MI-LEND Video Resource: Rethinking Guardianship (Week 13)

Summary

In this engaging video, Don Hoy, a renowned expert from the ARC of Michigan, delves into the intricacies of guardianship for adults with disabilities. With over 35 years of experience, Don provides a thorough critique of the guardianship system, emphasizing its outdated nature and potential pitfalls. He argues for a shift towards more supportive and accommodating frameworks that respect individual autonomy and emphasizes self-determination. The discussion also covers the importance of involving broader social circles and communities in supporting individuals with disabilities, rather than relying solely on guardianship.

Highlights

• Don Hoy stresses the outdated nature of traditional guardianship and its potential to strip personal rights ✊.
• Guardianship doesn't always solve problems; alternatives focusing on personal autonomy can be more beneficial ⚖️.
• It's essential to involve community support in the lives of those with disabilities, not just rely on a designated guardian 🤝.
• Personal stories and real-life examples highlight the limits and challenges of current guardianship practices 📚.
• The discussion encourages embracing new methods that empower individuals rather than restrict them ✨.

Key Takeaways

• Rethink traditional guardianship! Consider more supportive and individual autonomy-focused alternatives 🤔.
• Guardianship might strip away rights unnecessarily; there are other engaging options ✊.
• Don Hoy is a wealth of knowledge on disability advocacy and policy; learn from the best 🧠.
• Understand that person-centered planning can often provide the support needed without guardianship 🗺️.
• Consider broader social support networks; they can often be more beneficial than formal guardianship 🌐.

Overview

In the 'Rethinking Guardianship' video, viewers are treated to a masterclass by Don Hoy, a formidable voice in disability advocacy. He speaks with passion and insight, leveraging his extensive years of experience with ARC Michigan to illuminate the shortcomings of traditional guardianship systems. Through personal anecdotes and a plethora of examples, Don paints a vivid picture of why current practices may often hinder rather than help individuals with disabilities.

Don posits that guardianship, as it stands, can deprive individuals of their rights and autonomy. He encourages a paradigm shift towards frameworks that promote support and accommodations. These systems, according to Don, are better suited to the modern understanding of disability rights, emphasizing person-centered planning that includes the voices and desires of the individuals it serves.

Through lively dialogue and audience interaction, Don successfully brings to light alternative methods to guardianship, underlining the importance of community support networks. His thought-provoking ideas challenge the audience to consider the broader implications of guardianship and echo the sentiment that empowerment, not restriction, should be central to our approach.

Chapters

• 00:00 - 00:30: Introduction and Speaker Introduction In this chapter, the speaker greets the audience and mentions preparing to display a PowerPoint presentation. They proceed to introduce Don Hoy, detailing a long-standing acquaintanceship of over 35 years. Don Hoy's notable roles are highlighted, including serving as the executive director of the Arc Michigan for a decade and as the director of a significant association.
• 00:30 - 01:30: Don Hoy's Background and Advocacy Work This chapter delves into Don Hoy's extensive background and advocacy work, specifically his over 30 years of dedication to community advocacy. Hoy currently serves as the Director of Public Policy for the Arc of Michigan. His advocacy efforts have consistently focused on self-determination and ending waiting lists for critical services, particularly for individuals with developmental disabilities. Hoy is also associated with an initiative—the H group—that concentrates on policy issues at the state level, striving for impactful changes.
• 01:30 - 03:00: Overview of Guardianship and Alternatives The chapter provides an overview of guardianship and its alternatives. It discusses the closure of institutions in Michigan to improve community living supports, ensuring a wide array of accessible services for people. The chapter also mentions a national expert, Don, who specializes in alternatives to guardianship and has been a significant mentor to the speaker.
• 05:30 - 07:00: Definition and History of Guardianship The chapter titled 'Definition and History of Guardianship' discusses the importance of re-evaluating our understanding and perception of guardianship. The speaker, Don, encourages us to set aside preconceived notions about the topic, suggesting an exploration of perspectives on guardianship, its definitions, history, and implications as outlined by a coalition dedicated to the subject.
• 08:30 - 10:00: Medical Decisions and Guardianship The chapter discusses the topic of alternatives to guardianship in the province of Ontario, Canada. It highlights how individuals may express their decisions through nontraditional methods and the concerns surrounding legal proceedings that can strip individuals of their rights. The chapter emphasizes the right to be supported and accommodated in decision-making, and how appointing a substitute decision-maker can make a person vulnerable and infringe on rights that are generally considered inalienable.
• 10:00 - 15:30: Guardianship Related to Contracts and Finances This short section highlights the importance of recognizing diverse communication styles, emphasizing that communication is not solely verbal. The passage stresses the tendency to overvalue verbal fluency, advocating for appreciation of non-verbal forms such as imagery, which can be equally poignant as the adage 'a picture is worth 10,000 words' suggests. The idea is to move beyond mere rhetoric to embody actions, encapsulated in 'walk the talk.'
• 15:30 - 19:00: Program Decisions and HIPAA Concerns The chapter discusses the reliability of behavior versus verbal communication, especially in the context of program decisions and HIPAA concerns. It argues that behaviors provide more accurate insights into a person's true feelings and intentions than words do. Verbal communication can be deceptive, as people may omit information, embellish stories, or tell lies. Observing behavior can be more revealing and truthful than relying solely on spoken words. This concept is crucial when considering program decisions where understanding genuine intent and compliance, such as with HIPAA, is vital.
• 19:00 - 23:00: Residential Decisions and Roommate Issues The chapter discusses the vulnerabilities and challenges faced by individuals, particularly those who are verbally expressive, in making independent residential decisions. It highlights the issues surrounding guardianship and how it can lead to others making decisions on behalf of such individuals. The text references a resolution from Tash, an organization that once catered to people with serial handicaps, highlighting the evolution of its mission and the language used in advocacy. This underscores the importance of respectful and politically correct approaches in supporting individuals with disabilities.
• 23:00 - 26:30: Sexual and Related Issues in Guardianship The chapter discusses the importance of accommodations and support for individuals with disabilities, particularly those with intellectual and developmental disabilities, to empower them in making choices and decisions. It emphasizes the need to recognize and honor their preferences and protect their rights to self-determination. This perspective is supported by a major conference focused on disability, which includes experts, individuals with disabilities, and their families.
• 30:00 - 34:30: Guardianship and Aging Population Concerns The chapter discusses the role of guardianship in the context of an aging population, stressing the importance of respecting and accommodating the wishes and choices of individuals. It highlights the need to explore alternative systems to guardianship that better honor personal decisions, while acknowledging that such changes do not automatically dissolve existing barriers. The chapter aims to clarify what guardianship entails, its limitations, and encourages a rethink in light of other supportive regulations like the ADA.
• 34:30 - 51:00: Legal and Ethical Concerns with Guardianship The chapter titled "Legal and Ethical Concerns with Guardianship" discusses the barriers people encounter, which often lead them to consider guardianship. It highlights alternative means to address those barriers effectively without immediately resorting to guardianship. The speaker emphasizes the availability of various tools that can assist in navigating these challenges. Due to time constraints, the session is shorter than usual, and questions will be addressed at the end of the session.
• 54:00 - 70:00: Examples of Avoidable Guardianship Situations The chapter titled "Examples of Avoidable Guardianship Situations" begins by defining guardianship as a legal situation where one person exercises authority on behalf of another. It introduces the concept of the guardian having authority over their ward. The chapter mentions two specific guardianship statutes in Michigan: one in the mental health code for people with developmental disabilities, and another in the estate and protected individuals code (EPIC) that applies to general cases.
• 70:00 - 90:00: Alternative Tools for Decision Making Guardianship has been a tool for decision-making, particularly when individuals are unable to make decisions for themselves. The statutes surrounding guardianship are similar and created by the same group. Traditionally, guardianship has been sought for medical decision-making for those unable to make decisions on their own. These decisions were necessary when individuals' choices weren't recognized or honored.
• 102:00 - 125:00: Estate Planning and Trust Setup This chapter titled 'Estate Planning and Trust Setup' begins by addressing the challenges faced by the medical community in accommodating individuals with disabilities. It highlights a lack of understanding and experience in communicating with such individuals, partly due to fear of lawsuits and partly due to unfamiliarity. These issues create problems that need addressing. The chapter promises to delve into how the author became interested in this subject, marking the beginning of a deeper exploration into estate planning and trust setup.
• 125:00 - 156:00: Self-Determination and Freedom The chapter "Self-Determination and Freedom" starts with a recollection of a significant moment almost 47 years ago when a mother posed a poignant question during a needs assessment: "What's going to happen to my daughter when I'm gone?" This question has since driven the narrator's pursuits, research, and investments, aiming to find answers and solutions. A major issue that arises in this context is guardianship, which is addressed as an integral part of exploring self-determination and freedom.
• 156:00 - 162:00: Final Thoughts and Shared Experiences The chapter focuses on the culmination of research and discussions held in various groups regarding a particular topic. It emphasizes the consensus reached by these groups. One significant anecdote shared includes a hypothetical situation posed by a mother who frequently travels to Florida during winter. She raises concerns about potential medical emergencies, such as a car accident in Ohio while traveling, and the implications it might have.

MI-LEND Video Resource: Rethinking Guardianship (Week 13) Transcription

• 00:00 - 00:30 okay hi everyone it's an I'm gonna just pull the PowerPoint up and introduce Don Hoy so I've known Don for a really long time as it turns out like almost long time 35 years maybe or more and uh don was the executive director of the arc Michigan for 10 years and he also was the uh director of the association for
• 00:30 - 01:00 Community advocacy for over 30 years and he's working now as the Director of public policy for the Arc of Michigan and I've known on just for a long time he's always worked on issues around self-determination um helping to end the waiting list he has a group the H group of P people interested in policy who work on issues that we can you know change at the state level and then ended the waiting list for C services for people with developmental disabilities he was part of a big part
• 01:00 - 01:30 of um closing the institutions in the state um and making sure that Michigan has an array of services so that right now Michigan has probably the greatest array of services that people can access in terms of the community living supports so he's also a national expert um on other on many issues one of them being um Alternatives Guardianship and that's what he's going to talk to you about today and I just wanted to say Don thank you so much Don was has been my one of my big mentors in my life and I
• 01:30 - 02:00 hope that all of you have someone have a Don in your life as you go through your careers so go ahead Don thank you an the title of this is rethinking Guardianship and and I I hope that everybody will set aside their that they think they know about guardianship already um and just uh we can talk about that at the end but but if you can set those um Notions aside and let me take you down this this road this is it's not going to be a secret where I'm coming from this is a summary statement from the Coalition on
• 02:00 - 02:30 alternatives to guardianship out of Ontario um the province of Ontario in Canada and it talks about people expressing their choices in different ways nontraditional ways and it also talks about any legal proceeding which deprives the person of their right and in this case the right to be accommodated and supported in choosing making decisions and which appoints a substitute decision maker makes that person vulnerable um and and takes away rights which most of us believe should be inalienable
• 02:30 - 03:00 and I'm not going to talk about this longer piece here I'm just want to talk about number four just for a second because it it talks about people who communicate in different ways and and and many times we get stuck with um acquiescing to people who who are fcil verbally and that and we put Priority on that kind of U Behavior or that kind of um communication and we skip the fact that we have sayings like a picture is worth 10,000 words or walk the talk
• 03:00 - 03:30 don't just talk the talk which tell us that behavior is probably more reliable than just verbal communication those of us who are fastel verbally can omit things leave things out we can tell a little white lies we can we can embellish we can tell great big Whoppers and uh and yet if you watch a person's Behavior you can tell a whole lot more um about what how they really feel or what where the really stand than you can by just listening to what people say and and people have difficulty
• 03:30 - 04:00 verbally are far more likely far more susceptible to having someone say well we're going to have someone else make decisions for you and and and I I just want to point out that that's one of the one of the fallacies we have about this whole idea of guardianship this is a resolution from Tash and T used to stand for the association for persons with serial handicaps of course is not politically acceptable any longer and and also disrespectful but now it's just Tash and this is an organization that holds
• 04:00 - 04:30 probably the largest conferences in the country on disability especially intellectual and developmental disabilities um with providers people with disabilities and families so this is their statement this is their resolution and they want to promote the use of accommodations and supports people need to make choices and decisions and have their preferences recognized and honored and the rights to self-determination protected saying kind of the same thing that that you move to
• 04:30 - 05:00 appoint a substitute decision maker you eliminate those those positive things and we ought instead in light of the Ada and everything else that we're doing we ought to be accommodating people and figuring out ways to to uh get their wishes and choices honored so today I want to talk a little bit about the guardianship what it is and what it isn't what it does do and what it doesn't do and then just because you take the stand that we ought to find a different way doesn't mean that people automat atically have their barriers
• 05:00 - 05:30 removed there are there are barriers people face um that that have been uh that some people rely on guardianship to face those and I'm saying there are other ways to address them and there are some tools we can use that would help us address those I I I want to make sure that you understand I'm going to hold questions till the end I'm uh I've got an awful lot of material here I usually get two and a half hours but we're I'm kind of limited today so so we're going to rush through this stuff and I'll save some time at the end for for questions
• 05:30 - 06:00 this is a definition of guardianship which is probably acceptable to every it's a it's a situation recognized by law and under law under which one person rity exercises power over on behalf of another person so you have the guardian who exercises authority over their ward in Michigan we have two guardianship statutes um one contained in the mental health code that applies to people with develop mental disabilities and one contained in the estate and protected individuals code epic which applies to everyone else who
• 06:00 - 06:30 might be subject to guardianship um and the two statutes differ slightly but they're but they are very much alike uh drafted by the same people first let's talk about why people sought guardianship in the past and the first and most logical reason that you're here is because they might have to make medical decisions and that they will need to be someone else to make those decisions for the person um because their their decision won't be accepted CED or or people won't make uh
• 06:30 - 07:00 the accommodations necessary in the medical community to accept those kinds of things partly to um partly because they don't want to be sued um and and partly because they haven't dealt with people with disabilities very much and uh and don't understand how they communicate necessarily but but whatever the reason that's where we run into problems and as I say you know that the the first question was asked of me first I should tell you how I got into this whole subject and I was two days on the
• 07:00 - 07:30 job um almost 47 years ago when um a mom asked me the question we were doing kind of a cursory needs assessment and a mom asked me the question what's going to happen to my daughter when I'm gone so much of what I've learned and and have gone after and and discovered and research we've done and money we've spent has been trying to answer that question one of the issues that comes up automatically almost is Guardianship and so that was a part part of what we addressed and so much of what I'm going
• 07:30 - 08:00 to tell you has been both researched and uh and we've had extensive conversations and U and work around and this the kind of I'm going to kind of give you the consensus of what that those groups that we've held in the past have come up with and and so again medical reasons I I once had a mom ask me you know we go to being snowbirds we go to Florida every winter and what if we're driving through Ohio and we're in a car accident and something happens and my
• 08:00 - 08:30 son is going to bleed to death and he can't give consent don't I have to be his Guardian in order to do that well number one you're not as guardian once across the state line anyway but uh if you were a guardian and you were also hurt you were comos or in shock and you couldn't give consent what do you think would happen What would happen to you and your son and of course the answer is easy we have Good Samaritan acts would allow medical professional to administer by the side of the road um every Hospital trauma or emergency room has
• 08:30 - 09:00 has has a policy to save people's lives limbs organs etc etc and so emergencies are always covered that's that's never a time to to to worry about whether it's a guardian or not and I've actually had the experience when when after a van accident um in getting to the hospital I discovered that uh everybody had been served but one person and um including the driver but that other person who had not been served was they were trying to reach the guardian well they end up serving her anyway
• 09:00 - 09:30 because they weren't about to reach the guardian or couldn't quick enough and uh a good thing because the Guardian guardian was on an airplane going somewhere else so if you want to be Guardian for emergency reasons you need to be right there all the time and not close enough so you're in the same accident necessarily but I mean it's just not a feasible um guarding just not a feasible methodology for emergencies um but there are other uh um elective procedures uh you know the usually the doctor who sees a person um
• 09:30 - 10:00 when they're 17 years um um 11 months and 29 days doesn't require something different two days from that point on the other hand if you get to a hospital there's an anesthesiologist for the first time and we're talking about an elective kind of thing they might require something different than somebody who knows the person but what whatever reason it is an issue and we'll talk about it more as we go here then we come to the second most common reason you're given for why there
• 10:00 - 10:30 needs to be a guardian or contracts and and I can tell you that when people say contracts they don't mean that they mean money and money comes up again here but but they're worried that people are going to sign contracts that they have no way to to fulfill especially paying for things uh and they're concerned that their credit's going to be ruined they're concerned that they're going to be indebted for this this purchase or or this thing that they're never going to be able to pay for etc etc and I and I
• 10:30 - 11:00 you know in some ways we will talk about this but in some ways um it comes down to the double standard we have people who buy more car than they need or more purses or shoes than they need or who buy lottery tickets or go to casinos they're not at all worried about wasting money but heaven forbid a person with a disability should waste a dollar or not get right change you know then all of a sudden it's a different context and it's just a double standard and I will deal with this as we go and there are circumstances
• 11:00 - 11:30 that that where we've um not had a guardian and that me that means a contract avoidable uh if the person doesn't understand but we'll get into that in a bit then decisions about programs and records and and I Hippa has scared people about what it means for releases of information and there's no tougher standard than there was before about releasing information it's a tougher standard on the person who hold the information and the records
• 11:30 - 12:00 they have to keep about releasing it so on and so forth and they have to show that they've had authority to do that etc etc there's no there's no additional requirement about um um understanding releases or about anything like that it's just an additional requirement around the holder of the record has to comply with for the for the uh health insurance and portability act um it isn't it isn't um the question about programs is is different than the question about
• 12:00 - 12:30 records and we have um all we all believe somehow that we know if people would just go through certain programs they come out better on the other end and we have judges who if there's a an offense involving alcohol and driving um they want to send people automatically to 12-step program because we know they'll come up better at the other end all kinds of things like that that we all know right well the truth is we have mountains of evidence to show that sending people or making people go
• 12:30 - 13:00 through programs has almost no effect unless they engage in the program so that 12-step programs people might comply so they don't have to go back through it again or so they can get their license back and maybe not even lose it again but that's not the same as engaging in the program or or or or believing um that the program is Merit in of itself it's instead an aversion to punishment but the same thing is true for other programs all kinds of data mountains of data to show that unless
• 13:00 - 13:30 you engage a person going through a program doesn't change them at all and and and that leaves us in a situation where we sometimes see guardianship to make people go through programs that they wouldn't go through otherwise and that kind of eliminates the requirement on the program to engage people now we can send them and they sit in the chair or do whatever there is in a program and the program gets paid now for their being there but there's no obligation on that program to engage people there's no inclination or even
• 13:30 - 14:00 motivation to engage people because all you have to do now is send once a year a piece of paper to to a person who doesn't have to have the language more concrete or changed or anything in order to talk to you about it it's a person who can just sign a piece of paper and now you have that chair filled um every day for the next 12 months that's a whole lot more not only convenient but it's a whole lot easier on the on the part of the people who run programs to say okay we we're going to get paid and
• 14:00 - 14:30 and relieving them of the obligation to engage people so they gain from the program is in my opinion a mistake I've talked about financial decision already I just what I would tell you is there are so many tools to use in that area and again dealing with the double standard of um of people with disabilities not wasting money we have all kinds of tools to make sure that we that people rent People's rent gets paid and and uh and if they have enough money to to to do what they need to do it doesn't require um that we take their
• 14:30 - 15:00 rights away as it relates to that you know just to go back to contracts a minute we think about contracts that are written and signed the only contracts that have to be written and signed are those that engage in interstate commerce that involve real property so a mortgage or lease or something like that um and and those that are going to take more than a year to to fulfill either the payment of or the or the provision of services whatever it is it's going to take more than a year than it needs to be written now more contracts than that
• 15:00 - 15:30 are written just to assure payment or do some other things but those are the ones only ones that are required to be written and we skip the fact that a ticket to a basketball game or a movie theater is a contract that even purchasing a pack of gum from a merchant offer an acceptance is all the elements of a contract so when we think about contracts we're think about those great big things with a lot of money involved and and instead we ignore the some of them are just everyday occurrences um and so again financial decisions we're going to cover and we're going to go over those just seems like
• 15:30 - 16:00 the wrong reason to take a person's rights away because they can't make correct change or winess and we come to placement decisions and when I talk about this I'm talking about where people live and uh sadly we don't take into account um where people want to live uh or who they want to live with when we make decisions about placement I was asked the question once by a Maybe not quite as sophisticated as this but yeah he said do social workers have
• 16:00 - 16:30 training in which people disabilities should live with each other no not that I know I don't know anything like that oh do nurses or or therapists have that kind of training no not that I'm aware of okay well how about how about do doctors or teachers any of them have a class about which people no I said you know I think that if you looked at it you'd find out that they decide where a purpose person's going to live based on that person's level of functioning and that um heaven forbid they would waste a
• 16:30 - 17:00 Dollar by having a person who needed less supports in the same place as a person who needed more because then then that wouldn't fit their their spending patterns the way they want to and he said well how how are these people do in their own lives and if you want to look at the divorce rate whatever you want to look at you know if we take on training wheel marriages you know where people live together not just um through the benefit of marriage then I bet people who make those decisions are wrong far more than half the time and yet we have those those same people who make those bad decisions for themselves deciding
• 17:00 - 17:30 where people are going to live and I don't think anybody would claim they do it on the basis of how well people get along these days the biggest problem in residential programs are finding enough staff the second biggest problem now and the biggest problem in the past has been housemate or or roommate problems and and that's still an enormous problem and isn't get as much press these days as the finding enough staff but but but the issue has been for a long long time
• 17:30 - 18:00 we're able to sentence people to live with people we decide they should live with and the only way they can undo that sentence is by behaving so badly so poorly that we'll pluck them out of that situation we usually won't put them in a better situation but but at least they're out of that situation and and I and I you know in many ways we failed the system we failed people the systems failed people by um resorting to some of these kinds of decisions that don't reflect what any of us would accept in our own
• 18:00 - 18:30 lives including the right to change our mind um my first roommate in college I have not had contact with him since that first year when school year ended and he and I both are happy with that I think um but but at least the school year could end for him people with disabilities don't have that option um turns out the same thing is true um about marriage you know so if someone told me I had to go back and live with my ex I'd be a behavior problem in order to
• 18:30 - 19:00 get out of it so I'm just saying many times we we do these kinds of things to people just because they have disability and we expect them to adapt to decisions we make as opposed to honoring their decisions then we come to sex and related issues and and I typically get off on a tangent here and I'm gonna make it really brief and that is to reflect the the data that we now have that some 85% of all women with disabilities are going to be sexually abused at some point in their life and if nobody's told
• 19:00 - 19:30 you that before shame on us that it's just so incredibly pitiful that we're not that it's it's a pandemic it's not an epidemic it's a pandemic and um and we have to do something about that but that's seldom do you see sex related issues as the subject of a petition for guardianship even though it may be behind some things and the most contested guardianships have those issues in them and and I think we're dealing here with a programmatic issue
• 19:30 - 20:00 not a legal issue turns out that people don't care what the person in the black robes said sitting up there on the bench if they're intent on and I always worry about my age and and certain um idioms here but if they're intend on hooking up they're going to do that no matter what the person in Black robes said so so when we come to sex and related issues that's it's not a legal thing it's a programmatic and educational piece um and and we have to treat it that way and
• 20:00 - 20:30 then finally what will happen when parents and family are no longer around the the idea that we convince parents to seek guardianship because it'll be easier for them or because they need to or whatever and then and then um recognize that the person's going to be without their parents for a full generation some 30 to 35 years and yet we've set the parents up to do this one thing to become the guardian it's a horrible planning tool when the person is going to outlive those parents by 35 years and it turns out that despite the
• 20:30 - 21:00 best plans despite siblings despite despite uh family friends and everything else more than half the time a person ends up with a stranger as their guardian and if that's good planning then I don't understand good planning so let's talk about why we should avoid Guardianship and to me the first one is to avoid the public Declaration of incompetence or incapacity if we're talking about epic um that that's not a positive way to approach anything or do anything and and
• 21:00 - 21:30 it's a it's certainly contrary to what we know now about supporting people and building on their strengths and capacities and and the directions we going it's certainly different than accommodating people and and allowing people to be different one from the other it it's just a I don't think that it's useful now we need to understand where Guardians ship came from in the first place and um I'm not going to spend a lot of time in this but Guardian goes back to the days of King Arthur and
• 21:30 - 22:00 the round table if there ever was a King Arthur in a round table but it goes back to feudal times in England when it was important to the government to the crown that there be single intact Parcels of property that there be the landed gentry or robels who who controlled most of the property partly for reasons of communication but also because it was from those landholders that they rais the FIY or the or tax you know a portion of the crops or part of the livestock whatever it was and it was also
• 22:00 - 22:30 important because it was the Surfs who worked the land who were conscripted into armies and and so if you if you let the normal process of inheritance go you'd have that property split up into lots of pieces of property over time it wouldn't take very long before uh people had to work their own land and uh and and didn't have extra for for fty ETC but but the issue was seen as one so important they had to come up up with a way to cover things like what if the person who was going to inherit was a a
• 22:30 - 23:00 child an infant even what if they were unborn and then what if instead they were a gambler spelled with an o r or incompetent or feeble-minded or one of the kinds of terms they would use back then and what if that was the case how do we how do we protect to keep that parcel intact if they might give it away or gamble It Away part part of it parts of it away so they came up with a way to handle the the rights of the next firstborn male
• 23:00 - 23:30 air and that was guardianship so until 1970s until the 1970s in this country all guardianship pertained to was Estates all guardianship of the estate was all there was back in the 70s they started to say guardian of the state can also be guardian of the person but it's a methodology that's old and I think outmoded outdated any terminology you want to use there but that's where it came from so so the idea that we have to declare somebody incompetent and remove
• 23:30 - 24:00 their rights uh in order to in order to have someone make decisions for them doesn't make any sense to me anymore and and it hasn't for some time but nor does our Research into this show that that makes any sense and instead of a public Declaration of incompetency we ought to be promoting the independence of individuals and and and their dignity and freedom of choice when we talk about dignity if a person with a visible disability meets another person on the street automatically the people talk to
• 24:00 - 24:30 the person they're with not to the individual well and now we've removed any obligation the people have to talk to the person because after all they can't make any decisions anyway because they have a guardian and the person they're with either has authority over them or is the guardian um and and and so that you don't need to talk to the person at all and I'm not naive enough to believe that if we save money by not doing guardianship the money would show up in human services or or in healthc care or schools or anything else I'm not naive enough to believe that but I can object
• 24:30 - 25:00 to how expensive guardianship is because you have everything from the courtroom and the judge's time and the BFF and the court recorder and the clerks and uh and the witnesses and I you just have over and over you have expenses that probably don't need to happen and uh and I can and I can complain about that even if I don't believe we see the money turn to where I want it to go and then it should be important that you understand that courts don't always follow the law um especially when it comes to this subject
• 25:00 - 25:30 and our state supreme court appointed me some years ago to a blue ribbon task force on guardianship reform and in that process we among other things sent questionnaires to judges in this state and some other states but um and why they didn't follow the law about the preference for partial guardianship versus plenary which means full Guardianship and why they didn't um order the guardianships to be promoting people's Independence as opposed to just
• 25:30 - 26:00 substitute decision maker the reason the judge told us judges told us that they didn't do that VAR a little bit but mostly they were about um being lazy it took more time they told us to determine what rights to leave the person and what rights to take away it took more time to spell that out than just say plenary and then everything's covered they also said you know we're saving the state money because what if they have to come back and get more more Authority than we give them the first time then we're saving
• 26:00 - 26:30 them the the the need to have another hearing oh and by the way for partial guardi ships there's an automatic hearing again in five years for plenty there isn't so they were going to save the state money by not having more hearings um you know so so whatever their motivation was um we have a real issue of them following the law and then we talk about um things like uh you know people have certain protections if they're accusing of committing a criminal act um and they have certain
• 26:30 - 27:00 rights so so you're accused of committing a criminal act you get an attorney of one you can't afford one one to be appointed for you same is true for guardianship um you have a right to trial by a jury same with guardianship you have a right to cross-examine Witnesses same with guardianship I mean so it goes on and on but what we find is in many instances judges don't even require the person to be present so they never face the people who alleg they need a guardian and don't get their opportunity
• 27:00 - 27:30 in court at all and and it happens sort of automatically all people do is say you know it's best if they're not here well then you know if there if we're talking about a criminal trial we'd make sure every person was present even if we had to put glass around them plexiglass around them stop them from spitting on people or or or tie them to their chair so they didn't weren't too um disruptive or gag them because they were verbally disruptive but we would never think about depriving them of their due
• 27:30 - 28:00 process rights in any shape or form and yet in guardianship proceedings where people are entitled to new process rights because they're about to lose something um you know they're about to lose their rights then we're willing to just ignore a due process so in all the years we've had guardianship um and the authority to uh have a jury trial we've had one only only one time despite the many thousands
• 28:00 - 28:30 hundreds of thousands of guardianships in that period of time has anybody gotten a jury trial we we see representation that is so um so lacking because people want to make sure they they get appointed for another in another case because many times what you get are attorneys who are doing their building their practice or or need the work and need the appointments so they're never going to upset the judge I mean it's just over and over
• 28:30 - 29:00 again people with disabilities are are are subject to different standards than other people are subject to um and I tell the story um when I turned 30 I bought an airplane and wasn't a red sports car it was actually an airplane and uh and my staff at the time told me how dangerous single engine airplanes were and all that kind of stuff but that's all there was back then we were paid once a month and
• 29:00 - 29:30 um on because that was a A celebratory kind of a thing we would we would go to a place that serve liquor refreshments and and the boss would usually buy around and so for a couple of months after I bought the airplane um those who haven't own an airplane you don't you don't know about air worth certificates and tie off it's a whole list of things including insurance and acrost of the airplane but I didn't go because because my finances were strapped and so they asked me and and I presume they liked my
• 29:30 - 30:00 company but maybe it was the round I bought when they asked me we miss you and said we we'd like to have you come join us and and I and I had to say you know um I can't afford it right now and and and so after the second time they suggested maybe I didn't know how to handle my money because I clearly liked to go and I clearly enjoyed it and so I was depriving myself of that because I didn't handle my money correctly and they suggested maybe I needed a guardian now I'm presuming that was tongue and cheek just because they still accepted my signature on the paychecks but but
• 30:00 - 30:30 but let's say that I'd have a guardian appointed because if you lumped all the times together I haven't handled money well you could make a case that maybe I shouldn't be allowed to handle money but let's say that it happened and so and and so a couple years go by and I your honor why don't you let me handle my money again I've learned my lesson boy I I'll be far more careful I'll do a lot better job and and of course the response would be Mr H what evidence do you have you can handle money well you're honor you haven't let me handle any so so it isn't like I could produce evidence well Mr O how do you think we
• 30:30 - 31:00 make decisions here we make based on evidence we have before us and we found all kinds of evidence to decide you couldn't handle money and now you come and say you want to handle money again with no evidence on the other side we're we we're based on precedent here we we follow um things that are based on the evidence we have and we stick to that so I mean it's Catch 22 in many ways but but it's a the difficulty in terminating or modifying in guardianship is a very real one now the process is called just
• 31:00 - 31:30 in case you wonder about this taking people's rights away the process of undoing a guardianship is called restoration of Rights a very difficult process and very timec consuming difficult process and you're required now to unpro what you proved before and and and so it doesn't happen very often and and and termination the same and so so so we start off with guardianship being pretty
• 31:30 - 32:00 permanent especially plenary guardianship then we come to the point where judges attorneys and guardian at itams have little or no training they're not required to have any training and disability whatsoever so you have the person um making a decision you have them represented by and you have the people who make recommendations all like they're plucked off the street corner any without any knowledge of disability or or what we do in dis disability or prog programs or services or anything in disability so so
• 32:00 - 32:30 so you have to you have to think wait a minute we we're we're letting all this go to people who don't know about the disability so don't know about what's going on why would we do that again that's a good question why would we do that only five schools in this country teach disability law none teach about disability so unless the person had a family member or some other experience uh when they were young they don't know anything about disability whatsoever and yet they're
• 32:30 - 33:00 making decisions about these things um based on their experience and their background which doesn't include things to do with people with disabilities then corporate Guardian problems um who can take money in people's Independence and and I you may not recognize that if you have a guardian appointed under the mental health code there's no requirement that that Guardian ever meet you ever meet you let alone see you on a regular basis let go to meetings let alone go to meetings about you let alone do anything else there's no requiring
• 33:00 - 33:30 the law about that and as the blue task force brought forward a proposal to say there should be a minimum requirement of every 90 days that a guardian see their Ward um the probate judges opposed us and we lost the probate judges prevailed and there's no requirement and and their argument was if you put that kind of requirement on Guardians we're not going to have enough Guardians to go around so you end up with people who who get paid to be guardian or take part of the the pittance that the people get in an SSI to be guardian and then don't
• 33:30 - 34:00 bother going to meetings go anywhere or see the person I'm not saying they all do that but but U I'm just saying to you we have people in prison with a public Guardian in prison from Midland we have people the principal from guardianship Inc in Wayne County we sent Mr French on the west side of the state to prison in Eaton County we sent two different um public Guardians to prison I I'm just telling you that that um you do
• 34:00 - 34:30 corporate guardianship or public guardianship that's no guarantee of anything uh and and unfortunately we sent most of those people away because we could follow finances what they do to the person is far more difficult to ascertain and to follow and to try to correct then finally gu simp simply doesn't do what you want to do you still have to go through all the efforts about applying for Medicaid or SSI about all everything else you have to do all those same things over again whether you're guardian or not um and and so it doesn't
• 34:30 - 35:00 do what many people think it's going to do in terms of of making life easier and just so you don't think that I'm the only one who thinks this about what guardianship does to people this is the Connecticut Supreme Court they use the term limited we use the term partial but Guardians appointed by the court whether whether limited partial or plenary can be vested with substantial powers of a respondant therefore the appointment of a guardian implicates a respondent's constitutional right rights you those inalienable rights we all have no turns
• 35:00 - 35:30 out no you don't you don't have all your constitutional rights if you have a a guardian appointed um and and they're Abridged in many ways even if it's not a plenary guardian it's not a full guardian and and I'm and this is the Supreme Court in the state saying that to you the Iowa Supreme Court what they contrasted was the fact that if you're if you're if you undergo a civil commitment for a psychiatric disability you have all kinds of protections we have you have to be seen
• 35:30 - 36:00 by you have get to you get a court appointment within the first three days or 90 hours you you can you be and get regular monthly or and then six-month intervals where you seen by Court to see if you still should still be held in this psychiatric facility but for people developmental disabilities they can be put somewhere and held somewhere without any Court involvement without any Court um supervision without any S without any looking at the effect of what you're doing at all so the Iowa Supreme Court
• 36:00 - 36:30 said whoa guardianships involves significant loss of Liberty that the court oversees for people with psychiatric fa psychiatric disabilities California now California and tennessy use the term conservator the way we use the term Guardian um so a person in California might tell you I'm not conserved where a person in Michigan might would say I'm My Own Guardian um and and so they their Supreme Court says you know we're giving um conservator
• 36:30 - 37:00 has more control over a person than somebody if they had to go to prison so so greater control over your own life is given away through guardianship than it would be if you've been convicted of a crime and I I bring this up partly because my age to make sure we uh we Sol this problem for people who are aging as well as people with disabilities and and they testify um in um in some of the saddest kinds of
• 37:00 - 37:30 testimony you will ever hear to Congress on a regular basis about all the abuses of Guardianship and conservative ships this is from Claude pepper Claude pepper was chair of the pepper commission uh the House of Representatives appointed the pepper commission after Claude pepper started to look into the abuses of people who are aging and they let him establish from the House of Representatives thepp commission this is a direct quote from the prepper commission and and that
• 37:30 - 38:00 commission was the first one were the first ones to look at um issues around the abuse in nursing homes back in the 70s so there were no standards in nursing homes up until then so people would license a garage and unheated garage and put beds in it we we we really had abuse nursing homes are still pretty abusive mind you but uh but nowhere nowhere near what they used to be and so he learned that all the abuses that were happening for people people aging and if you don't know Cloud Pepper's name if you go to a agency or
• 38:00 - 38:30 the advocacy groups that work with people are aging you'll learn he's an icon for them he's they give advocacy Awards which are like CL Pepper Awards he's really an icon for people who are aging well what Claude prepper discovered was some of the very same things that are happening to people who are aging are happening to people with disabilities um and you know and in that stand you know people gain disability of age are having the same kinds of out comes as other people disabilities that that stands the reason but he learned
• 38:30 - 39:00 that the reason people got to that in many instances was because they'd had a guardian appointed and he found it incredible that you could through aivil proceeding bind a person in all those ways that a guardianship can bind a person and in his opinion the only thing you could do worse to a person was to put him to death and and and that's pretty Stark I mean this is part of a longer quote if you you want to go back and look at it but but it's from the pepper commission um of which Scot
• 39:00 - 39:30 pepper was the chair um and and and which Yan's work was done to try to protect rights of especially people who were aging but people with disabilities too this is Michigan versus the the nation that Michigan is 40 you're 40% more likely to have a guardian in Michigan than you are in another state 40% so in Michigan we have this kind of proor automatic um let's get a Guardians appointed and and sadly some of the people who
• 39:30 - 40:00 recommend the appointment of a guardian have never read the statutes don't understand what it does won't be there when the parents are gone and the person faces difficulty with a a guardian who won't even come see them I mean they're not going to be there for that partion of the person's life yet they feel free to recommend Guardianship and and I just want you to know that Michigan has this level of overuse of guardianship you can't can't convince me and and I know because I I travel pretty extensively
• 40:00 - 40:30 and have worked in almost every other state in the Union there's no difference in the number of people with severe disabilities in Michigan versus other places there isn't we don't have more dis more disabled people or more severely disabled people it's just we have a habit a tradition that keeps on going of appointing Guardians and and and that's clearly not fair or right this is a convention on the rights of persons with disabilities the crpd is
• 40:30 - 41:00 called in short and we signed this the President Obama signed this it has yet to be U yet to be ratified by the Senate but um it's recognizing that people have individual autonomy and Independence and the freedom to make their own choices right in a preamble it talks about that 60 some countries have endorsed this have ratified this already um and it talks about discrimination on
• 41:00 - 41:30 the basis of disability um it nullifies the recognition enjoyment or exercise of all human rights and fundamental freedoms that's what that so so that's what discrimination is it's the exclusion or restriction on the basis of disability which nullifies the recognition enjoyment or exercise of Human Rights and fundamental freedoms so if you do that to somebody you're discriminating against them and and that's similar to what the American Disability Act says and and and clearly that's that's how we ought to be approaching all this stuff and it says we have to respect
• 41:30 - 42:00 individual autonomy including freedom to make one's own choices and the independence of persons so all parties equal under the law except if you have a guardian appointed if you have a guardian appointed you have no standing under the law on your own none and so you don't get equal benefit of the law or equal protection you aren't even a person under the law and and so so you know when we say this a dra ftic step to take for a person and yet we do it that often in
• 42:00 - 42:30 Michigan there's something wrong with that and and it says State parties shall recognize that persons with disabilities dra legal capacity on equal basis with everyone else I don't think they people should have a right to anything less than that and then it talks about the support people may need in exercising IL legal capacity so supports and accommodation uh um is is is where we ought to be coming from American Disabilities Act everything we're trying to do these days
• 42:30 - 43:00 is uh is in that direction and it turns out that most people who petition for guardianship are doing it for the right reasons you know they're asking the court to appoint a guardian for persons related to or for a friend because they think it's the right thing to do it's also true that most petitioners don't come up with this on their own they're encouraged by someone else to seek guardianship almost always that's a person who provides services or or or or
• 43:00 - 43:30 sees them in another way other than um as a family member that same Iowa case that I talked about earlier and whether a guardianship should be established the court must consider the availability of third- party assistance so if there's something else somebody else around to help a person then there's no need to appoint a guardian in Utah not necessarily a liberal Court they say the content of
• 43:30 - 44:00 the decision what we have to what we have to pay attention to not the ability of the individual to engage in a rational decision-making process if we're getting good decisions there's need to appoint a guardian this is from Tom dur the great granddaddy of self-determination of course and he wants to reject the idea of incompetence and replace it with the idea of assisted competence again it supports um that preserves their rights this is my favorite persons cannot be deemed incapacitated if their
• 44:00 - 44:30 impairments are counterbalanced by friends family or other support you got that in your life you shouldn't need a guardian again those are the Supreme Courts and States saying those things if you want to look at Medicaid from and Medicaid of course has uh has for a long time looked at uh person- centered planning and they don't use the term promising or best practice they they instead include in a framework so gradually they more and more they began to say about person centered planning
• 44:30 - 45:00 it's what you ought to be doing now if you want to use a waiver in Michigan you have to do person centered planning you want to do waiver in any state you have to do person centered planning of course we've had a statute that says that for quite a while but now they're starting to see under the framework rights and responsibilities protections of Rights and decision-making Authority we're starting to see that appear and and I think if you just followed the what happened with persons that are planning across the last 15 or 20 years he would say oh oh this is going to come to us too with
• 45:00 - 45:30 Medicaid this the one of the other things that the Blue urban task force asked were from um the legislature to say um could we find have a finding necessary under the mental health code of guardianships necessary so when you had a court proceeding there has to be a finding of incompetence um and and and and and then you're then you're on your way we said could there also be a finding of of necessary since these words are in the
• 45:30 - 46:00 code already since it's a law already couldn't we have a finding on the record of whether Guardians ship's necessary or not um and again the probate judges opposed it and we didn't get it but again that makes so much sense to me that that if you looked at um is it necessary before you did it um and the law already calls for it why shouldn't there be a finding of that we weren't again the priv judges support that oppose that so so this is where I'm coming from then it's a it's a fact that
• 46:00 - 46:30 we can not no longer ignore the in congruity about taking a person's rights away in order to protect them and we talk about guardianship as a service and protecting people etc etc well I don't think taking people's rights away is a way to assist people or protect them and and that that's the core question in my mind is is what are we going to do um if we want to assist someone accommodate them help them it shouldn't be we're
• 46:30 - 47:00 going to remove their rights in order to do something so we talked then about what are the what we can do instead and and I'm not fond of the term Alternatives because that that gives guardianship too much Credence you know um these are alternatives to guardianship as much as they are ways to help people overcome barriers in my life I have Crohns you know unknown ideology uh um I think what
• 47:00 - 47:30 I most I know about it is um certain percentage of people I think it's 5% of people die within six months of diagnosis and Eisenhower lived to be 86 and died of it so so you know you have a wide span there you know and and of course if you're diagnosed with u with something going wrong they RL out everything else to come up with crohn's so you spent a lot of time with people who have both the tool um and the inclination towards torture and I hope nobody on this call is a
• 47:30 - 48:00 gastroenterologist but and and it's changed a lot it's nowhere near as bad as it used to be but I have the pleasure of course of getting one of those every six months um and and so I I feel free to call it a a torture it it unnecessary but torture now my doctor when I was diagnosed with crohn's and the gastroenterologist told my doctor um so there experts beyond my doctor even and they said yep it's Crohn's um he brought his text he and I
• 48:00 - 48:30 were friends we had we used to race motorcycles together before he ever became a doctor and so when I had my appointment he brought his textbooks he was G to have me read about Crohn's and I said wait you decide to become a doctor I decided definitely not to become a doctor and I pushed the books back at him and said you're gonna just tell me what to do I don't have no way I'm GNA ever know as much as you and you're never going to know as much as the gastroenterologist how could I ever become expert enough to to do make my own decisions here and so we came to a conclusion and that was that he would tell me what to do he's my he's my
• 48:30 - 49:00 adviser and my advocate he tells me what to do and if it's not too honorous I do it or even if it's honorous he gives me a certain look I still do it um so so so people with disabilities however evidently aren't entitled to that they're not entitled to get an expert to help them with what their taxes a plumber to do their Plumbing they have to know how to do all these things because they can't make decisions about unless they know how to do do them all right I mean I know how to change I knew how to change U piston rings uh pistons
• 49:00 - 49:30 and cars I wouldn't touch a car today for anything because that black box is ruling and controlling everything I'm now at the mercy of the guy behind the service desk when I take my car in and and he's more expert than I am and he has diagnostic tools I don't have so so I mean the rest of us live our lives that way having other people do things that we don't know how to do um and and or couldn't do um but people with disabilities somehow if if they can't do
• 49:30 - 50:00 it themselves we won't allow that we won't say you can have an advisor on this or that I mean I wouldn't think about selling a piece of property without having someone uh with a real estate background do that for me or help me I just wouldn't think of it and so so why we would expect I have to have that expertise that other people go to school to get or read books to get it's beyond me but to say that that's different for me than person with disability I think that's a mistake I think we have to
• 50:00 - 50:30 afford people whatever they need for making decisions then we come to person centered planning and and not only is that Statute in Michigan but but it's a it's a process for planning and supporting a person and I think that's a logical place to take decisions that need to be made and find out if you have the expertise at the table if you don't get it uh and then you have variety of people making that decision and I think that's I I think that's far better than the court appointing one
• 50:30 - 51:00 person to make decisions with or without input from with or without input from anyone else so you instead have people who care about the person are supporters of the person helping to conclusion to make decisions I think that's far better than having a single courta appointed person do it um and and I think it enhances the dignity and self-determination of people too because they lead that person Center planning process and and that's that's so important important I think when you think about what are we doing to people or how should people's lives be lived
• 51:00 - 51:30 that we take that attitude as opposed to saying well we're appoint someone else they're gonna make your decisions for you gonna substitute your somebody else for your decision making that's just not acceptable Powers of Attorney and I want to I want to talk about these two kinds of Powers of Attorney just for a minute um we'll take a break in a minute or two but but let me talk about that first power of attorney um is giving someone else your agency asking someone to do something for
• 51:30 - 52:00 you and whether it's a real estate agent or it's someone to sell your car whatever it is you have someone else to do something for you uh you give them that Authority whether it's durable or or straight power of attorney what's different would be springing so now you have power of attorney that doesn't come into effect until something else happens and that's what the rest of us should use in our estate plans and for plans for our end of life and all the things
• 52:00 - 52:30 we want or don't want to have happen to us at the end of life we it'd be durable power returning we don't want to give up that give that authority to someone now we want to say if I'm ever um not able to respond or or found by two doctors to be incompetent or whatever term you put put to it this is what I want to have happen here's why I want to make my financial decisions my other decisions my medical decisions that kind of planning we should do and we should give those that authority to someone but it doesn't take effect until something else doesn't spring into action until
• 52:30 - 53:00 something else happens powers of returning we're talking about for people with disabilities are going to have to be instead Powers of Attorney that are effective now just like I wouldn't want to say um sell my car if this I would want to say here's the authority to sell my car period um and and I so instead of the springing power of attorney these terms don't mean very much it's just can I give someone that power of attorney um and and can I designate that
• 53:00 - 53:30 they're going to do it for health care which is where I think we Face the biggest obstacles and we're going to talk about that some more I'll show you some examples and everything I I want to mention protective orders briefly what we have is many times when there's a an issue or a problem and someone feels like someone uh is going to be subject to harm from another person or there's someone might on them um in order to protect them we go and take the rights away by doing Guardianship and I just want to indicate
• 53:30 - 54:00 that there are other ways to do that as we do in domestic kinds of disputes we do protective orders I mean it just seems to me that there are generic things we can do rather than just resort to removing people's rights in order to protect them um and then we come to trust and I'm going to spend more time on them because I think that's one of the tools we have uh that we can we can let parents know is a tool for the future let's talk about contracts again let me give you two examples that are
• 54:00 - 54:30 real life examples of of what happened um Richard was a man who um we helped get out of cold water a number of years ago but he was um already in his 50s and he'd been there for 40 years Richard came out and we ended up getting my job at the Veterans Administration Hospital ironing Sheets if you remember back in the day they used to iron sheets of great big rollers this is before no iron sheets or any of
• 54:30 - 55:00 that kind of stuff and and I I was worried about his fingers getting caught in there and I think the machine was a Wrangle but might have been a might have been a mangle it doesn't matter anyway Richard earned enough money doing that that he actually bought a house and it's not a house like you're thinking about this is 600 square feet counting the stairway it's on two stories so we're talking about a pretty tiny footprint for house and uh Richard was really proud of his house but I get a call one day and Richard is uh crying and blubbering so
• 55:00 - 55:30 much I can't understand him and and and he's talking about his house this that and the other so I made it I I'm I think I got his acquiescence to say I'll come by after work the best I could tell he was in agreement with that well as soon as I turned the the corner to Richard's house I knew what the problem was it was the south side of his house and the roof had solar panels and this is back in the day before they were photo El electric photo electric they instead were just
• 55:30 - 56:00 heated water just water got heated out the roof and he heated his house that way in large measure uh and certainly his hot water was produced that way but anyway um it's clear as soon as I saw that he can't afford that you know he he's he has relatively small social security check because he U didn't work that many years he had enough quarters to qualify but not to get very much in the way of a check um and there was no way he could um have afforded to to put
• 56:00 - 56:30 them on and in one F swoop or um because he was UN Medicade accumulate that kind of money or that he'd be able to pay for it over time so sure enough he not only had signed a contract for it he didn't understand that the contract meant he had to pay in the future he thought the approximately $180 he gave them covered it and he didn't understand um he couldn't read um and he certainly couldn't read the language in the contract or the fine print um and sure
• 56:30 - 57:00 enough somebody had sold him this contract that and and he signed a mechanics lead meaning of that what that means is they could take his house for non-payment well this took a couple of days and and a number of calls um and and finally he had $180 restored he was given back $180 they came and they took the plumbing for the heating for the heating of the house out but to the till the day he died Richard had hot water from the solar
• 57:00 - 57:30 panels because they were too expensive to to remove or couldn't be used again or something but but again that contract if he' had a guardian would have been void on its face but someone still could have installed all the panels and done all that work and we'd have to instead later on say well that contract was valid on wasn't was void on its face and here's the paperwork to show that Etc so it would have been no less of a problem um than it was for for for the fact that this contract was clearly voidable and so so the idea that it was void a was at
• 57:30 - 58:00 least as effective as the idea it was would have been void on its face and take his rights away in order to do that made no sense and I was assured by the um by the company that the salesman would be looking for a new job and I don't have any way to confirm that but but they assured me he would not be working for them any longer the next instance I was able to check and and in fact the salesman was gone we had two guys who who lived inan but worked in an arbor and they
• 58:00 - 58:30 used to take the bus and they learned how to take the buses and transfer and the transfer took place under at a a strip mall um under a a roof that stuck out quite a ways and um um I guess protect people from the rain or snow this day must have either been very cold or windy or something because they clearly stepped inside one of these places at the strip mall and they ended up with we didn't learn about this until um some months later when a big um big
• 58:30 - 59:00 payment book showed up at their apartment um a p person who who would help them during the middle of the day discovered that mail in the mail came this big um payment book and sure enough they'd signed up for more Fitness than they ever could have used in their lifetime and they should have been allowed to move in you know but but but it was U again when you when you talk to them they they had no idea what they were signing up for and and and certainly well one of
• 59:00 - 59:30 them was really good at reing reading emergency words and and important words neither of them really had reading skills and they certainly could not have understood the fine print even it was read to them so again um these guys ended up with two threee years at the fitness place they ended up with their $17 which is what they scraped together for the down payment they had that returned to them and the salesman was looking for another job it it was it
• 59:30 - 60:00 would be clear to anybody that they were um abusing their Authority by by signing these guys up for anything and and I we checked for a couple times after and sure enough that salesman wasn't there anymore but I'm I'm just saying to you we can make the decision ahead of time to say Let's uh let's remove this danger to begin with and we'll make sure they have a Guardians so they're not entitled to sign a contract or we could say you know if someone sells them something and
• 60:00 - 60:30 and without understanding that they don't um shame on without recognizing and affording them what they're entitled to without looking at how the accommodations they need shame on them and I'm not using I don't think we should use disability as a way to get over that isn't what I'm talking about at all I'm saying to you instead taking away people's rights in case somebody's going to pray on them like that doesn't make any sense and and I yet have yet to an instance where anybody who couldn't understand um read or couldn't understand a contract has ever been held
• 60:30 - 61:00 liable for that contract and and and I been at this now as as you may have heard already 46 years so almost 47 so I I I in my view not we don't don't not only don't we understand what contracts are and how many things that affected people's lives uh these kinds of instances are are not only rare but but they are solvable then we come to finances again and again there are a couple of them
• 61:00 - 61:30 listed here one is a rep pay and and if you don't know Social Security Administration will make a decision that their check needs to go to a third party and they'll make a decision who that is you can make recommendations and stuff but but those decisions are not even appealable um so so you end up with Social Security deciding U that some people aren't going to be able to handle their checks so they make a third party um responsible and give it send the check to them and and then limited bank accounts are tools we can use to say you know we can require
• 61:30 - 62:00 people to have two signatures on online whether it's a checking or savings account or we can we can set a ceiling limit is how much can be taken out at a time now what you can't get from most major banks are pourover accounts which says you can only take out this much because there only going to be this much in there each day so Clint who um taught us um more than any book ever taught us about this kind of stuff showed us the need sometimes to have more than just a
• 62:00 - 62:30 ceiling limit on how much you could take out because they took out $20 and $20 and $20 you buy till he could buy a stereo you know all in one day so so take limiting amount you can take out isn't good enough for him limit the amount that was there each day for him but I'm I'm just saying to you there are other ways to handle this we're going to talk about some more of those um in a bit we've had people say well the schools have told me that they're not going to um share information with me anymore when my son or daughter turns 18 and they're not going to let me see
• 62:30 - 63:00 progress notes they're not going to let me see the results of testing they're not going to invite me to meetings they're not going to do any of these things and and what I would say to you is it requires only a release of information to get that and the release of information shouldn't just be this form it should be on the on the school district's own stationary you should ask them for their release of information only way I would do this when reason I use this because they refus me that and if they're refusing that um then then there's a broken relationship that isn't
• 63:00 - 63:30 probably going to be solved very easily um and and it doesn't make any sense to continue the relationship but I'm just saying to you that that a threat that you have to be guarding in order to do these things or get this kind of stuff uh is is empty all you need is a release of information and and the release of information ought to be on the district's own stationary not on in this form it's just that you absolutely have to have it this work when people say for medical reasons
• 63:30 - 64:00 um you have to have a guardian to make medical decisions that means they probably haven't read the law this is part of Michigan social welfare act so for sure it applies to Medicaid whether it applies to private insurance is there's room for some argument and some people have contested that I don't know if they've been successful yet but but they are contesting that and so what I'm telling you is if you if you read the second part of this if an individual is unable to make decisions make medical decisions
• 64:00 - 64:30 then providers are required to obtain written consent of an individual's nearest relative Guardian if they have one or parent except in emergencies where they don't need anybody's consent and this is Michigan's law Michigan law you can you're welcome to go look this up but what what it is is um saying that not only should people have the right to consent to treatment and if is followed but if they can't give that consent then you can go to these other people and get that consent
• 64:30 - 65:00 nearest relative guardian or parent unless it's an emergency when you don't need consent and and if if people who recommend guardianship haven't told you about this if they don't know about this Shaman this is Michigan Statute and and and uh and it worries me that people out there recommending guardianship uh on a wholesale basis or else we wouldn't be where we are in Michigan compared to other states uh and part of it is because their mistake that they don't understand about the surrogate decision-
• 65:00 - 65:30 making that's in Michigan Statute medical Powers of Attorney and and again um I'll give you I'm going to show you a couple examples so this is a power of attorney that I'm I'm sort of fond of because it's um how plainly it's written how easily it's written power of attorney doesn't have to be drafted by an attorney and I think made avilable to
• 65:30 - 66:00 you our our forms and power of attorney the department of of uh of Health and Human Services in Michigan has uses the same booklet but without our name on it for Powers of Attorney um the behavioral health and and uh bureo so so again Powers of Attorney can be used and and what I'm saying to you is if you have a situation where it's private insurance and not
• 66:00 - 66:30 Medicaid um then maybe you want to have this in your pocket as a parent this the presentation I'm giving you is one I designed for parents just because I hope professionals and parents hear the same thing um it' be nice if they heard it together but if they don't then they hear the same thing anyway and and and how simple this is um it's been accepted accepted over and over again and and now endorsed by as I say the department here's another one and if you're happier with this go ahead I just think it's too
• 66:30 - 67:00 wordy um you know I don't think it needs to be this extensive to convey just the idea that I want somebody to help me if I'm sick or need to go to the hospital ET Etc and and I'm just saying those are two different examples of of of Powers of Attorney this again if your relationship if you're worried about um people who are serving your son a daughter as a parent um excluding you you can do this I again
• 67:00 - 67:30 you don't want a relationship that that's broken and that that's as broken as as requiring this but I just just so to be on the safe side if you ever felt you needed that you have it okay and and I'm I'm this is an in case in a terrible circumstance repe we already talked about that but Social Security's own decision and paperwork and procedures and and sometimes this is can be very oppressive tooo so there are times when you can get Social Security if you have a doctor sign that that this is a good
• 67:30 - 68:00 budget um learning process that the person's going to be part of assigned by a doctor they might relax that requirement the person has to have a rip B um again because it's kind of a oppressive process personal money managers mostly agencies who deal with people who are aging have come up with what they call money managers and it's partly because people who are aging don't want to forget a check or don't want to write all those
• 68:00 - 68:30 checks every month or or you know because some you can have um automatic withdrawal some you can have pay online etc etc but some come every month and they differ and they're different you have to pay attention to them and get paid by a certain time and everything else if you want to relieve yourself of that this appeals to me too um maybe because I'm aging Maybe because I have a disability but but for sure this helps to make sure people get their rent paid for sure this helps people not
• 68:30 - 69:00 to not to be in a rears on things or have their their phone shut off or whatever it is and and this is typically very low cost the folks that we signed up to do this pay about 35 bucks a month for handling the stuff and it's 35 bucks they don't have mind you but on the other hand everything gets paid everything gets done and some people have that fee paid by a trust and not out of the person's own money but I'm
• 69:00 - 69:30 just saying to you that that these are the kinds of things that uh that that a personal money manager can do and the place you find the most are in organizations serve people who are aging I don't know of disability organizations doing this yet but but we found them in in organizations that serve people who are aging and and that's uh they're happy to take uh take our our folks on the same way so the check social security yes whatever it is goes to the The Entity and then the entity pays the
• 69:30 - 70:00 bills and sends the rest of the check to the person and they we've got them even to send the check in solv it so it comes once a week as opposed to a lum sum near the beginning of the month I'm just saying to you there are lots of ways to handle money automatic bill paying you're probably all familiar with that this was a terrible issue for a long long time and uh when people many people including
• 70:00 - 70:30 people with disabilities sometimes would get credit card in the mail they learned that somehow you can turn that into what you want at least up to $500 and then all of a sudden they want to be repaid and and and people this business didn't necessarily understand that or or try to ignore that or something in the process and and getting rid of credit cards debt is a whole lot more difficult than uh getting rid of a a contract one of the reasons it's more difficult is
• 70:30 - 71:00 because credit card companies are so powerful they now even though you can file a bankruptcy and you can be forgiven almost any debt except child care or credit card debt that's how powerful credit card companies were they got that you you can be forgiven for all debts except your credit cards of course Child Care is a different thing but but or or or support payments but but that's how powerful they are so they have very little reason to
• 71:00 - 71:30 settle and what we've done instead is figuring out how we can keep cards from coming turns out that people when they got the card and they go through the painful process of of a budget to pay it off they say I'm never going to do that again I'm never going to do that again but a few months later that wears off and they and they see this CH to get something they want the next time a credit card comes in the mail and off they go again so if you get people to make the decision when they're
• 71:30 - 72:00 when they're paying off in the difficult position paying off a previous credit card you can opt out for five years online or print out the opt out and then becomes permanent and this prevents credit cards from being sent to people it doesn't prevent people from getting credit on their own a different situation though than when card shows up in the mail and uh and you go use it it's a little more difficult to apply than it is to just use the card that came in the mail which now form then forms the contract I want to talk about a state
• 72:00 - 72:30 planning and and I and one of the things that I that I tell parents um is that the most important thing you can do for your son or daughter is understand that after you're gone they're still going to need people in their lives and while you can count to a certain extent on siblings and and that kind of stuff what people really need are unpaid people who are going to be in their life past the parents
• 72:30 - 73:00 Lifetime and just say counting as only on siblings means that nobody's going to follow a spouse to another state to take a job or nobody's going to uh become ill themselves or pred decease their brother or sister any of those kinds of things what we know now is that um those kinds of things happen and that the best way you can mitigate against the person getting uh somebody in their life they don't want in their life is by making sure they have lots of other people in
• 73:00 - 73:30 their lives and it doesn't require um some organized campaign to do this it requires time and effort but parents should plow the fertile ground plow you you it's not like going on a street corner and trying to sell pots and pans it's instead going to where you think you can make ground and they need to they need to ask their friends family friends need to ask their extended relatives and even their neighbors but not just the people who are their friends or the neighbors who are their age they need to ask their children who
• 73:30 - 74:00 the age of their son or daughter so they get involved and and I'm asking them and the most tears I've ever seen are when a person who um has been kind of Sheltering other people from their child by not wanting their child to be a burden to them as their neighbor or as their friend whatever whatever um and and they protect the other person more than they protect their son or daughter when when they get to a point of saying let's do a person centered plan I want invite all of you in to talk about my
• 74:00 - 74:30 family all my family including my son and daughter with a disability I've never the times I've seen the most tears are in those kinds of situations when other people realize they can be part of your life and that you wanted them to be part of your life and more than just uh your life apart from your son and daughter when people realize that that your son and daughter is part of you and all the people recognize that there are lots of Tears shed happy tears and and and so when you decide to go in that route and say I'm going to recruit more people in my son or daughter's life
• 74:30 - 75:00 who aren't paid to be there you've just enriched a whole lot of things including your own life it turns out but but but I urge people to do that and for a couple reasons the first is to to make sure that there's someone around to help do person- centered planning that has what the person wants as primary not what a service provider wants not what uh people are paid to be there want but instead not not for people who are pay but but the unpaid people who care about the person first many times people
• 75:00 - 75:30 with disabilities are not very reciprocal about relationships and so there needs to either be Assistance or um or some other intervening piece that happens because they don't reciprocate not and of course autism would be one of the situations where it might not occur as other people would see it and so on so forth but but it's true for other disabilities as well so so that what I think needs to happen is parents need to set up an estate plan
• 75:30 - 76:00 that covers something you don't normally think about in the state plan these are just the terms you use for trust so settler is the person who creates the trust um truste is the person who imagines the trust and then of course the beneficiary receives the benefits of the trust and here we're not talking about a support trust we talking about a Medicaid qualifying trust un unless people are wealthy and I mean wealthy healthy you need to do something that qualifies people for governmental benefits specifically Medicaid and and for parents of young children I don't
• 76:00 - 76:30 know about all of you but parents of young children you might not understand how important Medicaid is but when the state can get 60 cents on the dollar from the federal government by using Medicaid to provide a service whether that's residential vocational case management support coordination whatever it is the state turns as much of the services people get into Medicaid services as they can can to try to capture that 60 cents on the dollar so so people may not have any recognition of how important Medicaid is
• 76:30 - 77:00 but it is the lifeblood for people with disabilities unless they come from very wealthy families and and of course asking a relative or a family friend or something to be a um to be the trustee means imposing this kind of fiduciary duty on them and it includes and standards of investment and other kinds of things they may not be ready to accept um so you maybe have to look for a different place to to get a fiduciary but um a support trust you don't want because this says you got to spend the money before you're going to be eligible for
• 77:00 - 77:30 medicate and then you have nothing to be a supplement to the subsistence of governmental benefits amount to nothing to provide a set of new boots every year or or or cover television cable or even TV set whatever it is so the amenities that come with a trust are extra things that go above and beyond what government benefits paid for and it could be all those kinds of things and this is another benefit of it it preserves eligibility for that and allows the
• 77:30 - 78:00 trust to act as an advocate for the person and let me get into this if the trust is not very big trust companies don't want to talk about it so then you need to look for a pool trust in your area or or somebody who doesn't pool trust it'll cover your area pool trusts allow people to put smaller trust together and use them as use that pooled money to invest but there are sub accounts kept for each individual person um who has a who's part of that trust so I just want this is there's a larger document like this that shows
• 78:00 - 78:30 even more possibilities but I if you look down here in that lower leftand column it talks about monitoring expenses and and one of the things that we found parents doing is saying okay if I'm G to be gone I instead want to have somebody do what I would have done if I were around so I'm going to ask the trust to send somebody out to look at son or daughter every two weeks or month or whatever it is uh and I want to make them to make sure the person's um happy
• 78:30 - 79:00 and healthy uh that that's what's important to me now the role of a of a trustee when a parent says that is different than the role of a guardian a guardian is only responsible for making sure that what goes on is in the person's best interest happiness is not a part of that um you know it's kind of a grade level of existence compared to what a parent might imply that they want the trustee to look after so the trustee then is is obligated to send out a person who's not
• 79:00 - 79:30 a provider an entity that can go and monitor the person on whatever basis parents want them monitored we have people who are seen by a nurse every six months because people are worried about medications we have people are seen by an attorney every year because people are worried about financial um inment of some sort but mostly we're talking about somebody to go out and see if the person is healthy and happy what I recommend then is those people you've got in the person's life all get a copy of that report every time somebody goes out and you entrust them with the ability to
• 79:30 - 80:00 call the trustee if they see something wrong in the report and say you need to check that out that puts them involved in the person's life even when they don't have daily contact with a person um even when they've only seen them at person Center planning meetings Etc it just allows them to be a part of the person's life and and continue to be involved in and and care about the person that that's really important I think if you want to maintain those kinds of relationships there has to be some you can call it artificial if you want to but but some
• 80:00 - 80:30 some recognition that they have another role to play an ongoing role to play um but you could look through this list or or this list we want to see what else can be covered then we come to self-determination and and I'm not going to spend a lot of time on this I'll go through this briefly though but what we're talking about with self-determination is the Freedom the ability to plan a life rather than purchase a set program we're talking about ability for a person with whatever help they need whatever assistance they
• 80:30 - 81:00 need to control a certain part of the dollars that they have to purchase the supports they need we're talking about arranging the resources uh so the person can be um in involved and and uh achieve meaningful participation in their Community um and then we're talking about responsibility so we expect the person to play a valued role and to to do the best handling the money too now when we look at this we say well this person can't be self-determined they're not able to do this I'm talking about
• 81:00 - 81:30 with whatever supports they need so that the friends and family and other people around them can provide whatever support they need to do this when you look at supports as opposed to uh some of the other things that go on in people's lives we're taking um those kinds of things that that put on a par with other people so the supports could be the need to help somebody transfer in the mornings to the TR you out the chair
• 81:30 - 82:00 to bed whatever it is or it could be supports to help them from running in the street and get hit by a car or it could be find to help them with money what whatever the supports are but I'm saying what I'm saying to you is when you think about supports that way then we can put whatever supports in the person's life they need to help them get through all this process including um what what who to spend what to spend money on who to be in their life who not to be in their life and so on and so forth I'm going to go through this next set of things kind
• 82:00 - 82:30 of quickly that people did a a nice thing for me here they um I I I found the synonyms to to freedom and then I found the antonyms to Freedom turns out those are the synonyms to guardianship when at one point we were going through this process trying to figure out were we going in the right direction and so we did a couple of focus groups um and a
• 82:30 - 83:00 guy who worked for me back then Paul stansky who used a a headp pointer and a board and I was assigned to be his reader not because I was good at that but because he wanted to ask me questions and so what we learned from that process is that what people wanted was person- centered planning around a life that they wanted that built on what they were good at and what they could do they didn't want interdisplinary teams who assessed them and then built goals based on their deficits you it's as
• 83:00 - 83:30 though people with disabilities don't have a right to have a disability you're gonna what they can't do is what they have to work on you know so you're you're sentenced to work on what you can't do um if you looked at the video what Gail had to do until until we finally got her well she had to work on feeding herself every day and and she wasted weight to almost nothing I think was taking in as many calories as she as she wasted and it took her over an hour each day to do that and then another 15 minutes to clean her chair and she up
• 83:30 - 84:00 afterwards so three times a day she was taking in barely enough calories to keep her going because she had as it was determined by professionals residual capacity to feed herself so she was working on that now she was 39 and working on that she could be fed very respectfully so as you saw in the video she ended up going to Community College and and learning about computers and art and everything else and eventually getting a job in a an art supply place
• 84:00 - 84:30 till her gallbladder gave up but but I mean she had a she actually could could achieve something instead of spending those hours of her day trying to do something she couldn't do it'd be like um if you were good at math and someone said to you you can become a mathematician you can teach math you could become a rocket scientist unless you have a ability then you have to work on geography or something you're terrible at you know and and so um Richard when we first got
• 84:30 - 85:00 Richard who ended up being able to buy a house with his work at the VA hospital he was learning how to tie his shoes in his 50s with a shoe board on a table and and I'm just saying to you what people said to us was over and over again don't assess me and determine what I can't do and then ask me to work on trying to get better at it let me work on things I'm good at and where I have some ability and where I can achieve and I can can build some self-esteem among other things and so so they they said we wanted we want person centered planning and the kinds of things that that help
• 85:00 - 85:30 us plan to get the kind of life we want and they said people should understand that um sometimes if you can you can J judge by our behavior um communication that if I run from somewhere it might mean I don't want to be there might not just be Mal adaptive Pap you have to concern so you you have to change so I stay where I don't want to be might mean you should listen to me and and I think we think about Behavior many times uh um as not not as
• 85:30 - 86:00 communication but as something else that we have to fix and I think that many times we should be looking at it is what can we learn from it and and how can we be sure that they're not telling us something with that behavior um then people said they wanted choice and control they thought it was demeaning to be sent to a bed in a six-bed home or a slot in a program uh they wanted supports and personal assistance that they could say uh who have control over rather than
• 86:00 - 86:30 agency and provider staff and they wanted their own home and they didn't care whe they owned the home very much some did but some didn't care the own it was can I control comes in in out of that front door is this my place whether it's rented or owned or whatever and and those are the things people told us let me let me tell you a story um about how important it is that you have control over who's in your life because it's pretty tough to have a good quality of life if you can't control that so again
• 86:30 - 87:00 this is another gentleman who asked me a question he said how would you like it in fact it was Paul at at one of these sessions who said how would you like it if through that door where you live at 3 o00 came somebody you hadn't seen before and for the next eight hours they're going to be in charge of you tell you where to go what to do and then The Stranger could even put you in a van and drive you somewhere and you didn't even know where you were going you could end up at a doctor's office you can end
• 87:00 - 87:30 up lots of places and maybe at the doctor's office this guy you had never seen before would talk about you from a piece of paper and what was really bad was that you feared for your life every inch of the way because he's such a terrible driver and you knew the whole time you going have to get back in that van and risk your life in limb with him driving again and you had nothing you could do about it how' you like to live like that well clearly um you wouldn't want to I wouldn't want to now imagine that
• 87:30 - 88:00 through that door at 3:00 comes somebody you know but you don't like them and they're going to come and serve you and if you need it for your personal hygiene they're even going to touch you in some intimate ways and you don't like them and for the next eight hours you're going to be in charge of you tell you where to go what to do Etc and for your future of your for your future tomorrow the day after from 3:00 until 11 o'clock every day that's going to be what your life looks like this person who doesn't
• 88:00 - 88:30 like you or person you don't like is going to be in charge of you even worse then what if that person doesn't like you or you don't believe they like you and they're gonna touch you in in ways how would you like to live like that I mean I'm just saying to you that when you think about those things um in your own life or for somebody you care about all of a sudden takes on different dimensions and and even if we have to say you know they should have the authority to say who's in their life even if they only show us that by Behavior then we need to honor that we
• 88:30 - 89:00 need to say they have a right to live a life that has some quality in it and if they're living under one of those three circumstances they're living a life that doesn't have the kind of quality they're entitled to and and I and I understand that this is not the way the system is and I understand that um that that we need to be driving further and fur further in that direction and that you may or may not have much control over that but that ought to be the direction we're going is people having control in
• 89:00 - 89:30 their life not be the subject of of someone who takes their who has the rights taken away in order to be in charge of them especially a stranger and and we have some other things to consider here the average guardianship proceeding takes less than three minutes so if you think that guardianship is a part of his whole justice system where Lady Justice is blindfolded and weighs things you're wrong another way you're wrong is that
• 89:30 - 90:00 the court watch Project showed that in 96 plus percent of the time if petition gets before a judge the guardian's going to be appointed this is not a weighing of things this is just following the petition by someone who doesn't know disability or understand that anyway and so so that so what really gets to be important here is cutting off petitions because they're clearly going to go in One Direction clearly the the effort's going to be to make sure the person has their rights taken away and they have a guardian appointed and and and if you don't
• 90:00 - 90:30 understand how how that is then you miss the point about Michigan versus other states you miss the point about people's rights are what they're entitled to and and to say that well they don't recognize some rights that they have or or they'll never exercise some of those rights some they will and not to have them removed is just an anitha we can't that's not acceptable and being this doesn't make them a second class citizen makes them a
• 90:30 - 91:00 third class citizen now they have no standing under the law at all and and that's just not acceptable that they have fewer rights than prisoners that's not acceptable this is from Marlene caner who's a professor Meritus at Syracuse University and a good friend and and this is what the your statement and and I I'll go through these I'm not going to spend time on this but Burton blad is an icon or should be
• 91:00 - 91:30 an icon in our field and most people know who he is christas in purgatory Etc and if you don't you ought to be reading about Burton but he talked about in the real world people die for the freedoms in our world we hold conventions invite each other to conferences etc etc and what turns out to be better in our world is because professionals let it get better not because uh people have the ability to demand it and and so he talks about least restrictive and and and what I would say to you is in some ways we need to get
• 91:30 - 92:00 out of the way I don't care what our role is we need to get out of the way and put people in charge and I don't care how much experience they have at being in charge I don't care how impaired we think they are or anything else we have to somehow understand that people on who back on Whose back we make a living should be in charge of their lives and just to show you this not just me saying that this is an invitation from the American Bar Association um back in 12 I think it was and the American Bar Association
• 92:00 - 92:30 both the section on Elder elder law and the section on disability are moving in the direction of saying we're going to skip guardianship going to something better we're g to move Beyond Guardianship and get to supported decision-making um and and so um a wonderful group of people were were in New York City at the our association met around that subject okay and then in 13 the Quality Trust out of Washington DC held the next
• 92:30 - 93:00 Symposium so again more and more people are talking about this and following this a center for supported decision making was established that Quality Trust funded by the um by the administration on community living um and then again in 15 that Resource Center on on suppor decision making held another round table and then this last year whoops
• 93:00 - 93:30 some out place here and this last year the um advoc the autistic self- advocacy Network um as supported by the foundation there did another one so we're now seeing statutes in two states where before you can appoint a guardian you have to have tried self supportting decision making by Statute we're seeing suppored decision- making unfortunately be routinized in ways that I don't think is useful in some other places and there
• 93:30 - 94:00 are forms and everything for it but what we're seeing is a real change from saying guardianship is where it's at um and and and this is a this is a clearly a wave that's coming um and um if you'd asked me seven or eight years ago I would have said we we'd never get to this point but but we're really seeing change coming except in Michigan the National Association of national guardianship Association has Now supported supported
• 94:00 - 94:30 decisionmaking this is an organization that certifies Guardians and that kind of stuff they're not supporting supported decision making instead of Guardianship and and so I'm saying that there's a movement out there that you wouldn't recognize if you're in Michigan unless somebody told you about it and and on top of that there's a need for all of us to try to um make this the kind of world where people are in front people with disabilities um as opposed to the ease of this or the ease of that um and and
• 94:30 - 95:00 and we have to be thinking about long term and help parents think about long term how can we make the best decisions and I'll I'll answer um some questions then that I won't answer questions that are specific about a case I I want to answer questions that are lusta to other people and and I will not answer questions where there's a divorce involved I those are the most contentious most terrible kinds of situations you can imagine so if there's a divorce involved don't bring that one
• 95:00 - 95:30 up okay I I've spent way too much of my life sorting through some of those okay thank you Mike can you hear me today yes we totally can perfect okay thank you um so thank you Don for your presentation I know you hit on um pretty sensitive topic here but um as someone in the field who has worked alongside several Guardians um and their families I am a
• 95:30 - 96:00 bit concerned that this presentation did not hit on any benefits of Guardians at all and really stress that um Guardians are kind of a terrible thing and I'm I'm also a bit concerned because I I don't know the audience that's listening right now but I wonder if even some of them are Guardians themselves and so I really would like to highlight some of the benefits of what Guardians can and have done in the past um as well as um there's there's some other things that I
• 96:00 - 96:30 could talk about but that that's my main concern here so I would just like to highlight that and try to bring that out and have a bit of a discussion on that I I've never said that um Guardians are bad or Guardians do evil things um some do that's not a it's not a general piece what I am saying is it makes no sense in this modern world to continue to use that idea and what I'm saying is that um parents who have all the right
• 96:30 - 97:00 best intentions I've always worked for Boards of uh parents people with disabilities for for as I say all 47 years that's who they've been my boss and and I'm U convinced that becoming Guardian doesn't help with very much you can do the same kinds of things without being Guardian as many of the courts recognize and the makes no sense to take people's rights away in order to help them or or or to protect them that's what I'm saying and guardianship in my mind is an old
• 97:00 - 97:30 outmoded um methodology and and there are ways to deal with that now that we didn't know about before I'm not saying that people had the people were evil when they sought guardianship I'm not saying that Guardians don't do good things that's not what I'm saying at all I'm saying if you're doing good things for a person you could do that without being their Guardian okay I and I have an agree to disagree kind of thing here and I'd like to hear other people's thoughts I just think that this presentation was very one-sided and I was hoping to have other
• 97:30 - 98:00 people's thoughts on the topic well I meant for it to be one-sided I I hope to fewer petitions for guardianship in the future I don't I don't like where Michigan sits so I I meant for it to be one-sided if anybody had any question about that try to say that right up front and I I would like to hear from the leadership such as Sharon or Jane on these topics as well I'm just feeling very uncomfortable with this presentation to be honest and so I'd like to have more discussion on this topic yeah right I ask you to rethink it so that's
• 98:00 - 98:30 all can you hear me yes okay awesome I just wanted to make sure I just I had sent that comment so that I could make sure that all the trainees had a chance to um voice their opinions um I had I just wanted to add in that I um also agree with Alyssa we are um kind of in our work in environment we are working with um Guardians and we're working with um severe problem behaviors and so Guardians like I mean while they there
• 98:30 - 99:00 are some concerns with some Guardians I've seen a lot of good examples of what Guardians can be and so I just like I've had kind of both aspects to that and like I've seen both sides just want to make sure everybody knows I was talking about guardianships for adults not children okay children children need someone to act in that capacity if we've remove par parental rights Etc um we we work with Guardian uh
• 99:00 - 99:30 Guardians for adults where I work okay but there are good people and bad people in every Walk of Life I just wanted to add in my um sorry I just wanted to add in my um commentary too I just there's been number of times that um in the past um a guardian was really necessary for um certain like like a severe problem behavior that
• 99:30 - 100:00 caused a client to go into um the hospital or um they didn't have anyone else in their life and so like they had no family and they didn't have really any peers to support them or anything and so those are just some of the type of situations and the guardian was very positive in that aspect so I just wanted to add in that thank you in the absence of that I I do want to say how important it is to make sure people have other people in their lives it isn't um and and people they
• 100:00 - 100:30 choose um it isn't acceptable for us us to go on and say isn't it a shame they don't have everybody else in their life I mean we need to take on the positive role of assuring that people have other people in their lives who aren't paid to be that that really gets to be key long term for people you know one of the things that was not talked about out is how to ensure that people fully understand the choices they are presented and that implies that you understand the choices the pros and cons
• 100:30 - 101:00 of each of those choices and whether or not you need a guardian or somebody else to help supplement those decisions would you care to address some of those issues in particular questions about where a guardian might be appropriate and or not appropriate to supplement choices for a person with intellectual disabilities I I would go back to person CER planning and person CER planning Done Right includes people sitting
• 101:00 - 101:30 around trying to assist the person support the person including going through options and and whatever there else there is I I mean it isn't it isn't as though we're saying well instead I want people out here to just be abandoned and have to make decisions on their own and have to consider all this kind of stuff I mean if I'm entitled to advice I'm entitled to people helping me and and Advising me on things I don't know about people disabilities ours too and and that that should include all the options and what we can determine and uh
• 101:30 - 102:00 there are different things if I need expertise just like a person with disability should have that person come forward with expertise if we're talking about a place to live maybe we need a real estate agent maybe we need someone who who who offers different places to live and can show options or or just demonstrate options I mean I'm not trying to say that that we're saying people with disabilities can can without Assistance or any Aid or without support go out and be like the rest of us that's not what I'm saying I'm saying that they need supports and assistance to get them
• 102:00 - 102:30 to where we are that the American Disabilities Act doesn't say that people have to be on their own it says they need they should be accommodated and I'm saying that that people intellectual disabilities that's specifically what I'm talking about uh people with intellectual disabilities should be um supported in decision- making should get whatever assistance they need in decision- making and and that and that should be through a a process a logical kind of process like person Center planning done right where their allies
• 102:30 - 103:00 and supporters are in the room assisting them U with coming to conclusions and making decisions Etc I I'm not saying we should abandon them um to make decisions they've never made before or or about things they don't know anything about or could never know about I'm saying they need they should be entitled to the assistance they need to get past that and this is Wayne again I have no problems with all the assistance suggestions you're offering my question I guess is what are the limits in this particular instance uh should a person
• 103:00 - 103:30 be allowed to make a decision that causes Financial banqu or causes harm to another person in other words should they be held legally and financially responsible for their decisions uh even if they're going against the advice of other people in their area so that's where the for me that's where the hard part happens is what happens when you actually make have people making decisions in spite of best advice that may cause harm violate
• 103:30 - 104:00 laws violate policies cause Financial ruin or other serious health consequences and once again I guess we all have the right to make mistakes and I would kind of support that notion but uh I would hope that there would be some full understanding of the consequences of different decisions that are made if if you if you saw the stuff under um self-determination we talked about responsibility it isn't something that we can say okay you go you spend whatever money you want and whoever money you want to spend Etc on doing the
• 104:00 - 104:30 stuff we're saying you need to be responsible and that means um taking up finding way to earn money if you can or or to increase your spendable um or disposable income it means handling the money you have responsibly etc etc I mean so so I'm not saying what we need to do is uh turn people loose like a teenager um most of whom need Guardians even past the age of 18 I mean I'm saying instead the responsibility people have around people there's even one of
• 104:30 - 105:00 the things in there is that we would never support anybody doing something that was harmful to them you know and nobody who cared about them or supported them would be supportive of that in a person Center planning process okay now what do you mean by supportive what do you mean by supportive is the real question we're getting at here and that is what are the limits of being supportive versus restraining people from making really bad decisions that sometimes do happen so one of the things this is an
• 105:00 - 105:30 Wayne I did a lot of this kind of work for a long time I was a social worker and a support you know in a support capacity and one of the things I came to realize was that having a guardianship or not having a guardianship you can't stop someone from doing something that maybe might be harmful to themselves but what you can do and you don't need a guardianship to do this is you can figure out how to have a a group that people have a life they have a community of people just like you and I have family and friends and
• 105:30 - 106:00 co-workers and the librarian down the street and the people in the grocery store who know us who support us on a day-to-day basis and so that what we've done with a system the way it is now is we've taken that away in a sense from people and said oh the guardian will take care of that but that takes away people's rights and it I can't stop you know I've worked with a lot lot of people who had guardianships and the guardian was never able to stop a person from doing something you know it was the supports around the person and the people in that person's life that could help them you know not get to that point
• 106:00 - 106:30 and yes some people make bad decisions we all do but but the part is we want to try to support each person to be the best they can just like we hope the people in our lives do that for us yeah and I have nothing no problems at all with supporting people's right to make decisions my only concern is that we do everything we can to inform people about what their choices are options as well as the consequences pro and con of each of the choices but also to recognize that one person's rights end
• 106:30 - 107:00 where another person's rights begin and sometimes some of the choices that can be made Might infringe on another person's rights and that's where the difficult decisions here uh that go that kind of find the hard points in this policy which is a very admirable policy but that's where the hard points actually come in is where you say where are the limits to free choice person centered person's right to make all of their choices so that's where for me the
• 107:00 - 107:30 concerns actually might emerge and those would be those rub points are the places where sometimes the most important uh policies and Concepts actually develop I I think that we we've gone along with um guardianship to an excessive extent in Michigan and hasn't stopped that you know I mean it isn't it isn't as though that's been a Panacea or like that's uh that's helped um we don't
• 107:30 - 108:00 have fewer of those instances in Michigan than others even though we have more Guardians it's a it's a whole different idea different way of approaching this and saying look what supports can we bring to bear for this individual um as opposed to the way we kind of strip everything away from a person and and treat them as though they're an independent actor there's no person centered planning process should ever lead someone or support someone to do something that's illegal or that's harmful to them you know and and that
• 108:00 - 108:30 doesn't mean you can protect people against everything and people doing the wrong thing because we can't protect um people who don't have disabilities from doing that but it does mean that the the support should be there to get them to where they need to get and and when you talked about options earlier that's really important that people get the full range of options that are available and that's Center planing is important because the consequences those kinds of things get ignored many times for
• 108:30 - 109:00 folks yes I'm sorry this is I was just reminded by Mike at seven o'clock and we like to on time but this is a great discussion I think there's very many layers to it so hopefully I hope we'll have some other opportunities to to kind of T touch in on these and and go deeper as well as a group so thank you everyone Mike you want to tell your last tid B it thanks
• 109:00 - 109:30 Don