Tennessee Center for Decision-Making Support
Transcript
Marsh Naidoo (00:19):
Hi guys. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for parents raising children with developmental delays and or disabilities. In today's episode, episode number 52, we talk with Penny Johnson from the Tennessee Center for Decision-Making support. Penny has some insightful information for us and we talk all things decision making ranging from how we build capacity, understanding options, deciding and being able to communicate those decisions. She also gives us a brief overview of ABLE Accounts, the difference between Power Attorney and Durable Power Attorney, as well as just a little bit on a special needs trust. The information provided on this podcast is purely informational only to make better decisions. Look at this following resource. That's Tennessee decision making.org. This episode is sponsored by Green Sports Services in Vermont.
Marsh Naidoo (01:43):
Good morning guys, and welcome to the Raising Killen podcast. I am here today talking with Penny Johnson from the Center for Decision-Making Support. Welcome and good morning, Penny.
Penny Johnson (01:57):
Good morning Marsh. Thank you so much for letting me come here today and share the information about the center. We're excited to be able to participate.
Marsh Naidoo (02:06):
Thank you Penny. Penny, what actually is the program about?
Penny Johnson (02:12):
Okay, well the Center for Decision-Making Support is a virtual resource center, which means we don't have a building, it's not someplace you can go to, but it's a website that is also supported with staff such as myself, to guide families through the information, to understand what it is, how to use the resource in the website, and how to get the help. They need non-bias information regarding decision-making supports, which is those things such as a conservatorship, a power attorney, healthcare directive, special needs trust able account, those types of supports that people need when they're be thinking about planning for their loved one with a disability. Let's say someone is, a child is getting ready to turn 18, which is a very common thing in the schools. When a person with disability is about to become the age of majority, the teachers will say, You need to look at getting a conservatorship or something where you can continue to be involved in their decision-making.
(03:15):
And that's what the center does. We have all information regarding all these different types of supports, how to determine what is the best support for you and your loved one, and then even how to evaluate their ability to make decisions and then the tools and resources that you can use to help them develop their decision-making skills, determine where they need help with decision making, where other people need to make decisions for them. And since this is such a complex issue and it's so hard to determine those things, what the Center for Decision-Making Support was developed so that people could find all that information in one location. So what we do is we provide understandable information about decision making supports in one place. We offer limited one-on-one individual assistance, which meaning someone can call, let's say they've been on the website, they don't really understand what to do.
(04:10):
They can call and talk to me, email me, talk to somebody, and we will actually walk them through that whole thought process. Our staff are trained in understanding these different supports and how to determine capacity and decision-making ability and things like that. We do not offer legal counsel now at the center. We're just providing information. We do associate with the Disability Rights Tennessee, and they are our partners. They do provide legal counsel if someone needs more in-depth legal counsel regarding what is explain. I understand what a power of attorney is, but how do I know if it's right for me? How do I know, what do I do if I need to get a conservatorship? Things like that. And that's where we would refer somebody to Disability Rights Tennessee who are legal partners. We do trainings and webinars across the state. We provide tools and resources that help the families to really walk through understanding how much help their individual, their loved one needs. We have just tools on evaluating decision-making ability tools on how to help someone make a decision, how to figure out of these different decisions, which one's the best one, and set up a plan. So we do a lot of this all mostly to educate families so that they have the most information that they can get while they're making these decisions in their loved one's life and preparing for their future.
Marsh Naidoo (05:38):
Penny, you mentioned conservatorship. What exactly is that?
Penny Johnson (05:44):
Okay, so conservatorship is a legal process in which someone is literally going to court to have another individual's decision-making rights removed due to their lack of capacity. And let me, That's a short version. Let me explain that a little bit. So generally what happens is when again, a young person reaches what's called the age of majority, they get ready to turn 18. If they have a disability, their teachers generally will notify the parent or some other professional may discuss that with the parent that your son or daughter is getting ready to turn 18. Legally they are their own decision maker. Now, if they don't have the ability to make some of these decisions, maybe they can't manage their finances or maybe they can't make medical decisions, then you need to look at a legal form or something, some kind of a plan to give the help that you would be able to help them in that decision making ability and have the legal rights to do that or some kind of a legal right to assist them with that.
(06:58):
With conservatorship, it is the one what we call decision making support. That is actually one that is the most restrictive because it literally involves a court process where you have to get an attorney and the attorney files a petition with a court. They provide, they need medical documentation, they need a lot of times educational documentation. Sometimes it's medical diagnosis, but several different documents usually to determine how much decision-making ability that individual has so that the court can then decide does this person have decision-making ability and if so, what areas do they have it? And if not, what areas they have it. Based on all that information, a judge will then decide if a conservatorship is needed, which is basically the individual becomes a war to the court and the court assigns a conservator to manage the decision-making for that person and oversee their welfare.
(08:02):
By doing that, what you're doing is you're lit in whatever areas where the court has decided they don't have decision-making ability. You are literally taking their legal rights to make decisions in those areas away and the court is now assigning someone else to manage that for-the court in that, on that person's behalf. But it's important for families to understand that this isn't something you walk into arbitrarily that, Oh, I just need to go get a conservator cuz my young person is turning 18. You really need to understand what that entails because once you get that conservatorship in place, it is very difficult to have that changed or reduced down the road. Not that a person may or may not need it, but it's something you really want to be sure that that's the step that you need to take. And in the state of Tennessee, what the court does do is they literally go through the areas, different types of decisions in someone's life and they will determine how much decision-making they have, what areas they absolutely don't have decision-making ability.
(09:08):
So the good thing about that is they don't just go in and say, Okay, we're moving all their rights. They actually do look at can they manage their finances? Can they make their everyday life decisions like what they wanna wear, where they wanna live, things like that. Can they make decisions on their medical? How much help do they need with medical? So that way the court's only gonna remove the absolute rights that need to be removed cuz the person just can't decide and they don't understand decision-making in that area. And then all other areas, they get to keep their decision-making authority
Marsh Naidoo (09:43):
Working on your child, having the ability to make decisions starts from an early age and that's something that needs to be nurtured. Can you give us some kind of hints or tips as to how we can help in that process as far as decision-making is concerned?
Penny Johnson (10:07):
Sure. Honestly, people, parents automatically have a tendency to help their child with decision-making, whether the child has a disability or not. It's just part of everyday life. Just like a toddler, you teach them, no, don't touch that. It's hot. As they start, you teach them their colors, you teach them how to put things together and do things. That's all part of teaching them how to formulate ideas or how to process. As they start to enter school, then you start teaching them maybe how to get dressed, how to pick this outfit or match that outfit. Those are though, they seem like very simplistic things. Those are decisions that you're teaching them options, you're teaching them how to really think about it. Then of course as they get older and they're in school, you start giving them opportunities to make decisions about do you wanna be in the soccer team or do you want to do band?
(11:03):
And teaching them how to think that through, not just here's your options. Okay, so here is your options. What do you like about music? Let's talk about it. What do you like about sports? Let's talk about it and look at the options and then weigh them out and let them get input on what's important to them and how they like that. That's just very simplistic decision, teaching someone decision-making and just like anyone else, as your child grows, then you and they get older in life, those decisions become more complex. What kind of classes in school and high school do you wanna take? What do you wanna do? Have any ideas, maybe try different, If they're getting to the age of they're looking at transition, let's try different types of community service where you can see what you like and don't like to start thinking about a career and if you like this area, what kind of training would you need?
(12:00):
And just walking them through those ideas, helping them gather that information and those options and giving them a voice in making those decisions. The more we do that and the more we coach our loved ones and our children on how to do that, we are empowering them and we are increasing their decision-making ability. Just like you said, nurturing is a great word for that because that's what it is. You are nurturing their ability to have a voice, to be able to give input in their life and to really learn how to make decisions because it starts with small decisions. And just like other adults, when we get into life, you transition into adulthood now you have harder decisions like going to college or managing your money or managing insurance and very complex things. If we don't teach them from a child how to make those decisions and then they turn 18 and we're just expecting them to know it all, we're putting them in a great disadvantage.
Marsh Naidoo (13:00):
Can you give me an example of a resource that might be on your guys website?
Penny Johnson (13:05):
So the website is set up based on charting the life course Nexus, exploring decision-making support tool. This tool was developed by Missouri Eid, which is they have a whole set of resources regarding decision-making and person-centered planning and things like that. And they've given us the authority to use their tool on our website. And what it does is it literally goes, it looks at different what's called domains of life. And in those domains that it asks several questions. For example, you've got one life domain is daily life and employment. And in that domain, there's several questions. One is like, do I plan what my day looks like? Do I pay my bills on time? Am I able to manage my eligibility benefits? And there's several other questions. And then with each question, you have three possible choices of an answer. I can decide with no extra support, I need support with my decision, or I need someone to decide for me that when we're saying by I can decide with no extra support.
(14:11):
We're not saying that you don't talk to somebody, we're just saying that you don't need any kind of formal document, you don't need a representative to make that decision for you. You don't need a power of attorney to make that decision for you. You can make the decision, you may just need to do some research, talk to somebody, get a little bit of advice and make the decision, I need support with my decision without, when we're talking about you need some kind of formal, what we call a formal decision making document such as a power of attorney, a durable power of attorney, a healthcare directive, something like that where you've assigned somebody to help you make that decision legally. And then I need someone to decide for me, that one is one where we saying is I do not have the ability to make the decision now even with someone talking to me, even with other support information, that individual just does not have the capacity to make those decisions.
(15:08):
In that case, you're talking like a conservatorship, healthcare surrogate could be a representative, someone who is what we call a surrogate decision maker who can make those decisions on the behalf of that individual. And the reason that this we set our website up this way is we set it up so that there's levels of decision-making ability so that when you go onto the resources page, there's actually four levels. One including for minors and then the other three regarding these categories. Because what it does is when someone completes this tool and goes through all these different domains in life and all these different questions, and they really look at how much help they need in decision making and what areas they need that help, that helps guide them to understand what we call resources or decision making supports they would need. So when they go onto the resources page, let's say in several categories or several of the questions they have, I need support with my decision.
(16:13):
So they would click on that category, I need support with my decision, and it'll pull up little, what we call thumbnails of information on things like a power of attorney, a durable power of attorney, a rep payee, an able account, special needs trust supported decision making. It gives you just a real quick one sentence explanation of what it is. Then when you click on it, it actually then gives you a lot more information, a whole page of information related to what we call that decision-making support or a resource. Because what it does, the whole point of it is again, to help individuals learn this information and then try to figure out with all of this different information, what's really needed in their loved one's life and how do we put this plan together. So these resources are that information along with some of these tools like the life course tool, we also have a tool to help someone make actual decisions where it walks 'em through step by step, making a single decision, how to set up a decision making support plan.
(17:19):
Once they have gathered this information and they're trying to figure out, okay, I might need a rep payee for this, we might need a power of attorney for this area. And then they actually complete documents called support decision-making plan or support decision-making agreement where they get their key supporters involved and they develop a team and they work on the decision making. And these tools are on there. And those are the things that we call resources as well as we have a resource directory that list several organizations regarding that have anything to do with decision-making supports and individuals, other services for people who have disabilities.
Marsh Naidoo (18:00):
It, it's always wise to have a backup. So how is that decision made? For example, in the case of a parent's death, how does conservatorship get transferred?
Penny Johnson (18:12):
That's something we really encourage is we're talking to families at any stage when if we're talking the very transition stage of when they're turning 18 or maybe they're in their twenties or their forties and parents really hadn't thought about the future, we always try to encourage them to really think about that because we have had times where the conservator is no longer available that they got a conservatorship and they didn't plan for that. And now you've got this individual and there's no conservator in place. And that process is basically someone has got to go to court and say, Hey, this conservator is either no longer has the capacity to be a conservator, or this conservator has passed away. We need to get a new conservator. And again, that's a legal process. And then the problem becomes who is the person who's gonna file that petition? Who becomes responsible, who becomes the conservator At that point, It's a lot more difficult to get a conservatorship put in place.
(19:14):
Now it's done and the courts do it all over the state, but it's so much easier if that parent, when they're setting up a conservatorship, starts thinking about that even they could, sometimes they, they'll even set one up. It's like they're depending on the age of their child. They might have another, an aunt or an uncle, or they might have an older sibling that they would trust that would be a conservator or an alternate conservator. But at least they need to be thinking about how to plan for that should something happen to the conservator. Because it really does put the individual at risk because there's no one to make those life change, those life decisions. If there's a medical emergency, who's gonna be the person who's gonna make that me? That decision for them
Marsh Naidoo (20:03):
Information is often absorbed based when it's given out in short bursts. So if I could ask you briefly, Penny, just to give us a two or three-liner about what is an ABLE account?
Penny Johnson (20:23):
An ABLE account is a savings program. It's a federal program. Most every state has it. It enables families to put money aside for their loved one with a disability up to a hundred Interstate Tennessee up to a hundred thousand dollars over the course of their lifetime. They can have that much kept in their account and it will not affect their social security, security or other financial benefits that they receive. It allow, it allows them to keep a large sum in there that can be used for medical, financial, or housing school. Pretty much almost any kind of need that they would have. So it's a great way for parents to kind of have a savings account for their loved one with a disability and then that way that'll be available for them as they become an adult or elderly.
Marsh Naidoo (21:17):
The difference between a power of attorney and durable power of attorney
Penny Johnson (21:22):
Okay, they're both almost the same and can be used almost either way. A power of attorney and a durable power of attorney. Both can be used as a decision-maker for finances, medical decisions, or pretty much everyday decisions depending on what it is that person needs help with. First of all, in order for someone to be able to use a durable power attorney or a power attorney, they have to have what's called decision-making capacity. That means they understand that they, there's a decision to be made. They are able to see options in the decision, be able to understand those options based on the options, be able to decide which is the option they wanna take and be able to communicate to somebody. That's the decision-making capacity. To have a power attorney or durable power attorney, that individual has to be able to say, I'm trusting this person to make decisions for me on my behalf, but at any time I have the ability to take it back from them because I understand what it is to make a decision.
(22:31):
I'm just not good at making maybe some of these decisions. The main difference between the two is with a power of attorney, that power of attorney ends either when the individual cancels it or when they get to the point where they no longer have decision-making ability, like let's say they become incapacitated. That power of attorney dies a durable power of attorney. However, they again have to have the ability to go into that saying, I'm giving someone this decision-making ability, but should something happen to them that they become incapacitated and they can't make decisions for themself anymore, the durable power attorney will continue.
Marsh Naidoo (23:12):
Penny, are there any processes like that that you think you would wanna educate parents on public power of attorney able accounts? Is there anything else out there?
Penny Johnson (23:25):
There are other things that are important, like special needs trust, which are very helpful. It's another way of putting money aside for your loved one, for their needs. Special needs trust are a lot more complex. They do require having an attorney set it up and a trustee to manage it. We recommend when people are looking at financial planning, like an able account, special needs trust, long term planning for their loved one with a disability, we really recommend that someone contact an attorney who is specialized in those areas because there's different types of special needs trust and you need to know how to set one, have to be set up, like I said, by an attorney. But you need to know what's the best kind, how it works, who's gonna manage it, and how that can also relate or work with Abel County if you choose both.
(24:18):
So the really kind of complex, Another thing that's important to think about is what's called a healthcare directive or healthcare agent. And that's when you're looking at end-of-life decisions. Like someone has some kind of a situation where they become incapacitated and it's a matter of do we keep them on life support or how much do we resuscitate and things like that. They call them a living will as well. But in the state of Tennessee, we have healthcare directives and that's when that person, again has to have capacity and they discuss with whoever it is that they, they're gonna entrust to make those decisions for them. And they literally go through this directive and discuss, Do I want to be resuscitated? If something happens to me do, would I want a trachea tube? Would I want to be on life support? And then based on them completing that form with someone, again, who is trained in completing that form and getting it all signed and do and authorized, that is kind of like the plan for that person should a crisis occur when you're talking about end of life healthcare decisions.
Marsh Naidoo (25:31):
Well, Penny, I thank you for your time. I mean, you just basically put out the information that parents can then go ahead and source, but I think the number one step would be to hop onto your guys' website to check that out. Would you mind giving us the address?
Penny Johnson (25:49):
Sure. It's T N D E C I S I O N M A K I N G.org.
Marsh Naidoo (26:02):
Penny, thank you so much. Okay. You have an awesome day
Penny Johnson (26:05):
Thank you. You too. Appreciate being here.
Marsh Naidoo (26:09):
I would like to thank Penny Johnson for joining us today. And guys, when you can please check our Tennessee decision-making org. Until we see you guys the next time, remember is always get to the top of your mountain. This is Marsh Naidoo signing off.