in a state institution, and i was released when i was 26 years old. i was required to have a guardian to get out of the institution. after living in the community for three years, i decided i didn't need a guardian. my guardian went to court with me, and the judge ended the guardianship. i have trusted friends in my community. i can turn to them if i need advice. i remain in control of my life. >> my mom was trying to teach me how to be an adult by teaching me how to manage my money and what was important. the judge did not like me having a debit card to put gas in my car. she also did not understand why

my mom was having me save money for tuition and car insurance. i wanted to go to school, but she said we spent my money on anything. i do not feel that the judge treated me like a human. she never talked to me. my doctor also felt i needed my rights back, but the judge would not listen to him either. i am now working full-time and going to college. i now manage my money and make decisions with just my parents' help. i would like to ask that you make guardianship the last option for others. they need to have a chance to make decisions on their own first. guardianship took away everything from me. it needs to be the very last option. >> 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 she is from huntington, indiana, where he lives with his wife, chelsea, and their 4-year-old daughter. ms. clouse works full-time as a warehouse forklift operator. he previously worked as a welder and bio-technician. 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 peoples' civil rights and civil liberties. she has also worked extensively to help people with disabilities and use spaut supportive decisionmaking to expand public understanding of the risks of civil liberties, harms of guardianship and the potential of alternatives. ms. brennan-kohn has represented people trying to get out of guardianships. and she's joined more than 20 disability and civil rights organizations. that brief has been joined by

that many, and 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 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 decisionmaking. 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 includes co--representing an adult with

down syndrome in fighting for her right to engage in supportive decisionmaking, as well as representing the first senior in dc to have her guardianship terminated in favor of supportive decisionmaking. 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 supportive decisionmaking, and he's an advocate for increased regulations by guardians of the state. if you would all now rise, i would administer the oath. do you solemnly swear that the testimony you're about to give is the truth, the whole truth, and nothing but the truth so help you god? thank you.

mr. clouse, we'll begin with you. >> 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 of 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 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 of 2014, i was blessed to meet my now wife chelsea and the mother of my child. the symptoms from the tbi had improved by that point but my vision of the future was clouded by constantly being told 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 of 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 had to get permission from my stepfather to buy diapers and formula for my daughter. my parents fully 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 finally allowed chelsea and i to get married in may of 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 reached out to them in the 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 of 2021, my parents refused to even consider agreeing, so 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 a legal guardianship. sorry, i'm out of time, do you want me to finish or -- >> you can take a couple minutes more. >> thank you. after everything i've been through, i'm incredibly lucky to be in my current position. i have a wife who's 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 subcommittee for having me. >> thank you. thank you for that excellent testimony. i understand your wife may be with you today. you can acknowledge her if you wish. thank you. we're going to go now to ms. brennan-kohn. >> thank you, tough act to follow. chair blumenthal, ranking member cruz, thank you for inviting me to speak today and for convening this hearing. i'm a staff attorney at the aclu disability rights program. britney spears high profile case to battle to get out of conservatorship is the first time many in this country had heard of conservatorship or guardianship, and i'll use those interchangeably. guardianship is 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. her experience of getting into a guardianship in a period of crisis, then facing a maze to try to get out, is astonishingly routine. guardianship is fundamentally a civil liberties issue, the government stripping away 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. only people with disabilities or perceived 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. but systemically, guardianship is dangerous. yet the harms and risks of guardianship 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 a 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 strengthen the system, strengthen due process protections and treat guardianship as the invasive last resort it is. and we need to make changes beyond guardianship towards a world in which far fewer people are in guardianship, and more people with disabilities live self-directed autonomous lives with the support 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. supportive decisionmaking 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 the system. first congress should set up guardrails to strengthen the due process protections within guardianship. it should recognize and remedy the constitutional violations that pervade guardianship proceedings, including 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 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. but 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 supportive decisionmaking, 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 thoroughly inform decisionmaking as a reasonable modification, and a less restrictive alternative that should 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. >> thank you very much. >> now, morgan whitlatch.

i think you may have to turn on your microphone. >> i did. okay. thank you for that. thank you for the invitation. my name is morgan whitlatch, the legal director of quality trust for individuals with disabilities. quality trust is an independent advocacy and monitoring organization based in washington, d.c. we also lead the national resource center for supportive decisionmaking, which was created in 2014, and is dedicated to advancing the decisionmaking rights of people with disabilities in older adults through training, technical assistance, research, and promotion of promising practices. through quality trust jenny has justice project we provide legal advocacy, and representation to assist people with disabilities, including older adults, for less restrictive options for decisionmaking support and to go to court to prevent, limit and end overly restrictive guardianship. we served under cooperative

agreements with the national council on disability that results 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 can inform the subcommittee's deliberations. we also were involved with the fourth 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 problem with guardianship and the conservatorship systems. in two decades on working on behalf of people impacted by these systems quality trust knows ms. spears is not alone. we have seen the kinds of rights restrictions she reported experiencing and imposed upon adults of all ages with different diagnoses and disabilities, and life experiences and socioeconomic backgrounds. we know through direct experience how hard it can be to get a guardianship eliminated or terminated.

today so far you've heard directly from nicholas clouse from indiana and the wonderful videos you showed, but there's so many more stories from people around the country and it's those testimonials that are the most important and compelling reason why reform must happen now. my colleague addressed reform to address serious due process within guardianship and conservatorship systems. in my 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 thank this subcommittee for its leadership in this conversation and responding to the strong public outcry for change we urge you not to concentrate reform 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 pipelines to overbroad and undue guardianship, including those linked to schools, health care providers, adult protective services and the legal protection among others, it means promoting less restrictive and voluntary options such as supportive decision making that does not involve the courts. spautive decisionmaking occurs when people use family, friends and others they trust to help them understand the choices they face so they can make their own decisions. it allows the person to retain legal rights while getting support from those they choose and trust. sdm is part of the mainstream disability rights discourse and 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's been recognized and endorsed by influential associations, national organizations and federal agencies. more work is needed for disabilities in older adults across the country. promotion expansion advancement of supportive decisionmaking should be one of the ways to address the problems identified here today. my written testimony includes additional recommendations but i'll focus my limited time on key ones. in addition to the ones ms. brennan-kohn referenced congress should turj the department of justice to recognizing and clarifying that supportive decisionmaking 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 disability education act are not pipelines to overbroad and undue guardianship by funding technical assistance and demonstration projects by using alternatives to guardianship and promoting training.

congress should support programs that fund grants to promote states adopting and implementing supportive decisionmaking. 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, and congress should fund incentives to support the state collection of data that zoe spoke of. we would encourage the funding of the national resource center for decisionmaking to coordinate national practices. thank you for your attention to this issue and i look forward to answering your questions. >> thank you so much, 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,

i'm the director of the 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 health care. 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, supportive decisionmaking simply works better than conservatorship. conservatorships encourage health care 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, care givers, or other trusted people who a judge might appoint as a conservator. i had a patient who we suspected 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 and implementing their health care 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 health care team behaves more respectfully, when speaking directly to a patient. overall, for the delivery of health care, involving courts doesn't add value. it doesn't prevent abuse. supported health care decisionmaking 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. >> thank you. mr. slayton. >> chair blumenthal, ranking

member cruz, and the distinguished members of the subcommittee. i'm david slayton, 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 determination by the judge that an individual lacks mental capacity to make decisions independently appoints a guardian to make decisions and to 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 an individual by abuse or exploitation by others. in most guardianships, this is exactly what happens. family members or friends protect their loved ones with intense attention to the needs of the individuals. sometimes this doesn't happen. sometimes the individual is placed in a restrictive facility and rarely visited. sometimes the individual regains capacity, and remains subject to the guardianship for years.

sometimes the trusted guardian begins to pill for the estate and 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 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 workers, law enforcement and accountant. in a review of 55,000 cases in texas, the judiciary found 5,000 individuals who were deceased without the guardian alerting the judge. 40% 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 his or her own decisions about residence, to provide a review for necessity of continuing the guardianship, and to create a new alternative guardianship called supported decisionmaking, the first state in the country to do so. texas also enacted a robust bill of rights for individuals under guardianship. after finding that 98% of all issues wherein guardianships where family members or friends were the guardian, texas requires family members and friends to register as guardians with the state, have a criminal background check, and participate in online training about their responsibility as guardians prior to their appointment. texas has 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, and lastly, just this year, texas continued its reforms by providing this 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. conference of chief justices and state court administrators from 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 ten 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 the 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 control is

managing another portion of the individual's finances. even when the state removes a bad actor for court, ssa does not honor state court orders and limits the exchange of information between the state courts and social security administration. bad actors who run into issues in a guardianship in one state may choose to move the individual and seek a guardianship in another state. or an individual found by one state court to have abused or exploited an individual may move to another state only to be court-a pointed again without knowledge of the other state. giving congressional consent to an interstate compact creating a national registry of guardianship procedures is critically important. the federal government could assist the state courts by enanging enacting an adult improvement program, providing funding to the 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. >> thank you 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 the 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 united states senate today and this week. so i apologize that some of my colleagues are not here. they may appear. there are all kinds of meetings and floor proceedings going on, but have no doubt 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. colu -- clouse, if i may. you have worked consistently since your injury, pretty much consistently, as a warehouse forklift operator, a welder, a biotechnician. you clearly have 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. >> yeah. it went as far down to as asking -- i had to ask for money every time i wanted to make a purchase. and it would be all the way down to just wanting some gas so i could get to work. and i'd say more times than not, any of my requests, they would be denied. >> so those requests actually were denied when you asked to spend money? >> yes, and my wife -- well, she was my fiance at the time, and after she became my wife, she had to pick up those cost. >> so she was paying for your

expenses because the conservator or guardian was denying permission. >> yes. >> and how did that make you feel? >> worthless, to be honest. >> i can understand that. >> absolutely worthless. work all of those hours and not be able to bring that money home to my family. >> so you were earning that money but you were denied the right to decide how to use it? >> yes. >> ms. brennan-kohn. 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. >> certainly. 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 sort of -- 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 it's not an unusual situation. >> that one word, worthless, is haunting. >> yes, and the idea of guardianship is supposed to be this benevolent way to help people, and it's so far from that in so in cases, in outright abuse, and even in cases where it isn't. the message being told that you're a child and your choices and wishes don't matter is an extraordinary compelling message to give people and very very harmful. >> 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 decisionmaking, 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 decisionmaking is that you learn from mistakes. that's how we learn best, at least speaking for myself, i made a lot of mistakes. >> 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'll ever be able to do, which is particularly devastating for people who get into guardianships right when they turn 18, people with intellectual, developmental disabilities, it's called the school to guardianship pipeline, and to be told when you're 18, i think any of us could look back to when we were 18, any judge would have had questions. things are improved in some

ways, and 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 and you're told if you can't count back from 100 by sevens, you can't do anything in your life. unless your job is counting back from 100 by sevens, that is not a core life skill. >> i have a lot of questions. i'm going to turn to senator cruz. he has another commitment, i believe, a floor speech at 4:00 p.m. i'm going to let him do his questions. i'm going to vote. i'll be right back. >> thank you, mr. chairman. and i will say i very much hope the senators are not expected to count backwards from 100 by sevens. i was told there would be no math in this hearing and i'm concerned that you've changed the rules on us. >> i share that hope.

>> 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 the 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. it's where my met my wife, heidi, and one of the policy responsibilities i had was focusing on disability issues. and i worked with then governor bush, i worked with a number of disability rights advocates in designing what became one of president bush's new initiatives, the new freedom initiative, which we hammered out on a laptop with bullet points and it ultimately got enacted into law, and 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. and i think this discussion, all of the witnesses powerfully highlighted that. i would like to start my questioning, mr. clouse with you. i want to thank you for being here. this can be a daunting place and telling your story, i'm sure, is not easy. but 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, and 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. and so i appreciate that. 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. and 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? >> well, 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.

first thing i did was i was able to fill up my tank of gas and not have to worry about my card getting declined even before swiping it. and i haven't done anything irresponsible or anything since i had the guardianship terminated, but 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 when august 24th hit. >> well, 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. i certainly would not be so bold

as to say such a thing. ms. whitlatch, we've heard about the constraints that mr. clous effaced. 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 those you've worked with? >> i wish i could say they were uncommon. i've been practicing in this area for over 20 years, and i can say i've seen many people in these situations, not having control over their psychiatric treatment, not having control to their lives, a cell phone, not

having their own i.d., not being able to travel. all of these are common and they affect people with all kinds of disabilities, all ages, and so 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. you think you go to court and you think you're going to have a court that's going to be overseeing this. it's very uneven kind of court oversight, so unfortunately i hear a lot of stories like this. >> thank you. we 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?

>> in a lot of cases, they're almost all lacking. 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. and it varies state by state, the precise process, but if you start at the base of 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. and even if you get the mail, it's a legalese document, you check in box, and then that box is checked. people don't meaningfully understand what is going to happen. and often the people seeking the guardianship don't either.

even one step before notice, people start this process thinking that it's just what they have to do because that's what a school told them or a family member told them. that's what they heard. and the hearings themselves, they can be seconds long, these hearings. you may not be at the hearing. your voice might not be heard. there might not be an opportunity for you to say i don't want this or i don't like this or i don't understand what's happening here. >> and let me ask, 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? >> i would say that i have seen that kind of circumstance before where it's difficult for -- 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. and i think what it takes is really, really zell is advocacy. but in circumstances like you're describing, that advocacy of expressed wishes to be able to challenge the evidence that's being used against you did not appear to be present. and 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 the systems can be very insular and, very insular systems that aren't based upon the kind of civil rights focus. so those can be challenges when it comes to guardianship proceedings. >> doctor, 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?

>> yes. so we work as a team to deliver health care. health care for people with developmental disabilities is interdisciplinary team-based care and it includes not just the health care providers, but the people who provide direct support to the patients, whether that means personal assistants 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 in supporting that person to make the right decision and then carrying out the plan. so we work together as a team to make health care 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 into along with the patient. so we work together collaboratively and work towards consensus instead of putting decisionmaking in a single person's -- in a single person's hands. >> 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 help create greater due process protections? >> sure, senator. you know, i think one of the things that we started doing was having a conversation with people under guardianship, guardianship advocates and began identifying some. and i think, as has been noted here, one of the keys is changing from maybe what's been described as a pro forma system

to full guardianship is the last alternative that's explored. so 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 the judge has to find by clear and convinces evidence that there are no other alternatives to guardianship. so it's obviously a high burden of proof to get there. and then one of the things i was thinking about with mr. clouse's situation, one of the things we did in texas, it's often that someone with a traumatic brain injury or someone that has a stroke oftentimes get placed under guardianships, but their conditions improve. so one of the requirements under texas law is when the doctor is doing the evaluation for a guardianship, they have to state in their report what the likelihood of improvement is and what timeframe that's expected

and the judge is required to evaluate the need for continued guardianship in that timeframe. so it puts in place due process protections to where this is continuously occurring. and the last thing i would say, and there's a whole series of reforms that we could go through and spend some time and i've submitted that with my written testimony, but another one is an 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 note in someone's previous testimony, that the majority of the issues come up when it's a family member or friend guardian, and give them the benefit of the doubt, maybe they don't know what their responsibilities are, the limit are or what other options they have, supported decisionmaking or other types of alternatives. so making sure they're aware of those situations before a guardianship is important. i said one thing, but one more last thing is this idea of the bill of rights. it was an important development

in texas to put in writing, these are a person under guardianship's rights and that must be provided to them. and every year in conjunction with the report given to the court, the person under guardianship has to be provided with their bill of rights again so they understand they have the right to 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 your state. >> so that's helpful. let me, if i could, mr. slayton, ask you a hypothetical. >> sure. >> which is britney spears' conservatorship is under california law. in texas, had a similar fact pattern have proceeded, how would it have proceeded differently? >> let's pretend it was before the guardianship was established. i think there would have been a pretty significant mountain to climb about whether or not there were other alternatives that

would have been more appropriate, or maybe there could have been limitationness the guardianship. could 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. the question would be whether or not the guardianship would have been established in the first place. 6 these reforms, a more natural review of the need to continue the guardianship. to continue the guardianship. i think there hasas been difficulty and getting that looked at. and i think that of these reforms, it would've been a more natural approach. and they would have to find clear evidence that the guardianship continues. and there are no less restrictive alternatives that could be more appropriate. >> that is very helpful. the time is expiring on the floor, so i will run vote. and hand the gavel back to the

chairman. and i would think each of the witnesses for your testimony. and especially you mr. nicholas clouse a your story is powerful. and thank you for being for your wife as well thank you for being here as well. >> thank you senator cruz, you're going to miss my count down by seven. [laughs] . >> i didn't practice, and i'm not going to do it. >> so again, thank you for your patience. and i'd like to continue kind of the topic i was beginning to explore, with miss brennan-krohn. and 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 also mr. nicholas clouse you are a lot to talk about this from your personal experience. and how common is this and maybe you can give us some examples? >> well let me take a start here and 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. so the ones we hear about are the bad actors, and but they are a lot of people were the situation is good. but we in texas have found over and over again, exploitation occurring. and i have a list of examples. and i'm looking here to we had a guardianship that was -- by the state. and after a financial audit

revealed that the guardian had removed over 10,000 cash withdrawal, and 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 using the proceeds from the state of the person under guardianship. so over and over again you know it's like uncovering a terrible onion. and you peel back the layers and it gets worse and worse. so i would say it is more frequent than we would like to you know, or that we would be comfortable with. even if it's not extensive, certainly there's plenty of it going on. and it should be a concern for all of us. >> yes i absolutely agree that we don't have to data but, the system is set up so that it is

easy to exploit someone financially. but i also want to say that there's outright financial abuse and fraud, and that happens and is significant. but there's also this very large number of cases, and perhaps the your case was in this area, where maybe it's not outright fraud, but you have someone who is 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. and i think that shouldn't be underestimated. even cases where you're not putting a hot tub in your house, but 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 knowing that you know you have

to be asked to fill up your car with gas. even though all that money is sitting there waiting for you, you know i think it's extremely widespread. but >> thank you. and to doctor kripke. >> i think financial exploitation is common in conservatorship, because you have to go to a judge to make a change, and in support of decision-making, but if you don't like how somebody is managing your money, you can change the authorized representative on your account. you can change your representative pay e who is helping you with your bank account for your as i checks. and so trustees or conservator's often perform

well and then develop disability themselves as they age and may not be able to provide the same level of support. and to support the decision-making, and the conservative's conservatorship is a much more complicated process. the >> other comments? >> i just want to say, when you talk about the legal tools the powers of attorney, guardianship, be it conservatorship, or representative ship, there are always bad actors, but it's how do you create the support network to create the checks and balances. and with guardianship and conservatorships, the guardian or conservator is weighing a great power. with not necessarily having oversight. and that's why we see these cases of financial abuse. >> and mr. clouse i would like you to tell us how your

conservatorship ended. and how you managed to end it? >> well, i was able to get in contact with the -- and they sent me -- and they 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. my guardian my guardians often maybe jump through hoops to get things done. they wanted me to go see a psychologist, and have a psychiatric evaluation done. and after a few weeks of going

back and forth, we finally gave in and i went to the one they want me to go to. and without a doubt, the psychologist said there is no need for guardianship in her report. and shortly after that, we were able to get the guardianship germinated. >> did you know or was their opposition or do they try to keep it in place? >> they posted from the very beginning, but i give them notice that we are challenging the guardianship. >> how long did it take to terminate it? >> roughly a year and a half, after we had -- . >> i invite others to comment

on the process of terminating guardianship, and how often it occurs that someone wishes to terminate it? >> it is very difficult to terminate a guardianship. it's very resource intensive. speaking to speaking from someone who has represented people, and it is very resource intensive to be able to provide that kind of service. people can see all sorts of barriers. some people don't even know what attorney to go to. it was their disability rights, some can't access to an attorney in that way. some attorneys don't want to represent them, and feel that they are not able to be represented on their own. and you have different kinds of ethics rules. i think really big issue, is having to face paying for the approving party, not only your

own legal fees, but the other parties legal fees. there's a system set up where people some people who are under guardianship, they have to pay these kind of fees. and i think given the types of evaluations that nick is talking about, that can be difficult to. there's a tendency when we talk about, quote incapacitated, unquote. for a psychological evaluation to really link that to diagnoses. and some diagnoses are static diagnoses. they are not you know you're not going to have a facility -- for example. or they have a history of a traumatic brain injury. and some people have some people have some kind of iq stores scores. and sometimes there's not an alternative to guardianship, or the ability for someone to direct their own life or as someone else to direct their lives. so you know -- we were preparing for months,

we have a host of experts that we have to retain, to show that a person with down syndrome didn't need to be under permanent guardianship. with six days of trial. that was resource intensive. it could be difficult to terminate a guardianship, and that's why we need to really three think how people get under guardianship in the first place. it's much easier to establish a guardianship then is determining one. >> other comments? >> just to echo what she said, the strength of the current, situation get into guardianship, it's just a strong against you when you're trying to get out. and that people have no idea what they're getting into when they start this. and then the barriers, even very practical barriers, if you're in a guardianship no and the new revelations about britney spears right now. if you are in a guardianship

where you can have a phone. that is pretty common. but it's common not to have a phone, and i have access to the internet. not have access to have access to your money. so you will hitchhike into town, and hope you find your way to a lawyer? but just it's a very impractical barrier to having any idea of how to challenge a guardianship and that's so uncomfortable. and there's a reluctant reluctance by the court, to dissolve guardianship's, and often in cases where the fact of a disability remains. which is true for most disabilities. they are lifelong realities. and you will have a disability for your whole life in many cases. but that does not mean that you won't change. and you won't learn. or you'll developer have preferences. and you won't be able to use -- . i think judges often think of it as you know this person, they still have an intellectual

disability so it could be different here. and that's a real mistaken view. but >> so one thing i would say, and this points to the need for a system, or a procedural way for this to occur. and i mentioned when you are out of the room and taken about a minute ago, one of the things we did in texas as part of the you know if someone is listed with a traumatic brain injury, or stroke, if there's a process that automatically gets 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. and the well-being reports there needed to be filed every year, that saved is that there is a discussion and review to see if you need to have that guardianship continue. but maybe at some point, you know this will get brought up by someone else who is pointed out that -- or the final order that want to

take on their case. that's probably less likely to be effective, and really providing a robust way to review this. states really have to look at ways to make that happen. >> in 20 years of practice, i've never had anyone who was able to get out of a conservatorship, but i have had conservatives die, and i don't know what happens legally. i think the conservatorship it fades away, and we carry on like it hadn't existed. i've also had conservator's, who no longer wanted to serve in that role, because they developed other caregiver responsibilities for other families for their their family, and sometimes was denied by the court to get to not be able to serve in that role. so it's an intensive role if you're making all these decisions for another human

being. doing all their finances, health care, especially somebody with a complex disability. it's not a small job, and people don't realize what they're getting into. it's a lifelong commitment and doing that. >> for the kind of evaluation that was done in mr. clouse his case, that was a psychologist i assume. and that psychologist was hired by the conservator or the court. i don't know would happen in your case, but i would expect that a psychologist was hired by one side or another. because the court or the conservator because the court would have probably some professional interest in upholding the status quo. so i don't know whether any of

you have had that experience. maybe somewhere where the psychologist concluded, you are able to do without it? >> actually we had to financially split the psychologist and i was willing to pay up front. so i can obtain my freedom. and i had no doubt, the psychologist would finally competent. but my parents were reluctant to. >> so you had to take and pay for the services of the psychologist yourself? >> yes sir. >> i would say, it really does vary upon state systems, as to how those kind of evaluations occur. i worked in different jurisdictions, and some courts they have a panel of examiners, or evaluators that are used to

evaluate people. and one is a question of capacity, or regaining of capacity are raised our the working jurisdictions where it's about an agreement between the parties. and in the evaluator, and often when i'm involved in restoration, we as a non profit go out and we want to pick who are evaluator is. we want to make sure they have the right values, and think about disability the same way we think about it. and really look for the kind of core of a person to person, and the alternatives to guardianship. but you can expect that latter approach, can be -- but an effective approach to try to seek restoration. >> let me ask you miss brennan-krohn. when an individual becomes aware or someone in conservatorship, to see

conversation, or they push for less restrictive alternatives. what is the most likely outcome? and the reason i raise this is because the standard key, but that is clear and convincing evidence to overturn a conservatorship. or in other words the burden of proof, is a pretty high threshold. and evidence is not proof beyond a reasonable doubt, but a lot more difficult than a preponderance of the evidence. so maybe you could talk about in effect how the legal deck is stacked against against somebody taking restoration. or lest restriction. >> sure yes people who get themselves into court, our small minority of people. and people who want to get out, or should be there. but by the time you get 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, but 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 terms of you know the guardianship itself. it can be self fulfilling, it could be that you still don't know how to balance your checkbook. and nobody's told you had to balance it, because you're not allowed to bounce you check. and that you know the idea of the you know the cascading thing, and -- also how do you prove what you can do if you haven't had the opportunity to do it. so i think it's important that the burnt exist similar to how they do in tests. where the person who wants to

keep you stripped of your rights, is the person who has shows the burden that they can do that. all of the you know, there is so many defaults in the system, that default to guardianship, lasting forever and we need to change some of those points so that as to the hearing, if you're guardian cannot prove that there is nothing else, than they can't prove that they've tried supportive -- making. and this is the only option, of your civil liberties, and at the end of the guardianship. that's really how it should be. and it's rare it's that way. >> it strikes me in trying to end the guardianship, even if you could get a ride into town. even if you found a lawyer having been in private practice as well as a prosecutor, 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 it is called, i've been chewed out by some lawyers by not being called as a legislator on trying to do something for someone who had a lawyer. when that person actually denied here she had a lawyer and we all have these professional instincts about contacting the lawyer and so i think it's an additional hurdle. it's a financial hurdle. there's a kind of logistical hurdle and then there's the professional hurdle of lawyers generally being unwilling to take cases from other lawyers when the representing them and a lot of places that lawyers likely to know the lawyer that 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 alternatives, there are just so many -- of termination. >> i totally agree. just add one thing it's sometimes in that situation you don't have a lawyer or you've never had a lawyer. in most states there's a right to counsel in some way to appoint guardianship, but not in all states. you might not have somebody else who is technically your lawyer. having somebody who understands, it is such a lack of disability competence of people who just don't know where to begin if you are talking to someone who has a disability and there is something about and competence, and they worry about ethics.

lawyers don't really know how to proceed with that. so they are likely to not know where to go or take those cases or know how to take those cases with regard to disability comprehensively. >> let me ask all of you, what would be your preferred federal reform? as have been observed a number of times. guardian ships and conservatorship's are creatures of state law, wherever there are defects and advantages and i take your point, that may be by and large the majority are well done. that maybe. we don't have real numbers or evaluations to show but based on your experience, what would be your preferred federal reform to protect the

individuals who are under guardianship's or conservatorship's. you can go in whatever order you would like? ta >> mr. slate and talked a little bit about the improvement program to try to incentivize, creating certain kinds of due process protections. i do see some value in that given there is such unevenness across the united states on these kinds of issues. but again, i really did say as i did in my testimony is that we need to also have more investment and try not to get the conservatorship and guardianship in the first place, because we look closely at the pipeline guardianship we discussed, beat health, care beat schools, and think about the kinds of federal investments that need to be made to dismantle those kinds of pipelines. so looking at pushing for public funds that are going to school systems, which are the number one referrals for

guardianship, we've found some recent reports that really highlighted ta -- disability report saying you need to be looking at less restrictive options and schools -- convene special education when they turned 22, you should be really and families about all the options, including decision-making. we should be looking at robust transition and planning props -- processes and students with disabilities. when you look at trying to advance support of decision-making pilots and other projects that would reach more diverse populations. there has been a number of pilots in the intellectual and it's -- developmental disability fields. also hurdles, where i was in favor of decision-making, making sure that options, leftist restrictive options reach that population as well. how can we look to try to promote robust funding of the very civil rights minded

lawyers that we were talking about when we talked about disability, sensitivity and 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 over utilized tool. >> i think one of the things that, recognizing that this is an issue that state courts oftentimes do, one of the things that congress and federal government could do to assist us to try to help incentivize states to make changes, and one of the ways we can do that is through court improvement program. senator you were a cosponsor on the 115th congress senate bill 170, which is the -- prosecution act and in that bill there was an authorization for demonstration grants to the state. they would prove that model that would begin to make

changes and systemic changes including data collection, evaluation, best practices and unfortunately that program has never been funded so we don't have the data we need. we don't have the demonstration projects that can really show -- texas did it on its own, but the state legislatures and not put the funding in their, so 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. just with looking at least restrictive alternatives and things like that. but i think that is really a way to begin to change this conversation and begin to incentivize states to take a look at that and without the funding i worry about whether or not that it's possible. >> ha i agree with what has been said. i think providing support for states to expand alternatives,

to collect data and all of that is really important. i think at a very high level, would congress can and should be focusing on is what it can do to dramatically reduce the number of people who lost their civil rights and civil war bodies permanently through the system. from my position, that has to be the sort of guiding principle, that people having been stripped of their rights has a bad thing, and how can we make that happen less? so i think there is room, there are clear federal constitutional rights -- issues. there is room for congress to act on that and enforce rights to notice and opportunities to be heard, the right to counsel has a combination of procedural

due process rights and taking into account the reality that the person has disabilities, that it could be justified as a reasonable accommodation using the a.d.a., the american disability act to say if you have someone who is alleged to be incompetent, unable to direct their own life, then, and you're taking that seriously enough that there is 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 is such a disconnect. so there's a lot of ways to think about it and use federal constitutional powers and hooks to make the due process side of this much stronger and to build in alternatives to that. it's not really either or, law or are you doing support of decision-making.

i think it has to be all of a piece to 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. just saying you are on your own, there is no guardianship, but there's no support either is not realistic. so i think there is a lot of creative ways for congress to engage on this and to break some of the business as usual, which i think could be a real problem in the system, that people sort of are used to doing things the way they have always done them and they have incentives to do that, and they have -- people have psychological bias eased to keep doing things the way they do them. and there is room to really shake that up and it really needs to be done. to see >> doctor kripke. >> thank you. without communication there is no cell direction and when people cannot 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 has a right under the americans disability act, for the people's ability to choose how they communicate and to have their communication accommodated, whether they use a pointing on a let her board 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 can enforce it better and clarify it better to help for professionals working with supporters, that does not violate hipaa another can rely on decisions that are made with support. >> you know, it strikes me in

what you were describing. as a kind of federal right of action, including the right to be heard and so forth, and periodic review so maybe that's one of the areas we should be exploring and the absence of data and information. that something certainly the federal government can do. we are supposed to be doing it on crime. there are a lot of holes in that system. lack of reporting. many instances. it would have to be enforceable. and then maybe some standards for guardianship. but i agree with you, this is slayton, that the best way to incentivize would be to provide support for state courts. in connecticut it's a probate

court. it's a separate court. i don't know that other states, and they are almost an independent branch. they have improved greatly over the past years and there have been reforms in the system and connecticut. but there is still a need around the country, i think, for additional data collection and reform, and incentive for those states to do more. you know, i was struck by a recent series of articles in speed news that highlighted some specially agree just as examples of repeat players in the guardianship industry who frequently take hundreds of clients and make millions of dollars, and very often neglect basic responsibilities, and

duties. in particular the stories identifying a rebecca who quote, made millions while controlling the lives and finances of more than 500 people before she was charged 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 the office they found urns containing cremated remains of nine former warts on display. and quote. maybe i will ask you, in your experience, are there instances of these kinds of lawyers we are talking here about lawyers who fail in the responsibilities in that criminal way? or bordering on criminal where

the legal profession itself or the courts or someone should be exercising greater scrutiny? >> in texas, one of the things that texas did was to begin the regulation of private professional guardians. so you've got family members and friends and i talked about it in my testimony. the first reform that was made back in the early 2000s or mid 2000s was to begin to require licensing, testing and regulation of private professional guardians. putting limits on the number they could have. requiring certain education and having a complaint process where someone can complain and there would be an investigation. 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

we have had situations in the state where those private professional guardians have abused that responsibility, and then have their license revoked and even recently federal -- state criminal charges against that person for abuse of several of the persons under guardianship. >> i think there are these high-profile stories that i've heard of of people who report really egregious criminal or bordering on criminal conduct by guardians and report that there is not a mechanism to complain about that. i think one part of that is that we should have better mechanisms where people can complain. but 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 absolute power corrupts, absolutely, and we are building up a system in guardianship where people are invited to do things like that, and many people won't, most people won't, but it is sort of a built in risk if you are going to give one person such extraordinary power, unchecked on a day-to-day basis, even if there is some reporting. you can go along unchecked for a long time over a person with disabilities. >> i would just note that in 2018, the senate special subcommittee on aging -- i am 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, and they found many of the same themes that i report on east he. i'm sure you know. and so i would just highlight again, we have been talking about people with disabilities, with injuries to, 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 the courts would find it very difficult to make distinctions among these people, which again calls for the need for standards, maybe some right of absence with the federal right

of action. >> can i just add one thing to that? i totally agree and when i talk about disability i am including people who age into disability. 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, other disability space. i totally agree. but it's a different experience. you age in disability, it's different than having a brain traumatic injury were to be born with a disability. it is important to be mindful of that full range of experiences and disability. >> i would also add that i do think there is a lot of misunderstanding around what the iq test does or means or doesn't mean about someone's capacity. there is a lot of misunderstanding about with the diagnosis of dementia is. i recently coauthored an article that looked at supporting 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 are aging, your natural support network may fall apart. you may be more isolated. when you are talking about a question of disability, building capacity when you're talking about diminishing capacity. have you plans for that? i do think there still remain options other than guardianship within that context. >> great. i think we have taken a lot of your time. i really appreciate your generosity and giving us that time. and i want toi want to thank agz for sharing your personal story.

it's personal to talk about an experience like yours. we are 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 that the government could play in and some dividing -- incentivizing reforms and enabling better data collection so that we are dealing with a little bit more of a known challenge, but we know that there is a need to strengthen state systems to provide alternatives. i think that is one clear theme here. there are options. the very straitjacket approach, of conservatorship that it can take. we need to improve oversight so that there is independent scrutiny. and maybe some best practices and data collection among

states and with the federal agencies. for me, it's a former prosecutor enforcement, i think a number of you have noticed that there are laws already, i think, as you mentioned most recently, laws that may be an enforced right now, because we don't devote the resources and we don't give it enough priority so i would like to take thank all of you for devoting your lives. this is not a sideline for you. this is your line of work. and it is very, very profound. i hope that we can achieve some changes and laws that are worthy claudette -- your courage and experience. courage and experience that you have all devoted to this very, very important area of our law

and life 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 supportive decision-making option might be more appropriate and more valuable to us. so again, my thanks to you. we will be in touch with each of you. we are going to keep open the record and case any of my colleagues have written questions for you. we will keep open the record for a week in this hearing, but i can assure you that we will be back with each of you in the course of our considering potential federal reform. with that i'm going to close the hearing. thank you very much.

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