Season 3, Episode 1, Part 1: Sandra McElwee, "Chief Dream Facilitator"

Sandra McElwee, mother of "Born This Way" star Sean McElwee, author of three books, and independent facilitator with Empower Person Centered Pans, discusses what she does as a facilitator and gives some great out of the box examples of young adults with intellectual disabilities working towards independence. Her son Sean has Down syndrome and has hearing loss in one ear. 

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Transcript

Greta Harrison: 0:00

Hello, my name is Greta Harrison. Welcome to Born Fabulous Podcast, season three, episode one. The theme of this season is "young adults with intellectual disabilities living full lives of independence and interdependence". You will hear interviews with parents support staff and of course the young adults with intellectual disabilities. Please note that these interviews were done one to two years ago. achieving independence is a complex journey for many individuals and families. There were many stops and starts with various entities when putting together season three. Regardless, this content is very relevant, and we hope you will find it helpful. This episode is the first of two episodes with Sandra McElwee. Sandra is the author of three books a respected inclusion advocate and is best known as Sean's mother. Sean was one of the stars of A & E's Emmy winning show Born This Way. Sean has Down syndrome. Sandra is an independent facilitator with Empower Person Centered plans. Now please enjoy this short clip of Love Is a Potion. The lyrics are by Melissa Riggio, a young lady who had Down syndrome and was the focus of episodes one through four in season one, the music and voice are by Rachel Fuller.

Rachel Fuller: 1:22

"Love Is a Potion" by Melissa Riggio and Rachel Fuller.

Greta Harrison: 2:04

we are very fortunate to have the one and only Sandra McElwee here with us to talk about independence, which is a topic she knows very much about not just because of Sean but because of what she does for a living now, and so many other things. So I want to welcome Sandra McElwee, Sandra. Hello.

Sandra McElwee: 2:28

Hello, how are you doing today?

Greta Harrison: 2:30

I'm great. Thank you so much for taking time out of your extremely busy schedule to be with us. I really, really appreciate that. Now, Sandra, you we last spoke pre pandemic. At least for the podcast. Now we're we're friends. Besides that, but for the podcast, we last spoke pre pandemic 2020. A lot has changed since then. You have a new job. So let's start out with you telling us about your new job because I think it's so exciting.

Sandra McElwee: 3:08

So So California has finally brought the Medicaid waiver for services for adults and children with disability to the state. And other states that make be called the waiver, self directed services. But in California, it's being called self determination. And there was a three year phase in where lottery participants were selected. And as of July 2021, the program opened to all of the consumers in the California Department of Developmental Disabilities. And so my job is to create the initial Person Centered plan for people entering self determination help identify any unmet needs and services that they're not receiving, and help them transition into the program.

Greta Harrison: 4:03

And about how many people do you help right now? How many is on your caseload? Well,

Sandra McElwee: 4:10

I had 24 clients in the lottery. And I've got about 70 that are on my caseload. You know, but I haven't even started about 15 of them. So I have about totally about 64 who are in the program. And then the others are different, different stages of entering the program, and caseload and well I don't I help them get in and then just help them with tweaks throughout. Throughout the title. The name of my company is empower Person Centered plans. And the reason it's titled Empower is because I empower my clients families to support though. So there is, you know, people can pay someone like me to support them in the program. But the reality is their budgets aren't that big. And I would rather have my consumers use the budgets for, for their services for things they want other than paying me when their mom or their dad or their brother or their sister can administrate the program just fine. And so I basically teach them how to how to support their loved one. So they don't have to use their money for that. So they can have a personal trainer instead, or guitar lessons or whatever their interest is.

Greta Harrison: 5:40

Sandra, what you're talking about. Sounds so, so exciting. I have a few questions. If you don't mind. What is the exact name of your position?

Sandra McElwee: 5:49

I'm an independent facilitator.

Greta Harrison: 5:51

How many independent facilitators do you think California has? Between

Sandra McElwee: 5:55

Two to three hundred that I know of?

Greta Harrison: 5:58

Wow. Okay. All right. And so I know that you've done some exciting things, with your job, having nothing to do with Shawn. Now, some of this is experience, obviously, that you've gained from your journey with Shawn, but maybe you could give us an example of one or two of the exciting things that have taken place without using real names, of course, obviously, obviously.

Sandra McElwee: 6:25

So well, I have one client who, at 27 years old, had never done a chore in her life, her parents had just given her a weekly allowance. And whenever she wanted something, you know, they would either say yes or no and buy it for her. And she had been offered a job and she was like, why would I want a job? Because she so so I am, you know, we when I did her interview, creating her person centered plan. I mean, the reality is, her parents are aging, her parents wanted to travel. And they, you know, wanted her to be more independent, even though she had no desire to be more independent, because she never needed to. So we we did, I call it a person centered party, where it because nobody wants one more meeting, where we gathered her support team people who knew her and loved her and and cared about her together and we came up with some with a plan. And we motivated her so you know, the motivation was if you can do anything you want to and buy anything you want to then would you want want to earn some money. And she we can made up made a list of what she wanted to buy. Now at the time, she had 58 builder bears and, and she wanted her 59th Build a Bear. She wanted to swim with dolphins. And she wanted to go on a trip with friends. And she had you know many things that she wanted to do. And and so her mom created a chore chart. And she started earning money doing chores around the house. And then she was allowed to do whatever she wanted with that money. She didn't have to ask permission from anybody. So that was very empowering to her. And about two weeks and her mom texted me and said, Well, I know she's motivated. She fed the dog three times today so she could get paid extra. And then, you know, she has vision issues and she was having a hard time maneuvering the vacuum with a cord and she kept tripping over the cord. So she used her money and bought herself a cordless vacuum. She we did not staff was part of her plan. And we were able to provide her with 24/7 staff. And her mother would send me pictures of her and her husband in the woods drinking wine on impromptu camping trips, because there was already staff there for their daughter. So they were just able to leave. And, and she her her and her staff were doing crafts and things she really likes to do crafts and her staff person realized she's really good at doing tie dye. And they just she started a tie dye business. I mean, who knew that wasn't even in the plan, but she is so driven to make money now it's you know, it's really exciting. And she's been in the program a little over a year right now.

Greta Harrison: 9:35

Yeah, you started doing this during the pandemic, right? Yeah,

Sandra McElwee: 9:39

well, I started doing it right before the pandemic, my first two clients, I actually was at their houses, you know, talking to them and things, then everything went virtual. And the benefit of that is I've been able to help people all over the state of California instead of just in about a 50 mile radius of my home.

Greta Harrison: 9:59

Well, that is true. Oh, that's so you've, you've turned this into a positive? Yes. And you just gave an example of somebody who wasn't really motivated to do anything. And she was already in the latter half of her 20s. And now she has a business. And she's very motivated now did she does she want to become independent. So,

Sandra McElwee: 10:23

you know, the plan is for her to continue to live in the family home. Because the area she's in isn't, doesn't have a lot of safe options for apartments and things like that. And then one day, when her parents are there, she will continue to live in the home with the supports that she has currently, and will continue to have. She's, she's basically independent on doing the chores, you know, with supports. And one of the other things we did, because of her, she has vision issues, and the stove isn't really a safe option for her. So when we were doing her person centered party, we had each person tell her the their go to quick recipe that can be used in a microwave or even cold. And, and, you know, she said yes, that sound like something she would like to learn to cook or no. And everybody sent the recipe to her mom or my mom made her a, you know, enlarge the font, so she could read it. And she has a magnifier too, that she was able to buy through this program, which was, you know, life changing for her. And she's so she's got a cookbook of, of quack. Semi healthy, some of them are healthy, but some of them are meals that she can cook without even getting near the stove. Wow,

Greta Harrison: 11:45

that's out of the box thinking right? And that's, that's what it's all about.

Sandra McElwee: 11:50

It is it's it's so fun, being creative, and coming up with the solutions that you know, people really don't know, you know.

Greta Harrison: 12:01

So you, you've taken your experience of your journey with Shawn, where you were his chief dream facilitator, now you're helping other families.

Sandra McElwee: 12:10

And that's my title is Chief dream facilitator. That's my title with my company.

Greta Harrison: 12:16

And you call these Person Centered parties?

Sandra McElwee: 12:19

Well, so you know, there's a lot of information gathering. First I interview my clients, like they're rock stars, and I'm a Rolling Stone magazine reporter. And I mean, it's like several pages of questions. You know, you can't just ask somebody, I mean, you can't ask the typical person, but you certainly can't ask a person with a disability. You know, what, what's your what do you want in life? I mean, what do you want for a job? What do you want? You know, what do you want to do? Instead, you ask, What's your favorite things to do? Where's your favorite places to go? You know, if you could do anything you wanted to? What would you want to do? So I asked the same questions in multiple different ways. Because sometimes the first two ways I ask it, I don't really get an answer. But the third way I ask it, then it resonates with them. I experienced this when Shawn had his person centered party, where, you know, he his agency kept getting him jobs, doing carts in the parking lot. And Mr. Social did not want to be in anybody's parking lot. He wanted to be in the store talking with customers. And, you know, we went around the room and asked everybody, what do you see Shawn? Light up, you know, what situations the Shawn light up in. And somebody said, Whenever he sees a little kid, he wants to give him a high five and ask their age and talk to them. And somebody else said, Whenever he sees dogs, he wants to, you know, ask what the dog's name is, and pet the dog. And, and so the person facilitating that said, Shawn, would you like to work with children and dogs? And he was like, Yes. And that was that was, you know, a discovery of his interest without him saying what his interest was because he really couldn't verbalize it. You know, he didn't have a vision of what kind of jobs he could do with kids and dogs. I mean, he would say he wanted to be a teacher. But I mean, okay, like, he's gonna go get a credential. But, and he was done with school. So he didn't want to do that. But he was basically saying he wanted to work with kids by saying, I want to be a teacher, he instead, you know, he did, but he didn't have any concept of what other jobs were out there. So then we go around the room and it's like, okay, where are kids? That you don't have to have a teaching credential to work with birthday party places, trampoline parks, miniature golf. I mean, everybody was in you know, the everybody was petting zoos. You know, everybody was coming up. with what you know, they were aware of in their realm. And and then we made a list. Same thing, doggy daycares, you know, dog walker, and we made a list and then we sent his job coach out and said find something. At one of these places, he ended up with a job at a trampoline park, refereeing kids playing dodgeball, loved, loved, loved that job. Pandemic killed the job. But

Greta Harrison: 15:32

it's Sean working with pets now. No,

Sandra McElwee: 15:35

he actually got a job at a doggy daycare right before COVID struck. And then everybody was home with their dogs so they weren't taking them to doggy daycare. He's currently working at a golf course. And he's loving it because he plays golf and and it's very social job. Okay.

Greta Harrison: 15:52

Okay. Yeah, I know, some doggy daycares have been affected. Yeah. So thinking back, and we've had in depth conversations about Sean's journey. So for anybody who may not have heard season one or two born fabulous podcast. In Season One, I spoke with Sandra in depth over four episodes about Sean's journey. So I highly recommend you listen to that. But I want to hone in now on what helped prep him for independence, thinking about little things like when he was in middle or high school, it can be big or small. And I'll give you an example. I remember back in middle school, we were attending, I'm determined at George Mason University, something she attended many summers in middle and high school. And one of the things they talked about was Does your child wake themselves up in the morning? And I remember thinking, well, she doesn't she should. And we went home. And right then and there. She started waking herself up in the morning, which is, you know, a very important skill and independence. So that's just a tiny little example. So what examples can you think of was Sean?

Sandra McElwee: 17:07

Well, when Sean was 11, the TV show The Real Housewives of Orange County debuted. And I was watching the show and seeing these teenagers and I mean, like 17 1819 year olds, sitting there bossing their mom make me a sandwich. Mom, there's crumbs on the counter, you need to clean the counter. And I was like, whoa, wait. When I was that age, I was mowing the lawn. Dig in the weeds cleaning the windows vacuuming. I mean, I was doing all kinds of chores. And I thought, oh, Sean isn't doing any of that. And he was 11. And, and I went, Oh, he is not going to turn out like those breaths. So I made a chore list. And I started paying him for the chores, to motivate him to do them. And it took me six months to teach him to do laundry independently. But at the end of six months, he was able to do it all by himself. He didn't wash his cell phone once, but I made him buy his next cell phone with his the money he was earning. So he never did it again. He he would save money for big things. He saved six months for an Xbox. And I mean, you know, so so that was a lot of it. And you know, and his chores were paid according to how difficult they were or how desirable they were like washing load unloading the dishwasher was like 50 cents, but scooping the dog poop was $5 I can tell you he never earned that $5

Greta Harrison: 18:50

Okay, now I net will be talking to Sean separately. So I want everybody to know that because Sean is independent and does not live with Sandra now.

Sandra McElwee: 19:00

But he has his own dog and he is scooping a dog poop now that's

Greta Harrison: 19:04

exactly what I were. That's where I was going. That's exactly where I was going. So he has gotten over that. He has gotten over to you. Okay. Okay, so he he's definitely gotten over that. So chores were a big thing and chores is, you know, that's a great point. I remember doing that with both my daughters, whether they had a disability or not making sure they could do laundry was one of the first ones. So that's very, very important. So that's a great example. Is there anything else you can think of? Just even did you speak? Well, I know Shawn has always been ambitious. He always wanted to be on the stage. So did that have any part of this to

Sandra McElwee: 19:43

know? I mean, we he would always want to be like I want to stay up till midnight. And now I mean, it would have been no big deal for us to let him stay up till midnight. But instead I said, Well, one day when you have your own place, you can stay up till midnight but in my house you have to go to bed at nine or whatever the time of the year was at that time. And, and so whenever he would ask for something that was really independent, I would say when they when you move out, you can do that, but not now. Because, you know, honestly, our kids don't think about moving out, especially when they have it cush. I mean, how many 30 year olds are living in their parents basements now that don't even have a disability?

Greta Harrison: 20:26

That's true. That's true. What is great, that's a small point. But a small tip, that's very helpful. Whenever your child wants to do something that should really be done when they're independent. You set as a goal for independence. Yeah,

Sandra McElwee: 20:40

so he wanted to move out. And he'd say, Well, I'm gonna move out, I'm gonna get house at the beach, you know, he has big dreams. But, but when the time came, when his section eight voucher came, he was terrified. And, you know, the biggest blessing was that we were filming Born This Way, and they were able to rent a house for him and Steven to try it. And Shawn was able to have the staff that were going to support him when he did move out and experience it. And see it because he was afraid. Who are these people? You know, what, what do they want with me? Am I gonna like him? And so he was able, you know, see that having the support was not going to be a bad thing. after all. I

Greta Harrison: 21:29

remember that episode. So clearly. And I have used that episode as an example, speaking with many people, I think, and having an older daughter who's gone through, you know what it's like having roommates. Sometimes they work out sometimes they don't. The show was such a great example, that episode, and I don't remember what season it was. You probably don't either think. Season two. But that episode was such a great example of an easy thing to do. You know, potential roommate, go go rent a place for a month, maybe two months, see how you mash? Because it's a lot easier to get out of that than it is Elise or other things afterwards. That was a great example. And they were able to realize that, that Well, I don't want to spoil anybody who hasn't seen it. Well, I It's old. It's been out there. I spoil it. It's been out there for years. But But Shawn and Steven realize they probably shouldn't be roommates, but they're still good friends. You know? And then they were able to get out of that being good friends. Exactly. I love that. Yeah, that. That's a great example to bring up. See, that's what I love about chatting with you. You have all this life experience. It just comes out. So describe la Sean's living situation. Now he's going to show he's going to tell me firsthand, but maybe you can give it to me from a parental perspective. And how did all of you cope when the pandemic started?

Sandra McElwee: 22:57

off strong currently is renting a condominium. He was in apartments before. And apartments are okay. But there was a lot of transient people in and out. He never built any relationships with his neighbors. I mean, he had like, six different next door neighbor's in one apartment. So you know, and people walk by each other, they don't even talk. So I really felt like if he was in a place where people own their homes, that he would have more of more of a welcoming neighborhood and it where he lives his great. His neighbors know him. They say hi. They kind of pull me aside if I need to know anything. So I have that extra set of eyes. There's another guy who lives there named Sean who every time Sean shows up at the pool. It's like normal cheers, you know, Sean. So it's really everything I had hoped it would be for him to rent a place where other people owned their places. And and it's nice. It's a very nice place. And what was the second part of the question? Oh, how did we deal with the pandemic? Yes. So with a year ago, when COVID was really spiking, and everybody was getting together for Christmas, even though they shouldn't have been and he his he had a supportive living agency, and he had a job coaching agency. And both of them had people calling out sick. So they he was getting substitute staff. And he was being exposed to way too many people because the continual staff was were out. And so I said, Okay, timeout, everybody. We're bringing him home. We'll see you in January. So we brought him home before Christmas. And he didn't go back to his place until I knew everybody was well because It was, it was too scary. There was just too many people and you know, you can have COVID not know it yet and be contagious. So I just didn't think he needed to be exposed to that many people, he did not like that. He was very mad at me. And we would go over to his place. And, you know, I'd hang out and he played video games, but but we didn't have the staff coming in. That's

Greta Harrison: 25:21

a that's an excellent point on two areas. First of all, I'm glad you mentioned the condo versus an apartment, because you have stability of of neighbors there, which is a great point because we everybody wants their child disability or not to live in a community. And that's a real community, and

Sandra McElwee: 25:42

then walk to a few restaurants. And it's nice, it's very nice.

Greta Harrison: 25:48

Is it on a bus route? Yeah, but

Sandra McElwee: 25:51

he doesn't take the bus anywhere. He's got staff 24/7. So his staff are his chauffeurs.

Greta Harrison: 25:57

Okay. Okay. So but but he is on a bus route if he had to be. And so that means he's the fact that he's even on a bus route shows that he's in a location that's kind of central or,

Sandra McElwee: 26:10

yeah. The beauty of the new program in California is he could take Uber and Lyft and get that paid for with his services.

Greta Harrison: 26:19

Everybody can, it's self directed, and self directed self direction. Okay, so I love the apartment idea. But also, I noticed, you know, I follow several self advocates, and who are very successful, and almost all of them to a tee had to go back home during the pandemic, for one reason or another. And sometimes that look different, like you said, you know, he came back, not really wanting to and you still took him back to his apartment, so his condo so that he could feel like he was still a little independent. For other. For other people, it looked a little different. They had to leave and go to another state to be with their parents. But with without fail, it looks a little different. And it just shows that we we can plan and plan and plan and plan but you know, God always has other other ideas. Yeah, that's

Sandra McElwee: 27:19

yeah, go ahead and plan God. Gotta laugh. That's exactly right. That the nice thing now so before Sean, services were in traditional services, and he had to use agencies now, because he's in self determination. We've hired his staff. So his, his, he has four people. And that's it. He doesn't have substitutes. If somebody's sick, somebody else will fill in or it's me. And that so he's only exposed to four people every week. And they're all being very careful. They're all vaccinated and boosted and it's, you know, and and he has a relationship with all of them, and they know his tricks. So he's not getting away with anything. Where whenever he would get a whole new staff, he'd go, let's go get a soda. Or take me shopping.

Greta Harrison: 28:28

Or let me have 20 Burritos like he did was Shawn Right. That's funny. And you did mention everybody's faxed and boosted and I know you and Shawn are vaccine boosted? Trying to be as safe as you possibly can?

Sandra McElwee: 28:44

Absolutely.

Greta Harrison: 28:45

And okay. Thank you for listening to the first episode of Born Fabulous Podcast third season. I hope you enjoyed it and want to hear more. A short video clip from this episode is available on our YouTube channel and unborn fabulous podcast.com. In Episode Two, Sandra will discuss the rewards and pitfalls of independence, share more stories and give some encouraging advice. She has a wealth of knowledge. Please follow and like us on Facebook, Instagram and Twitter. If you enjoyed this episode, I'd be honored if you would leave a review wherever you heard this podcast. Now please enjoy this clip of love as a potion. The lyrics are by Melissa Riggio, who had Down syndrome, and the music and voice are by Rachel Fuller.