AGE 22 The Cliff: What Happens Next?

Transitioning from school-based services to adulthood is one of the most critical—and often misunderstood—phases for individuals with special needs and their families.

In Episode 5 of Remarkable Futures, Steve Norton is joined by leaders from CCARC and the Bristol Adult Resource Center to explore what really happens when individuals “age out” of the school system.

This conversation covers:

•  The reality behind the “age 22 cliff” 
•  How adult service systems differ from school-based supports 
•  Why early planning and collaboration are essential 
•  The emotional impact on families—and how to navigate it 
•  Real-world insights from professionals and parents 

This episode offers both practical guidance and reassurance: the transition to adulthood isn’t the end of support—it’s a shift toward independence, opportunity, and long-term stability.

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Transcript

Introduction – Transition is Hard for Families

SPEAKER_03 0:00

Transition is hard. It is sometimes I think it's harder for the families than it is for the individual.

What is Remarkable Futures? (Podcast Overview)

SPEAKER_01 0:09

Planning for a loved one with special needs takes clarity and the right strategy. Remarkable Futures brings practical conversations and expert insight to help families protect benefits, build stability, and move forward with confidence.

Meet the Guests (CCARC & BARC Leaders)

SPEAKER_00 0:24

Hi, I'm Steve Norton, and welcome to our fifth episode of Remarkable Futures, a podcast focusing on the needs of special needs individuals and supporting their families. I'm pleased to welcome you to our new set today, so a little bit different look than what you've seen in our previous podcasts. I'm also very excited about the topic today, and we're going to talk about a lot of different things, but we're really going to focus a little bit on transition, particularly when special needs individuals become adults. And I'm happy to have with me Lisa Sabatini. Lisa is I'll let you introduce yourself because I think your title may have changed recently.

SPEAKER_03 1:14

Yes, I am currently the executive vice president at CCARC in New Britain.

SPEAKER_00 1:18

Excellent. And Yvonne Daigle.

SPEAKER_02 1:21

And Yvonne, if you could just tell me your title, because I'm I'm the Associate Executive Director of Program Services at BARC.

SPEAKER_00 1:28

Wow. Now BARC and how do you do you say CCAR? You don't try to say SARC or no, okay. So those are both organizations that are tied to ARC. Is that correct?

How These Organizations Started (Parent-Driven Mission)

SPEAKER_00 1:42

Or it's not?

SPEAKER_02 1:43

It's not.

SPEAKER_00 1:43

BARC is not. Okay.

SPEAKER_02 1:44

They used to be historically and did not maintain that connection over the years, so they are Bristol Adult Resource Center. Okay. Um so we don't say Bristol ARC ever because we're not an ARC. So we either say BARC or we say Bristol Adult Resource Center, separated out.

SPEAKER_00 2:02

Now, and it seems like a lot of these organizations, even you know, historically ARC, which I believe started in the 1950s, um, and maybe BARC is like this as well, started with initiatives of parents that felt like things weren't getting done that they wanted to see done to support their family members. Is that the heredity of your organizations?

SPEAKER_03 2:26

Yeah, at CCRC, we are actually um approaching our 75th year. So we were founded in 1952 by a set of parents who didn't know what supports to get their children, or there were no supports. There wasn't even uh special education in New Britain at that point. So we actually, as an organization, worked with the New Britain school system, and we had the very first special education classroom in New Britain.

SPEAKER_02 2:52

Similarly, BARC was started by a group of parents, um, and we still serve a couple of the individuals who are part of that original set. They were very young at the time.

SPEAKER_03 3:06

Yeah, this past summer we actually lost our last founding member of the organization, which was it was a moment for a lot

How Services Are Funded (State vs Private Support)

SPEAKER_03 3:14

of us.

SPEAKER_00 3:15

So uh one of the things that we talk about when I've met with uh previous uh guests involved with nonprofits is uh understanding the funding mechanisms that come in. Are you funded by a combination of private donations, any government supports within your organization, or is it a mix?

SPEAKER_02 3:37

The bulk of our funding comes from DDS, the Department of Developmental Services. Um we do have some private donors or people will do fundraising for a particular event, but that's our primary source of revenue.

SPEAKER_03 3:51

Yeah, and same with CCRC. I think we're probably 97% funded by the state of Connecticut. Um and then the remaining 3% we have to make up in donations, federal grants.

The “Age 22 Cliff” Explained

SPEAKER_00 4:05

So um one of the topics that that we want to get to is talking about the transition that uh families go through, individuals go through, uh, when this they sort of are out of the school system. Um and I, you know, in full disclosure, the Norton family is going through that, has gone through that uh with our son. And there are moments where we had kind of felt a little lost in the process. And the thing that frankly always amazes me is that there are so many organizations that are out there that really can provide support that uh oftentimes people don't even know about. Um and one of the things that that we've tried to um instill in the pro or or feature in the in our son's programming, if you will, in terms of what he's doing now, is to making making sure he's not socially isolated. And um I recently met with a family where um they were concerned about that as well for them. So it I guess if we could start by kind of talking about that magic, not so magic age of 22 and what that means uh and what the the rules are around that and perhaps why it is this way. Why why do suddenly there's this cliff and and how to uh and how how should we not view it as a cliff, that there are other things to jump to.

The Truth About the Age 22 Cliff

SPEAKER_02 5:35

So um I had heard that you felt it was a cliff. Um, and that made me kind of sad because I think it should be a team developing before a student ages out of school and collaborating together to come up with a plan for how to best support them. Um we have had a lot of school systems tell parents, and the parents will come and tell us, okay, so the school said they'll do three days of transition, you know, towards the end of May, and I'm not sure how my kid's gonna handle just three days, and we always tell them it's supposed to be individualized. We have had students who transition to us for two years. Um, so when they are adults and they're no longer eligible for school services, we're familiar to them. We've we've been in their lives for two years. Um, there are some situations where the schools didn't have adequate services for their students and they come to BARC for years, um, funded by the school, supported by school staff sometimes, transported by school. There are opportunities to make it collaborative and make it um a team approach. And my biggest thing I always tell parents when they start reaching out to us is tell the team to invite us to the PPT. Invite us to your next meeting so that we can advocate and tell them what our uh options

Why Early Transition Planning Matters

SPEAKER_02 7:07

are and what that student could be opened up to for the future.

SPEAKER_03 7:11

Um, you know, oftentimes in school districts it is very much so in a bubble. All of our kids are. I mean, realistically, when you think about that, um, throughout their whole education, they're focusing on gaining the skills to go out into the real world. I hate to see families seeing it as the cliff. I mean, to me, it's the opening to adulthood. Yep, the supports are still there, they just shift. They're not as tight anymore. You know, they're not as well you get to make choices.

SPEAKER_02 7:41

It's not a bell rings and you have to go to this class and then, you know, sit in your chair and do this. Um, excuse me, but in addition, I think what could be helpful for students is if the schools laid that foundation of how exciting next year you're gonna be an adult and you're gonna go to adult services instead of, oh, I can't believe you're gonna graduate next year. Yeah. I can't believe you're you're leaving us, you know, kind of a vibe. And that I think get people excited about what I'm gonna do

Preparing Students for Adulthood

SPEAKER_02 8:14

next.

SPEAKER_03 8:14

Yeah, like those last few years of the education piece, whether it be from 20 to 22 or 23, depending upon the the individual's birthday, really should be focused on that that changeover. The the education piece aside, that area is done if you really think about it. Yep. Um, you know, can we start focusing on life skills? Can we start focusing on what happens out in the community, you know, gaining that experience? Because that's only going to help the student or the individual transition to whether it be day employment, whether even a residential program at that point.

SPEAKER_00 8:45

In talking with um people are attorneys that advocate for individuals where that when they're not getting the proper supports within school systems, one of the things that um seems to come up is the um just the the lack of that personalization of a plan. So you when you're working, do you have a cooperative relationship with with the school systems in your area?

Working with Schools & IEP Challenges

SPEAKER_00 9:14

Absolutely. Yep.

SPEAKER_02 9:15

Um sometimes the folks that the teachers might directly see more often, I mean the parents might directly see more often, as in the teachers, the paras, maybe even the administrators aren't as knowledgeable. So they might say, we don't do that, we do this. Once you get the special ed coordinators, they're like, Yep, we can do that. Um and that's I think where we have the relationships as an agency is with the coordinators.

SPEAKER_03 9:41

Absolutely. We just had the new Britain school system reach out to us maybe a year ago, give or take, for a handful of students that they didn't feel they were appropriately supporting anymore. And they transitioned to CCRC, have been a part of our day program now for probably eight months, you know, probably since July. Um, and they're they're doing really well. And we've been able to personalize the services to what they need because we're not

Why Adult Services Are More Flexible

SPEAKER_03 10:05

as rigid. Yeah. Trying to find the most politically correct word. Yes. Um, less structured. You know, it's school system services are very structured and they need to be. Like I do understand the purpose behind them, but adult services can be more fluid.

SPEAKER_02 10:25

And I'll say, as a parent of children who two of whom have IEPs and we've gone through the planning process, um, I can see how parents would sit in that room with this large group of people and say, Oh, okay, that's that's what you can do. Okay, that's fine. Um my oldest has a very strong personality, and he was the strongest self-advocate you could ever find. And I was there backing them up, and the special ed coordinator would look at us and say, Yes, we can do that. Yep, we can accommodate that need. So it's some of it is educating the parents as well.

Why People Choose This Work (Personal Stories)

SPEAKER_00 11:02

Generally, people don't fall into your lines of work without a backstory themselves. You mentioned your your your kids. Um can you each touch on what led you to the path of of where you are today in your careers? And um, you know, I think of people in your roles as saints because being on the other side of it, um, you know, it's just so refreshing to to know that there's there's help out there and there's activities out there and and and and a way for um the parent of a of a special needs child to know that their their loved one can be engaged in the community.

SPEAKER_03 11:44

You want to start? Sure. Um, well, I fell into it. You fell into it, I did, to be completely honest. Um I finished my master's degree and I was seeking work. And honestly, within the same week, I interviewed at CCRC as well as the hospital for special care. Uh, CCRC called me first. Um, but I think within six months, I knew I found my people. Um, I used to guest lecture down at Southern for an old professor of mine for master's level students, and that was one of the biggest words of advice I could give them is just find your group of people that you want to support, that you want to advocate for, that you want to go to bat for, that you love being around. I could never see myself doing any other line of work at this point. Um, I fell in love with everybody, you know, that we support the work that we do, the families. And since then, um, I've gone from a behavioral support standpoint. So I was a behaviorist through directing, being a VP of the departments, senior VP, and now executive.

Real-Life Backgrounds That Drive Advocacy

SPEAKER_03 12:50

And I don't plan on stopping. Like I love the work that we do.

SPEAKER_02 12:55

So for myself, I was born into a house with someone with disabilities. My older brother, Peter, had um significant physical and developmental disabilities. Um, and my sister was two years younger than him, and I was one year younger than her. So my mom always said she had three under three. Um, we had a lot going on. Um, well, three diapers, cribs, and bottles with her. Um we had a lot going on, and we were all engaged in Peter's daily life. So that for me was the starting point. Um, my sister as a young child would call people out in a parking lot and say, Why are you staring at him? You know, just advocating from day one. Um as I moved out of the house and, you know, went to college, got my degree in biology of all things, um I just couldn't imagine sitting in a lab somewhere, pipetting things. And um, meanwhile, my parents ended up fostering to adopt another child who had significant disabilities. Um, and you know, we always say in our family, Peter brought us all to this line of work. My mom became a paraprofessional, my dad was what was at the time called a QMRP, qualified mental retardation professional. Um, my younger sister is a special ed teacher. My older sister worked at BARC with me. So, you know, we we are very tightly tied to this community. And I think, you know, knowing what we would want for our family member helps us, you know. But there are people who are empathetic that don't have that life experience that can put themselves in their shoes. Um, I always say our staff aren't here to get rich. Nope. You know, they'll come to a prof nonprofit to get rich. Um, they're here because their heart's in the right place.

SPEAKER_03 14:47

And they're often here because they're also connected. Like the the best DSPs I've ever worked with are caregivers at home as well as caregivers in their line of work. Um, it takes an incredible amount of hard work, dedication, I mean, love, empathy to do what they do on a given on a daily basis. And it's magic when you see it all kind of come together.

What Changes After Age 22

SPEAKER_00 15:10

Well, thank you both for sharing that. Um I guess if we could talk a little bit about, and I know you touched on it earlier in the conversation, but what shifts from school-based services to adult services? What is what should it should parents expect for for their loved one that's hitting that magic 22, 23?

SPEAKER_02 15:33

One of my biggest observations is that a lot of parents start visiting adult service programs and saying, oh, my kids gonna have a one-to-one, they need a one-to-one. And that is very unusual to happen. Um, so the level of staffing changes. Um typically, if you

Why 1-on-1 Support Decreases

SPEAKER_02 15:54

are receiving one-to-one supports in a school system, it's because you need that level of support in order to fully engage with your educational activities. Um and when you get to adult services, you could be doing recreation and leisure programs, and that doesn't require the same level of support as um engaging meaningfully in an education. Um, so the shift there is um a big adjustment for some people. Um sometimes students will come to us with a one-to-one funding for six months, and then the expectation is we're we're moving them to group supports after that time. If someone is in need of one-to-one supports, it's because they have extensive medical, behavioral, um, you know, safety needs. Um, and an agency has to put together a whole packet and go argue a case in front of a group of people from DDS and and really, you know, um demonstrate that need. Um, and then continue to do so over time because DDS will say, okay, you might need it now, come back in a year and let's see if you still need it. So that's a big adjustment for a lot of parents.

School vs Adult Services (Big Differences)

SPEAKER_03 17:07

It really is. I mean, they they come in very often. I mean, I am seeing some reduction in that anticipation that they're coming in with one-to-one supports, but it is often the case that they are coming in saying, you know, my loved one does receive enhanced staffing during the day, but that's an educational entitlement. Like they are able to get it in the school system. In the state-run programs, it's not quite the same. You know, they have to be applied for, they have to be granted. Um, and that structure really kind of shifts. We have less intensive programs unless the person needs them. You know, if it if you're doing personal structure. Exactly. Um, but still that structure kind of looks different when you're walking into an adult program. And I think I do encourage our families, come often. You know, we are often at the school resource fairs, um, you know, as organizations, just telling you about our services, the options we have. I encourage parents a lot of times to even come volunteer. Like look at the organizations in your circle or in your area and go spend some time there. You know,

Why Families Should Visit Programs Early

SPEAKER_03 18:15

find events. Yes, go find the demand. You know, see what it feels like because you're not looking for your forever program either, realistically. Um, I think that if we're all being honest, people's needs change. So program needs change. You know, someone may start at BARC, but over time may need to transition to C CRC for some reason. There could be a number of things, or vice versa. Um, so it's it's where your loved one is gonna feel comfortable, it's where you feel comfortable, it's where people see them. You know, they're her.

SPEAKER_02 18:50

Another big shift I notice is I don't know how CCRC does it, but when we arrange our staffing for our individuals, we rotate. So um, if in a given program there are there are, you know, eight groups, you know, some are one-to-one, some are small groups, some are large groups, there's eight staff covering those groups, and the staff rotate, which is very different from the school system where you will hear parents say, Oh, they're para, you know, because that person was literally tied to them through all of school. Um we find it's helpful to rotate so that first of all, um if that para in school or a staff with us is out for some reason, leaves the job, whatever it might be, it's a lot less of a struggle for the person being supported. But also, um, you know, there's a couple different factors. If Johnny can follow a two-step direction, but only when Sally gives it to him, that's not very useful. But if Johnny can follow a two-step direction when eight different people give it to him, that's something that he's now generalizing. Um, so those are the kind of things that we're mindful of as well.

SPEAKER_03 20:01

Yeah,

Staff Rotation vs School Structure

SPEAKER_03 20:02

we absolutely run the same way. Um as much as we offer, you know, as much as we can.

SPEAKER_00 20:08

So the the the frequency of one-on-one support diminishes. Um the the goals are more life skills oriented, and the educational component um is is largely not there in the sense that they're not learning algebra anymore or attempting to learn algebra or

Life Skills vs Academic Learning

SPEAKER_00 20:29

whatever.

SPEAKER_02 20:29

Learning social skills, recreation skills, work skills, whatever it might be. Yep.

SPEAKER_03 20:34

Yep, some folks may continue um, you know, like reading goals, for example. I have some folks that really enjoy reading, they want to keep those skills up. You know, they may be going out to the community to the library to get books out to you know, read to the rest of their peers or whatever it might be. But yeah, we're not focusing on that education piece as much. Yep.

unknown 20:53

Okay.

SPEAKER_00 20:54

So in terms of um families hearing or describing aging out, you know, the there's the transition from being in the school system to adult services. And then there's potentially um a I don't want to say a permanent home, but and and they were um the van the the vocabulary has changed. They're not referred to as group homes now. They're what are they typically referred to as there's

Residential Options Explained (Group Homes vs Independent)

SPEAKER_00 21:25

different sometimes.

SPEAKER_03 21:26

People do still use the phrase group home. Yeah, it's the most commonly recognized frame um or word, excuse me, but community living arrangement, CLAs are is what the state refers to them as.

SPEAKER_02 21:38

We have some that are CLAs and some that are CRS, which is uh continuous residential supports. It's essentially the same function. Um one is uh, you know, are you paying room and board and the agency pays all your bills, or the other is you're paying your share of all the bills?

SPEAKER_03 21:54

And how many people live in an environment?

SPEAKER_02 21:56

Yep.

SPEAKER_03 21:56

It's really what it breaks down to.

SPEAKER_00 21:58

So um are you in? Involved with assessing whether or not an individual should go into that environment.

How Placements Are Determined

SPEAKER_04 22:05

Absolutely.

SPEAKER_00 22:06

And you know, one of the and I'm I'm hoping you can help me to have an accurate picture, maybe the our listeners have an actual accurate picture. Um and and this is viewed by people in multiple different states, but I think you know, of course, uh we are in Connecticut, so there are some specific Connecticut examples. And I think of um, for example, uh my in-laws had a neighbor who um died in her late 90s and had a son um who had stayed with her throughout. And um she had looked at trying to get group home um or community living um taken care of for him before she passed, but it didn't happen. Um so my understanding is within the system, if you will, if if the caregiver's gone, all of a sudden that person is getting a higher number on the list to get into a uh a community living situation. Um is that accurate or are because that there used to be wait lists, there's not wait lists. If you could maybe touch on that a little bit.

Waitlists & Emergency Placements

SPEAKER_03 23:12

There are lists. There are definitely lists out there. Um, and how funding is assigned now still is tricky. Um, there's a lot of elderly caregiver funding. Um, so I do encourage families who are starting to age, and I think they're it might be 60. 60.

SPEAKER_02 23:30

Yeah, I think 60 is the first, and then it bumps up to 65.

SPEAKER_03 23:34

Yeah, so there's a tiered approach, I think, for that as well. But I do encourage them to get on as quickly as they can. Transition is hard. It is sometimes I think it's harder for the families than it is for the individuals. I've in the past year and a half, I've transitioned two folks from their family home, and I'm about to embark on my third. And each time it was almost harder for the family than it was the people that we support. Um and I when I speak to my families,

Why Planning Early is Critical

SPEAKER_03 24:06

I always encourage them to consider the fact of what it would be like if they weren't there to help their loved one transition, like in the instance you just gave. And recently there was a situation that DDS is looking for placement for somebody where that happened. Uh family member suddenly passed, and this person is now left in a home where their caregiver is gone, they've never lived outside their environment, and they have strangers coming in to try to help support them. Nobody wants that for their loved one.

SPEAKER_02 24:39

And when it reaches that point, it's considered an emergency placement. You don't get to pick and choose where you're gonna be. It's we found a spot. This is where this person's going. Um, which can be hard because you might lose your whole community.

SPEAKER_03 24:52

You might move an hour away from and in this particular case, it was, I think, an hour. They were referred to me recently. Um, and I looked at the the referral packet, if you will, that comes through from the state and the environment I had, this person would not have been successful. And I was like, I I can't, they've been through so much trauma as it is. I I can't in good conscience say yes because I know it's not it's not gonna work. Um that would be another setback if it failed.

SPEAKER_00 25:24

And Yvonne, you've lived this as a sister. Um, and one of the things that you know I think of as uh a parent with two quote-unquote normal kids who you know have their own challenges. In some ways, they're more challenging than my son. Um but the one of the things that we've tried to structure for them is putting our planning in place both financially and um in terms of uh family conversations, that we want um Harry's sisters, Harry being the special needs individual, um, to be his biggest advocates. But we also don't want them to be in a position where they feel like they have to support him financially, that it we don't want to interrupt their lives if something happens to us and have him suddenly um care for their brother. Um so can you talk a little bit about being a sibling and how do you navigate that?

The Sibling Perspective

SPEAKER_02 26:27

So um I've had some unique experiences in my sibling role, but also I have additional family members, cousins who have disabilities, um, two of whom are being supported residentially now. So we've had a lot of different experiences. So my older brother did pass away when he was a teen, so that wasn't something that my parents had to navigate with him. Um my youngest brother is um still living with mom and dad right now. Um he has autism as his one of his primary diagnoses. Um he's gone through the life skills, having people come in the house, take him out to practice some of these things. Um, and it's something that's on my parents' mind. They're not nobody lives forever. Um, you know, but there is no expectation that, oh, he's moving in with you. Like that's we know that's not realistic. Um for a couple of my relatives, you know, I think the parents thought, no, he's gonna live with us as long as possible. And then they realized he wasn't happy. You know, he wasn't living his full life because mom and dad are aging and they can't do all the things I want to do. And he is now thriving in his residential placement. Um, and the the third person that I can talk about going through this transition, um, you know, was just really struggling and loves her her placement. Um, when she goes for visits, she is always saying, When am I going home? I'm here for a picnic, but when am I going home? Um, you know, it's a big, big thing for

Why Independence Improves Relationships

SPEAKER_02 28:01

folks.

SPEAKER_03 28:01

It is true. Um, even somebody that I support who is highly autistic, I was just talking to his parents the other day, and mom said to me, you know, came home over the weekend, we were hanging out, had a couple of hours together, and then he puts on his bag and he's like, Ryan's house. And he's ready. Yeah. Like, it's it's time for me to go. Um, and the more you can be really a part of that, you setting it up. As somebody who has quote unquote normal children, you realize the change in your relationship when they moved out and started becoming adults, right? You almost you become like a friend in one area. It's similar when your loved one with a disability, like you, you are now their advocate. You are not necessarily steering the ship anymore, right? You're kind of stepping back, standing next to them, helping support them with this group of people that wants to also really see them succeed. They don't go home with us, they are home. Yeah. Right? So we want to make sure that we're supporting them all the time, giving them their best life possible, and helping them be successful because when they're successful, we're successful.

SPEAKER_02 29:16

And for a lot of families, it's interesting if you know, a parent and a child or a sibling and a child had conflict in the family home. Oh, yeah, and then they move out and they have their own place, it's like that conflict just kind of dissipates. And they enjoy one another. They can have a just a wholesome relationship. That's not about giving directions and being irritated that following directions. It it really changes a lot of people's relationships.

How Family Roles Change

SPEAKER_03 29:42

It's so exhausting for parents, especially as they as they increase in age to be providing, especially if your loved one needs a lot of care. It's it's tiring, it's exhausting. And you are mentally drained, you're physically drained, you're emotionally drained. It's a it's a weight that gets lifted. At least that's what we see as providers. Yes. Um, looking at, you know, families who have transitioned. And I have multiple families now that I ask them to call one another. Like if I have a new family coming in, I'll please call this person. Yes. Please call this person. We did it with their son, and and we don't always get it right. But you know, everybody is working together in such a different dynamic than a school system, that it really can be a beautiful thing. Yeah.

The Emotional Impact on Families

SPEAKER_00 30:28

Well, the uh one of the things that I've heard expressed in different ways, but the common theme uh has been in in in various different conversations with parents is that you know, as a parent, you want your kid to live forever. But if you're the caregiver and the parent for an aging special needs individual and you are aging, um it sounds morbid, but you want you the thought goes into your head, I've got to live longer than they do. Um, so it seems like what you're doing is hopefully providing a relief valve for that.

Every Parent Thinks This… (Fear of the Future)

SPEAKER_03 31:09

Yeah. And at CCRC, I mean, I'm not certain about BARC, but we do provide lifelong care. Um, we are an organization who over the, you know, uh we've been around for almost 75 years. So some of our folks are not spring chickens anymore. So we've been providing hospice care in our homes. We literally will do continuum. Um we don't want people to not be able to live their life in their or live out their life in

Lifelong Care & Aging in Place

SPEAKER_03 31:35

their homes.

SPEAKER_02 31:35

Aging in place is really important. And so many years back, probably 15 or more years ago, um, BARC purchased and renovated a house to be accessible, to be able to have lifts, ceiling lifts. Um, since then we've learned you can do that very easily at most houses, um, as long as you've got adequate doorway, yeah, widths, and you know, those sorts of things. Um, we want people to age in place. We want this to be their forever home. And we do have families that come pick their loved one up. I'm bringing them to Thanksgiving at my house, and the family will say, Oh, I'm bringing him home. He's ready to go home. Like that's the home. The group home is their home. Um, and they acknowledge that that's part of their family now. Those housemates aren't housemates, that's their family. Um, it's a really, really great

What “Home” Really Means in Adult Services

SPEAKER_02 32:26

thing to see.

SPEAKER_03 32:26

Yeah, and even at those end-of-life stages, you know, they all go through it together. Everyone else who's living in the house, they understand what's happening. There's this intimacy about it that it's beautiful. It is beautiful. Like I really do as an organization, we pride ourselves on being able to help people through that, even families at that stage. Um, because it's hard. You know, it's hard whether it's our own loved one or someone we've been supporting for the past 20 years. Yeah.

SPEAKER_00 32:59

The uh one of the th I re let me start again. My most recent podcast actually featured my wife, and we were talking about a lot of these things, and the um her sentiment or her biggest concern, I I tend to be more focused on the practicality of um, because of course I'm in wealth management. I want to make sure that he's funded for the rest of his life as much as humanly possible. Her take on it is on Christmas morning when we're not around, or on Valentine's Day, he you know, that he's getting a card, that he's getting some presents. And her immediate, my thought is practicality, her thought is she wants him to feel loved. And how do you make sure you're covering both of those with the support services that your organizations provide?

How Love & Care Are Maintained

SPEAKER_02 33:57

I mean, I really do think our staff, we have to stop them sometimes from doing things above and beyond. You know, stop buying things for the folks that live in this house. You know, that's something you shouldn't be doing. You don't make enough money to be purchasing gifts for the folks in the home. Um, you know, the staff really, really do care. Um, but we also have things set up that it's it's a given that, you know, we're going shopping, we've got gifts for Christmas morning, we're planning a fancy Christmas dinner. That's something that the the houses coordinate. Um, we had one house this year that said, oh, we're gonna cater Thanksgiving, that's what we feel like doing. They all individualize it and and make it be what that person values. So um that's that's how I think I know our staff really care for our individuals. Um and then we also have them connect with each other. We have folks that will be reaching out to each other, making holiday plans. Um, you know, they might one person might attend our day program, another lives in our house house, and they're fast friends and they support each other.

Real-Life Example (85th Birthday Celebration)

SPEAKER_03 35:01

And just this weekend, actually, I was out at the grocery store and I my phone is blowing up and I look down, and one of our folks is celebrating her 85th birthday in one of our group homes. And she is dressed to the nine, she's got a crown on, there is a photo backdrop for like selfies, her housemates are dancing in the kitchen, there's decorations, and that's just what that that team did. Like they all out, managers in on a Saturday, celebrating this person.

SPEAKER_02 35:28

Some of our folks have said, Oh, it's it's my big six-o. I'm renting a hall and inviting everyone I know. So I whatever works for people to, you know, there are other people that are just leave me alone. Let me quietly let me quietly celebrate this this holiday.

SPEAKER_03 35:44

No, but we definitely like, yeah. We took a bus. We weren't, we charted a coach bus. Well, I didn't. It was their idea. It was their idea. I just, you know, wrote the check for it. Um, but they charted a coach bus. There were three houses all down to the giant mall in New Jersey before Christmas. They spent the entire day together. ADA bus with the bathrooms, the Wi-Fi, and they went and they Christmas shopped and enjoyed the mall and just spent time out into the community. And it was that's the stuff they come up with.

Building Community & Meaningful Experiences

SPEAKER_00 36:18

So let's talk a little bit about the process the families go through. Um, and I don't want to ignore the the proverbial elephant in the room that seems to always come up with conversations in the educational setting, and it's gonna come up in conversations in adulthood, and that's the cost and who's bearing those costs. So, case managers are important. Uh, and if we can for a minute just assume that maybe some of the our listeners have seven-year-olds and they don't know what a case manager is at this point. So, can you explain the role of a case manager, how how these things are paid for within your organizations, and uh how as families we can be supportive of that process?

Understanding Costs & Who Pays

SPEAKER_02 37:02

You

What is a Case Manager? (Explained Clearly)

SPEAKER_02 37:03

want to start with the role of the case manager, and I'll go into the level of need and funding.

SPEAKER_03 37:07

Oh, sure. Um, so yes, establishing a DDS case manager, you know, getting your loved one on the DDS waiver services, the home and community-based waiver services is imperative. Um you can make the decision to private pay for some organizations. Avant and I were just having this conversation the other day, but it's it's very costly. Um, so really lining yourself up with DDS as early as possible, making sure that they get on the waiver services and getting a case manager assigned. There are years where that can be challenging for new grads. Um, whether there be a lull in case management, whether there be changes happening within the Department of Developmental Services, there can be a break or a delay. But the earlier you can get an assigned case manager, the better. The earlier you can get them at the table, the better. They can help you navigate the funding options available for your loved one. Um, you know, DDS has the PRAP team, which is the planning resource and allocation team who assign the funding for the new grads. Um, and that's day funding, employment funding, in-home support funding, personal support funding, transportation, residential funding, that's all of it. Um but developing that relationship with your case manager, knowing the organizations and working through that IP, which then gets us to the level of need

How Funding is Determined (Level of Need)

SPEAKER_03 38:29

tool.

SPEAKER_02 38:29

So the level of need is an assessment tool that the case manager would be completing with the whole team at least a year before a student graduates. Um at the end, there is some magical formula that comes up with a number between one and eight. You will have a residential score and a day score based on what goes into this algorithm that they have on the computer. We're still trying to figure out. We don't understand it fully.

SPEAKER_00 39:00

Our son has a number in the case. Yes, so there's a number.

SPEAKER_02 39:04

Um, and a big thing for me is I always tell families make sure you are completing that lawn accurately. Realistic life experiences, not an ideal world. No, so one example is if it asks the question of does your child independently select appropriate clothing for the weather? And you, oh yeah, independent. Um, but it's because you've packed away their winter clothes or you hang their raincoat on the door before they leave for the day. Um, that's not an accurate reflection of what your child would do if you weren't there taking all those steps. Um so it really is important to not sugarcoat. Sometimes you're like, I want to give them credit, you know. One time they picked the right clothes, you know. You really have to say what is their baseline of um performance on each of the tasks. Um and there is an ability to have funding. Well, to go back, every person's funding is tied to their lawn score. The higher your lawn score, the more funding you have. Yeah. Um, if a team feels someone needs more funding than what is available, let's say because they need a one-to-one and that costs more money, you would have to go to a DDS group, utilization resource review, and argue the case to get additional funds added for that person. Um, which is, as we talked about earlier, challenging. So if the lawn can accurately reflect a person, that's that's really important. The other thing the lawn does is um let's say someone has a lawn of three and they're graduating, and the whole team is like, yeah, they're they're looking for recreation leisure. They are not a worker, they don't have the motivation or the skills or the interest. DDS is gonna have concerns about someone with such a low lawn score not working. Um, so we want to make sure that lawn really is a snapshot of who the person is.

How Services Are Structured & Funded

SPEAKER_03 41:08

And depending upon the service you're looking at, you know, we talk about the lawn equating to your funding, each service has a different level of funding. So, you know, what we get for a lawn three in an employment program is different than what we might get in a lawn three residentially, right? Everything is structured very differently. Um, Yvonne talked about the fact that you can go to URR, the Utilization Resource Review Committee, to request additional funding if you and if you don't get it, families do have the option to advocate further and do a par with DDS, which not all families know about. Please don't ask me what it stands for. Programmatic administrative review. It's been a while since we had to do one. Um, but that is another area and they would go and advocate. I think it's with the typically it's with the regional director first of DDS, and then whether or not that goes well or not, I can go up to central office.

What “Graduation” Really Means

SPEAKER_00 42:02

There's a lot there. Um, and there's a lot to uh to kind of keep track of as a family in trying to navigate this. Um so you both mentioned graduating. So I assume by graduating, it's not always what we would think of as a high school graduation, but they're aging out of the domain of the school system. So they're hitting that 22, 23, depending on a birthday, is that which absolutely um I'm excited to learn more about the exciting things that both of you are doing in your organizations. Um, you know, I I explored your websites and I'm like, wow, there are there's such robust programming that that both organizations are involved with. And one of the things as a parent of a special needs child who may or may not be capable of working is you still want them to have fulfillment in their lives. So I just have to compliment you both to begin with, that it looks like there's just such depth within your organizations to address individuals in different places. And and I probably say this cliche in almost every podcast, but for me, it's it the the saying if you've met one kid with autism, you've met one kid or person with autism, and they're all over the place. So could you brag a little bit for us and tell us um a little bit more detail of what your organizations are getting at and the exciting things that you're

Programs & Opportunities (BARC Overview)

SPEAKER_00 43:32

doing now?

SPEAKER_02 43:32

Sure. So BARC started with our location on Jerome Avenue. It was a little red schoolhouse. It has expanded greatly since then. Um that was a red school. That was a little red schoolhouse way back. Um so at that location, we have most of our group supported employment programs. Um I think BARC is a little unique in that we run businesses as our group supported employment. We have a restaurant at Jerome Avenue, the Hidden Cafe, aptly named because we are in a residential neighborhood, and unless you know we're there, you're not going to find us. The Hidden Cafe, we have individuals who work there learn waitressing skills, food prep skills, you know, they're doing all these sorts of jobs, and it's um integrated with the community. We have very loyal clientele who love our lunches. Um, we also have the greenhouse at that location, and that's another exciting area. That original building was put up in 1977, so it's showing its age, and through some fundraising with um BBK and the Broadview group, they've made it possible for us to replace that. So before summer, we will have a new greenhouse, and we're really excited about that. We also have yard service based out of JeromeV, supported employment, which is supporting people out in the community, and brand new training programs. Um that is where we're taking people going through a curriculum, practicing soft skills and hard skills, and we have practice modules for hospitality, um, for manufacturing, for retail. We're going to be setting one up for food service so people can actually practice the skills and demonstrate competency. Um, so that's our original site at Jerome AV. Um, Lake Ave houses two large DSO programs, um which are recreation. I know we use all the acronyms and we forget nobody knows what they stand for. So day support options is what it stands for in DDS World for us. We know it's a recreation leisure program. It's where you're going to have fun, to engage, to do meaningful things. Um, so at that location, we have the unique situation of having an RN and an LPN on staff. So we support a lot of folks who are medically complex, and that's unique. Um, North Main Street is our newest location. We renovated the entire fifth floor of a building on North Main Street. We moved all of our admin offices and a number of our DSO programs to that location. As a part of that move, we also developed an additional DSO program called RISE, and it's geared towards people with autism and other sensory needs. It's a much smaller setting. We have a lot more of the sensory considerations in place. Um, and then we are developing a new cafe on the first floor of that same building, which everybody in the building and all adjoining buildings we're hearing are very excited to have access to our cafe, which we plan to then operate kiosks out of where we can go bring the food to people. Um so we're really excited about that. Um, and then we do support 42 people residentially, and we run a recreation program with monthly dances. Every week we have bingo and we have baking. Bingo's a big deal for folks. Um, so there's a lot of lot of fun opportunities to be had.

Programs & Opportunities (CCARC Overview)

SPEAKER_04 47:01

Wow.

SPEAKER_03 47:02

And at CCRC, so we have our primary location on Slater Road in New Britain. There we have five of those leisure and recreation bill or um programs, so five DSO programs are run under there, as well as a new program that we've developed kind of similar to your rise, but ours is called Shift, and it's for those too early to graduate students but not quite ready for adult services. Um, really looking at that shift from childhood to adulthood. We recently bought our building, our Hess Center building, which is on Chamberlain Ave, and out of there runs one DSO program very out into the community, um volunteer sites, as well as our group supported employment. So similarly, we have multiple job sites that we go out and work at during the day. And most exciting is our transition program. So at CCRC over the past couple of years, we not only developed a project search site, which is a nation or national internship site for folks with IDD. We have a site at the Hospital Central, Connecticut, where interns go into the hospital, work through a curriculum, and work through various departments within the hospital with the goal of getting hired at the end of the internship program. This is our third year at the hospital for our project search curriculum. And we have also developed a manufacturing internship site. We have four sites that our internship cycles through. I think it's a three-month basis. Does that sound about right? Yeah, I think so. I think it's four sites, might be three. Um, very similarly, going, working, uh, learning all the skills at each of the internship sites with the hope to get full-time work at the end of it. We have since already gotten two people hired full-time at the internships, which is amazing. And we have an art internship program. So full art curriculum based on helping somebody develop a microenterprise at the end of their internship program. In addition to the art internship, we have art classes throughout all of our DSOs. So we have that art element and have at CCRC for many years within those programs. Residentially, we have 12 programs out in the community that are 24-7, so similar to Avon in that sense. Um, we recently opened up supportive housing, so we have a supportive housing program in New Britain and the old Whirlpool building, where out of 154 apartments, we support 12 separate apartments in that building. We have staff on site 24-7. They live independently in the community amongst their peers. Um, that is one of the best programs we've ever developed. I had so much fun really working with those folks. And we transitioned a lot of them from our group home. So we took people who were ready for that level of independence and helped them become successful in their own environments. That program is almost celebrating a year now, so we we do have to schedule. Thank you. I couldn't believe it when I realized it the other day. Um, we have signed on for another program that we'll be developing similarly in Cromwell with a different realtor. And we are currently working on a transition house. So the goal for that home is it is a six-unit home, individual apartments that make up one location. So it'll be licensed like a group home, however, tiny apartments in each to help people work on the skills that they need for a period of time before they transition to supportive housing. Because the one thing we found when we did transition, folks, is that although most were successful, one was not. And it does take a lot of training up front when you're working to get somebody to live independently, which is hard to do in a group home. You can work on skills, you can do all of the things, but until someone's in their own independent environment, you really don't have a clue how they're gonna respond. Um, so we are super excited about that program, not only for the aging up and hopefully increasing independence, but our other thought process is coming down the continuum as well. So folks who were living independently, who are aging, need a little more support, who need more support or more supervision, but not quite ready for living in a group home can come back down that can that continuum as well. So we really can provide that lifelong care that we've been discussing.

Mid-Episode Break

SPEAKER_00 51:26

So I have some more questions, but before we get to those, we're just gonna take a quick break and we'll be back in a moment with Lisa and Yvonne, and we appreciate your time.

SPEAKER_01 51:36

Support for remarkable futures comes from Able Planning, helping families navigate the financial future of loved ones with special needs through personalized planning, guidance, and long-term strategies. Learn more at AblePlanning.com.

Returning to the Conversation

SPEAKER_00 51:52

Welcome back, Lisa and Yvonne. We're um going to continue the conversation, and and part of the conversation that we've had so far has led me to a little bit of curiosity on a couple things that are off topic, um, but perhaps on topic to a degree. Uh one is uh if you have that individual that successfully transitions and is working in a manufacturing environment or a food service environment, are they earning a living wage and how is that integrating into them potentially being in a group setting uh residentially?

Employment & Wages in Adult Services

SPEAKER_03 52:30

So in a transition program or in an internship program, they would not be earning. Um, if they get employment placement, then yes, they would start earning at whatever they are hired at. Typically, all of our folks make minimum wage or more, depending upon the environment. That does roll into their benefits and it will impact their benefits. However, when it comes to adult funding sources, I think, especially when we're talking residential placements, families need to understand that there's there's two avenues. So there's DDS funding that provides the dollars for all of your loved ones' staffing supports, whether that be residential staffing supports or day program, employment program, DDS funds that. DSS comes into play. Now, obviously, some people receive cash benefits from DSS if their social security benefits are not high enough. Um, but DSS also covers and establishes room and board rates for anybody in a 24-7 residential environment. Um, I shouldn't say that. CLAs, not CLAs. Yep. But each of uh each of our established CLAs has a set and identified room and board rate that DSS determines for us. It takes into account what the individual's rent portion would be their food, uh the utilities of the home, and then there's a little bit of dollars in there for like home improvements and that sort of piece.

Benefits, Income Limits & Financial Reality

SPEAKER_03 54:00

When an individual moves into a group home, the state, whether it be Social Security or DSS, will ensure that they have at least the amount of funding to cover their room and board rate plus 300 person. Yeah, like a personal allowance amount, which is like $375 or $372, um, to make sure that they have money to go out, you know, get their personal care items, go out to eat, whatever it might be. Now, some folks get a lot more than that. Some folks only get that. And how that works out, I don't really know. Um, sometimes it does depend upon like death benefits. If an individual's parents have passed, I know that can increase it. But anyone within our waiver services has to be maintained at no more than sixteen hundred dollars in their bank account at any given time for the most part. There are a handful or a category of people who can have up to 2,000, but most people are in that sixteen hundred dollar range, so it is a balance to kind of navigate the world of benefits.

SPEAKER_02 55:03

And it's challenging when you could have people living in a house together and one just squeaks by just enough to get what they need, and another is routinely over their sixteen hundred dollar balance and having to do a spend down. Um, the employment aspect of it, if a person has a job, their social security benefits would adjust accordingly. Yes. If it was enough of an earning of a wage earned to impact um the benefits they receive.

ABLE Accounts & Special Needs Trusts

SPEAKER_00 55:29

And this is likely a topic of a future podcast, but are you seeing families utilize Able accounts to help alleviate some of that pressure?

SPEAKER_02 55:38

We've been trying to educate some families about it. We have not had a lot of folks using them. We have had special needs trusts come into play. I don't know if you've had more experience with Able accounts. We haven't had a bunch.

SPEAKER_03 55:53

I have experience putting money into them. Um, you know, our finance team does. I think we have two folks, maybe three now. So it's not many, again, um, that do put some of their spend down funds into Able accounts. Um, but past that, that is all that we do as organizations. Like we are representative payee for most of the folks that we support at CCRC. So we manage all of their finances, all of their benefits. So all we do is really write the check for the family to the Able account. We will not touch the Able account, we have nothing to do with the management of it. Um, we will fund it, however. And then it's up to the family to determine how they are going to spend it for their loved one or on their loved one.

SPEAKER_02 56:33

And that's that note of being representative pay, I would think, from your financial background, would be interesting to you. Um, it is uh a step that some people are hesitant about or worried about, but it is pretty standard um issue as far as as what we do. Um and it can change over time. Someone's representative payee can change. Um, but typically if the agency that's supporting them is their representative payee, then we know bills are gonna get paid, nothing's gonna slip through the cracks.

SPEAKER_03 57:06

Um, and that really is and for us, it's a lot of their their benefits are gonna be maintained. They get kicked off of the Medicaid waiver, even for a short period of time, we don't get the funding. So we're still providing the supports, but we can't bill for their services, and it throws all of their life systems out of whack. So, I mean, that's primarily the role I think why most of us encourage our families to look at us as representative phase.

Relationships & Dating in Adult Services

SPEAKER_00 57:33

Um, now this is gonna be a little off topic, so we may wind up editing it out completely, but um, my son um has expressed um feelings of affection for over different periods of time for different young ladies that he's come in contact with in his uh group settings. And I'm curious if you could two could comment on romances that may take place in and how you deal with that in an appropriate way that is fulfilling for the individuals, yet at the same time is keeping them uh appropriately safe.

SPEAKER_02 58:11

So a lot of the folks we support that have affections for each other, it's platonic. A lot of the folks that we're experiencing it with. You know, they want to dance together at the dance, they want to send each other Valentine's cards, they want to hug, maybe give a little kiss, you know. Um not super duper physical um realm here. But there is DDS has a healthy relationship series that they provide that people can receive training on what a healthy relationship is, what it looks like, what it doesn't look like, you know, who you have what kind of interactions with. It's a really great resource. Um, and I know they were doing it only as group, but I think they've started doing individualized sessions as well if needed. Yes. Um, so we always tell people that's a great thing to do. I think all of the folks we support residentially at some point have participated. Um, not so for our day programs, but you know, we we bring it up and and encourage it whenever we can because people are human and they have rights to have relationships

Supporting Healthy Relationships

SPEAKER_02 59:17

and be loved.

SPEAKER_03 59:17

It is completely a normal and natural thing, and I would agree most of the the instances I've come across over the years has been that platonic like companionship. Um now that I have supportive housing, I am starting to get into the other realm and it's so scary. Um we were talking, I was talking to one of my nurses last week about it because we have somebody who is very well educated. She is she is ready for the next steps in this relationship, and we've done all we can to prepare them. It doesn't stop us from going, oh my god, no, please don't. Um, because you you feel like that family member, right? Like I have a 60, almost 16-year-old daughter, so I kind of feel like it's the same instance. Like, I'm I want you to have all the things you want in the world, but you still have that that fear and that hesitation. Uh supportive housing has taught me that we have to learn to let go sometimes. Um and as long as you've educated

Independence vs Protection (Letting Go)

SPEAKER_03 1:00:20

them, I mean, that's really what it comes down to.

SPEAKER_02 1:00:24

Two people we support that used to be, they would say married, but I do have a married couple, actually. The woman's um father at the time said, Oh no, no, they're not getting married. So they had a commitment ceremony. She wore her wedding gown. In their mind, they're married.

SPEAKER_04 1:00:38

Yeah.

SPEAKER_02 1:00:39

Um, and they were married for years and lived together, and then that kind of fell apart. Um, so now we're we're navigating that because she still, you know, wants to send him a card every holiday and do all these things. And meanwhile, he's had another girlfriend already. And you know, so we are always navigating those things.

SPEAKER_00 1:00:58

Everyone can break their heart.

SPEAKER_03 1:01:01

And you also there's that protective level too, like, especially as they have higher levels of independence, you worry that they are not being taken advantage of, right? So I think that's where that protection comes in from the top housing perspective. Like, who is this person? Are are they okay? Like, do you how we've seen them?

SPEAKER_02 1:01:20

Like it it's that we have someone that we support only at day program who has come in and you know, shared little snippets of things that we then have to highlight to his family who aren't necessarily in the house with him, saying, Hey, I think this there might be someone taking advantage, saying, I need 500 bucks, I need this, I need, and you know, that's a concern.

Risks & Safety Concerns

SPEAKER_03 1:01:39

Yeah, it's this dance of wanting them to have that that real life independence that we all have, and also making sure that they stay safe and no, yeah, that keeps me up at night.

SPEAKER_00 1:01:51

Well, you know, switch topics a little bit. Um, my sense from being a parent of a special needs child and talking with other parents of special needs children is that one of the instincts that is probably hardest for us to let go of is to take a deep breath and realize we don't have to fight all the time. And there are certainly moments during his educational journey where we felt like we had to fight for him to get appropriate levels of support. Uh and you know, I think we bring that mindset to the table probably longer than we should in terms of you know the journey that our our kids go through. And and perhaps sometimes in inappropriate settings where we shouldn't be battling with somebody that's trying to help us. Um but I I wonder if you could touch on you know recommendations or um a framework that families should have in mind when they're engaging in adult services that perhaps they can let go of

Letting Go of the “Fight” Mindset

SPEAKER_00 1:03:08

some of that.

Person-Centered Planning vs IEPs

SPEAKER_02 1:03:10

I think a big difference is, you know, the the IEP in school, it's supposed to be individualized, right? But it still all feels very boilerplate. I have to say these words, I have to use this language. Um when you become an adult, you have a person-centered plan. And there's literally section by section, what's what do you want us to know about you, what leads to your good life, what is not involved in having a good life? It's literally a group of people sitting around the table with the person being supported, hopefully answering those questions. If they don't have the ability to answer the questions, then we're taking input from other team members to say, you know, including I yeah, I I believe this is um important to them. I believe, you know, having access to their friends and family is part of what leads them to a good life. And you are literally developing the plan together. Um, you are a support system, and it really shouldn't feel antagonistic. Um, and if it does at any time, I feel like that's where the case manager's role is to facilitate. That is, you know, that's part of what they're they're doing. If if um between day program, residential, the family, maybe people have different viewpoints, that's fine. We just need to facilitate a conversation where we can come to a decision together.

SPEAKER_03 1:04:31

Yeah, no, it's true. And I even hate to have it to get to that facilitation standpoint. Like I really want our families to feel like they are partners. Like we are we are all on this together. This your loved one is not going to be successful if I'm not on the same page as you and you are not on the same page as I. Um, we like I said, we all want the same thing, right? Their success breeds our success. We want to make sure that kind of keeps going. But there are times as agencies we mess up. Any agency can make a mistake, any staff can make a mistake. I think that is the most important piece of a relationship with a family is what an organization does when that mistake occurs. And it and it could just be something very small, right? It doesn't even have to be a large thing. You can't lose the trust that you have in one another. Um, so having the hard conversations without fighting, yeah. Like without being that adversarial piece. Like you don't have to fight, you shouldn't have to feel like you fight for your loved ones' supports anymore. As agencies, we should be showing up for them. And we ask the same of you know our families from that perspective.

SPEAKER_00 1:05:43

As somebody who went through some fighting, that sounds so wonderful. Uh I uh grew up in the era of watching David Letterman in college at night, and David Letterman would close out many of his programs with top ten lists. Uh, not going to do a top ten list, but maybe a top three or four lists of takeaways that if you could um bend the ear of somebody going through this process where their child is quote unquote graduated and is now going to adult services, the the top three or four things that you would tell them to think about. And because you may have some overlap, we'll have you do one and then you do one until we get to four.

SPEAKER_03 1:06:27

Um I think my first one, most importantly, would be find find your people. You know, really spend the time in looking for the organization that you feel would be best supportive for your loved one, um, however that looks for you. You know, whether we may mention before going, spending time there, volunteering, getting a sense of how they interact with people, how your loved one responds to them, and how they show up for you in a variety of different ways. I think that you need to have that partnership and you can't have that with people you don't feel comfortable with.

SPEAKER_02 1:07:01

So that's probably one of the biggest ones for me. I would say being prepared to step back. And as a parent myself, um, you know, we start doing it and saying, you know, why don't you call and make that doctor's appointment? You know, um, what what do you have on this calendar for this week? You know, starting to assign more responsibility to our kids. And that's something that's important to do with our folks with disabilities as well. Um, you know, they can start stepping up and we can start stepping back. And I think that's an important um thing to consciously do.

SPEAKER_03 1:07:35

Yeah, and on that, that celebration of the adulthood. Like, please don't look at it as a cliff. Not for your loved ones' sake, not for your sake. You know, really start to look at once they become 20, what can we start doing? You know, you're you're gonna be going off to to college, quote unquote, soon, right? Like, what are the pieces that we can start developing? Have the school system work on that with you. Adulthood opens up so many different possibilities for them that it really should be a celebration, not as stressful as it can be.

SPEAKER_02 1:08:08

And that ties to your thing about finding your people. Yeah, you could attend uh a dance from a recreation program supported by a particular agency, and give that familiarity, that level of, oh, I see how folks are interacting. I see the the I feel what it feels like in this room. It's a feel, it's totally a feel.

SPEAKER_03 1:08:30

I think that's like yeah, yeah.

SPEAKER_00 1:08:34

Well, I think we've uh hopefully imparted some hopeful uh messages to the to our listeners and viewers. Um, I want to thank you both so much for taking the time today to to meet with us and to do this podcast. And um, for those of you watching, uh I've been reminded by our producer to remind you to like and sub uh like and subscribe, so please do so. Um the more people that uh find these these episodes, I think the more people that we can help. And uh let's face it, the realities of the algorithms of the internet um are out there. So when things are shared and subscribed to, they get more visibility. So um thank you for viewing and and thank you both for coming in.

SPEAKER_01 1:09:18

Thank you. Thank you for having us. If today's conversation helped you, please like this video so more families can find it. Subscribe so you don't miss the next episode of Remarkable Futures. And if this topic connects with your story, share your thoughts in the comments. We'd love to hear from you. Because here, your story matters. We'll see you next time.