Geralyn Arango Deeley, Ed.D. (00:00):
Hey, family member, let's talk about your path on the Parallel Path. Hello and welcome to season four of Our Parallel Paths, a future for my loved one with a disability and for me. I'm your host, Gerry, Dr. Geralyn Arango Deeley. And this podcast is about just what the title says, The Parallel Paths of Family Members And Their Loved Ones With Intellectual Disabilities. I'm a parent myself, and I always have questions.

(00:30):
Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever changing and evolving alongside our loved ones. So there's more than one path, more than one future to talk about, and that's why we're here. I hope the stories and perspectives of my podcast guests and me give you hope, information, and ideas for your path.

(00:58):
So this episode of Our Parallel Paths is dedicated to a family member I got talking to when I took Nic to a class a couple weeks ago. You know, that hour that you get to either cut out and go pick up a few things at the market if (laughs) you're a wild thing like me, or to sit and talk to the other people who are sitting and talking to the other people waiting for their loved ones to come out of the class too.

(01:22):
I find that those moments are, are often enjoyable. They're often entertaining. They're, you know, often informative. So I find that I don't always cut out to the market. And this day, I did not. We got talking, this woman and I, because this family member has a grandchild with Down syndrome who is 18. And 18, you know, seems always to be a real turning point. Beyond the adulthood that we identify in anyone who turns 18, it's an additional point where for our guys, funding for people with intellectual disabilities begins that gradual switch from school district IEP entitlements to county funding where you have to qualify. I mean, you... I'm guessing you may know what I'm talking about. If you don't, it's rough.

(02:12):
So the family member that my friend and I were talking to, she was fantastic, so dedicated, quite well informed. But again, you know, 18 makes anybody's brain throb because there's so much to think about. Plus, this grandmother was acutely aware that she's the grandmother, and she is aging, and she felt she had no one.

(02:34):
What I said to this family member, along with the mom buddy who was also in the conversation was, "Have you ever heard of a PATH?" All caps. At first, that definition of a PATH, I went with that natural inclination that focuses on the child, the young adult, the grandson in this case. But now that I think of it, this family member could use a PATH for herself first. And like the name of this podcast says, our paths are parallel. So I want to talk about that today. And first of all, when you have it in all caps, what is a PATH? So a PATH is an acronym for Planning Alternative Tomorrows with Hope. And it's one of several tools for what's called person-centered planning.

(03:23):
And listen, there are some of you may be familiar with the PATH as a tool that you used for your loved one with a disability. But I'm gonna go in a slightly different direction with it today, 'cause as I bring up the topic of person-centered planning, specifically a tool called a PATH, Planning Alternative Tomorrows with Hope, I want to, one, give you a little background as to where I first learned about person-centered planning and the PATH as a person-centered planning tool, and my experience of the PATH for person-centered planning initially for Nic.

(03:57):
And I also wanna invite you to do what I was told was a really great first step, or at least a step alongside Nic's in this person-centered planning. And that would be to start person-centered planning with yourself by taking time, even informally, to chart your own PATH. You like to put the oxygen mask on your face before you put one on theirs, to have a PATH done for you first. In our world, putting yourself first is not always easy and not always thought of as where we're supposed to start, to which I say, of course, it's where you should start. If mama ain't happy, ain't nobody happy. And you can interchange mama with other family members who are that sort of lead person, lead support person here too. Easier said than done, right, this putting yourself first.

(04:55):
Parents especially can be pretty bad at putting themselves first. But let's talk about that. So person-centered planning, let me start in a general thing. It's, it's what's defined as a process-oriented approach, empowering people to plan their life, find their voice, and work toward reaching their goals. A more generic description than some others that I found, so I wanted to use it for our episode here, 'cause since I'm thinking about family members right now, supporters right now, this definition I thought was a bit more accessible to all of us. It's from the Department of Health and Human Services in Nebraska. So thank you, Nebraska.

(05:40):
So a little bit about where it started for me. I was working at Temple University years back. And I was new, and people said, "You wanna come see a PATH?" And I said, "I don't know. Sure." Okay. So I went downstairs to a different room. And there was a woman writing on a giant piece of paper, a good friend, my friend, Trish. And she was what's called a graphic facilitator. She had this giant piece of paper on a wall with a big arrow. And it was divided into several parts. At the end of the arrow was a circle. So the arrow pointed into the circle. Kind of northeast of the circle was a star. That was the whole graphic. She was writing and writing inside the graphic. As someone spoke to, what's called the focus person, as they made decisions, as they thought through pieces of life, and with that focus person, that person for whom the PATH was being done, was a handful of others, people in that person's life who knew them and could speak to, you know, helping them with what they wanted.

(07:04):
And in the meantime, Trish is writing all this stuff down. So a PATH, and I'm gonna give you another definition, is a creative planning tool that utilizes what's called graphic facilitation, which is more pictures than work. So Trish was drawing as well as writing and, oh my gosh, listening really hard. The graphic facilitation plus the input of others who are invested in the focus person to capture and collect information in order to develop positive future plans.

(07:40):
And so you can see that that generic description certainly will include our loved ones with disabilities as potential focus people. Why not ourselves as well, since our paths really do parallel? Now, the PATH goes directly to the future and implements backward planning to create a step-by-step PATH to a desirable future. And that's from sort of the origin of this i- inclusion press. It was a tool that was developed by Jack Pierpoint, Marcia Forest, and John O'Brien that helps marginalize people to be included in society and to enable people to develop a shared vision for the future.

(08:22):
I'm gonna go backward to that term of backwards planning because a PATH starts with the star. And I'm gonna ask that we have some graphics included in the show notes and the transcript so that you can see what I'm talking about because talking about it is a little more challenging than seeing it and talking about it. Anyway, it starts out with that star that I was telling you about, the star that points up in the northeast corner of the graphic. And that really talks to something called the North Star, which is sort of the big picture of what a person hopes for.

(09:01):
And so you can set that for a certain amount of time. Like, you can... Some people will set it for five years or two years or one year, depending on where the person is at. And this is where it fits all of us. So you're putting in there the big dreams. But then we move around. Now, I had the very great benefit of doing this several times for Nic when he was young, really young, a giant graphic on our wall and a bunch of friends around us. One, two, three, four, five. We even had it done, I'm thinking about how many times, um, as Nic is 26. We even had, uh, a PATH done at Nic's middle school as he was getting ready to transfer over to the high school just to give people an idea of what's going on and what we hoped for in that new experience.

(09:58):
The last PATH we did was right before the pandemic. And even then, that planning, even though everything kinda fell apart in life, the planning actually held pretty true, and we did get things done because we committed to them, and we could look at them because it was literally taped to the wall. Anyway, at that meeting, people said to me, "You know, look at everything involving you and Nic. You should have a PATH too." And I kinda laughed, and I thought, "I should have a PATH too."

(10:29):
And so I offered that as a suggestion to all of us because there's so much of us in our loved one's paths. I even use it in my classes 'cause I found that it was a great way to get everybody going on what they hope to achieve in our class and commit to in our class to get that A they all wanted. And we also took our PATHs. My friend Diane, my friend Mary and I, we took them to conferences just to demonstrate how important and helpful a PATH can be. But let's get back to us because, yeah, people can benefit from support and planning, including us.

(11:09):
So what do you need? What's the recipe for a PATH? I would say you need the tools, a piece of paper. Now, I offer that a PATH as a group tool, great big piece of paper is awesome. But maybe, it's you and a couple of friends sitting down with a glass of wine kinda talking about it because key to this is someone to sort of graphically facilitate or scribe or write things down or capture what everyone's talking about. But you need a couple people with you. You need a big piece of paper and the big piece of paper is so that you can say, "Look at what we've got, and look at what kind of... what the pieces are and what I need to achieve what I'm hoping for." There are no wrong answers in a PATH. There are no goofy ideas because someone else is also gonna be facilitating the PATH, even a small PATH for yourself or a big one for yourself.

(12:11):
Let's talk about someone who can just really walk you through the PATH. We start with the North Star, which is where we're looking at, at the future. And then we go into the circle, and that's the positive and possible next step. So we kind of take that big dream and bring it down a little more. Say, I said five years for the big dream, what I wanna achieve in five years. In the circle, I put in there maybe what I hope to be able to do in one year or two. So that's a little timeframe that narrows it down.

(12:50):
Then, we're gonna go all the way to the left of the graphic, and we're gonna enter into a section that's called Now, because now really is today. I'm writing... I'm telling you this in August, end of August. And so we'd be saying, "What's going on in August? And what does life look like?" And anything that the focus person, you, wants to put in there is just fine. And as well, you're listening. And the facilitators, the person writing as well as the person facilitating the process, are also listening to the wisdom of the people you've selected to sit with you. So it's a conversation, and we're committing it to paper. I think that the power is the paper, or I guess if you like to capture it on a graphic on your laptop, that's fine too. But capturing it is essential.

(13:48):
The next steps are who to enroll. So another section of the arrow beside the now is who to enroll. In other words, who do I need as I look back at that five-year plan or maybe bringing it down to the two year, who do I need to be able to move forward toward what I hope for. And you literally list it. The next section, how to stay strong or how to build strength. What do I need to do? And, you know, I'm gonna say, "Make sure you have your breakfast each [inaudible 00:14:23]." But what else? Do... Are there, are there things you need to do? Are there, you know... Maybe, I need to take a course. Maybe I need to, to, yeah, whatever you think of that can help you to stay strong and to build strength. What to get done is the next step. And we start the next two steps really by kind of again, backward planning.

(14:48):
So it's like, well, and again, I hope that the graphic we include in here will help you to see what I'm talking about 'cause seeing is believing. Um, as we look at that arrow where it sort of says the circle telling us what we hope to achieve in a, let's say, two years out of that five, what do I hope to achieve in that two years? What do I hope to do by, hmm, say, six months? And you as the focus person and your crew can decide on those timeframes? That's up to you. But what can you achieve in six months?

(15:27):
And if so, we move to the next section. What do I need to get done by three months in order to work toward my goal? The final section, the arrowy part of the arrow, that big triangle, really is what I need to do now? And what we're talking about there is the first step. They say that you can... We, we love to admire problems. I love to admire the problem. I love to think about things. But getting to, to the what am I gonna do part is always a little harder. The PATH keeps me honest. It says, "What are you gonna do in the next week?" (laughs) What are you gonna do? What's the first thing you're gonna do toward a goal? It might be making a phone call or, you know, sending an email to make a contact or just anything that's... oh, go get my car repaired. I don't know. I'm thinking about my car right now. Whatever it is that you need to do like in a week because moving quickly gets you moving.

(16:28):
You can even say, "All right. Who's gonna call me to check in on me?" And list that person there to. A PATH is all about listing it out and getting people to commit. As a matter of fact, one of the things I love to do is to have everybody sign the PATH and say, "Yeah. You know, I was here." Sign it, date it, and hand it off to the person for whom it is crafted. I hope that you'll think about this on a larger scale or a smaller scale. If you have had a PATH done for your loved one, consider how great it would be to have one for you, because you've got to be strong too.

(17:12):
Our paths truly do parallel. And I hope that you'll give it a try. And you know what else? Give it a try once in a while. You know, if you set yourself a one-year PATH, do another one next year. If you set yourself a five-year PATH, check in on it, and see if you need to make changes. The first time that we did a PATH, we had it on the wall, I remember. And we had it where you could... you couldn't miss it. And we could look and, and celebrate what we had gotten done with Nic for Nic and go, "Oh, you know what? We need to work on this that was on the paper," or sometimes what we needed to work on. That didn't actually make sense in the grand scheme, but the commitment is a great first step. And I think you ought to give it a try for yourself as well, 'cause if mama, insert concerned person here, ain't happy, ain't nobody happy. So take care of you.

(18:12):
And thank you for spending time with me today on this episode of Our Parallel Paths. I hope that you'll like and follow our podcast, that you'll share it with family and friends. And I really hope that you'll return to listen and learn from more stories of people like you and me and our loved one with a disability on Our Parallel Paths. I hope that this helps you to realize that you're not alone on this journey. I would love to hear from you. Um, so feel free to comment, to rate the podcast, to join our Facebook group. Thank you, and I'll see you next time.