a senate judiciary subcommittee held a hearing on the need for changes to conservatorships and guardianships. witnesses shared their experiences living under a guardianship. pop star britney spears upcoming court hearing in her 13 year conservatorship was also

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the need for reform and it is a topic of critical importance. i'm glad we have such expert witnesses to talk about conservatorships or as they are known in many states

guardianship. 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 put through a lack of fundamental due process, people who could care for themselves with some additional support become entrapped in a conservatorship. in recent months, one conservatorship has captivated the world, revealing the deeply restrictive nature of these

arrangements and just how easily they can be abused and how difficult it can be to escape. of course i'm talking about britney spears. we know britney spears has an undeniable music superstar and has been and will always be a cultural icon, but we can't forget she is also a mother, a human being, worthy of dignity and respect. for the last 13 years, she has lived under a conservatorship. that any arrangement was initiated out of a concern for her mental health, but as has been reported and she 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 showing. she was isolated, kept away from family, friends and her broad support network. she was financially exploited, spied upon including with a listening device in her own bedroom. she was medicated against her well including being forced to be on birth control. she was even denied access to her own children. yet through it all she released four albums, headlined $130 million global tour and starred in her own las vegas show, so she was far from being incapacitated as people would ordinarily know it. for years we now know she tried

to end her conservatorship only to have her wishes ignored by the court. sadly we will hear this afternoon that her story isn't a singular or isolated incident. 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 other conservatorships around the country. in fact there are many others whose names and stories we often don't know. they continue to experience this conservatorship trap. we are learning as many of us

have seen in our own legal experience that frequently it is imposed with little or no notice and have no consideration of other options. many people under conservatorship arrangements are not able to hire their own lawyer and instead are left to a court-appointed lawyer. may they might not understand how restrictive the arrangements are unhealthy do not object. many don't realize or are not made aware of the fact these conservatorships are difficult to change in any way let alone to end. it's a big deal for a lot of people in 2016 the 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 connecticut there's about 20,000 conservatorships and about 4,000 new ones every year. these numbers likely only represent a snapshot since most states don't have a data collection system on conservatorships and the data they do collect varies from state to state. this afternoon we will hear from witnesses who will tell about their experience living with and fighting against conservatorships and they will also tell us about how there were other options, better alternatives to these legal straitjackets and they may be

available to people who can do without a conservatorship. one alternative that is gaining increased prominence is supportive decision-making. i look forward to hearing from the 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 battle is literally tomorrow. while she continues to fight to make her own decision and live her own life, we can and must fight for reform in these legal straitjackets, arrangements that are potentially abusive and certainly a disservice to many people that are under them and that is why i am so pleased the ranking member and i could come

together to hold this hearing and i hope we have a productive conversation to find common ground to identify ways for transparency and overall reform of the current conservatorship system. and let me pose a couple of initial thoughts to get your reactions to them. first it's clear we need to strengthen the systems to ensure alternatives to this kind of legal straitjackets 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 senator casey and warren have begun considering that data issue. we need to consider strengthening federal enforcement. the department of justice civil rights division already has a disability rights section but it has not historically focused on deprivation of rights and abuses in conservatorships. maybe we need that kind of effective oversight and intervention. the scale and scope of abuses that we are seeing now demand a response and those countless people who are victims of abuse because of conservatorship need protection. i look forward to hearing from you and working with colleagues as we explore these alternatives and i want to take a moment to

extend a particular welcome today to nick clouse who is here to testify about his own experience. we welcome you here. you are living as a subject of a conservatorship and your fight to have your rights restored are an example of courage and we welcome your, again, demonstrating that courage to share your story with us today. i will now turn to the ranking member senator cruz. >> thank you mr. chair man 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 and opens our eyes to issues that are by no means

unique to that individual that that previously had remained hidden from the public. that's what has happened with britney spears, one of the most iconic pop stars of time who's 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, the court appointed conservator has made all the critical decisions in her life even though she's a grown woman that's 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 or

career, her own health or finances. she has fought this conservatorship but it seems that each critical juncture the system has been designed not for her benefit but to trample on her rights. when it was first put into place for example she tried to hire a lawyer to fight the conservatorship but the california court throughout 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 copy of the medical report she didn't have someone on her side to challenge that determination and as a result she was placed in a conservatorship even though there was nothing to indicate the lack of competence that should have been required to justify for one week much less

for 13 years. she's 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 the conservator didn't want her to have children. that is not somebody else's choice to make. that is grotesque. this type of forced prevention of childbearing and forced sterilization sadly goes on all the time and oppressive nations and communist countries like china and sadly it has an ugly history here in the united states but few of us would have believed that it was happening in america today. given recent changes including the first ever public testimony

in a conservatorship case. britney may be able to get out as early as tomorrow and if so, that will be a great victory for justice but for so many people across the country, there conservatorships are likely to continue under the same system or similar as the one that has trample on her rights over a decade. there is 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 is all about the money and control of the assets in that conservatorship. conservatorships can have their place. they can be necessary and

appropriate and help protect individuals who cannot care for themselves whether because they suffer from a severe developmental or intellectual disability or injury or illness such as dementia we rarely hear about conservatorships where honest and conscientious courts and conservators act in the best interest and in responsive to changing circumstances. those cases don't make the news. unfortunately, they can also be abused. they can deprive individuals of rights, liberties and opportunities we protect and respect the personal liberty and fundamental rights and the right to make decisions many of us

disagree with or find a responsible. whether they have such diminished capacity that the law has to step in and protect them. and that means ensuring that the conservatorship process affords full due process protections from basic steps like providing adequate notices of the proceeding to ensure that individuals have the right to counsel and burden of proof rests on the state. i talked a minute ago about britney spears case. for the court to throughout the lawyer based on a secret medical report that she couldn't access, the lawyer couldn't access or be charged is something [inaudible] it's not right. it's not how the legal system is

meant to operate. instead, we need to ensure that there is ample opportunity for people to contest conservatorships. we are fortunate today one of the witnesses will be able to speak firsthand about how difficult it can be to terminate a conservatorship. and whether individuals have reasonable access to those alternatives that could include supportive decision-making which allows impacted individuals to form a support network of people they know and trust and consult with it could also include the use of the representatives, special needs trusts other

states have instituted similar reforms. the britney spears conservatorship has brought to light real issues.

if the process can deprive someone with immense celebrity and wealth and material success of fundamental liberties, then what chance does the average american because of what has happened under california laws and courts, states all across the country should be asking themselves what they can do in this area to make sure that they are not 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 and in today's polarized environment, there are many issues on which the two parties disagree and which chairman blumenthal and i disagree and i'm sure we will again in the future but i'm glad we 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. >> i will second the remark that he made perhaps somewhat unusually we are in complete agreement and also in agreement on the witnesses we invited today who are really impressive for all you've seen and done and before i introduce you for the testimony i would like to do a short video that will demonstrate the fact that mr. clouse and ms. spears are among far too many people have been impacted by unnecessary or abusive guardianships. we are going to have this video played now if we may.

they are 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 will give you a flavor of what their experience has been. >> they took all my rights away, the right to vote, the right to get married. before, i was able to go out with friends, go to the movies, go to the mall, volunteer, do a lot of volunteer work. after i was put in the guardianship i became fully restricted, couldn't go see my friends or 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 supportive decision-making agreement and being able to make my own decisions with people i trust. i was in a group home and didn't want to be there.

for a long time i didn't like it. i like to go places. i felt like i was in prison but now that i don't have the guardianship -- >> i found out about it before the hearing and i told my parents i didn't want to lose all my rights and then the supportive decision-making would allow me to get the help i needed to make decisions on my own. they got more information about the decision-making and we decided to use a power of attorney for finances and health

and everyone agreed to keep my rights. >> the judge placed me under a professional guardian. the 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 didn't even take into consideration of where i wanted to live. she didn't even let me get my own clothes. i am so happy that i am off the guardianship so i can live my life. >> i grew up in a state institute and 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 ended the guardianship. i have several 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 like how to manage my money and what was important. the judge didn't like me having a debit card. she also didn't understand why my mom was having me save money for tuition. i wanted to go to school, but she said we spent my money. i did not feel that the judge treated me like a human. she never talked to me.

the judge wouldn't listen. i am now working full-time and going to college. i manage my money and make decisions with 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 the video and to our staff that recorded it. i will now introduce the witnesses. nick clouse is 28-years-old and he's 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 and previously worked as a welder and a 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 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 the story that i've gotten wrong so far when you testify. zoe brennan-krohn is an attorney at the aclu disability rights program. at the aclu she advocated for conservatorship reform and the necessary protections for disabled people, civil rights and civil liberties and also

worked extensively to help people with disabilities and use supportive decision-making to expand public understanding of the risks and civil liberties and harms of guardianship and the potential of alternatives. she is represented and advised people seeking to get out of guardianship and has been an amicus brief and britney spears conservatorship case and has drawn more than 20 disability and civil rights organizations. that brief has been joined by that many and she's highlighted the disabilities rights and aspects of the case and urged the court to allow to select a lawyer of her own choice that she's now been able to do.

morgan is the legal director of quality trust for individuals with disability and also served as the lead project director of the national resource center for supportive decision-making. she's 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 extensive experience also includes compano representing an adult with down syndrome infighting for her right to engage in supportive decision-making as well as representing the first senior in dc to have her guardianship terminated in favor of supportive decision-making. doctor 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 is the vice president of conservators at the national center for state courts. a former state court administrator as well as past president of the national natiol association for court management. mr. slayton has been appointed 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. he's helped lead reform efforts in texas including supportive decision-making and is an advocate for increased regulation by the state. if you would rise i will administer the oath. do you solemnly swear that the testimony you are about to give is the truth, the whole truth and nothing but the truth, so help you god? >> thank you mr. clouse, we will 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 someone might take advantage of me if i were to receive a large soft money from a personal injury lawsuit, my parents convinced me that 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 was restricted might have meant to 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, chelsey and the mother of my child. the symptoms had improved by that point about my future of the vision was clouded by constantly being told but i couldn't do but when chelsey looked at me she saw who i could become. on valentine's day, 2016, i asked chelsey to marry me. i was excited to start a family but my parents were extremely hesitant to let me work and let alone get married. two months later we found out chelsea was pregnant. this was the best thing that had

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'd moved into chelsea's house, which we still live in now. i work full-time as a bio technician at a nearby ethanol production facility. in december of 2016 i became a father but in many ways my parents still treat me like a child. i had no control over my paychecks i earned and had to get permission from my stepfather to buy diapers and formula for my daughter. my parents 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 wasn't allowed to make them for myself. my parents finally allowed chelsey 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's and i and basically told us the guardianship was unable to go away and they had the power to fight if we ever contested it. when we heard about the indiana disability rights for protection we 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 because they hadn't accepted my case and offered to represent me free of charge, i'm not sure if i ever would have had a pass out. on the petition to terminate guardianship filed january of 2021, my parents refused to even consider 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 legal guardianship. sorry, i'm out of time. do you want me to finish? >> 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 but i

have a wife that is my best friend and biggest supporter and a healthy child who is the light of my life. close friends and family and a career. if it was this difficult for me to be released from unnecessary guardianship, i can't 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 disabilities rights to enforce those protections. thank you again, senator blumenthal and senator cruz and the rest of the committee for having me. >> 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 are going to go now to

ms. brennan-krohn. >> thank you. tough act to follow. the chair blumenthal, ranking member cruz, thank you for inviting me to speak and convening the hearing. my name is zoe brennan-krohn and i'm a staff attorney at the aclu disabilities rights program. britney spears high-profile case battle to get out of conservatorship was the first time many people in the country heard of conservatorship or guardianship and i will use those terms interchangeably but guardianship is a widespread phenomenon it's estimated 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 get out is astonishingly routine. guardianship is fundamentally a civil liberties issue. it is the government stripping away a person's civil liberties

and autonomy. it's 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 to earn and spend your money or what medical care you will get. and guardianship is fundamentally a disability civil liberties issue because only people with disabilities or perceived to have disabilities risk this type of civil death. people with intellectual disabilities, psychiatric disabilities and older adults who age into disabilities like dementia are at particularly high risk for guardianship. guardianship is a major invasion envisioned by the government into a person's life. it's dangerous to be in a guardianship. the 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 guardianship's are acting with the utmost good faith and

integrity but systemically guardianship is dangerous. yet the harms and risks stand in alarming contrast with the routine approach that courts take and establishing them. guardianships are also established as a matter of course with few of the due process protections that should accompany such an invasive loss of rights. notice opportunity to be heard, access to counsel and mechanisms to end the guardianship are often entirely absent or at best inadequate and inaccessible. many people have lost their civil liberties without having any idea of the gravity or permanence of guardianship. we need to change this system. we need to strengthen due process protections and treat guardianships like the invasive last resort that it is. and we need to make changes beyond guardianship, towards the world in which far fewer people are in guardianship and far more people with disabilities live self-directed autonomous lives

with the supports they need and want to do so. part of this requires changing our conception of independence and recognizing that none of us live truly independent lives. we are all interdependent. we all rely on others. friends, lawyers, staffers, reminders on our phones, to live our lives. people with disabilities use the same type of support. some people have more significant needs but also have preferences and wishes and

>> for the interest in this issue and holding this hearing and i look forward to your questions. >> thank you very much. >> [inaudible] >> you need to turn on your microphone. >> i did. thank you for that. thank you for the invitation. i am the legal director of the individuals with disability but the monitoring

organization also the national resource center for a supportive decision-making created in 2014 and is dedicated to advancing decision-making rates of people disabilities and older adults training and technical assistance research and practices. to provide legal advocacy with people disabilities with less restrictive options for decision-making support and to over restrictive guardianship a cooperative agreement with the national council disability analyzing the impact of guardianship and alternative through the u.s. constitution and federal civil rights laws and policies those reports with the administration that can inform the subcommittee deliberation also we were involved and in

may of this year and with the national and public spotlight on the problems of guardianship and conservatorship system. in almost two decades of working on behalf of many people impacted by the systems they know that ms. spears is not alone we have seen the kinds of restrictions she reported experiencing and with different diagnosis or disabilities or life experiences social economic background and we know to direct experience how hard it can be to get a guardianship terminated. today so far you've heard directly from the wonderful videos that you show but there are so many more stories from people around the country and those testimonials that are the most important and compelling reason why the story was to happen now emphasize the need for federally supported reform to address serious due process problems with the

conservatorship systems in 20 years of legal practice i have seen the problems first hand over and over and over again and to pose significant and untenable challenges to people facing guardianship positions or having the rights restored. we welcome federal scrutiny of conservatorship systems in the subcommittee for leadership and the conversation and responding to the outcry for change and do not reform slowly on efforts to make guardianship and conservatorship systems better or improved. more investment must also to promote the avoidance in the first place and over utilized legal tools to have the effect of removing a personhood from individual. with concrete and if i said on —- decisive steps to overbroad

the guardianship including those links to schools, healthcare providers, adult protective services and the legal profession among others. and without less voluntary options with decision-making to advance the self-determination does not involve the court. it occurs when people use their family friends to help them understand the choices they face so they can make their own decisions and allows the person to retain their legal rights for getting support from those they trust. already clear that mainstream disability rights discourse and gaining traction for other adults as well with the state legislation and court decisions terminated for guardianship. also recognizing and endorse of the national organizations and federal agencies. but more work is needed to ensure it is a common practice making sure it reaches with people from across the country. promotion expansion and advancement should be

considered one of the ways to address the problem identified here today. my written testimony includes additional recommendations and in addition congress should urge the department of justice to issue guidance to clarify the decision-making is a reasonable modification that public entities and accommodations with the american disabilities act congress should ensure that already knows associate with the lantana disability education act are not pipelines and funding technical assistance and demonstration projects using alternative ships to promote training. congress should support programs that fund grants with those implementing support decision-making and congress should support qualified legal support programs and steeped in the advocacy experience to provide legal assistance to individuals who try to avoid guardianship and have rights restores and congress should fund incentives to support for

what we spoke of and also encourage the continued funding of the national resource center and thank you senators for the interest and i look forward to answering your questions. >> . >> members of the subcommittee it is a great honor to be here to talk about conservatorship. people with disabilities have the same freedom to pursue their dreams as other americans. my name is director of - - i'm from the university of california san francisco. i provide primary medical care to some of the bay area's most medically fragile and behavioral complex residents. i am the vice chair of

communication first a nonprofit focused on the rights and interest of people who cannot speak or who speeches unreliable for communication and all such have personal experience as a parent my daughter cannot speak with all of the activities of daily living director of life and healthcare and then to pursue conservatorship is that they fear their loved one cannot access medical care or family members will be able to provide support. in my experience it is not necessary to deliver high-quality medical care but this is true even for people with the most complex disabilities. number two, conservatorship doesn't make people safer or prevent abuse. in fact people with disabilities as well as conservators can get trapped in a situation.

decision-making is better than conservatorship. that encourages healthcare providers to focus on who is authorized to make a medical decision instead of the patient in one case a patient came to me with her sister who thought something was wrong but did not know what i suggested we put her in front of the keyboard to see if she would type. asked her to show me how she said yes. i showed her anatomy charts to see if she would point. finally i said touch hurt and she put on her right upper abdomen and based on that i got an ultrasound and 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. control over one's life is what makes someone safe.

most conservators are trying to do right by someone they care about the statistic show most abusers family members, caregivers or trusted people that a judge may appoint as a conservator. the patient we suspected was abused by their conservator because of their privileged role adult protective services close the case quickly due to lack of proof. had made patient not been conserved her distress and our suspicion would have been enough to end visits with a conservator and to help someone else to provide for support. conservators also can get trapped in a role they no longer can fulfill as their circumstances change. i would like to try to contact conservators to reside in nursing homes are out of the country or only available during business hours or who are actively avoiding being

called. and instead of being relied on a single person single person with disabilities to receive support from family members or supporters whose knowledge in school skills and availability our best match the situation. despite the best efforts there are times we cannot clearly determine a patient's preference and in the situations we invite the people and that patients life to make decisions as a team. he address the patient directly regardless if we think they are understanding or even if they are not

responding. patients often surprises with the understanding and they behave more respectably when speaking directly to a patient. overall for the delivery of healthcare involving courts, does not prevent abuse. supported healthcare decision-making gives people disabilities control and flexibility they need to make medical decisions in a timely fashion to get the best care. thank you and i'm happy to answer any questions. spent thank you to members of the subcommittee i am the vice president of court consulting services at the national center for state courts and former state court administrator for the courts in texas. conservatorship or guardianship is a proceeding in which a court after the

termination by a judge and the capacity to make decisions independently appointed guardian to make decisions to oversee the affairs of the individual. this is the most restricted form of oversight they can place outside the criminal context sometimes referred to as a civil death penalty guardianship is meant to protect individuals from abuse or exploitation by others due to mental capacity. most guardianship citizen secular happens. they protect their loved ones with the attention to the needs of the individual but sometimes it doesn't happen. and then to remain subject to the guardianship four years and then to call for the hard work and sometimes the individual died under the guardianship that the court is not made aware of that for years. this is not supposed to happen. courts are charged with closely scrutinize proceedings beginning at the point guardianship is sought and lasting throughout. they do this by requiring

certain information, regular reports about the well-being of the individual and detailed accounting reports about the expenditures of the estate without adequate resources or staff asked to serve in the role of judge, social worker and law enforcement in the view of 55000 cases in texas the judiciary found over 5000 individuals who are deceased come without the guardian alerting the judge. 40 percent lacked reports many were uninformed of the well-being of the individual or how the guardian was managing the finances of the estate. the texas judiciary working diligently to address these issues while providing resources and make statutory changes. those include requiring attorneys and judges in guardianship cases to explore all prior to establishing and to consider the ability of individual to make his or her own decisions about residence and provide for regular review to continue the guardianship and to create a new

alternative of supportive decision-making the first state to do so statutorily. so after finding 90 percent of all issues texas now requires family members and friends to register as guardians with the state a criminal background check and to participate in online training of the responsibilities prior to their appointment. texas has also appropriated two.$5 million for those to assist statewide to monitor guardianship and for flop fraud or exploitation and lastly texas continued its reform by providing additional authority to specialize guardianship ports and increasing ability for financial records from financial institutions. and then to improve guardianship cases the and

then to make recommendations and interesting at least 40 resolutions and then to put those into action and then to be responsible for the oversight of the guardianship system there several areas where the federal government could exist social security represented are not always the same person as the word appointed guardians and then to monitor those to manage a portion of the individual estate or well-being while another not under the state court's control manages another portion even when the state court removes a bad actor for cause. it is not honor state court orders and limited the exchange of information and the social security administration. second bad actors who run into issues and the individual by one state court make them in

the office to another state all without knowledge of the issues of another state pretty and giving congressional consent to the interstate compact with the national registration guardianship is important. and with the improvement program and with the extremely successful improvement program in the development of best practices and in collaboration to improve management and outcome of guardianship. and thinking to members of the committee. we will begin the first round of questioning that a vote has been caused by will begin with a round of questioning i will vote while senator cruz asks a round of questioning. and then to make a short

recess and then follow up with more questions because your testimony has clearly raised a series of very profound and important issues that we should discuss to make our record of. i will just tell you a lot is going on in the united states senate today and this week. i apologize my colleagues are not here. they may appear but there are all kinds of meetings and floor proceedings going on. have no doubt what you say will be read and not only part of the record but i am hoping it will give rise to action in the form of proposed legislation and that it will be bipartisan because we have that consensus here. let me begin, if i may. you have worked consistently, since your

injury as a warehouse and fork lift operator and technician and clearly have been productive. and also you 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 with the guardian or conservator or happen to approve your purchases of diapers and baby formula. could you expand on the impact of your financial decision? >> it went as far down to as i

had to ask for many every time he wanted to make a purchase. that could be even just getting some gas to get to work. i would say more times than not any of my request would be denied perhaps. >> but they were denied when you are asked to spend money. >> yes. my fiancé at the time had to pick up the cost. >> so she was paying for your expenses because the conservatory or guardian was denying. >> yes. >> how did that make you feel? >> worthless to be honest. >> i can understand that. >> i work all those hours and then not being able to bring that money home to my family.

>> you are earning the money that you were denied the right to use it. >> yes. >> that is pretty striking for me and i wonder if i can ask you whether that happens a lot? is that common? i am struck by the fact that those paychecks from the job pay the legal fees among other things for the periods lawyer and that strikes me as a stark conflict of interest among many other indignities that it caused. maybe you can talk about that quick. >> we have as many people. we don't have comprehensive data on anything. we don't know how many are in

guardianships so we don't know statistically how often this happens. but a guardian or a conservator having control over the persons money is a very routine part and how that control is exercised is very much in the hands of the guardian who can make choices. out of spite or who thinks the person should be prioritizing other things. they think they are going to the gas station where it is more expensive. these types of experiences where it is creating dependence where it is not necessary and another real harm of people financially but also emotionally as well. we can testify how this affected him as very compelling and unfortunately is not an unusual situation.

>> that one word, worthless is haunting. >> yes. the idea of guardianship is supposed to be a benevolent way to help people but it is so far from that in so many cases with outright abuse , even in cases where it isn't that the message you are told that the child your choices and wishes don't matter is extraordinarily compelling message and very harmful. >> in some ways it is worse than treating as a child because a parent coming from appearance of four children tried to develop decision-making and encourages someone to make a decision even are you may think as a parent not the best thing to do with the idea of the decision-making but you make from mistakes.

it is treating capacity and what you can do right now is all you can do right when they turn 18 those with mental disabilities in the guardianship pipeline and to be told when you are 18 many of us can think back when the judge expect how things are going and then to improve. that is presumed not to be what happened for those a disabilities and that is simply not true. if you cannot count backwards from 100 by sevens and you will not do anything your life.

lets you do that for a job that is not a core life skills. >> i have a lot of other questions i will pursue them in turn to senator cruz. but it was a floor speech at 4:00 p.m. so i will let him do his questions that i will vote and i will be right back. >> and to very much of the senators are not expecting to count backwards. [laughter] i was told there was no math in this hearing and i am concerned you change the rules on us. >> a share that. >> the senate would be a much smaller body that was a test required for continued membership. thank you to each of you for your participation. so to be reminded 22 years ago in 1999 i was a young policy

staffer on the george w. bush campaign. and one of the policy responsibilities ahead focusing on disability issues. and then working with governor bush and disability rights advocates and with the freedom initiative which hammered out on a laptop with bullet points and then it was enacted into law. and then guiding principle is individuals with disabilities like everybody else, want to be free. want the maximum autonomy possible maximum independence. not everyone is capable of complete autonomy.

from the extent possible everyone deserves that has the right to control their own life whether we agree or disagree with the decisions and this discussion that has powerfully highlighted that. thank you for being here. it can be a daunting place telling your story i'm sure is not easy. thank you for your courage there are people at home watching this on television. and to face a traumatic brain injury or some other accident where they are struggling with the repercussions and then maybe people and conservatorships who they themselves are wanting to be free of the constraints. and your courage inspires

people. so i appreciate that. you are a grown man and listening to your story with gainfully employed with difficult jobs and your husband come your father you latch for a significant period of time the legal right to make decisions in your own life. for a lot of people that is the astonishing state of affairs. occurred you share with this committee, while you are under the guardianship what kind of decisions and activities we are not allowed to make on your own? and how is life different after it was terminated? >> first off i talked about my

financial that i cannot make financial decisions or medical decisions. i was not allowed to decide who i could hang out with or where i was allowed to go. i was treated as a child in every aspect. or even down to what phone plan i could beyond if i had a phone. since then it has been life-changing. the first thing i did is i could fill up my take with gas and not have to worry about my card being declined even before swiping it. and i haven't done anything irresponsible since it was terminated that but then like

a normal adult and finally watching my hard earned paychecks come in. and actually feels amazing i lost that sense of worthlessness. and august 24th. >> thank you for sharing that progress someone who just celebrated 20th anniversary. what you said is right you haven't done anything irresponsible you may be the only husband on planet earth you can make that claim. [laughter] i would not be so bold to say such a thing. we heard about the constraints faced and we also heard about the constraints so in your experience how unusual are

these constraints and how does the story compared with the other clients that you work with? >> i wish i could say they are uncommon stories but they are not i been practicing in this area for around 20 years and i have seen many people in the same situation having that health control or psychological control over the psychiatric treatment. not even being able to travel all of these other issues are very common and affect people with all kinds of disabilities and ages. wish we could say there are outliers but unfortunately they should be very restrictive and not the same oversight that people think there will be in the

guardianship pretty thank you go to court and have a court to oversee this. so unfortunately there is a lot of stories like this. >> talk about the lack of oversight in the lack of due process protections. in your judgment what are lacking? and how can they be improved quick. >> . >> in a lot of cases they are almost all lacking but they are launched and implemented and imposed as though they are very routine pro forma circumstances but they are

not. a very state-by-state but this is a precise process in the starting the base at the notice. and they address where the future guardian is living. that means it has happened in that box is checked. people don't meaningfully understand what will happen. often the people seeking the guardianship don't either. and that start the process because that's what they think they have to do because that's what a family member told them. so they can be seconds long may be you are not there.

your voice may not be heard or no opportunity to say i don't want this or i don't like this. >> so to talk about the facts of the britney spears case denied a lawyer she was not allowed to see a lawyer so how common is that? >> . >> i have seen a circumstance before were it is difficult for the person that has not been given accident on —- access for what is used against them i cannot say how common it is but what it takes is advocacy but the circumstances like you described with those expressed wishes to challenge the evidence being used against you does not appear to be present. and then it highlights the fact and then to have access

of attorneys of your choice and with your expressed wishes. because attorneys are advocating from that person's best interest or they can be very insular. and those that are not based upon with the civil rights focus. >> speaking of the alternatives to conservatorship can you describe the efficacy of those mechanisms to deal with someone with diminished capacity? >> . >> we work as a team to deliver healthcare with developmental disabilities or interdisciplinary team -based care are not just the healthcare providers but the people who provide tech on —- direct support and with

personal assistance and day programs and everyone who was in their life has a part to recognize when someone is ill and then to support the person to make the right decision for them to carry out the plan. we work together as a team to make healthcare happen and when you have a conservator it's only one person that may or may not be a part of the day today life and then they make decisions that they cannot implement and is not into with the patient's. so we work together collaboratively and toward a consensus instead of putting decision-making on a single person in a single person's

hands. >> and then to identify the need for state guardianship reform to see the implementation can you walk us through the state lower form how they have greater due process protection? >> one of the things he started to do is have a conversation with people with the guardianship advocates to identify and as noted one of the keys is what has been described as a pro forma system to full guardianship is the last alternative that is explored so now texas law requires that every individual filing for guardianship all must consider all supports and services to be offered and then the judge has to be find

by clear and convincing evidence there are no alternatives so obviously it is a high burden of proof to get there. then when i would say about the situation it is often someone with the tbi or has a stroke often times is place but their conditions improve so one requirement is when the doctor is doing the evaluation for guardianship they have to state in their report the likelihood of improvement in the timeframe that is expected in the judge is required to reevaluate for guardianship and then to do stuff so it puts in place the due process protections where this is continuously occurring. and then there was a whole series of reforms we can go through here and spend some time but another big one is the idea of making sure family

members and friends are adequately informed of their responsibility is and is not what we have found in previous testimony that the majority of the issues that come up when a family member or friend guardian given the benefit of the doubt, maybe they don't know their responsibilities are the limits or what options they have from poor decision-making rather alternative so to make sure they are aware of the situations before they are in a guardianship is important one more last thing. the idea of the bill of rights and it is an important development in texas to point in writing that a person undergoing guardianship has rights and they must be afforded to them and every year in conjunction conjunction with the report that we provided with the bill of rights again so they understand they had a right to petition the court terminated

and that is things that have been really important and has made a difference in our state. >> so that is helpful. let me if i could ask hypothetical which britney spears conservatorship is under california law that given the reforms in texas with a similar fact pattern risen how would the case proceeded differently. >> first of all let's pretend they were in place before it was established, there would have been a pretty significant about whether or not there were not other alternatives more appropriate or may be limitations of the guardianship. could there have been supports and services put in place to satisfy the concerns of the court or the medical situation? so whether or not it'd ever been established in the first

place. the second thing is there would have been under these reforms, a more natural review of the need to continue the guardianship. there has been difficulty in getting that looked at and in texas it would be a more natural approach and the judge would have to find by clear and convincing evidence in need continues and there are no least restrictive alternatives more appropriate. >> the time is expiring so i will run and though and handed the gavel back to the chairman thank you for your testimony thank you for your story it is powerful and also to your wife. thank you as well spent thank you senator cruz you'll miss my counting down by seven. [laughter] >> you practice. admitted. [laughter]

>> thank you for your patience. i would like to continue the topic i was beginning to explore. so let me ask all of you, on the issue of financial exploitation that affects not only people disabilities, but older people, maybe i can ask all of you and you are free to talk about this issue as well and how common is it together some examples. >> we look at 55000 and guardianship cases.

and i want to pause and say the vast majority are by people who are trying to protect their loved ones. as well as pointed out the ones we hear about are the bad actors where the situation is good. so we in texas have found over and over again financial exploitation occurring. so basically we have a guardian whose license was revoked by the oversight board after an auditor revealed they had removed $10000 in cash withdrawals. and then withdrawing money from the person's estate. we have a situation where a whirlpool time was installed in the guardian town using the

proceeds for the estate of the guardianship. over and over again, examples comments like uncovering a terrible onion every time you peel back the layers it gets worse and worse. and it's more frequent than we word like and be comfortable with even if it is not extensive there is plenty going on and a concern for all of us. >> i absolutely agree. we don't have the data. but the system is set up so it's very easy to exploit someone financially. but i also want to say there is out right financial every on —- abuse and fraud and is very significant. that there are very large number of cases where maybe it

is not outright fraud, but you have someone who is controlling the persons money for no particular reason are certainly not any based on this is what i think we need to do to help you manage your own money. that shouldn't be underestimated that evening cases you are not putting a hot tab then your house, you can still be causing a lot of financial harm by not supporting the persons development and by mistreating the psychological harm you have to ask to fill up your car with gas even if it's all still sitting there and waiting for you it is extremely widespread. >> i think financial exploitation is unfortunately very common in conservatorship.

you have to go to a judge to make a change to support the decision-making. however if you don't like how someone is managing your money you can change the authorized representative on your account. you can change your representative payee with helping you with your bank account for your ssi check. you can change for trustees who are not acting so trustees, conservators often perform well and then developed disabilities themselves as they age and then to support the decision-making in a conservatorship it's a more complicated process. >> . >> talk about the legal tools

with the powers of attorney and that the representative all of those tools can be misused and it is about how do you create the support network to create the checks and balances and with guardianship and conservatorship, the they will have a great power that doesn't have the oversight required and then we can have some egregious cases of financial abuse. >> tell us how your conservatorship and it and how you managed to end it. >> i could get in contact with the iad are and and

immediately viewed my case as special and said there is no need for a guardianship just by talking to me and hear about my experiences and my jobs i have held my guardians often made me jump through hoops to get things done and they set up wanted me to see a psychologist and then after a few weeks of going back and forth we finally gave in and then without a doubt a psychologist said there is no need for a guardianship in her report so after that we could

get the guardianship terminated. >> was their opposition to terminate today try to keep it in place they oppose it from the very beginning and what gave them notice we were challenging the guardianship. >> how long did it take to terminate quick. >> . >> roughly a year and a half after we have served. >> and by others to comment the process of terminating guardianship how often it occurs that someone is subject to those wishes to terminate quick. >> it is very difficult to terminate a guardianship or conservative ship it's very

resource intensive speaking for people as an attorney for a nonprofit it's intensive to provide that service. people can face all sorts of barriers some don't know what to go to some attorneys refused to represent people who enter guardianship because they have concerns they are not ethically able to do that because of certain kinds of ethics rules. and then having to do with the opposing parties legal fees, there is a system that is set up under a guardianship in some states and have to pay those kinds of fees. and with those evaluations there is a tendency talking about incapacitated or traditional psychological

evaluations to me at diagnosis. some are static. you are not going to have an intellectual disability for example. has a history of the tbi. that exist. some have certain iq scores and they don't look at the options for less restrictive alternatives or those functional abilities to direct their own life or someone else to manage their own life. i have been involved. we were preparing for months. we had a host of experts to show a person with down syndrome did not need to be under permanent guardianship. six days of trial. resource intensive. it can be very difficult to germany and why we really need to rethink how people get

under guardianship in the first place. it's much easier to establish than to terminate. >> i went echo what was said. just the strength to get into guardianship is just as strong against you when you try to get out. people have no idea what they are getting into when they start. then the even if you are in a guardianship just like the spears surveillance. if you are in one you cannot have a phone. that is very common but not have access to internet or your many. you will hitchhike into town and hope you find your way to a lawyer?

just the very practical barriers to have any idea how to challenge a guardianship are insurmountable. and then a real reluctance by the courts to dissolve a guardianship. often in cases where the fact of a disability remains which is true for most disabilities they are lifelong realities. you will have a disability your whole life in many cases. but that doesn't mean you won't change or you won't learn or develop or have preferences or be able to use supports to help you that judges think of it well this person still has intellectual disabilities so what could be different and that is a really mistaken view. >> this speaks to the need they systemic procedural way for this to occur you mentioned are out of the room and ago what we did in texas

is somebody has tbi or stroke in place a guardianship but there is a process they are automatically reviewed to see if there is a continuing need with clear and convincing evidence no other alternative is appropriate. and then in the annual report of the well-being report required to be filed every year there is a discussion any review whether or not there is a need to continue that guardianship. maybe at some point this will be brought out by someone who hitchhike's to find a lawyer to take on the case that's probably less likely to be effective and then to provide a robust way to review states really need to look at ways to make that happen.

>> in 20 years of practice i have never had anyone who was able to get out of a conservatorship but i have had conservators die or develop their own disabilities and i don't know what happens legally i think that conservatorships fade away and then they carry on as if it hadn't existed. i have also had conservators who no longer want to serve in that role because they developed other responsibilities for other family members or their own disabilities and were denied by the court to get out and serving in that role which is a very intense and difficult role to make all of the decisions for another human being doing all finances, healthcare especially with a complex disability is not a small job. and i think people don't realize that they are getting into with a lifelong commitment to do that. >> for the kind of evaluation we have done by a psychologist

that is hired by the conservator or the court, i don't know what happened in your case. that i would expect a psychologist who is hired by one side or the other with the court or the conservator would have to have some professional interest in upholding the status quo. i don't know if any of you have had enough experience? i would guess maybe it is somewhat unusual when it was concluded you were able to do without it? >> we had to financial the split the psychologist. i would pay upfront because i

have no doubt the psychologist would find me competent. >> so you had to pay for the services of the psychologist yourself? >> yes or. >> it really does very upon state systems of the evaluation and how that occurs. and in some courts they have a panel of examiners or evaluators that are used to evaluate people if it is a question of capacity. i have also worked in jurisdictions where three minutes between the party. frequently in the cases i am involved in with

restoration, we want to pick the evaluator to make sure they have the same values in the way we think about disability beyond iq score or diagnosis to look at the core of the person who spends the alternative to guardianship. you can that that approach can be costly but and effective approach to seek restoration. >> let me ask you when an individual becomes aware of their right to seek for restoration, or they push for less restrictive alternatives what is the most likely outcome so that standard is clear and convincing evidence to overturn a conservatorship

and then the burden of proof is a pretty high threshold of clear and convincing evidence is not proof beyond reasonable doubt that it is a lot more difficult and a preponderance of the evidence. so maybe you can talk about an effect how the legal deck is stacked against somebody seeking restoration or less restrictive alternatives. >> yes. people who get themselves into core are a small minority who probably want to get out and should not be there but by the time you get to court it varies by state and some don't have clear standards at all but the burden is on how it works for restoration proceedings in some cases it is the person under guardianship to demonstrate they no longer need a guardianship which is

incredibly difficult the guardianship itself may be self-fulfilling you still don't know how to balance your checkbook because nobody taught you because your not allowed and then the idea but also how do you prove you can do if you haven't had the opportunity to do it. it's important the burden exist similar in texas the person who wants to keep you stripped of your rights as the person has the burden to show they should be able to do that. there are so many defaults and balls period with the default to guardianship lasting forever and we need to change some of those point so after the hearing if your guardian cannot prove there is nothing

else that they have tried supportive decision-making or that this is the only option stripping of civil liberties, that is the end of the guardianship and that is how it should be and it's rare otherwise. >> it strikes me to end the guardianship, even if you could get a ride into town or find a lawyer, having been in private practice as a prosecutor my first instinct somebody walks in the door and they say they have a lawyer would be to call the other lawyer. this is a matter of professional courtesy i have been chewed out by some lawyers for not calling them as a legislator when they tried to do something with someone who had a lawyer when that person was denied or denied they had a player.

and we all have these professional instincts about contacting the lawyer the financial variable of the logistical hurdle and professional hurdle of being unwilling to take cases from other lawyers when they represent in a lot of places that lawyer is likely to know who represents the guardian so unless you find someone like the people that are independent and whose job it is to fight for people who want restoration or less restrictive alternative, there are so many hurdles within termination. >> i agree. sometimes in that situation

you don't have a lawyer and you never had a lawyer. in most states there is 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 incompetence and they worry about ethics. lawyers don't know how to proceed with that. so they are likely not know where to go or take the cases thoughtfully with the disability comprehensively. >> let me ask, what would be

your preferred federal? >> as has been observed a number of times, guardianship send conservatorships are creatures of state law. whatever the defects and advantages that maybe by and large the majority with the overall evaluations to show but based on your experience, what would be your preferred central one —- federal forms to protect the individuals under guardianship's? you can go in whatever order you would like. >> mr. slaton talked about the provement program to incentivize with a due process protection to embolden. i do see some value and across

the united states on those issues. but again, as i did say in my testimony to also have that investment not to get to the conservatorship in the first place. so look closely at the pipeline we discussed whether healthcare or schools are the federal investment to be made to dismantle those pipelines. so looking at the public funds that are going to school systems, the number one referral for a guardianship with the recent reports and that was highlighted with a disability report and to say you need to be looking at less restrictive options and that can be special education and then family should be informed of all the options and looking

at robust transition and planning processes and students with disabilities. when you look at trying to advance supportive decision-making with other projects to reach a more diverse population a number in that developmental disability field. also those who word germany in favor of the supportive decision-making. can we agree less restrictive reaches the population as well? >> how do we promote with the civil rights minded lawyers talking about sensibility and the representation. there are a lot of investments that need to happen and the coordination to promote to the guardianship it is an over utilized tool.

>> one of the things recognizing the state courts what the federal government can do to insist to make changes in one of the ways we can do that is with the court improvement program as a cosponsor senate bill 178 which is the prosecution act and in that bill there is an authorization for demonstration grants for the state. they were pulling out models ever form that would begin to make changes and the systematic changes with data collection, best practices. that has never been funded. we don't have the data we need. we don't have the demonstration projects that can really show that texas on its own but maybe the state

legislatures put the funding in there. so really at the federal government can think about ways to incentivize through funding to make these reforms , obviously you can place requirements all on —- on that to look at least restrictive alternatives. but that is really a way to begin to change this conversation incentivizing to take a look and without the funding worry about whether or not that is possible. >> i agree with what has been said. providing support for states to expand alternatives and collect data is important. added a very high level what congress can and should be focusing is what you can do to dramatically reduce the number of people who lost her civil

rights and civil liberties to the system primarily so for me that has to be the guiding principle that people having been stripped of their rights is a bad thing and how can we make that happen less? there are clear federal constitutional rights it is due process issues there is room for congress to act on that and enforce the right to notice and opportunities to be heard the right to counsel as a combination of procedural due process rights and taking into account the person has disabilities that can be justified as a reasonable accommodation using with the ada to say if someone is alleged to be incompetent and

cannot direct their life, and you take that seriously enough there is a court hearing about it but not enough to see this person has an advocate to navigate this process? it is such a disconnect so it's ways to think about and use federal constitutional powers and to make the due process side much stronger and to build in alternatives it's not either/or i think it has to be all of the piece to make it so more people essentially get kicked out and then they find something else they are just because you say you are on your own there's no guardianship but no support either is not realistic so

there's a lot of creative ways for congress to engage and to bring some of the business as usual which is a problem in the system that people are used to doing things the way they have always done them they have incentives and there are psychological bias to keep doing it the same way and there is room to take that up and it really needs to be done. >> without communication there is no self-direction and when people cannot direct their lives that is when they the most vulnerable to conservatorship we have some really good lies that are federal laws and some may need to be clarified and enforced. communication access is a right under the ada for the people's ability to choose how they communicate and how that accommodated whether they can

point on a letter board or and alternative communication device for other ways people communicate without using speech needs to be recognized as valid we have a legislation for that but not everybody respects that to enforce a better and to clarify better to help professionals and then to violate hipaa and those decisions made with support. >> it strikes me and what you were describing and then the right to be heard so maybe that point is what we should explore and so in the absence of data and information is

what the federal government can do we are supposed to be doing it on crime and there are polls in the system and lack of recording and then to be enforceable and then maybe some standards for guardianship. but i agree with you that the best way to incentivize would be to provide support for a state court system and in connecticut it's a probate court and i don't know about other states that they are almost an independent branch. they improved greatly over the past few years and have been reformed in the system in

connecticut. but there still a need around the country for additional data collection and reform and incentive for the states to do more. >> i was struck by a recent series of articles in the speed that highlights some especially egregious examples of repeat players and the guardianship industry who take hundreds of clients and make millions of dollars and very often neglect basic responsibilities and in particular the stories identify rebecca who 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 told doctors to cap his feeding tube when police raided the office they found cremated remains of nine former wards on display. in your experience, are there instances these kinds of lawyers fail in their responsibilities in that criminal way? or bordering on criminal where the legal profession itself or the courts or someone should be exercising greater scrutiny? >> there is a saying in texas

one of the things that texas did was begin the regulation of private professional guardians your family members and friends but the first reform made in the mid- 2000's was to begin to require licensing and testing and regulation of private professional guardians. putting limits on the number they could have, and then having a complaint process for someone to complain with an investigation. not every state does that. it's important to make sure individuals who are appointed by the court interested by the court have oversight professionally where we have had situations in the state with this private professional guardians abuse that responsibility and have the license revoked and recently state criminal charges against that person for the persons of the guardianship.

>> i think there are the high profile stories i have heard of for people who report really egregious criminal conduct by guardians report there is our mechanism that one part of that is we should have better mechanisms where people can complain but i also think it goes to the fundamental issue if you give someone that much power, people will use it power corrupts. and then to build up a system and guardianship where people are invited to do things like that.

most people want but it is a built in risk if you give someone such extraordinary power or unchecked on a day-to-day basis you can go unchecked for a long time for a person with disabilities. >> in 2018 the senate special subcommittee on aging released a report with the impact of the guardianship system on the health and well-being of seniors as well as people with disabilities to be on the same themes of that report.

and with those disabilities and injuries, but i would guess these issues are very common with people who are elderly were to 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. with the federal right of action. >> can add one thing to that? i totally agree when i talk about disability i am including those that age into disability they don't think of themselves as disabled but dementia or any sort of age-related changes in the ability in my mind other

disability space. that it is different experience and to have a tbi or be born with a disability. it is important to be mindful of that range of experiences and disabilities. >> i do think there is a lot misunderstanding about what the iq tests does or means. there is a lot of misunderstanding of the diagnosis of dementia. i recently co-authored an article on decision-making specifically within the context of older adults that had dementia. there are different factors to consider within the context of older adults the support networks look different in natural support networks may fall apart. you may be more isolated so talking about a question of

the disability world and building capacity and how do you plan for that? and with the guardianship in this context. >> i think we have taken a lot of your time. we appreciate your generosity and giving us that time. and i want to think again , thank you for your personal story. it's always difficult to come in the settings to talk about a personal experience like yours we are pretty much indebted to you and your family to being here today. i commented at the beginning based on the experience case but it applies to so many we need some reforms to play apart and incentivizing

reforms to enable better data collection. so we are dealing with a little bit more of a known challenge. but there is a need to strengthen systems to provide alternatives. that is one clear theme that there are options and alternatives with the very straitjacket approach that conservatorships can take. we need to prove oversight so there is some independent scrutiny. and maybe some best practices and data collection with the federal agencies. for me as a former prosecutor there are laws already mentioned most recently that may not be enforced right now because we don't develop the

resources are given enough priority. i would like to thank all of you for devoting your lives. this is your life's work. it is very profound work. i we can achieve some changes that are worthy and all the courage and experience you have all devoted to this very important area of our lot in life experience because the chances are very good that one or more of us in this room today to be placed in a guardianship or a less restricted decision-making

option might be more appropriate and more valuable to us. so thank you. we will be in touch that we will keep up in the record for a week. i can assure you we will be back with each of you in the course of our considering potential federal reform. i will close the hearing. thank you very much. [inaudible conversations]

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row seat to democracy. >> treasury secretary janet young told center as the treasury department will likely exhaust all of its tools to avoid a default of the government's obligations if congress does not raise the debt limit by october 18. her announcement came as a banking committing oversight city the covid-19 economic loss she joined at the hearing by chairman jerome powell this runs two and half hours.