Patrick Cadigan: 0:00

Transitioning from high school to post secondary life is an exciting and challenging time for any family. But for families of students with disabilities, this journey can feel like navigating uncharted waters. From exploring different post secondary options to understanding available resources and support services, there's a lot to consider. It's a lot of information. And trying to do it all at once can feel very consuming. So we're here to get that conversation going. Welcome, this is the Post Secondary Transition podcast where we have conversations around the ins and outs and everything in between the transition process for families of students with disabilities. I'm one of the hosts, my name is Patrick Cadigan. I do have a co host, and who would that be?

Meghan Smallwood: 0:42

My name is Meghan Smallwood, and I'm a public school transition coordinator.

Patrick Cadigan: 0:45

All right, and this week, we will finish off our parent interview with Ms. Jane Plapinger. For those who tuned into the first part of our discussion, Jane talked about her son, David and their experiences with the transition process. We're back to continue that conversation, which is already in progress.

Meghan Smallwood: 1:02

So, obviously we know residential is part of the vision. But in terms of his day, what was the vision for David? Was it employment, were you looking for him to work?

Jane Plapinger: 1:13

Yes, our vision was for him to participated in integrated employment, and structured work social and recreational activities. We never saw him as working many, many hours a week. But he had a job when he was at school, his last two years in the community supported by a job coach. He was a production worker, one with a company, and he loved it. And he worked four and a half to five hours a day, and would fall asleep. On the way back to school, because the effort it took him to pay attention and stay on task for four to five hours was enormous. But he loved working. Every weekend, I see him he tells me he misses his co workers. So we definitely want it maybe, you know, like two afternoons a week or something of employment as part of his life.

Meghan Smallwood: 2:16

So, I know he's transitioned and exited from school system. How's it been going?

Jane Plapinger: 2:22

It's been going pretty well, so far. Fingers crossed, because I thought, so this is another thing that surprised me. I thought once I found the placements, and we actually moved him July 1, I could exhale, and it would be like, okay, he's transition well, I think is like an exam. Because he didn't have a place to live, he had a program to go to every day that I think it was a really good fit for him. He seems really happy. He's much closer to family than he was when he was in the residential school, which is wonderful. However, now we're in the next phase of the transition, which is building a new adult life for him. He's in a totally different community. He's living in a house with new housemates staff are totally different. He's going to a day program that's community based, so and he's learning all these new places in the community, and looking for recreational and social activities. For evenings and weekends for him. I'm in the process of transitioning all his medical providers, health care providers, it's that it's a lie. And and I'm speaking a lot to the residential piece. If he was only going from school, to meaningful based services in the same community, a lot of building this new life would not need to happen. Some would, but not...

Meghan Smallwood: 3:57

Yeah, I think still, though, I know a lot of parents kind of wait until, you know, 21 or so if they can to start thinking about that health care piece and switching over to you know, more adult physicians, because they've kind of done their time with the pediatrician side. So it does ultimately have to happen, maybe not switching communities, but it is important, too.

Jane Plapinger: 4:20

Yeah, well we had to switch all healthcare providers because he was living several hours away from his new community. So he's, he's not near any of those providers separate on the adult child issue.

Meghan Smallwood: 4:37

So now his, the big question is, is his residential, the same provider as his day program?

Jane Plapinger: 4:44

No. And Silly me, silly me for for wondering, which was better. Getting both of those services from one agency versus two because it turns out I don't have any choice. It doesn't matter. And after awhile I realized I just had to find a residential setting that worked for him. And it turned out the residential setting we found was with an agency that did not have meaningful day services in that part of the state. So we had to find a separate agency to for the day services. And it's, it's actually worked out really well. As someone said to me, way back when I was in talking to any parent I could about this, this parent said, well, one of the advantages of two separate agencies is you have more sets of eyes, on your on your child. And that's always a good thing, especially if it's a like my son is at risk of not being able to protect totally protect himself in situations. So knowing there's different sets of eyes on him. And also, his life is richer, because there's two little villages that are supporting him now, instead of one. But interestingly, I also spoke to a parent who said to me, I thought it would be simpler and more streamlined for my son to be getting residential and meaningful day services from the same agency. But the reality is that the residential and the day service, people don't talk to each other. So it's almost as if it is two separate agencies anyway. So every agency is different. But it's working out really well. For us, we had, one of the pieces of advice I would give parents is to be flexible, and be willing to problem solve and be willing to be open minded. Because we had to do that we had everything set up. And I learned that the day program that David was going to, unlike most day programs, does not own vans does not provide transportation, DDA expects day programs to be responsible for transportation, but they are not required to physically transport people. And when I was talking to the admissions director of the agency, whose group home David was going to move into, she said, she whispered to me, don't worry, we will take care of it. The group home staff will take him to his program. Well, then we had the formal meeting to write up the, the PCP and the admissions director wasn't there, there was a higher level person from the residential provider, when transportation came up. And I turned to that person and said, I understand your agency will probably transportation, they say, Oh, we don't do that. That's the day programs responsibility. So I was worried that the day program was going to fall apart, that placement was going to fall apart. Because David's not able to independently manage public transportation. However, we problem solved about it. And he's going by Metro access, and door to door by himself. When he got an phone as a graduation present, we put a tracking thing on it. Calls me way too many times a day, although it went down on the first day was about 40 times. And now we're down to less than five a day. But he is getting himself to his program, from his group home and back every day, through Metro access on his own, and I really wasn't open to that. And I had to, I had to open my mind and just manage my anxiety and say, give him a chance to make this work. Give him a chance to be okay, riding in a car by himself with just a driver.

Meghan Smallwood: 8:53

I love that. I love that story. And I love that you stepped out of your comfort zone and gave it a chance. Because I know it's scary, but he did

Patrick Cadigan: 9:00

it. That came up. And one of the recent discussions that we had, where the person that we were talking with had said sometimes parents have to go, you know, outside of their comfort zone which can be really really challenging. So, yeah, it it comes up quite a bit.

Jane Plapinger: 9:18

And there's and it's not, you know, nothing is perfect. And I I've adopted the philosophy. Things just need to be good enough. They don't need to be perfect. Two weeks ago, it took him two hours to get to his date. He said of a half an hour he was in the car for two hours. So he survived it. He missed the Mother's Day Program. He probably learned something which is that sometimes things go wrong. And that's kind of a good lesson for all of us to be reminded of once in awhile.

Meghan Smallwood: 9:51

Gonna say I can think of some commutes where I got stuck in traffic for over an hour or so and it wasn't a perfect day but got through it and, you know, the next day was better. So that is a life lesson for sure.

Jane Plapinger: 10:03

The other thing that we were flexible about is how we thought about housemates, for David. As a parent, you get this vision and you want things to be ideal. And agencies will talk about how when they create a new home, they will match people, they create a house of peers, where people might have similar interests or whatever, that was not going to happen. For date, agencies opening new homes, happens at a timeline that was much more unpredictable than we could handle, given more July one, dropped dead in a day, we found a home where there just happened to be a vacancy. The question was, would this be a good environment for for him, the three gentlemen already living in this home are very different than David, they need much more intensive supports, than he does. They are not verbal. And David is very social, and so on. So that was another kind of moment where we were like, Oh, this might not be at all good, because we were very focused on this idealized vision of him being part of a house that got put together, taking into account who he is, and who would be good housemates for him. And then we thought about it, and we say, well, at his residential school, most of his housemates have been nonverbal, and not very social, either. And I don't mean just nonverbal, I mean, not, not interested in communicating. Not, I don't mean that in a negative way, kind of to themselves, very much. And he's very much out there. However, we then realized that the people he likes to interact with are adults. And it's the staff. And those are the most important people in his life. And because his three housemates need very intensive support. There's always three staff in this home. And when they met him, and we went on a visit there, they were totally charmed by him, because he would bring some noise into the house. Some a different vibe than the others, and he has the opportunity to help out the others and do things for them, that they can't do for themselves. Like I was told he takes the hand of one of them leads him to the dinner table. So that was just another moment where we really had to reevaluate what was in our mind about what he could handle, what would be good for him was kind of like the transportation issue. It was one of these things where we, we really changed our our thinking about it. And it's worked out great. And speaking about staff, in response to your earlier question, Patrick, trying to assess the quality of staffing at an agency was one of my main areas of focus. When I was checking out a provider, it was really hard to do.

Patrick Cadigan: 13:18

Ya, I'll bet.

Jane Plapinger: 13:20

Everybody is different. But my son is happiness is directly proportional to the quality of the staff because he's social, and he craves engagement. He wants to talk to people, he wants attention from people, he wants to joke around with people he wants to help. And we had four and a half years of mixed experiences at the group home that David lived in, when he was in the residential school, we have some staff who were wonderful with him and engaged with him. And then we had others who did it we saw that it had on his life.

Patrick Cadigan: 13:59

That's something that's come up before as someone for myself, you know, Meghan has been in this transition environment for such a long time. So I always kind of throw out that I am the surrogate in the experience. In the conversations that we've had, both in person and online, a lot of times, it's always been interesting to me, where one family's experience with an agency can be vastly different than another family's experience with the same agency. And it, this whole process is so individualized, that it really just depends on the experience. So I as someone coming on the outside and trying to communicate to those people on the inside. I have had more than several times to say, "Okay, if this is something that you're hearing from someone else, just keep in mind that it might be a different experience for you, personally, based on your needs and the things that you've experienced, so..."

Jane Plapinger: 15:05

You make a really good point, when I talked to other families who were ahead of me and already had their kids in a residential setting, I would learn as much as possible about their child, because of exactly what you're saying. This one mom, she described a provider, and she told me things that were going on in her son's house, and I said to myself,"Oh, my God, I would not want my child there." And it was working for her, I was great, that it worked for her. So even when you talk to other families, you have to, like filter it through, whatever you know about that parent, and whatever you know about their child and, and then people in the same agency have different experiences based on which staff is working with a child. For residential, I think it's really important to meet the supervisor of group home, if at all possible, because that person will be very important. And one of the challenges in visiting agencies and meeting with them is sometimes you could meet those important people. And sometimes you're just dealing with an admissions, and they're kind of part of their job is marketing. So you're, you don't get the information you need about who's going to be ultimately responsible for your child, when we visited the group home that David ended up moving into. Not only was the supervisor there, but a bunch of the staff were there. And I just watched them interact with him. I just stood back and I watched, it told me so much about what, what they were like, and to my happiness. They were laughing with him. And the women in the House who happened to be the staff who do the cooking, want to come say to David, tell me what do you like to eat? And I had such a good feeling about the place. And I was so happy that I got to see the staff who would be working. But you can't always do that. I would ask questions about staff. And I have to say agencies were really forthright. When I asked them about staff turnover, I was so surprised and impressed that when I would ask very specific questions like What is your staff turnover rate? What is your staff vacancy rate? I would get honest answers. And there are agencies who said, we're in a staffing crisis. And I would was like, Thank you, thank you for sharing that with me, at told me that that agency was probably not able to be as particular in who they were hiring, maybe as another agency that was having so much difficulty in hiring

Meghan Smallwood: 18:01

And I also feel like when they say that people. it's almost code for well, we're not quite sure what will be you know, who will be accepting come the next year, but at least they're like you said upfront about it rather than, "Oh, yeah, no problem. We'll take care of this." Because, you know, I know it'd be much easier to know the truth. And I know I have a parent who just went through this, like she wanted an answer from an agency. So she could either move forward with the PCP or cross them off the list. You know, she doesn't want to waste the time of anybody, especially when you know that the clock is ticking. And July 1st is right around the corner. So that's definitely very important. But I did I also want to see is there anything else you wish that you knew sooner within the transition process to better prepare for his exit?

Jane Plapinger: 18:49

I wish I had been told how idiosyncratic all the different admission processes are at the different agencies. I was prepared for the confusion of one agency not wanting to talk to me until they had all this documentation. Another The first step was to have an interview. It would have just helped if I had been told that's what the landscape is. And you're because I was so bewildered at how different every agency was, and how disinterested a lot of agencies seemed, when I tried to reach out to them that I would have been less stressed. If someone had said to me, this is the territory, this is the landscape. This is what it's going to look like. Don't be discouraged. Just reach out, get whatever information you can. So that was one thing. Another is how long the process talk. Some of the transition documents that I've seen, they have a timeframe for that last year. That isn't accurate and my experience And again, I have the residential experience, which I know is a lot more complicated. But for families who are looking for residential, they can't wait until October, or November, if they want choice, if they want to research and really look for a good fit, or their, their child, it just, that's just my experience. It doesn't happen that quickly.

Meghan Smallwood: 20:28

So I think theme is starting sooner than later, which I know you said you you began, you know, thinking about it so much earlier than, you know What even was and, and getting that information and collecting it and hearing it numerous times over and over. I think that's just so important. And I know, that's something that we try to remind parents continuously about.

Jane Plapinger: 20:52

I got anything that I could do on my own out of the way early on, like the SSI application and the MVA and all of those things, so that I could just focus on researching agencies...

Meghan Smallwood: 21:12

Yeah, again, it's very dependent on the

Jane Plapinger: 21:12

...and reaching out to them the last two years.

Meghan Smallwood: 21:12

Right. agency. And I think that's also very telling to some are just like, come on in, we're happy to take you and others are like, Well, I have to say, some agencies didn't want to talk to Nope, you have to wait. So yeah, it's interesting to see the difference.

Jane Plapinger: 21:18

The other thing that I thought was strange was me initially, because it was two years earlier, I was encouraged to keep on, however, because I needed to get to know the agencies and others were very willing to talk to me early on. that at the transition fairs, where agencies would have a table, they were very encouraging and welcoming. But then when I would reach out to explore whether they'd be a good fit, they were overwhelmed, overloaded, and wouldn't get back to me. That was another disconnect.

Meghan Smallwood: 22:14

Yeah, and I know a lot of parents will say to me, "Well, I've already left an email or a phone call. And, you know, I don't I haven't heard anything." I said this is the time to nag. This is the time to advocate, this is the time to make sure that your name, of course, you know, very nicely, is pulled to the front for good, you know, so they remember you. Because if you just sit around and wait, you're just going to be waiting, unfortunately. So you need to whether it's the agency, whether it's the coordinator, you need to be the one staying on top of it and making sure things are progressing.

Patrick Cadigan: 22:47

Well, and in that regard, one of the big takeaways for me from this conversation, and one of the things that I appreciate is hearing the information over and over and over again. That is, that is definitely a plus. But I am also going to say that that would be a good place to stop the conversation, because there's a lot to absorb here. And my brain hurts.

Meghan Smallwood: 23:12

We really appreciate you sharing your story and all the information you've gathered, and...

Jane Plapinger: 23:18

I appreciate the opportunity to share because I was helped so much by parents who shared with me, and I welcome the opportunity to pay it forward.

Meghan Smallwood: 23:37

Well, that was awesome. That was a great conversation.

Patrick Cadigan: 23:39

Successful interview. Interesting talk, lots of discussion.

Meghan Smallwood: 23:43

You don't understand there are families out there that need to hear this. Her story kind of breaks my heart.

Patrick Cadigan: 23:48

Yeah, especially in the beginning. I but I really...

Meghan Smallwood: 23:53

Yeah.

Patrick Cadigan: 23:53

...appreciated her pivoting to just the positive.

Meghan Smallwood: 23:56

She's very positive.

Patrick Cadigan: 23:58

All right, well, do you want to go ahead and sign us off?

Meghan Smallwood: 24:02

Alright so as always, you can follow the information from this conversation in our show notes, like follow and please share on the podcast, we want to share this information with as many families who need it and we need your help to do that. Visit our YouTube channel where we've posted videos of all our conversations, including doing some of the legwork for you by curating videos of topics that revolve around transition. We've created playlists that cover guardianship, alternatives to guardianship ABLE accounts, and still more to come. So be sure to subscribe there as well. And finally, check out our website which is chock full of information around the transition process. We think it's the best website out there to share information about the transition process. So go to www.postsecondarytransition.com. Fabulous. Thank you everybody.

Patrick Cadigan: 24:49

Thank you