Lincoln-Mccreight on the challenges of guardianship
SHAPIRO: Tonight on Disabulletin, On Guard: An interview with Michael Lincoln-Mccreight concerning the challenges of guardianship and the right of self-determination for individuals with disabilities.
SHAPIRO Good evening. Up until a child turns 18, their parents or legal guardians are usually the primary final decision-makers in their lives. Major Choices including curfew, where the child will atteilnd school, and if a child can work, are just some of the many decisions a parent is permitted to make for their children up until they reach the big one eight, after which the child is legally considered an adult.
SHAPIRO: But for persons with disabilities whose families or legal caretakers believe that the person cannot make major life decisions, guardianship is used as a last resort if methods such as Supportive Decision making, Advance care planning, or designating a power of attorney have failed. Supportive Decision making refers to when persons with disabilities appoint someone to help them make decisions about their personal and financial well-being whilst taking their right to self-determination into consideration while Advance Care planning involves a discussion of a person with a disability’s health care needs. This discussion involves the person, their primary physician, and their caregiver.
SHAPIRO: To obtain guardianship, one must file a petition in a probate court concerning an individual with a disability. Then the court must decide if said person meets the bar of incapacity following the gathering of evidence and testimony from those most familiar with the person’s mental, physical, and decision-making capabilities.
SHAPIRO: There are three types of guardianship: Plenary, Limited, and temporary. A plenary guardianship permits the parent or legal caretaker to take full control of a person with a disability’s decisions if the person is determined to be permanently incapacitated. A limited guardianship permits a caretaker to make some but not all decisions and is the least restrictive of the three. Finally, a temporary guardianship may be implemented if a person with a disability is currently but not permanently deemed to be incapable of decision-making, and eventually, their right to make decisions may be restored once they are deemed capable.
SHAPIRO: The first part of a plenary guardianship, or appointing a guardian of a person, gives the caretaker of a person with a disability the power to make all decisions related to an incapacitated individual’s well-being including but not limited to residential, medical, and nutritional, and healthcare needs The second part, a guardian of estate or conservatorship, gives a legal caretaker the power to make decisions related solely to a person’s finances.
SHAPIRO: According to a 2018 study undertaken by the National Council On Disability, “over 1.3 million disabled people are under a guardianship in the United States.” But since many states do not track data relating to guardianship, this statistic is often cited as the most recent data.
SHAPIRO:But some of the challenges related to guardianship are that judges may not explore alternative options before one is implemented or if one is not terminated should a person with a disability become capable of decision-making. What’s more, since regulations concerning guardianship are based on individual state rather than all-encompassing federal law, abuse of a guardianship by a caretaker of a person with a disability can occur whilst making prevention of such abuse difficult.
But as of this year, 25 states have passed legislation recognizing Supported Decision-Making as an alternative to guardianship, with Texas becoming the first state to pass legislation encouraging this approach in 2015. And just six days ago, Senator Bob Casey of Pennsylvania proposed the Alternatives to Guardianship Education Act, which provides grants for states to educate family members and courts considering guardianship on alternatives. However, prior attempts by Casey to pass similar legislation to improve state data practices and that codify the civil rights of those under guardianships have stalled in Congress.
Michael Lincoln-Mccreight is a disability rights activist whose actions spearheaded the unanimous passage of a bill within Florida’s state legislature to improve guardianship regulations for Floridians with disabilities by requiring courts to consider alternative methods before a guardianship is established. The bill passed on March 4 following a unanimous vote of the Florida house and set to land on Florida Governer Ron Desantis’s desk, will go into effect on July 1st of this year if signed.
Mr.McCreight spoke to Disabulletin from Florida yesterday. He discussed his experience with guardianship and what led him to propose the bill.
SHAPIRO: Michael, welcome to Disabulletin.
MICHAEL LINCOLN-MCREIGHT: Thank you.
SHAPIRO: For our listeners out there who are unfamiliar with guardianship, what is it and how does it impact individuals with disabilities in the United States and in Florida?
LINCOLN-MCREIGHT: It’s basically where you take all of your rights away. You don’t have the right to vote, you don’t have the right to get married, and you don’t have the right to choose who your friends are. You don’t have the right to go out and hang out with friends. You don’t have a right to do anything. A guardian controls every aspect of your life and you have zero say on what you do.
SHAPIRO: Right. And what’s the process of obtaining a guardianship? So I know that there’s a lengthy court battle. What does a court hearing deciding a guardianship look like? And what are the challenges in the court system related to guardianship, you know, regarding oversight, how it’s conducted? What about your personal experience?
LINCOLN-MCREIGHT: I only know the experience I have. And the experience I had was they send doctors to your home, which is a primary care medical doctor [and] a psychiatrist. Then they’ll send in an attorney. And then the attorney will basically tell you you have a court date, and for you to be there. And the judge decides ultimately, if you should have your rights, or you should take have them taken.
SHAPIRO: I see and how does the judge weigh that decision exactly? You know, what are the factors that go into a judge making such a life-changing decision?
LINCOLN-MCREIGHT: Basically, it’s the examining committee, Whatever the doctors say, he [the judge] listens to. But ultimately, it all depends on the judge. Some of the judges will just be like, “I don’t care, I just want this case off my desk, no rights, sign, get it off my desk.” Some’ll take it actually very serious[ly] and say, “Let’s look into it a little bit more.”
LINCOLN-MCREIGHT: But there are judges, that don’t care. And just say, “Oh, I just want to go home, this is a waste of my time, sign it, off of my desk.” You’ve got to realize judges hate sitting in probate cases, because 99% of it is just boring, probably to them, to be honest.
SHAPIRO: So how does it start? I mean, where does a guardianship start, though? I mean, does it start if-?
LINCOLN-MCREIGHT: So in the state of Florida, anyone can file a guardianship against you. Someone literally has to go to the clerk of court, get guardianship paperwork, file it, and then that’s when it starts. Like I could literally go to the courthouse right now with your information, and go put in a guardianship for you.
SHAPIRO: And what’s the next step after that?
LINCOLN-MCREIGHT: They just start looking into it. They start scheduling the examining committees. And it’s involved with the courts at that moment.
SHAPIRO: Now, as I’ve understood from the research I’ve conducted in preparation for today, I know there have been a number of issues associated with the regulation of the guardianship process in your home state of Florida. But primarily, in the research I’ve conducted, it has to do with elder citizens when there’s lack of oversight in guardianship. How did those concerns blend into your advocacy?
LINCOLN-MCREIGHT: There’s a lot of guardianship abuse in the State of Florida. There are guardians who actually take money from individuals with disabilities, and even [the] elderly. There could be guardians who want to hold them hostage and not let them see their family and their friends. There’s guardians who just don’t care and [are] just in it for the money. But there are some guardians that probably take it very seriously and are good guardians. But not everyone in the State of Florida deserves to have a guardian.
SHAPIRO: What was your experience? When did all of this begin for you? Because I know you touched on that you were on a guardianship before. Do you mind giving us a dive into what that experience was like for you, how you got out?
LINCOLN-MCREIGHT: So I was in a guardianship when I aged out of foster care. I was petitioned. Someone petitioned the court to file a guardianship against me. One day I woke up and there [were] doctors coming to my house, I didn’t even know they were coming. There was a psychiatrist, and then there was a medical doctor. And then there was an attorney. Then I got a letter in the mail saying, “Hey, you have a court date, didn’t even know what the court date was for. So I went to the court. The judge decided that he didn’t want to listen to a word I had to say, and said, “you don’t have any rights, we’re stripping all of them from you.” It made me very upset, and then my whole life changed. I couldn’t go out with friends, couldn’t go out and do my volunteer work, I was an explorer for the St. Lucie County Sheriff’s Office. I couldn’t do anything, like I was completely stripped from all of my rights. And then, I was in a group behavioral home. And that’s when the hostage [situation] started. I couldn’t go out and see my friends. They said, if I called for help, that I would be in serious trouble. And so I hid in a closet, I called Disability Rights Florida, and I became the first person in Florida to get Supported Decision Making recognized.
SHAPIRO: Now was this when you turned 18, was this after school? I know you mentioned that you had come out of foster care. What age did this happen, because I know that guardianship is often put on the table when transitioning out of high school.
LINCOLN-MCREIGHT: It was put on the table when I didn’t even know that I was being filed for guardianship. And they basically filed it without my knowledge in the court. So that’s not always the case that they [persons with disabilities] get a guardian, right when they get out of high school, it can be at any moment. But what’s so funny is, you don’t even get notified that someone filed a guardianship against you until doctors come.
SHAPIRO: So that leads me to my next question, what are the alternatives to guardianship? Again, based on your experience, what does Supported Decision Making really look like when applied properly?
LINCOLN-MCREIGHT: You basically have all your rights back. You have the right to vote, the right to get married, the right to choose where you want to live, the right to have a relationship, All of your rights are back. Except for one or two that you don’t think you can handle or anything like that. But there is guardian advocacy, which is similar to the same thing. But, you do still have a guardian, but you ultimately help make the decision as well. But the thing we’re trying to aim for the most is Supported Decision Making because it’s kind of like Person Centered Planning. The decision maker is in the middle and he has supports that he can reach out to, to help make decisions.
SHAPIRO: And what are those other resources that that supported decision maker can reach out to? Because, again, you mentioned that there’s an examining committee, what are the increases in oversight that this new bill addresses that weren’t there before?
LINCOLN-MCREIGHT: So this new bill is going to require judges to look at Supported Decision Making before making a decision and putting them [persons with disabilities] in a guardianship. So regardless of what the examining committee says, this bill is going to require the judges to look at Supported Decision Making before guardianship. So they have to exhaust all the least restrictive options before putting someone in a full guardship.
SHAPIRO: So almost like creating an appeals process?
LINCOLN-MCREIGHT: Pretty much. Yeah.
SHAPIRO: Can you take me through it a little bit more? So you go before the court system, right? And then, the judge goes to the exam board. The exam board gives back a report. Does the judge then, if this bill passes…this current time, judges do not have to make another appeal to a supportive decision-maker. They can grant a guardianship. With this new bill, am I to understand then, that they would need to appeal to a second party? And I know again, you’ve mentioned before, this is just from your own personal experience. So I wouldn’t ask you to speak to anybody else’s. But, how do people find these supportive decision-makers when they are facing guardianship? How can they find those support systems?
LINCOLN-MCREIGHT: So, it could be just your family and friends to help you, you know, make decisions. It doesn’t have to be a complete stranger. Supported Decision Making is letting you get help from your family and the friends that support you throughout your day-to-day life. Regarding the judge, let’s say I filed a petition for you to get your rights taken away, right? And you’ve got an examining committee scheduled. They would end up considering, “Okay, let’s look at supported Decision Making. Is supported decision-making a good fit for you? Okay, we discovered it’s not a good fit, then we’ll look at guardianship advocacy, and then you go down the road. If Supported Decision Making is a good fit, then they will grant Supported Decision Making.
SHAPIRO: Can you tell us what some of the tests would be in determining Supported Decision Making? I mean, when you compare to the doctors, for example, that conduct the tests like they conducted on you, for example. How would this-?
LINCOLN-MCREIGHT: Well basically, [they’ll] just ask you normal questions: What’s today’s date, who the president is, you know, get to know you. It’s nothing hard at all. It’s pretty self-explanatory.
SHAPIRO: So can you tell us after you gained independence, how this fight for the bill started? You know, who did you speak to? What were the steps that you took? What are the most recent developments?
LINCOLN-MCREIGHT: So I spoke to a lot of people.It started from when I was the co-chair of I Decide Florida, which is a supportive decision-making coalition. And we decided that we wanted to come in[to] partnership with Disability Rights Florida, to create a Supportive Decision Making bill. We were wanting to make a law for SDM in the State of Florida. We brought the idea to Representative Allison Tant District 9 rep, in Tallahassee. And she loved the idea, and she actually has a son who has a disability. So we were like, “Okay, we picked a great rep to head sponsor this bill. So then we worked [for] four years, making this bill perfect. And then we got it passed unanimously in the House and Senate floors. And it’s on the way to Governor DeSantis’s desk right now, which is amazing.
SHAPIRO: And I know with a lot of the wrangling, it can take forever to get legislation passed.
LINCOLN-MCREIGHT: So I can only say one word: advocacy. Advocate, advocate, advocate, advocate, advocate. Talk to your local reps, talk to your state reps, talk to your congressman, talk to the governor, talk to the president, talk to any higher elected officials. Because at the end of the day, you sign their paychecks. You pay them. You’re their boss. It sounds bad, but it’s the truth. And good reps and good state senators, they’ll listen to you, like State Rep. Tant. She’s an amazing legislator. Just by talking to her, she’s a big advocate for people with disabilities. There are lots of reps that I know in the Florida State House that are big supporters of the disability community, and they fight for us. And that’s what it’s all about; fighting for individuals with disabilities. Along with other stuff, but they care.
SHAPIRO: I’m sure that there were several other attempts to get a bill like this, what did you do differently? I know that’s a two-part question. But, I think that those are really important questions to address here.
LINCOLN-MCREIGHT: So there was a lot. I can’t talk about the legal aspects because I’m not an attorney. But there was a lot of stuff about the bill that I can’t really mention. Every bill has ups and downs. And so, you know, with that being said, the bill did die the last three years. We couldn’t get it pushed through committees. Whether it was a language issue, or maybe we needed to tweak some things. But, like you said, it takes time to pass a bill. But look at where we’re at now. It’s on the way to the governor’s desk. The fact that we actually got it passed is a big deal for the disability community in the State of Florida.
SHAPIRO: And aside from guardianship, I know that you mentioned to me in our correspondence prior to your coming on the show that the State of Florida has done a lot in terms of disability reform, can you go into that a little bit for us?
LINCOLN-MCREIGHT: So the Governor did a press conference not that long ago, where he actually did [gave] $2.2 billion for the Agency for persons with disabilities. He also has advocated for people with disabilities, especially letting them compete with Special Olympics. But it’s not only the governor, it’s his first lady Casey DeSantis as well. Casey is a big supporter of the disability community. And she literally fights for people with special needs, especially with [The] Agency For Persons With Disabilities. With that being said, he likes to advocate to make sure people with disabilities have the funding that they need to get services that they desire.
SHAPIRO: To bring it full circle here, not everybody needs guardianships. In what situation would you say a guardianship is best and if so, to what extent? Because I know, again, in my research and looking through the American Center for Progress, oftentimes it comes down to the circumstances. Often, there’s a certain bar that needs to be crossed, in one’s best interests. When is that bar reached where a guardianship needs to be established? And I only say this not as to challenge so much, but as to balance the scale a little bit.
LINCOLN-MCREIGHT: I would say for people who can’t make their own decisions, or have difficulty making their decisions, a guardianship would be a good thing for them. But it’s ultimately up to the examining committee’s decision. But it’s also mainly up to the judge. But I would say someone who can’t make their decisions.
SHAPIRO: So from say, a verbal standpoint, or who can’t communicate with a supported decision maker or facilitator?
LINCOLN-MCREIGHT: Correct.
SHAPIRO: What, to you, defines solid communication?
LINCOLN-MCREIGHT: Some people are nonverbal, but they can speak with communication devices. I can speak, you can speak, we’re just regular people. And that’s all there is to it. I feel like anybody, whether they’re nonverbal or verbal, they can make their own decisions. But people with disabilities are treated like they can’t. And the fact that I got this bill passed is a big deal for me. And I’m just so proud of myself.
SHAPIRO: So I guess to bring it full circle, Michael, what is the next step? What can people looking to advocate for the disability community, how can guardianship be improved? What is your next step? And what can we take away from your journey?
LINCOLN-MCREIGHT: So the next step is the Governor. We’re waiting on the governor to sign the bill. I just checked it today, the bill is still ordered enrolled as of right now. So it hasn’t been sent to him yet. But once it’s sent to him, it’s going to go to his desk. And I would say if the disability community, even if it’s out of the state of Florida, reach out to them. Let them know how important this bill is to the disability community. You may think he’s not going to get the calls. He’s going to get them. As a big supporter of the disability community that he is, I’m sure he will. And I’m sure he’s going to want to do a press conference on it.
SHAPIRO:Is there anything that you’d like to say to the disability community and what are the next issues that people with disabilities can turn their heads to?
LINCOLN-MCREIGHT: I always tell a judge, when you sign that contract for that person to have their rights taken away, they get to go and live a whole completely different life. But the person that you did take their rights away [from], they’re not the same. They have all their rights taken away. So, advocate for yourself, stand up for yourself, reach out to your legislators on matters that are important to you. At the end of the day, I believe that if we all stick together and fight for people with disabilities, that we all can advocate together and make Florida and each different state a better state for people with disabilities.
SHAPIRO: Certainly, and I almost forgot the most important people to appeal to: the Guardians, those who are contemplating it, who are in the process, what can you say to them?
LINCOLN-MCREIGHT: Try to get Supported Decision Making. Because like I said, there’s a lot of guardianship abuse going on. I sat on the state task force and heard tons of guardianship abuse stories. It’s not right. If I didn’t have my rights back, and I wasn’t in Supported Decision Making, I would not be working at Universal Orlando Resorts. I would not be appointed on a Disability Advisory Board for Orange County in Florida. I would not have gotten a bill passed. I am so successful because of SDM. I have a good job with amazing co-workers. I’m on a board. I’m about to be on a red carpet event and I have a bill getting ready to go to the governor’s office.
SHAPIRO: Is there anything you can say to parents who are considering a guardianship?
LINCOLN-MCREIGHT: Go with your heart but at the same time, look into Supported Decision Making because I think it will make a big difference and make your individual successful.
SHAPIRO: Michael Lincoln McCray, I want to thank you so much for your time here on Disabulletin, we look forward to seeing what you do in the future, where the progression of the bill goes, and what is next for the Supportive Decision Making community.
SHAPIRO: Disabulletin was created and produced by me, Abe Shapiro. Our theme music is Baseball Is More Than A Game by the George Romanis Sound. Abe Shapiro, WFHB News, live and learn.
