>> we are starting pretty close. the senate committee -- wow. we will try that again. ok, good. a little better. the senate special committee on aging will come to order. this is the second hearing of the special committee on aging and the 118th congress. senator, thank you for your continued partnership on this committee, as well as all the members. today, we will discuss a topic of growing national concern, guardianships of older adults and people with disabilities. the data we have suggested guardianships affect at least 1.3 million people in the united states who have a disability or an older adult. in many cases, a guardianship is a blunt legal tool that transfers all decision-making power -- often people and guardianships need permission to make basic decisions about such matters as their living arrangements, health care, and education. under some arrangements, a person living under guardianship must consult with the guardian about voting.

unfortunately, many of our existing systems, such as our schools, health care agencies, and even courts communicate to families of -- that guardianship is the only way to assist loved ones to make important decisions. however, there are less restrictive alternatives to guardianships that can increase protections for people needing assistance. these less restrictive alternatives enable a person to retain the power to make decisions that affect them and their lives directly. alternative arrangements, such as supported decision-making can provide people with the support they need to make the decisions for themselves with the support of a team. today, we will hear from experts and people with lived experience about how these alternative arrangements can help preserve

the independence and autonomy of people with disability in older adults, while ensuring they have the support they need to make key life decisions. for the past three weeks, the committee has asked for input about guardianships and their alternatives, specifically on how to improve protections and independence for people with disabilities -- for people, i should say, who live under guardianships. one individual from pennsylvania said, "the system is a sad commentary on how we treat our elderly, and in a word, the system is disgusting." that is the view of one pennsylvanian. i would like to thank everyone for that kind of input that we have heard from many different quarters, and for them taking the time to provide that kind of feedback.

without objection, i offer their statements for the record, and these are the statements, 312 from 40 states and territories, a pretty heavy volume of statements. i appreciate those who shared their troubling experiences with fraud and exploitation, as well as those who offered ideas on alternatives to guardianships while protecting the rights of individuals. many of the experiences people shared contributed to the development of my new bill that guardianship, the bill of rights act, which will be introduced today. we know that guardianship is a complex and personal issue. it is clear that we need guardrails to protect the rights of people in protective arrangements. this guardianships bill of rights act will ensure that civil rights of older americans and people with disabilities are protected and that alternatives

to guardianships are in fact promoted. i look forward to hearing from witnesses. you're thankful for their testimony. the experience and expertise they bring. with that, i will turn to ranking member brown for opening remarks. >> thank you. there are far too many difficult stories of guardianship abuse, often from people who did not require a guardianship in the first place. no american should have their rights unnecessarily stripped from them. harrowing tales were sent to this committee of rights being taken away with a single stroke of a pen in the name of guardianship. there are a number of hoosiers who share their personal experiences with me. thank you for submitting your statements. it gave me a lot to go on in terms of what we need to emphasize here in this hearing. i heard from the 60 of a navy veteran jimmy johnston, who said

a court ordered guardianship ultimately led to her brother's death. she had been designated as health care surrogate, and the professional guardian was appointed to make medical or life decisions for jimmy without prior medical knowledge or family history. after his death, his family received a hospital bill of nearly $1.2 million, 1.2 million. nearly all of it was billed to medicare. that is unacceptable read guardianship is supposed to mean protection. when done correctly, it is a valuable tool to protect vulnerable people, but as so many stories have shown us, it can lead to exploitation and abuse. we must empower states with the tools and resources they need to protect and empower their most vulnerable residents. indiana has been an innovative

laboratory on guardianship in recent years and created a guardianship registry to improve data. 2019, indiana passed a supported decision-making law to expand options for people who need a protective arrangement. this gives hoosiers in need the chance to pick support that works best for them, and when we do this state by state, we are using the laboratories in this country in terms of how to do it best across the country. indiana's voluntary advocates for seniors and for incapacitated adults program focuses on autonomy for hoosiers without support or protection. these volunteers step in when they got calls from adult productive services, nursing homes, or banks, alerting them to an incapacitated person who has no one else to look after their affairs.

sarah walker is the director of southern indiana adult guardianship services, a self-described old soul, who traces her love of working with older adults to her love for her own grandparents. she and her team work across five counties in small town usa to help hoosiers be as independent as possible. they assisted one client struggling with drug use find help and a better living arrangement. now they are working to restore her rights. hoosiers continue to show us how states can solve these issues. the adult guardianship office is managing these innovative services. it works with courts and stakeholders to find practical solutions for local issues in the guardianship system. our rollers to remove barriers and not add to them. i am introducing the guardianship grant puts ability act with chairman casey, to

remove barriers by making federal guardianship grants more flexible. this bill would allow states to recruit and train law students to represent respondents and guardianship cases and to serve as guardians ad litem. law students interested in protecting the rights of older adults should not be held back by arbitrary interference. this is a commonsense reform to give states more tools to protect people in need. i ask unanimous consent to enter into the record a letter of support for this bill by the elder justice coalition. i look forward to hearing more about commonsense steps we can take to strike the right balance between protection and freedom, and i look forward to hearing how states can learn more from each other on the issue. i yield back. sen. casey: thank you. our first witness today is a

professor in the department of educational counseling and leadership at monmouth university. she is also a licensed counselor and resident of my home state of pennsylvania. her personal experience with the guardianship system was when her mother was placed in a guardianship following a stroke in 2015. thank you for sharing your expertise and experience with us today. next, i will introduce our second witness, who is accompanied by his mother. ryan works with several organizations, including quality trust and public action to advocate for guardianship reform . he was in a guardianship for 13 years before becoming the first person in washington, d.c., to have their guardianship terminated in favor of supported decision-making.

thank you for being with us today and sharing your story and expertise with the committee. i will turn to the ranking member to introduce our third witness. >> i will introduce nick parker, the staff attorney for indiana's adult guardianship office. nick oversees indiana's volunteer for seniors program, the guardianship registry, and the adult guardianship symposium. he engages with partition nurse, experts, and stakeholders to approve indiana's guardianship system and spearheads efforts across the hoosier state to promote alternatives like supported decision-making. nick is a graduate of iu's lower school of law and previously worked for indiana legal services, medical legal partnership, and also has direct

experience representing clients and guardianship cases and in securing supported decision-making. welcome. sen. casey: thank you. our final witness, fourth and final, is the director of the kansas university center on developmental university. senior scientist at the lifespan institute, and a professor in the department of special education at kansas university. her research focuses on assessment and intervention and self determination and supported decision-making for people with disabilities. she is an expert in less restrictive alternatives to guardianship. thank you for being here. we will start with our first witness and her testimony. you may begin your testimony. dr. paone: good morning,

chairman, ranking member, and members of the special senate committee. i am a university professor and licensed professional counselor. i live just outside of philadelphia and montgomery county, pennsylvania. i am here to share my family story, one that resonates with so many other families. in january 2015, my 68-year-old mother had a major stroke. a judge rented guardianship to myself and brother. the judge also ordered a court appointed attorney, as well as another evaluation by a court-appointed psychologist. at that point, two professionals declared my mother incapacitated , so much to our surprise, the newly appointed attorney insisted on a third evaluation. it resulted in the same conclusion but now to the cost of my mother's estate over a

thousand dollars, the first indication something was wrong with the guardianship system. soon after, the inventory was filed, which valued my mother's estate at a little over $2 million, including the business she owned. my brother and i successfully performed guardianship duties for almost one year. regardless, the court appointed attorney insisted on a new plenary guardian, a lawyer who admitted she had no previous experience working with large estates, as this is, or families who were actively involved. this was the second indication that something was wrong with the guardianship system. in 2018, my mother's assisted living facility told us they had not been paid in months. despite more than adequate funds available, our mother was in arrears to close to $100,000 for her facility and care aides. when we threatened to expose the situation to the courts, the

guardian resigned. but, she only resigned as guardian of the person, not of the estate. we quickly learned that this was a decision that was supported and encouraged by the court appointed attorney. this was very concerning to us, and indicative of a much larger problem. my brother and i kept expressing concerns, but we had no voice. eventually in 2022 mothers guardian informed us that our mother's business would be sold, eliminating half of the monthly income she relied on for her care. even worse, real estate taxes went unpaid. my mom never paid a bill late in her entire life, and now late fees and penalties piled up in excess of $11,000 due to the negligence of the guardian. this was a person charged with

ensuring my mom's well-being. yet, she intentionally sold the business, my mother's largest asset and failed to protect her second largest asset, her home. it was only when we approached the court appointed attorney to request the removal of the guardian that the bills got paid. finally, the guardian of the estate agreed to resign. shortly after, the court appointed attorney agreed to resign with condition. my brother and i cannot contact any governmental regulatory or administrative office to make claims or allegations of her wrongdoing. we cannot speak to family or friends about her negative impacts, either action would be deemed a violation and would result in monetary and possible

removal as our mother's current guardian. if we had agreed to this gag order, i would not be here today. yet, we fear the addictive repercussions as a result of my testimony today. since her stroke, this situation has cost my mother more than $116,000. that is money that could have been spent on her care. instead, when fund a system that seems driven to pay professional guardians, attorneys, and others motivated agreed and power. my situation is not isolated. in my experience, when an incapacitated person has a larger estate, they are more likely to have frequent involvement with the courts, which increases payments to lawyers, guardians and services hired by these guardians. even more disturbing, the same individuals are selected repeatedly to serve in these

roles, creating conflicts of interest and perpetuating a widespread abuse of power that affects this marginalized population. as i sit here today, my mother's situation remains unresolved. i call on you, our senators, to create change. you have the ability to implement meaningful reform. from my perspective, we need federal standards that regulate the appointment and oversight of judges, court appointed attorneys and guardians. additionally, families like mine must have a recourse to prevent devastating medical and financial exploitation. on paper, the current system appears well-intentioned. that is not how it plays out. on behalf of my family and so many others, i big you to please implement -- i beg you to please

implement meaningful reform. sen. casey: thank you for providing your testimony and bringing your mother's story to the hearing today. our next witness is mr. ryan king. we are going to play your video testimony statement that will play right now. mr. king: good morning, everyone. my name is ryan king. i live in washington, d.c. i am an independent. i was under guardianship for 13 years, but not anymore. i can do many things on my own, but sometimes i need help.

i cook three days a week. i wash my own clothing and two visitors take out the trash, who go to the movies, who go to debbie debbie events, and travel -- wwe events, and travel. in october, it will be 23 years

as a courtesy clerk. metro transportation services takes me to work. in 2003, i graduated from high school and wanted to own a limousine business to get

started. to own my business, i have to go to the government agency. my parents had to get guardianship for me. if i wanted to go get their services, i was already

independent with support for the things i wanted to do. i can make choices -- i did not like being under guardianship because -- wait a minute. hold on, hold on. ok. because i had to go to court. no one -- no.

i am kind of stuck. had to go to court. i had to let them know everything i did like going to an event, doctors appointments, and church. no one else in my family did that. in 2007, my parents went to court to end the guardianship. the court gave me a lawyer.

the lawyer said i needed guardian to state under guardianship. the judge agreed. i did not win my case. i read about jenny hatch in the paper. jenny hatch was the first person to -- no. to use their own decision-making. to -- to end her guardianship.

what? for individuals with disabilities help her. i got him to help me to tell the court about the things i can -- oh yeah -- the things i can do. they use supporting decision-making to show what i

could do, and all the people who helped me, my family, friends, and programs i am in -- i did that. i did all of that. a part of my team. i am in project action for advocacy and activities and

quality trust for leadership and advocacy support. we went back to court in 2016 and a judge said he read about everything. this is one thing i can do. he was impressed. i won. i know i can do -- what? >> take your time. mr. king: something, myself --

> take your time. i know. mr. king: i know i need help. sometimes. everybody needs help sometimes. i tell people not to judge me. sen. casey: mr. king, thank you for your testimony. [applause] yours is a story of inspiration. we need to hear that. we are grateful you are here. mr. parker, you are next. mr. parker: thank you, chairman, ranking member, my name is nick parker, the staff attorney with the indiana supreme court,

serving as a resource for courts, members of -- and tools to maintain a functioning system overall. before starting with the court, i was a staff attorney with indiana legal services. i worked directly with clients addressing decision-making needs with them and their families, including guardianship and termination and supported decision-making. i interest in caretaker issue started when i was in the fourth grade, watching my mother care for my grandfather while balancing two nursing jobs. her goal was to allow him to live as independently as possible for as long as possible. she was his primary caretaker for many years. i know that not all seniors were as fortunate as my grandfather to have my mom, and i understand the importance of having strong programs and support to help them live independently.

my office funds and supports 20 volunteer programs, called volunteering for incapacitated and senior adults, working with county courts to address the needs of people in their community who require writing chip services but don't have suitable friends or family to take on the role. programs cover 52 counties and adhere to indiana law and the standards of practice. we have strict ethical requirements in place about staff here ratios and programs. my office also oversees core technology, including the guardianship registry for local courts, an online system to verify guardianship information, serving the public database function and a behind-the-scenes teacher. this registry is so important because it provides timely and important data on guardianships performs uniformity in our filing system. judges and others across the state can use the registry to

access contact information and demographics safely. thanks -- banks and financial institutions and also keep track of curses -- cases that have been terminated. it was a crucial part of a grassroots task force to support decision-making and less restrictive alternatives in our state. it showed the power of organizations affecting change. in 2019, indiana became one of the first states to recognize supported decision-making as a state law. the new law created requirement for courts to consider less restrictive alternatives before rolling out a guardianship petition. since then, we have worked on ways to work on it often without funding. it is modeled after a program in ohio, which you hope to launch as a pilot program to ensure guardians are given proper ongoing education about their roles and duties. we are also considering a law school clinic that would allow

students to service direct advocate -- advocates ad litem. the process in indiana ensures the best process is served and appropriate levels of decision-making support can be put in place. guardians ad litem can investigate less restrictive alternatives and ensure compliance with state law and promising practices. for counties and communities that might traditionally have a hard time recruiting candidates, a law student clinic could provide the necessary staffing for the process to be a success. the indiana courts have the proven ability to convey multiple stakeholders and bring organizations and entities together to address problems head on. deanna has a strong support and commitment from loretta rush, which will allow our adult office to serve its traditional function and expand its outreach in the coming years. there is room for improvement in indiana. we have a strong working network that are willing and able to

tackle issues that come up in the state. grassroots organizing and local input have been successful in the past, and we hope other groups will implement changes suited to the needs of our community. i look forward to discussing the experiences of our state with others today and hope to share thoughts for the future guardianship programming and innovations needed. thank you. sen. casey: thank you for bringing indiana's story to the committee. you are next. dr. shogren: thank you members of the committee for the opportunity to testify on the importance of alternatives to guardianship for people with his abilities, including those with intellectual disabilities and older adults. i am a professor and director at the kansas university center on disabilities. there is clear evidence that we can provide alternatives to guardianship that preserve

rights and determination, and support the intent of civil rights laws, which states in its findings that physical and mental disabilities in no way diminish a person's right to fully participate in all aspects of society, but that people with physical or mental disabilities are precluded from doing so because of prejudice, antiquated attitudes or the failure to remove societal and institutional barriers it is estimated that although we are in need of better data that 1.3 million adults with disabilities and older adults are under guardianship arrangements and that limits their legal capacity to make decisions about their lives. being under a guardianship arrangement can take away rights to make legal decisions, licensure decisions, reproductive and financial decisions, health, medical, education decisions, decisions on where to live, employment

decisions, as well as voting, to be involved in civic life, to travel, and be involved in other daily like decisions. there is a general consensus that in practice guardianship remains a default for many people with disabilities and older adults who need supports with decision-making. there is limited and inconsistent access to an understanding of lesser stripped of alternatives like supported decision-making. this is despite what people with disabilities in your organizations including the organization asserting that guardianships should only be considered after alternatives that guardianships have been proven ineffective or unavailable. defaulting to guardianship without considering alternatives sustained barriers. we have been shown that people with disabilities can make decisions in their communities and access the supports they need to do so. none of us would want our rights or the rights of family members

or loved ones to be taken away if there were other alternatives. what can we do to change the options available to people with disabilities, older adults and their families? we can change the default and provide access to alternatives. for example, supported decision-making can be understood as a process where a person with a disability or older adult is enabled to make and communicate decisions with respect to personal, financial and legal matters on an equal basis with others without disabilities. supported decision-making does not remove decision-making rights. it builds a system of support. if a person needs support with medical decision-making, they can identify the person or technology that can best help them. they can identify a different person or resource for financial decisions or anything they may need support with. and these supports can be

changed over time as a support means and decision needs change. this is aligned with how we all use supports to make decisions in our community. we all get information and advice from people we trust in a way we can understand it to help us make the decisions we need to. to advance protection and empowerment and guardianship, there is an alternative. the goal of today's hearing, i also have the following recommendations rooted in research and the voices of people with disabilities and older adults. first, establish a clear, consistent definition that supported decision-making and guidelines. second, advanced education, training and outreach on supported decision-making and alternatives to guardianship across the multiple systems, eagle, health disabilities, financial and aging that impact decision-making rates. third, adopt commendations by the national guardianship

association and other organizations and that guardianships be the protective arrangement as a last resort. fourth, ensure protections for the civil rights of people with disabilities and older adults were being considered for under guardianship arrangements. this established data collection system allows for a clear picture of the youth and outcomes of guardianship supported decision-making and other protective arrangements. to close, there are existing research-based tools and programs to enable supported decision-making. courts and state statutes are increasingly recognized and supported decision-making and alternatives to guardianship. we are learning that supported decision-making is feasible to implement and that people feel more supported and able to make decisions and that establishing a network of trusted supporters can reduce risk. further, we know that more opportunities to make decisions is linked with other important

outcomes, including health and well-being, access to living arrangements and living a self-determined life. we can use research and lived experience of people with disabilities to enhance protection and empowerment. thank you for the opportunity to be here today. sen. casey:a thank you. as many of you know, especially on thursdays, senators are in and out of this hearing, and other meetings, so i wanted to make note of those who have been here or some may be asking questions, some may not, but senator scott of florida has been part of our hearing, senator gillibrand of new york. i will concede my time to senator blumenthal. senator: thank you for having this hearing. i am sure that everybody in this hearing knows that senator casey

has been a champion that was often used in the senate, but you have been a true champion of what you are representing, not just in word but in the legislation that he has advanced to provide, for example, more compensation, more care for the caregivers, and we are talking about guardianship, people who care for other people. nothing is more important in our society than that kind of caregiving. i am a lawyer and knows what it -- i know what it means in the abstract, let you know what it means in the day-to-day performance of that trust responsibility, so thank you to everyone who is at the witness table and in the audience for your caring about this issue. in connecticut, the probate courts received 600 new

petitions for guardianship of adults with intellectual disabilities every year. at the same time, reported rates of elder abuse rising in connecticut and across the country. i thought it when i was attorney general of connecticut, and i am proud to say that i worked with senator casey and others in the senate to find it here. it can take many forms, including financial exploitation, emotional and physical abuse, and we need to do more to protect it, as we have started to do in 2017, passing the elder abuse prevention and prosecution act. i was proud to work on that measure. it authorizes certain court appointed guardianship, over cited activities under a grant program, and we need to appropriate the money necessary to implement it.

as well as to investigate through the department of justice, the kinds of abuse that have been mentioned here. i want to ask dr. shogren, you mentioned a variety of terminology to describe guardianship arrangements, which sometimes limits our understanding of the circumstances that lead to the outcome, and you offered that guardianship is a legal arrangement under which there is paired decision-making capacity, but this determination does not require consideration of less restrictive kinds of alternatives, such as supported decision-making. do you think implementing a national definition, a model

definition and standard, would aid in combating elder abuse and do you think it would provide guidance to state and be a positive development? dr. shogren: thank you for that question. yes, i do think so. i think establishing a foundation for the definition, the standards for definition are critically important. we have very little clarity, even on how many states are implementing supported decision-making implements in the same way because of lack of consistency, so having a base level of understanding what we are talking about and talking about decision-making, and talking about what decisions will be put in place is important to provide a base level of understanding on what we are talking about and to

allow data to be collected for our understanding. senator: i have been very disturbed about your description about what you and your family have experienced in your attempts to ensure your mother's well-being. your family situation described a system where the court's professional guardians, psychologists and others, seem to have an interest in charging estates for their services. you said that we need to provide recourse for families who experienced medical and financial exploitation to prevent their future exploitation. i totally agree, and i am wondering if you could tell us whether you think a dedicated advisory board would be helpful to facilitate progress in combating this kind of abuse?

dr. paone: yes, i believe an advisory board would be helpful as we determine these types of abuse. i also believe that having systems or recourse in place for families, similar to that of elder law or where professionals are reported if they are exploiting the elderly. at this point, that is not what those national hotlines are for. they will send you back to the courts, which are part of the system that i have found my own problems with. as far as a counsel, as long as it was inequitable counsel that took into consideration the background of the individuals who sit on a counsel, i think it would be very effective hearing

voices from families who have experienced this exploitation may be helpful as members of this council. senator: thank you. thank you to the experts who are here and the champions and advocates. thank you, mr. chairman. sen. casey: thank you. we will turn to ranking member braun. mr. braun: thank you. first question will be for mr. parker and dr. shogren. unsupported decision-making again, in each of your own ways, tell me what is important. i believe that freedom and choice are so important in any of this, and in indiana's decision-making supported law open to new opportunities for protection law, allowing for more individual choice and freedom.

so each of you tell me why it is so important. we will start with you, mr. parker. mr. parker: thank you. the 2019 law change in indiana was groundbreaking because it was a next step in person planning, so i was happy to be part of that task force that got that accomplished. the law created a new paradigm on review, so it showed that there has to be efforts before guardianship is granted. before 2019 that was not necessarily the case, so this shift is a binary system of health versus no health, and it turned it into a last resort system so if anybody has other supports available, they should try those and make sure that if those are not available, that is the only way that the guardianship was forwarded. as a practitioner, i help clients with supported decision-making, so we either took preexisted cases and tried

to find lust restrictive alternatives, or more often, we talked about alternatives before any petition was filed. i could see my clients being able to take control of the conversation, a huge shift. also, many people who otherwise would have soared -- served as guardians for 2019, they were less willing to consider other options. so the law gave us an education and a new way to look at the cases. although there is still work to be done, this is a resource, and my office links those people to resources, so being a part of the law overly allows us to focus on independence and what people can do rather than a restriction under a guardianship. dr. shogren: two are for the question, and i agree with everything that mr. parker just said, and i will build on that in terms of the importance that i believe it was senator casey who said that guardianship is often used as a blunt legal

tool, and that is not how most people interact with making decisions in their day-to-day lives about multiple domains of life, using a blunt tool to arrange the support and it does not allow us to individualize or deal with the realities of people living and interacting with their community. as we heard from mr. king, he talked about how we all need support in some area of our lives, but we should have the right to choose those supporters, access those resources, and drive the decision-making. supported decision-making assumes the ability to make decisions and requires us to disprove that before moving on to least restrictive alternatives. sen. casey: thank you. mr. parker -- mr. braun: thank you. mr. parker, indiana has done some things that have been trailblazing, so to speak.

let's look at the guardianship registry. this system makes information about guardianship more transparent. other states adopted similar changes. why are the states best position to handle guardianship issues and how are they learning from each other's policies? mr. parker: thank you. i started with the courts a year ago last week, and i was just amazed at how quickly states were contacting me to talk. i have met with 15 other states since then, all of the country. there are groups that can help make connections with states, and there are conferences and trainings. so people in different states in my position are talking to each other. there are two ways. one is geographic, and then sometimes it is based on how courts are structured, so indiana has a strong amount of local control called a

non-unified court system, so i have met with other states like that. sometimes, courts will meet based on factors like whether they have supported decision-making yet in their state law or what they want out of it, like technology. what i am seeing is there are clear commonalities and less restrictive alternatives are positive changes, keeping guardianship as last resort. outside of that, there is not a lot of consensus on what we should do because everyone is trying something slightly different now. i call this state novation stage, picking and choosing what might work and what not might work for our state, and what have others learned? right now if we picked a set of rules for everyone to go with, it might disrupt these discussions and have good ideas go unnoticed. there is not a one-size-fits-all solution but i think states are best equipped to find these

solutions, inside their state, or other states. community level partnerships have worked for indiana in the past, and i think states will drive those innovations in the future. mr. braun: i have a couple other questions but we'll save that for the second round. sen. casey: i will take my question time now, as you highlight in your testimony, your mother's stroke necessitated a guardianship, due to her being incapacitated. your story emphasized a critical need for these guardrails that we spoke of earlier. guardrails to ensure that even while in guardianships, individuals and their basic rights are protected. the the guardianship bill of rights act will direct the attorney general to create standards for protecting people under guardianship's. can you describe how legislation like this would be helpful, especially in the context of

your own family's experience with your mom? >> yes, the legislation, after i read it, there are four points that i found that would have been very hopeful. an alternative arrangement for my mother would have been helpful. family members are less restrictive than court appointed personnel and costs people zero dollars. a guaranteed procedure for the modification or discontinuation of restrictive protective arrangements would have been hopeful. regulatory -- regular and consistent background checks on court appointed personnel would have been hopeful. and finally the ability to report and investigate abusive guardianship would be helpful. all four points of the legislation would be helpful moving forward. >> your own story gives us a foundation for legislation like that, and i'm grateful you are willing to talk about it.

you have multiple disabilities but are capable of making your own decisions, decisions with support. i was looking at the written version of your statement, which is basically the same as what you did by way of video, and you said on the first line, i have disabilities and i am independent. sums it up in one sentence, i have disabilities and i am independent. on the you say "i can do many things on my own but sometimes i need help." that would apply to me too, all of us really. but this idea of independence

and making sure we are not just aware of it as a concept, but that we are putting in place policy that would effectuate it, is critically important. the process of supportive decision-making relies on family and friends to create a team to support you. we have a number of states that have addressed this. wenzel vania, the state -- so vania, the state i represent, understands how to implement supportive decision-making in order to both protect people who need help making decisions, and to ensure that their rights are in fact honored. while not a new procedure, it seems supportive decision-making and other arrangements that are less restrictive than guardianship are not that well known, even frankly by people who should know in our system in government. i ask you, how did you put in

place the supports that you needed while you were developing your supportive decision-making arrangements? >> first of all, i know that everybody needs to be aware of everything, because if you are not aware of everything, then you are lost, you are lost in the sauce. and people need to know. if people don't want to be under guardianship, they don't have to be. do you hear me? [applause] >> well said. that about sums it all up. because we have senators that have busy schedules, i was going to go a little longer to give us

some more time, but senator vance is here so he will be next. sen. vance: thank you, mr. chair and mr. ranking member. i am a little biased here, but i understand the ohio model has a lot to recommend in terms of addressing some of these guardianship issues. what specifically about the ohio model do you think could serve as a model for other legislation and states or here federally? >> when i first started with the court last year, i almost immediately met with ohio. it was easy for me, i am from ohio. what i was fascinated with with ohio is they have a system of guardian education set up. it allows for local communities to submit trainings to have in an online database, and it allows people to watch those at their leisure, guardians and others, but they have to take those credits. when a court orders a

guardianship, they have a system where they take certain amounts of ongoing education about their roles. i really saw for indiana that this could be a model to have trainings on about lesser restrictive alternatives but also management and things that go in the day to day of a guardianship. i think ohio can serve as a model for other states that don't have an education system, because ohio has done it effectively. that is what i'm talking about with the state coalitions and learning from each other. i took that back to my role, and i requested something like that in a federal grant. we did not get the grant but we are looking into implementation of a system like that and i look forward to speaking with my counterpart in your state very soon. >> one basic factual question of the current guardianship situation we have in our country, do we have a good sense of how many of those are family

guardians versus some sort of professional guardian? sen. vance: in general, counting guardianships is incredibly difficult because of challenges not only with finding cases that might have predated court technologies, but just generally, because it is a fluid arrangement that can change. sometimes people will have a guardianship terminated only to have it reinstated at a later date. for those and many other reasons, it is difficult to count adequate guardianship numbers. i do think states like indiana have created a good guardianship registry that into -- that integrates with county courts. the second step is looking at review of those cases and saying this might be a case where guardianship was -- sen. vance: what is a good guest in indiana for how many are family guardians versus nonfamily? >> i unfortunately don't have that data but i can look into it. we have a court technology team

where i can try to get numbers. sen. vance: we will follow up may be off the record. the reason i ask here is, for obvious reasons, you might expect a family guardian to take the responsibility differently than a professional guardian. not to implicate or cast any judgment on professional guardians, i am sure many do a good job, but as the country gets older and as fewer people have children, what i do worry about a little bit is you have this growing class of professional guardians who may be don't have the same interests, the same emotional attachments to their loved ones. that is something we will have to think about here. i know we are focused on -- i know i'm running short on time, so let me just close before i yield here.

dr. paone, your story was very illuminating to me. i am sorry it happened, but i appreciate your wellness to illuminate this community. mr. king, i want to offer my gratitude for you for being here and offering your insights, and dr. shogren and mr. parker, thank you both for being here as well. i yield. >> thank you, senator vance. we will now move to a second round of questions. i will start and move to ranking member braun. i want to get back to this question of supportive decision-making. although we don't have anywhere near the adequate data that we need, the council of state legislatures estimates there are about 1.3 million people under guardianship's across the country. we have to bolster that with additional data. we know that many of these are not working well.

that is obvious. but there are hundreds of instances of abuse, neglect and exploitation of people under guardianship arrangements. guardianship removes the right to make decisions such as where to live or with whom to interact. i would ask this of a number of our witnesses, what is the benefit of making guardianship a choice of last resort? it seems like an our system today it has become the first resort or what courts and others turn to immediately. how do we make that, the guardianships, the choice of last resort, and make alternatives like supportive decision-making the default position? anyone who wants to answer, but i may as well start with dr. paone. dr. paone: alternative arrangements would allow willing and able family members to care for their loved ones, supporting ed my case an incapacitated

person with decisions aligned with the wishes she had prior to incapacitation. so alternative arrangements would be ideal. sen. casey: dr. shogren? dr. shogren: to flip that default is defining and having clear standards and guidelines. i do think the points that have been raised, especially about looking at variation across states, can provide useful data, but we need a baseline standard to make sure everyone has access to these less restrictive options. i think it is also important to think about education, outreach and training on supportive decision-making and other alternatives. there really are multiple systems. we talk about pipelines to guardianship.

for example, the national council on disability has talked about the school to guardianship pipeline, whereas students are transitioning from their kindergarten through public education, families are being told about guardianship at the transfer at the age of majority, and it is viewed as the default option instead of building resources and supports for supportive decision-making. that is largely because people are not aware of and have access to the education and training on these options that have been talked about both inside of systems as well as empowering families and people with disabilities access to these options. sen. casey: mr. parker, you had to wrestle with the legal and policy implications of this. what is your advice for how we in essence flip the default to supportive decision-making? mr. parker: some states do have a structural guardianship as last resort built into their law. i am fortunate to be in a state

where because of the protections for guardianship, that it is a last resort. i think the next steps in working with that paradigm are education about these less restrictive alternatives. i would also say review and empowering courts to have review of guardianship is important. i am looking forward to going back to my state and working with courts to review processes in line with international standards for the national standard of state courts. sen. casey: ryan king, i noticed in your testimony that you were not willing to accept the default of guardianship, you had to take two cracks added. -- cracks at it. towards the end of the first page of your testimony you said "a lawyer said i needed to stay under guardianship. the judge agreed. i did not win my case."

but later, when you read about jenny and her story, the first person to use supportive decision-making, and at the very end of your statement you say that we went back to court in 2016, the judge said he read about everything i can do, again emphasizing your independence, and you go on to say he was ending guardianship, i won. that was a good win. i won, i know i can do some things by myself. i know i need help sometimes. everybody needs help sometimes. you had to try to win a second time, and i think your perseverance is inspirational. what kept you going to say i will not accept guardianship as the default? mr. king: if you don't fight and win and do everything you need to do for you, nothing gets done. sen. casey: well said.

[applause] i will turn to ranking member braun. sen. braun: i agree, very well said. my last two questions will be for mr. parker. the in any kind of challenge, when you can get volunteers to help, it spreads the burden. i was intrigued by the volunteer advocates for seniors or incapacitated adults, that now we have 92 counties in indiana. this is there in 52 of them. tell us how that is actually working, and is it a real way to engage folks that are willing to give time, where it looks like in many cases it is hard to find the professional help? how has that been working in indiana? mr. parker: the volunteer

advocates program began around 2014. the model was codified in our state law about 10 years ago. what is really unique about this model is the volunteer aspect. it is important to note who this program is for. the program is for people who have been determined to need a guardianship and not having anybody suitable that could serve in that role. these programs are implementing a lot of ways to look at that and say may be a guardianship will not serve the interests of this person. they are able to directly advocate for those clients and send them to legal services and protection and advocacy organizations. this has to be for people that absolutely need a guardianship as a last resort option. after that, these programs are uniquely situated. you read the statement of sarah walker with southern indiana guarding chip services. they are working with organizations and communities and are extremely ethical

organizations. i am very impressed going around the state. i went on a tour of our programs. though i know all the legal aspects of a guardianship, it was eye-opening to see what these programs are doing to meet the needs of people who would truly have no other option. i have seen this program work in indiana and i know other states are looking at volunteer models, so i look forward to talking about our experiences and potentially having this as an option in other states. sen. braun: last question for me will be in regard to the bill we are dropping, the guardianship grant flexibility act. another way, not only with volunteers, but this would be with law students. seems like there is a real interest among them to help, maybe knowing they will engage in this once they get their law degree. it is a very simple idea. tell me how you think that will

help, and if we can get momentum behind it, because it is a good idea and we need it. mr. parker: when i was a petitioner -- was a practitioner i got to see firsthand law students. they are eager to learn, relatively mobile. they are putting in time on research and they want to gain experiences to help them in their future legal careers. i had worked with my predecessor in this role to go down to the law school in bloomington, indiana to train a group of students on how to serve their local courts. this was to train on an independent third-party officer and following the best interest standard to determine if guardianship is necessary. they are writing reports to the court. last year we took that solution a step further when we applied for a grant. we wanted to create a model that links law students to all kinds of indiana communities.

there are a lot of issues with workforce and staffing. courts want to have direct advocates and attorneys serving for people, but sometimes there are issues. we hoped law students could fill that gap and could get practical experience. i think this is a perfect example of the type of partnerships i was talking about. i look forward to seeking support for such a program in the future. sen. braun: anybody listening out there, get with your respective senators within your states and support that idea. a lot of times you can take something practical like this, which i think senator casey and i try to specialized on -- to specialize on, and gets others interested in it. this would be a good thing to aspire to.

i yelled back. sen. casey: i want to think -- to thank ranking member braun. i think we have a lot of benefit from having an alliance with law students. they can be great advocates for what we are talking about today. with that, we will begin to close. i want to reiterate our thanks to the witnesses for their testimony, bringing your personal experiences here, and indeed your expertise. today's hearing highlighted both concerns with guardianship but also solutions. we don't want to just curse the darkness so to speak, we want to offer solutions. i think the hearing has shown there are commonsense alternatives to guardianship and the current guardianship system. as mr. king said, we should not judge people before we know them or their ability to make decisions about their lives. by taking a person centered

approach and creating supportive -- a supportive trusted team around that person, we can help people purchase a paid in their life decisions and retain their rights and to retain as well their autonomy. to both protect and empower older adults and people with disabilities, a continuum of support should be available to every person. the legislation i have introduced is one strategy to promote that protection and empowerment. i am grateful for the work of ranking member braun on the legislation we introduced together. i look forward to working with the committee to implement even more strategies, may be we have not explored today. i will turn next to ranking member braun. sen. braun: thank you. when you listen to a hearing like this and you hear the story of dr. paone and ryan's story,

it is shameful that in that part of life, when you are going through that issue, that you would have unscrupulous folks get involved and to work the system. if there is one responsibility we have, especially at this level, and even within our own states, it is to make sure that does not occur. i am really glad that we had this hearing to bring it to this level of attention. it is sad that you need to do that. i think this is the clarion for everyone out there that is listening, especially within all the states, where it looks like we are getting that proper attention. that at this stage of your life, you should not have to be

worried about a guardianship that does the exact opposite of what it implies. glad we had the hearing. i think we accomplished some valuable stuff here and that hopefully we parlay it through states into a better way for those in the future. thank you. sen. casey: i appreciate working with you on this. we want to thank our witnesses, dr. paone, mr. ryan king, mr. nick parker and dr. shogren, for bringing their wisdom and expertise to help us figure this out. if any senators have additional questions for the witnesses or statements to be added to the record, the hearing record will be kept open for seven days until next thursday, april 6. so thank you all for participating today both at the witness table and in the audience. this concludes our hearing.

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