ETB 48: Empowering Families through Personal Support Networks with Jennifer Vincent

ETB 48: Have you heard about the positive impact of creating a personal network to support you as you care for your loved one with a disability?  Our guest, Jennifer Vincent, brings her experience as a parent and network facilitator to help answer this crucial question. Jennifer shares the importance of personal networks in empowering families and individuals with disabilities. She introduces us to the book, A Good Life for You and Your Relative with a Disability by Al Etmanski, a practical guide to establishing such networks that promote strategic planning, decision-making, and provide vital sustainability resources.

Navigating the journey with Jennifer, you'll learn firsthand the intricate process of inviting members, defining roles, and fostering qualities essential for a thriving network. The lively discussions are peppered with enlightening insights on the significance of guest speakers, educational components, and the creation of a care notebook. She underlines the importance of the individual's comfort and active participation as the team members work together to provide support.

We also get an intimate look into Jennifer's personal journey of crafting a support network for her daughter, Alexandra.  The conversation touches on the role of a facilitator, and the importance of varying support types. Jennifer shares creative solutions to building a support network, like including family members, thinking out of the box to include other members and using Zoom for out-of-state connections.  This conversation is a goldmine for anyone looking to learn more about support networks for the special needs community, so tune in and join the discussion.

Jennifer is a licensed Vocational Nurse, president of GHFEDS: Galveston-Houston Families Exploring Down Syndrome, State Medicaid Managed Care Advisory Council Member,  Partner in Policy Making 2018 graduate and a Texas Networks Connection Personal Network Facilitator.

Connect with Jennifer
Email address: Jennifervincent71@com

Texas Parent 2 Parent Website:
https://www.txp2p.org/

Texas Parent 2 Parent Care Notebook:
https://www.txp2p.org/services/family-to-family-health-info/care-notebook

Texas Network Connections:
https://www.txp2p.org/services/texas-network-connections

A Good Life for You and Your Relative with a Disability:
https://www.amazon.com/Good-Life-Your-Relative-Disability/dp/B000W5TBH6

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Transcript

Sandy Deppisch: 0:05

Hey there, I'm Sandy Deppish and this is the Embrace the Blessing podcast. Each week, I talk with a parent who has a child with a disability. They share their biggest challenge, their greatest joy and their hopes and dreams for the future. You'll learn about resources available to you and discover helpful hints and tips. If you want to be inspired and encouraged, stick around. Let's walk the road less traveled together. Well, jennifer, thank you so much for being here. You know I was thinking about it as I was logging on this morning. You were my very first guest on the podcast way back here half ago. You were Embrace the Blessing number two, so if anybody would like to hear Jennifer's first episode, feel free to go back and find that. I'm excited to share with us then about your amazing daughter, alexandra and about your incredible family, but now you have something exciting to share with us that I think a lot of people are going to want to hear about. Tell us a little bit about what it is you're here to talk about today.

Jennifer Vincent: 1:13

So I'm here to talk about personal networks for your loved one with a disability, and with saying that, I have to let you guys know that this format is through the parent to parent, Texas parent to parent organization out of Austin, that covers state of Texas and they have a specific program called Texas Network Connections that specialize in personal networks and I have been trained and I am now a personal network facilitator in that program and so the program typically is a $750 charge, flat fee, for a facilitator to facilitate these meetings. But they currently have a grant, which is wonderful. That's going to be ending soon, but and hopefully they'll get another grant, but just so people know, if they want to take the opportunity to utilize that grant, now would be the time to go to Texas parent, parent to parentorg and and check it out and under Texas Network Connections. So have to give them the plug, because that's why I'm here doing this. So actually I have learned about personal networks several years ago at a conference it was actually a DB mat deafblind, multiple disabilities conference and I thought you know, I need to do this for my kid. But just like all of us, right, we have all these goals and things that we want to do and and are we're just busy, right, and it's hard to catch up, and so I would say it's a wonderful thing to do at any age.

Jennifer Vincent: 2:49

But for me, when I found out that Texas, parent to parent was doing facilitator training, I was like, okay, this is my opportunity. So I contacted them and and got trained to be a facilitator. And then I was like, okay, well, now my facilitator. Well, I could be a better facilitator if I was having one for my, my own daughter, right, so I did one for her.

Jennifer Vincent: 3:13

So, but let me just and I kind of talk all over the place, so I apologize, but I'm just going to read the definition of a personal network real quick. I have a, so I'm going to read it off my paper here the personal network is an intentional community of friends and family members who voluntarily commit to support a person or family who is at risk of being isolated and vulnerable by reason of chronic illness or disability. So, even though I had said disability previously, you know there's individuals that are medically complex or, you know, have a chronic illness and they still need support because they're at risk for being isolated as well. So it's not necessarily somebody with a physical disability or an intellectual disability. It covers all spans of life. Personal networks promote planning and opportunities for support. They assist with decision making and goal setting and work with the person at center and the family to be a sustainable resource.

Sandy Deppisch: 4:15

Amazing. You know what I hear when you read that, like I just feel this huge sense of relief, like you can take a deep breath. I mean, josiah is 21 and hearing about this now is is a perfect time, but I can imagine if we had heard about this 10 years ago, like what a difference that would have made, because you I mean you're the queen of this, of researching and constantly being the one person who is always trying to figure everything out for your child. What's the next step? What do we do about this? How do we fix this? And it's all consuming. And what I'm hearing you say is that doesn't have to be the case. Now we can have a team, like we can be a team and they can go. I got this, I got this. Oh my gosh, so amazing.

Jennifer Vincent: 4:58

Love it it is. And the concept, and I will say this, this was actually developed out of Vancouver. Okay, because there was a group, and you know, over there and can they have incredible resources right in that country where we we don't, especially in Texas, right, we don't have the best disability resources, so we're already at risk there. And even with all those resources, there was a group of parents that got together and said you know what? We still need help and support and a system for our children. And so they're the ones who developed it and it's the.

Jennifer Vincent: 5:34

There's a book called Plan and you can buy it off, even off Amazon, and it talks about a good life. So that's the whole purpose of a personal network is to develop a good life for our children because they deserve it right, and we're not going to live forever and it's a big burden on us as parents or caregivers to be solely responsible for another human beings life. If you think about it, you know on top of our own and you know work, all of that, and to have a support system is it, is, it is a huge relief. So I thought I'd talk a bit, a little bit about who network members are. So you know, network network members are a group of people of all ages with a variety of interests, abilities, areas of expertise, talents and connections. Each person who participates is valued for his or her unique contribution. And again, I'm kind of reading off a paper because I just wanted to be very clear. I'm very passionate about it and I could talk all day, but I wanted to give clear information.

Jennifer Vincent: 6:41

So, I don't talk in circles so much, but some of the ways network members contribute are, you know, the number one way is to care about the person at the center, and when I say person at the center I mean, like your son Josiah, my daughter Alexandra, they are. When I use person at the center, they are the person that we're talking about and the family. So you know, and one of the things that network members would do in a personal network, they'll build relationships with each other. So you know. So you have a support system, like we all. We develop support systems naturally in our lives. As an individual that's able to get out and drive and socialize and work, and and our loved ones with a disability, they really depend on us to help them, you know, access the world and they don't have that opportunity to develop those relationships as naturally as we do.

Sandy Deppisch: 7:35

So and then the communication barrier. You know you have an ability to speak or to communicate clearly. That's a huge barrier to creating social relationships.

Jennifer Vincent: 7:46

Exactly so. And and you know, the thing about a personal network is the people that you. The step one is to invite people. You kind of you know, you invite people to your network. You have an invitation, meeting at your home, you have a little bit of food or snacks, people socialize, and then so this is step one you kind of go through a list. It could be your neighbor, it could be not you know, it could be a therapist, it could be somebody from the school, it could be your family.

Jennifer Vincent: 8:14

I mean, you've got to have to think out of the box too, because for our kids, right, but then that network they come together and they get to know each other. Because if you think about it too, like if your child, they know you and they know this person and that person separately, but none of them know each other. So how do they know to really support the child if they don't know each other? So your network needs to bond and get to know each other too. So you invite them and then you talk about what a personal network is and and then you ask them to commit about two hours three to four times per year, and that's really not a lot.

Jennifer Vincent: 8:51

That's it to come to your house and have a meeting and more often at the need arises. So that's what you're asking them to commit. And then when they serve on a network, there's different roles, like I'm currently. Like I'm a facilitator. So when I start a network, I go in, I do a work plan with the family, talk about resources, talk about goals for the child. Some of the goals, like from my daughter, one of the goals is to develop a care plan and for people in her network to learn how she communicates, because what I say for her is she has limited verbal skills but then she has poor articulation too. So, but sometimes, as you know, is any behaviorist communication and you don't know what they're expressing, what they're communicating based on a behavior. You can't help them in that and your network needs to know that. So that could be one of your network goals is learning how your child communicates, and so there's always an educational piece in the meeting. So each meeting, after you do your invitation meeting and people commit to join and then you schedule another meeting a month, two months out and then their first meeting. One fun thing is you name your network. So that way you know, it's just fun and you, you know, and so and everybody is a part of it. So you name your network and then people take on roles. Like, as I said, I'm facilitator but then I step back. So as a facilitator, I do help you with your work plan, I do your invitation meeting and then I attend the first two meetings and I send out emails and reminders. But at your first meeting you kind of talk about the different roles and you really don't want the parent to be the facilitator again because the support system needs to give the parent a break. Right, that's like okay, one more thing I have to do. So somebody in your network could take over as facilitator and a facilitator their job would be, and, or even a co-facilitator you could have people share it, alternate. But they make sure the meeting starts and finishes on time, they make sure everybody's voice is heard, they leave the meeting and then you can have a scribe which is basically a note taker and you don't have to do that, but it's helpful to have that information throughout what you discussed. And then they help prepare and distribute meeting reports to network members.

Jennifer Vincent: 11:21

You have a meeting organizer which they schedule the next network meeting for you. They send out the email, reminders or a text or whatever communications tool you use. You have a communication leader and that person is the person that sets up and administers communication tools In some ways. Some people have used as Google Docs, groupme, et cetera. There's so many tools out there that use as a group and then the communication leader helps network members access those communication tools, cause, you know, some of us are a little bit more tech savvy, especially the younger generation. So I, like like Alexandra's network, I had a younger person in their 20s. She's in charge of our communication tools, you know, and that's great, yes, and but some of the qualities and strengths needed in a network collectively include, of course, compassion and commitment, because we want people to commit to join. So if they say, yes, I want to join when you have a meeting, then you schedule the next meeting and, yes, things happen. You may need to reschedule, but somebody needs to go. This is on my calendar and this is important.

Jennifer Vincent: 12:32

And not be. Oh well, I'm gonna, you know I don't have to be there, no, it is important and they need to commit to, to those two hours, you know, every month. And so, and we and it is recommended that you really meet every three months the first couple of years and then after that you could alternate, cause it's a evolving process. Right, cause it's a learning process. Your great bros and then they can, but they need to, you know, have common interests.

Jennifer Vincent: 13:00

Another quality for your is understanding and awareness of person. That centers, strengths, interests and abilities, knowledge of or willingness to learn. Cause it's a learning part. Right To learn about disabilities, disability issues, social service systems, community resources, recreational opportunities, cause one of the things is, as you know, as a parent I feel like I'm the keeper of all my daughter's information. So if something happens, what's happening to me today, is there anybody else, including my husband, that knows? You know I don't. He doesn't know how to access her, my chart for her medical work, what doctor she goes to when they need to be scheduled, where you pick up medications. If you have supplies DME supplies where do they come from? Do are you the only one that knows about the waiver services and how to access them. If you have guardianship or supported decision making, so it's a lot for one person to hold on to. So as an as your network, it's helpful to share that information.

Jennifer Vincent: 14:09

And then the network members. So it could be that you invite another special needs parent to be a part of your network too and that might, down the road, be like, okay, I'll, I know about, let's say, the class waiver, so they might be the specialists on the class waiver for your child, if that's what you have, you know. So each person kind of, as time evolves and they learn more about your child's interests and their needs and their supports, then they can take on, take some off of us as parents too, and I can help with that on, you know, or they could research. Let's say, if you're a younger, you have a younger kid and you're starting a network and you haven't decided yet whether you wanna do supportive decision making, guardianship, or, you know, power of attorney as a parent, you're like that's a lot, I gotta research this.

Jennifer Vincent: 14:58

But you could ask a network member that maybe, like they like to do research, they could research it for you, come to the meeting and talk about it and then, of course, ultimately as a parent, it's our decision, right. But you could ask for that help and then from the road, like for me, I have guardianship of Alexandra because I felt like that was our best option for her. But you know, as of right now I don't really have a successor guardian, but I'm hoping down the road over time maybe somebody in her network or somebody will say you know, I'll take over that part. That doesn't mean they're gonna take care of her, but maybe they'll say you know, if anything happens to you or I'll take care of that part you could have you know. Another goal for your network could be to have an emergency plan, like if something happens to you, like what's the what's why we do you know immediately in an emergency, you know if Sandy's incapacitated or Jennifer's incapacitated. So this is, I mean, it's just an amazing idea really, right? I?

Sandy Deppisch: 15:58

mean. It's incredible, and what I'm hearing is that it might be really beneficial, if you're a parent of a younger child, that you're making a personal network for, to have a seasoned parent, like you said, with a disability, on your team, your child's team. Because we've been down the road, we know some of the hurdles that we had to jump over. It's kind of second nature for us. We'd have a lot of resources. You know at our fingertips that they might they might not even know what guardianship is, or supported decision making or power of attorney is. Even hearing those terms is like what? So we could be part of that education piece for them, you know. So then we have to find somebody who's much further down the road for our 20 something kids. But yeah, I think that would be really helpful to have that Absolutely and you know.

Jennifer Vincent: 16:46

Another thing is you could bring in speakers to your meetings. So, like you were saying, you know you could have somebody come in and present to your network. Talk about dual diagnosis yes, I love that.

Jennifer Vincent: 16:58

Yeah, speak about a specific topic, because each meeting, as you go, you're going to want to always have so. Initially, the parents, ideally, you know, you provide a little light dinner, snacks or whatever, but then down the road again, to take it off the parents, you could set up a potluck and then network can be like how they want to do it? Well, bring something. Or again, the goal is to take the stress off the family. So then your network members could decide you know how they want to handle that. You know, for future meetings We'll bring potluck, you know, and take that off so that the parent doesn't have to do that.

Jennifer Vincent: 17:33

So then you always start out with, like I say, about 30 minutes of just socializing, having, you know, some food, maybe drink it, you know, glass of wine, depends on who you are and then you start your business, your meeting, and you always want to have an educational piece, you know. So you know a topic. But then you also want to make sure you have fun. You want this fun, you know, for your group. You know this is what it's about. It's about having a good life. So you also want to be with your network. You want people to other people in your network to tell what's going on with their life right, not just about Josiah or us, but so that you form that community.

Sandy Deppisch: 18:15

When I heard you talk at our GHFEDS parent education meeting about this, you were going on and on and so detailed about all of the aspects of it, which was amazing, but my head's going to oh my gosh, we're going to have matching t-shirts and we're going to have hats and I'm going to have themes for the food. I just got so excited about that creative side of it, which I think would bring the fun in. But you bring up a very important point that I'm sure you're going to touch on. I just want to mention it while we're in this section here. So Josiah as the center of his meeting and Alexandra as the center of hers they are an integral part of this process. Correct, correct? Yes, I can't imagine Josiah is going to sit for longer than five minutes at this meeting. Is that okay?

Jennifer Vincent: 18:59

It is absolutely okay. So, ultimately, you want Josiah and, like Alex, you want them to be a part of it because we're talking about them. You want them to participate however they want to participate. But I've seen some networks that the individuals they don't want to participate, they're not ready, and that's okay, but the family and that individual still needs support right. So you still have the meetings, but it's an evolving thing. But you want Josiah, you want him to be comfortable. So if he's like done after five minutes and he's out of there, that's okay, because this is all about him and for people to understand that, about him.

Sandy Deppisch: 19:40

So no, and he'd be in the area. He just wouldn't be in the middle of the group, Right, right right, but we just always remember that we're talking.

Jennifer Vincent: 19:50

It's about the person at the center, right. And so we want to know, we want people to understand how they can like okay, this is too much for him, he's leaving. Like understand. That's why the education comes in too. Like, understand how Josiah communicates and also how to communicate with him. So that's an educate and some topics you could talk about down the road financial, so people understand in your group Because, just like we know, a lot of people don't understand that with our children, if they get SSI, that we can't have somebody leave the money, that's gonna hinder them.

Jennifer Vincent: 20:31

And so educational piece. Or how SSI works, if they get SSI or SSDI, and that educational piece that could be a topic at one of your meetings If they're younger arts IEPs, to talk about those things, medicaid waivers, to have that as an educational piece. And then developing a care notebook and having what's a care notebook? So a care notebook would be basically everything about our kids, right, what supports they need. Okay, josiah, we brush, wake up in the morning, what his routine is, what he likes and dislikes, where his doctors are, like in a notebook you develop in detail Because if you think about that, it's one of my goals for Alexandra because I haven't done it yet, but to develop a care notebook.

Jennifer Vincent: 21:23

But your network can help with that. But because it's so much information. This summer I dropped Alexandra off at the Texas School for the Blind and visually impaired for a week and it's like we got to the dorm and I'm trying to think of everything to tell them okay, when she says no, no does not always mean no which is like the opposite of what we teach our kids.

Jennifer Vincent: 21:46

Right, but she's gonna say no, that doesn't mean she won't comply. But all the things that I needed to tell them like, okay, she needs this, she can brush her teeth, she needs assistance with this. Assistance with that in such a short time. But there's just so much information about our kids, what calms them down, what they like, what they don't like. A care notebook is just all those details.

Jennifer Vincent: 22:11

That's a genius idea, yeah, so one of your goals could be to and even your network members can help you with that, they can help you develop that. So, and then you can even do subcommittees. A lot of networks do subcommittees. So, like Sandy, I mean, some people think we're not as cool as we think we are. But the younger generation might be like mom, maybe you shouldn't be dressing and not just like because in the Elmo shirt it's 25. So all the times networks will have, like the younger cousins that are in their age appropriate peers, be in a subcommittee to help with what's cool to wear, what's appropriate to age appropriate, where the cool place is to go, because you think about that too, like for us, our kids are getting older. I mean Alec Andrew turns 22 on Sunday and does a typical 22 year old wanna hang out with mom all the time?

Sandy Deppisch: 23:10

Not at all.

Jennifer Vincent: 23:12

So that's the other thing. You wanna figure out ways that we can support them and them needing support, but not have to be dependent on us too, because that's not fair to them.

Sandy Deppisch: 23:23

Right, it's not fair to them. And the whole Carenet, the Carebook thing, I'm still stuck on. That is so cool because in the event that you're absent not that you're gone off the face of the planet, but that you're absent maybe you get called away for an emergency. Relative needs you and so now you have someone stepping in to take care of your child. That's so exhausting to explain, like you just did with her at camp, all of that stuff and for them to retain all that. But if you have it in a book and you just go bing here, you go anytime. They need to know they're comfortable, your child's regulated because their routine is this consistent. They're gonna have to be dealing with mom's gone and there's this different person here, but everything about their life pretty much remains stable and the same, and so that gives them some peace. I love this idea.

Jennifer Vincent: 24:13

Yeah, yes, that's one of my goals in my network is to get that care plan done. So but yes, they don't understand the change. And so, again, that goes into behaviors too, this behavior maybe they're expressing this and that could be in your care notebook just yes, their routine, their likes, their dislikes, their needs, medications, developing an emergency plan, like if there's a natural disaster where we live. And so how would the personal network help in that too, that you could develop a emergency plan?

Jennifer Vincent: 24:54

And then down the road, long-term goals. We have to think of where will our kids live when down the road. And one thing about that is sometimes we just have to break it down, and the personal network can help you too as you break it down, because we're always like, I know, I always think about the big picture. I don't know where Alexandra's gonna go when I'm gone, because it's like, okay, what happens when I'm gone, but you gotta break it down into little steps, like okay, what supports does Alexandra need where she lives? So let's start there. Versus where's she gonna go? But you gotta figure out what support she needs before you can figure out where that place is gonna be. You know, does that make sense? So, yeah, so.

Sandy Deppisch: 25:40

And it's not as overwhelming as the parent to wrap your mind around something when you can break it into bite-sized pieces like that, right, right. Think about the needs first.

Jennifer Vincent: 25:49

Yeah, and for some people, employment, you know, is something that the network can help with, to creative thinking, self-determination, you know. That's another thing for our kids. And then, as a network member, in their involvement it's important to let members know, because all our lives change. But if a network member needs to leave, that they work on replacing themselves. They help, you know. And another thing, that as a group you can recruit members, so like, if you want, you know, your network small I know, sandy, you have this huge list and I don't think you're gonna have any issues but I've worked with some networks where they're really there's like, oh, we don't have anybody to invite and they're small, but that could be a goal to figure out other people to invite to the network, you know, as a network goal, like, okay, we increase our network, so let's all get together and think about other people that we could include. Okay, that's great.

Jennifer Vincent: 26:53

I'm looking here at my notes to see if there's anything else I'm missing. It's a, it's a. I feel like it's a lot, but it's really. It's just such a simple thing and it doesn't cost anything, you know, and it's just so, and it's just something that we I don't know why we haven't been doing it all along, right, right and you know, and something that I shared recently, is that oftentimes people want to help.

Sandy Deppisch: 27:16

They don't have a clue how to help and oftentimes the person who needs help like in our case, parents who are overwhelmed with the care of our children who have different needs we don't like to ask for help, we just assume the role, which is why, in a family of two people, one usually knows it all. Like you said, your husband wouldn't know all that. My husband asked me this morning where are the Clorox wipes? And I was like okay, where do you think they might be? You know not to be condescending, but right, right, that's a little thing you know when we're talking about complicated issues with our children, right? So, yeah, I think it's.

Sandy Deppisch: 27:55

It's great to have these groups, because as parents, we don't like to ask for help, but if we let people know, hey, we would love your support, they would love nothing more to come alongside and offer that because they want to. They just don't know how. So this is just such a great way to match those two needs the people who want to support you and you who need support and just having a facilitator like you're the person that comes in and says, hey, guys, they need some help. Here's how we can help them. It's not really uncomfortable for us to be doing asking because you're doing it Exactly. That's kind of great?

Jennifer Vincent: 28:28

Yeah, it is. It is because it takes I used to one of my facilitator peers to facilitate Alexander's Network for me, which was really nice to have. One thing I told her was the reason I feel like I need you is because all my friends that I'm going to invite I'll talk a lot and to keep them under control and organized, because they're like I, like Jennifer, we're just here to have fun. It's like, no, we need structure and I need you to help with that. No, but you will be surprised.

Jennifer Vincent: 28:57

And even family members let's be honest because of parents we do it all and I know for me personally, I like to protect people and I hate to and that's not the correct word, but sometimes it protects people from my child, I mean, because I don't want them to see her in a negative light either, like family members and stuff. So I'm always trying to make everybody see only the positive side of her. But in your network sometimes you have to if your kid hits or pulls hair or bites, or I mean, some of our children have behaviors and you have to open up and let people know about that too.

Jennifer Vincent: 29:39

And again I say, behavior is always communication, that's another thing to make sure people understand, but let people know that sometimes we have hard days and be vulnerable, you know, because everybody has hard days.

Jennifer Vincent: 29:52

So, I'm just going to share a little bit on somebody else's network. I'm not going to use any names, but there's this network that's been together for over 12 years and for the first three years they met four times a year and thereafter three times per year. At the start of the network meeting, like we talked about, they enjoy a pot like meal. The first few years the network focused on learning about the person that centers, services and supports. After a couple years they, individual network members, committed themselves to learn more about specific supports that that child needed and I say child but you know I mean all our children are talking and then they became experts on that specific topic specific members. One year the network, like we talked about, developed an emergency action plan so that the network members would know what to do if the parents were unable to care for him. So they had a plan on what would we do if something happened.

Jennifer Vincent: 30:54

You know that network developed that plan Another year. The network helped the family prepare for transitioning out of school life. See, you and I are there and that, for me personally, that was my big thing, like I'm a planner and it's like, oh my gosh, my daughter just finished school. She's had an educator in our homes and she was two months old because she was visually impaired. We've always had a teacher, you know, besides DCI, we had a teacher from the school district in our house, you know. And now she's 20, going to be 22.

Jennifer Vincent: 31:24

And even though I'm okay with that, it was still like I don't have a specific plan. It scares me not to have a plan. And people are always looking at me like Jennifer, you know everything, you do everything. What's your plan? What's your plan? Like don't ask me that, because I don't. I mean, I have ideas, but I don't have something. Like, okay, when school starts back in August and other kids are getting on the school bus Alexandra's not getting on that school bus anymore what do we have Anything you know written out Like, what are days going to look like? I'm like it's summer, but we always do summer, so I'm okay with summer, but I don't have that figured out. But I think it's great if you start when your kids are in school, like I'm currently working on a network with a nine year old, which I think is an amazing you know, and for the family because they grow together.

Jennifer Vincent: 32:14

Sorry, I get off, but I'm this one let's see Out of school life and it says most recently, the network explored creative living options for this person, and that's the thing that. So the network helped explore that. And the last 12 years have been a journey for the network. Over time, members are becoming closer to each other, more cohesive and more invested in the person that centers future. This is one person's personal journey with their network.

Sandy Deppisch: 32:52

And that's interesting because they took a few years just to be educated Exactly.

Jennifer Vincent: 32:57

So that's what you have to remember. It's not something that you just rush. You just like us. We develop our personal networks over time, like you and I. I mean, we met each other in a music together class years ago and we see each other here and there, but I feel like recently we've kind of bonded more. At least I feel that way.

Sandy Deppisch: 33:17

Absolutely.

Jennifer Vincent: 33:18

And we all end up in different journeys in our life and people come and go, but same with our kids Like it's an evolving I mean. I might own personal supports and needs change right Over time and our kids do the same way and so it's an evolving process and so and things change. So what your child needs support-wise when they're in elementary is totally different when they're an adult.

Sandy Deppisch: 33:42

So you know.

Jennifer Vincent: 33:43

Exactly.

Sandy Deppisch: 33:45

Yeah, and then let me ask you this. This just popped in my head. So assume that a child who is now a young adult maybe you know there's a network that's worked with them for years, it's been a support system and then this child, young adult, transitions into group home living, for example. Does the team still meet, or do they or they? How does that work? I never thought about what happens when there's a big transition.

Jennifer Vincent: 34:08

Each network is different, obviously. So it's kind of however you guys do it. But I can say I'd say yes, you definitely. Because I mean for me personally with my daughter I think she has a lot of medical needs and right now I don't see one person really being able to manage that if anything happened to me. So I see that probably she would end up in some kind of medical facility or a group home that would be able to manage her needs.

Jennifer Vincent: 34:33

But that was one of my things when I did my invitation meeting that I told people Like if that happens, I want her to have that network to me and support her and so then they can still meet with her. Right, they can pick her up or, you know, go there but and then figure out how you know they support her. You know whether it be somebody making sure, you know, making sure her personal needs are met. You know, again, everybody has their strengths but I just don't want her to be. That's not a end all for her. It's the placement and the people that are there. So that was one of my, I can say one of the networks that I had heard about. That's been meeting for years the parents, they were trying to schedule a meeting and the parents were going to be out of town, so they said that. So that's, it wasn't a good time for them. So the network met anyway by themselves with the person at the center, like they met out parents, and you know how nice is that that the network was.

Jennifer Vincent: 35:30

So you know, connected that they're like we don't need you guys here to meet, we'll meet without you, that's fantastic, no, and so that's kind of. You know, it would be nice for our kids, right Like when we're not able down the road, that the network would maybe meet without us, cause, you know, we always feel like we're so connected with our kids. But the whole purpose is to get other people to be able to connect with them.

Sandy Deppisch: 35:53

Yes, Well, so you mentioned that the grant is going to be ending soon. Was there a specific deadline? If people want to do this, tell us a little bit about that. But then how? I know you gave the website in the beginning, but how do they connect with you or with?

Jennifer Vincent: 36:10

So the best way would be to go through parent to parent on the Texas Networks Connection website and then they could just request a facilitator and if they want cause, there's other facilitators. I'm not the only one out there and you know, there's facilitators all over the state of Texas. So, which is great, this is not just, and you could start a network without a facilitator you know, you start one on your own.

Jennifer Vincent: 36:35

So just know that. But so currently I believe this grant actually ends in August, but there may be another grant, so don't think that you know that you can still you know inquire about it. I know that Texas Parent to Parent is really good about working on getting funds for their programs, so but at texasparenttoparentorg Texas Network Connections is the program.

Sandy Deppisch: 36:59

So Okay, that's fantastic. Yeah, I think this is something that's so invaluable. You know, for a while, as a group there are GHFeds, which I mentioned, I think, in every podcast, but our GHFeds group was meeting and we were working on emergency plans. You know what happens when we die and where is all of our information for banking, and you know all of those important things that anybody would need to know, regardless of whether you have a child with a disability or not. But having a child with a disability kicks it up 100 fold because, like you said, they have so many support needs that people don't even know about. And having a plan in place, having not just the plan here's the book, here's the numbers, here's the computer links that you need these are people that are vested in your child and know them so well over time that you're like you got this, we're good, you know, and so it's not just a book, it's a relationship, and I think that's the key.

Jennifer Vincent: 37:57

Exactly. And then you know all of everybody has strengths, and so that's the thing and abilities, and so people in your network that care about you guys, I mean, they're gonna be the ones who say you know what, I'm good at this, I can take this part, cause our kids really. It does take a village, right, and that's the whole point. It takes a village and as we get older, I think you know we get tired too, and so it's just nice to have that sense of relief, like okay for me personally that I've set up something for my daughter, because I feel like I am not doing her justice. If I am the only one that knows how to care for her, knows how she communicates, and I'm not setting up a quality support system for her, I'm not doing her justice. So it's such a relief to know that you know and people, like you said, people want to help but they just don't know how and talk about family members and stuff too.

Jennifer Vincent: 38:55

So over the years, you know you go to family events and stuff and you see each other and a lot of times it's like do you want to spend an hour talking? You know, and they're like, how are you doing? You're just saying oh, we're good, we're doing this, we're doing this. But do they really want to hear over Christmas holiday how you've been to the cardiologist, how you've been on the phone for hours with Medicaid? We don't share that information because they don't understand it. They don't want to hear it. But if you invite family I feel like family members in your network this is a place to share that, because you've got the structure where they're like wow, we did you know. Even I know my own family. They have no idea what I really go through. I think it's because we don't want to burden them with that. But when you're developing your network, you're not putting a burden on somebody.

Sandy Deppisch: 39:39

You're sharing information in a structured setting and I think that's a great way to share what we go through too, versus you know, and mentioning burden being a burden, you know, oftentimes siblings of the individual with a disability, whether it's spoken or unspoken, might feel what is going to happen when something happens to my parents. Oh my goodness, what am I going to do? You're taking that off of their shoulders so that they are aware. Hey, look at it's, it's a village that's going to be supporting. It's not just on your shoulders, you know, and I think that's a big help. And something else I wanted to mention which is going to be integral in our case we have a lot of family that's out of state. Zoom, they can zoom in on these meetings so they don't have to be there in person, right?

Jennifer Vincent: 40:25

Yeah, so I've conducted meetings in several formats but One. Sometimes you could just do zoom, like with the pandemic. You know, some networks were formed just on zoom. Ideally in person is always better, right, but I just did one the other night and it was hybrid one siblings in Colorado and other siblings in Florida, and then the other family was there, and so I mean the hybrid works so well.

Jennifer Vincent: 40:51

And you know, even me personally, once I started my invitation meeting, I was like okay, well, should I make this person out of state? I was like no, but since then I have a friend of mine that I went to school with, that lives in South Carolina. She, she, she was in town when we did Alexandra's first meeting. So I was like you know what, let me see if she wants to come, like she didn't come to the invitation meeting but our and so just like yes, and so now she's joining us on zoom. And then I realized the other day, just the other day, I was you know, you start processing people that you can add so and and I was like Alexandra had an attendant that loves her and connected with her right, and so she went into the Navy, she worked for us when she was 18 in high school and now she's in her 20s and she's in the Navy and she's stationed in California and but when she comes home she's still visit.

Jennifer Vincent: 41:41

She was the first person ever took Alexander to the movies by herself and I was like, what you want to take my kid? And I remember her coming home one holiday when she was living in Austin with a boyfriend and took on Christmas Day, took Alexandra to see Alvin in the shipmikes, like oh, and I was like, and she was a talk about sibling. She was on the swim team with my older daughter and that's how we met her and so your, honestly, that have become connect. You know, think about support system to the friends that have been in their lives, but they're not only gonna be supporting Josiah, they're gonna be supporting their friend right, Right yeah as a support system.

Jennifer Vincent: 42:19

So that's why I say just think outside the box. So I thought you know what I'm gonna. We were just Texan, because she was like, oh, I'm stationed in California for the next five years or something. And I said and I Said, oh, we're gonna have to make a trip and come out there and see you and San Diego. And then I said you know what? And I thought you know, I'm gonna invite her because she can join on zoom, right. So I was like I would love to be a part of Alexandra's network, you know. And I thought, because she always got, you know, some people just naturally get our kids and and connect with them and she was one of those people that did. And so now, even though I didn't invite her to the first meeting, invitation me. I have invited her now and she's gonna join in our first meeting or our second, third meeting in August and on zoom.

Jennifer Vincent: 43:07

So, yes, zoom works really well and even though you think, how can people support you when they're on, you know, in another state? But sometimes it's just the knowledge, right, sharing and down the road. You talked about siblings. You don't want it, you're all just. You know, like I know, you have several kids right, and I have three and but you don't want it to just be like, okay, who's gonna do what like the same, but again they get that educational piece and then they can decide. You know what I can do this? Because they're learning right, even though they see it, but they see it from the sidelines and then they also see they can get support.

Sandy Deppisch: 43:45

So they're not alone and you know.

Jennifer Vincent: 43:48

If you guys do become where you're not able to care and even now and day to day, like how can they support their brother, how can they support their parents? But how people support them as a sibling to our children, so I mean it's a, it's a. It is a huge relief for them because I know, as parents, we don't want yeah, we don't want to put a burden on our other children and we don't want them to feel like they don't have a choice. Right, want them to know that they're supported as well. So it's not just about the child and the parents, but it's also about the siblings, so the entire family.

Sandy Deppisch: 44:22

Yeah, that's amazing. This is just such an incredible idea. I'm so glad that they started this in Canada and it's worked its way here and and that you're now doing this, because I think every single person who hears this In some way or another, if you have a loved one that has support needs, you need to reach out and get this process started. It's just gonna make a whole huge difference in your life and you make the whole process so easy Jennifer too. So.

Jennifer Vincent: 44:50

Yeah.

Sandy Deppisch: 44:50

I mean so far. We've only been in the beginning stages. We haven't had our first meeting yet, but but I'm looking forward to it.

Jennifer Vincent: 44:56

I have to say I just did one couple of nights ago and the mom had Emails or called me the week, a lot the week before, and she's like Jennifer, I hate to tell you this, I got some bad news and she's like I just don't think I can do it. You know, like she, just she's like you just don't understand my family. They just don't want to help and they don't understand and they don't and I, you know, I mean I hate to say I co-hurried, but I convinced her. I was like I promise it will be okay, just, yeah, it's going, I'm gonna do all that and then if it doesn't work, you don't have to. And then she called me, you know, the next morning not yesterday at, because the meeting was Wednesday after, and she's like this was so wonderful, my kids were, they're eager, my sons already developed this communication tool for the group and my other ones already named it.

Jennifer Vincent: 45:43

This was just the invitation meeting. And then my in-laws were just like, you know, she's like and I, and she said I feel such a relief now, right, oh, and so, and that was just the invitation meeting. We, you know so, and I was like, yeah, because sometimes the invitation is the hardest part, I will say, because it's like I'm asking people for something yeah, like we talked about, and so it does help to have that facilitator there to To do that for you, so you don't have to feel that as a parrot, because it's hard.

Sandy Deppisch: 46:14

Yeah, yeah, definitely, oh. This is just so amazing, so excited that you came on and shared this with us, and if people need to reach out to you, we'll put your contact information Absolutely notes as well.

Jennifer Vincent: 46:26

Yeah, they can always email me my personal email as well, and. But yes, I just want people to know I'm not the only facilitator out there, so they don't have to like you know and and that that they can't reach out if they would like somebody you know Different well, another thought just popped in my head.

Sandy Deppisch: 46:41

So we're talking about Texas. Other people might not be in Texas. Do they have something similar in other states that you're aware of?

Jennifer Vincent: 46:47

I don't believe so, because it was a couple of parents that found out about this program and and Canada, and they said you know what? We've got to bring this here.

Sandy Deppisch: 46:57

So, jennifer, I'm envisioning some travel for you and I, so I'm gonna be along, I'll be the person that facilitates the travel for you and you be the person just to get this going in other states.

Jennifer Vincent: 47:10

I know, I know it is. I mean I when I, when I first heard about it years ago and now that I'm started it, I mean I'm just, I'm passionate about it. You know, I mean I just because I know for me personally and for other families that I see all you know so often that just feel so alone and isolated. You don't have to be, you know. I facilitated another one and the the mom was like I don't think anybody's gonna come. She had a huge. She had people on zoom Locally even that just couldn't attend in person. She had people from out of state. She invited people from the local library Thanks for daughter to the library, big for herself, for book club and craft, so she can get out.

Jennifer Vincent: 47:55

And her daughter has a disability and she takes her and so I told her you know and, but think outside, like we talked about your neighbors and right, and Think outside the box. So she's like you know, we talked to these people and when I went, if I don't bring my daughter to the library with me, they're like well, where's your daughter? And you know they seem to really good. So she and two people from the library came to her meeting and they were just you know, and and then she said there was an attorney there and she said I asked him. He was a younger guy and he comes to book club or whatever. And so he said well, I don't know if I'm gonna failed attend the meeting or join the network, but I'll tell you what if you ever need an attorney, if you or your daughter ever. No, if your daughter, who has a significant disability right, ever ends up in trouble with the law or gets arrested, call me. Here's my business card, so you never know what connections you're gonna get reaching out like.

Sandy Deppisch: 48:54

That's so great network.

Jennifer Vincent: 48:55

He offers legal services if she ever got Trouble.

Sandy Deppisch: 49:00

That is awesome. Well, I'm so grateful that you're here today and I think, like I said, sharing this information, getting it out so that people know this is available as something that is gonna make a difference for a lot, a lot of folks. So, thank you so much, jennifer, andy and we'll we'll have you back again next time you discover another new amazing thing.

Jennifer Vincent: 49:21

Absolutely. Hey, I did want to say I just you know, you know, you know I'm crazy, but I did just recently become trained for tag Facilitation. Which is what is that? I'll be brief it's transition action groups. Okay, I know. So that that's a whole, nother whole another podcast, but wait, wait.

Sandy Deppisch: 49:42

Already started teasing us, so tell us what that is.

Jennifer Vincent: 49:45

A transition action group is where you get and you know, again, people can start on their own a group of parents I say parents or people, get together because they have goals, whether common goals or they could even be different goals of things that they need to work on.

Jennifer Vincent: 50:00

So and I and again I have to give a plug the Texas parent-to-parent they have a great transition inventory tool when you can go through because transition is big right, we talked about Bridget and to school, to arts, to adulthood, to all the things that you need, and I mean I just love that tool. But I know, personally, I have goals, you know I have this huge list, but you, you develop, you get in a group and you could do in person or on zoom again, and you Go through your transition inventory of things that you need to work on and then you, you create a goal and then, and the thing is that you accomplish that goal. So that's where the action comes in. So it's a tradition action group. So, like in, you meet, let's say, just three or four meetings over six months, are you don't? It's not like you're not like a personal network where it's a growing thing for years, because the whole purpose is to figure out what you need to get done and encourage each other and support each other and and and Get your goals done.

Jennifer Vincent: 51:02

You know, so we'll be starting a will, I'm getting guardianship, and then again it's one of those things where you break it down in steps. Okay, so you break it down in steps where you say you know what's step one making the phone call right. It could be as simple as I know I need to get on the interest list for these Medicaid waivers and I haven't done it. You know right step one. You know right you, you break down your goals and steps and then so you're gonna meet and you're gonna go through your transition inventory, you're gonna set a goal and then you're gonna say, okay, I'm gonna do this portion of my goal before the next meeting. And then I think I always think of personal networks and Transition action groups, just things it helps with account of, like my own accountability.

Jennifer Vincent: 51:46

Sure, you have a deadline to have a deadline and then you know You're gonna meet and then you talk about where you're at and how you met that goal and then you break. You know you can break it down again the next month, like, okay, now I need to do step two and then your group meets and you and you support each other and you can also, you know you talk about how we're supportive. Some of us don't want people to give us advice. That's not supportive, right, you know? Or some people do. Some people feel supported if they get like oh, you're doing a great job and some people don't like that. So you kind of, you kind of also you address, like those things. So it's not really a support group because it's an action. You're there to get things done. But again, it's another wonderful tool to use for us parents to help our children, and that's what I'm always looking for to make life better for my daughter and, you know, other individuals with disabilities and for ourselves as parents like, so we don't feel so much stress on.

Jennifer Vincent: 52:42

Yes, I don't know who's Sandy. But now it's like for me personally, like okay, alexandra finished school. I thought I'm gonna deadline, like you know.

Sandy Deppisch: 52:51

I know I always think like the windows closing. I have to.

Jennifer Vincent: 52:57

How did I spend 21 years and I'm not done right?

Sandy Deppisch: 53:00

It's never ending. But you know, speaking of stress, this is why those of you that are listening, you can't see this, but Jennifer and I both have on backgrounds where we're at the beach with a palm tree behind us and the waves, and the whole time I'm recording this, I'm just looking at those waves like this is the most peaceful way to do a podcast. I love it. Yes, thank you again, jennifer. I love everything you shared with us and I look forward to having you back again soon. Thanks for listening to the embrace the blessing podcast. Visit embrace the blessing comm Slash podcast for show notes and links to any resources mentioned. If this has been beneficial to you, please share it with a friend or post it on your social media pages. Join me next Wednesday for more inspiring stories from people just like you.