Meghan Smallwood: 0:01

Navigating Post Secondary Transition for students with special needs requires careful planning, informed decision making and proactive involvement. In this journey parents or caregivers or guardians can be a child's strongest advocate and guide. And your commitment is a powerful force for their success. Collaborating with organizations that specialize in special education, transition planning and Disability Services can provide invaluable assistance in navigating this complex process. As you explore available resources, it's crucial to foster open communication with yourself, your child educators and professionals who can provide valuable insights and support. And that's what we're here to talk about resources and other stuff. Welcome. This is the Post Secondary Transition podcast. We have conversations around that process for families of students with disabilities. I'm one of the hosts My name is Meghan Smallwood, and I am a public school transition coordinator. And my co host is...

Patrick Cadigan: 0:59

and I'm Patrick Cadigan. I am a public school special education teacher. Following up on a conversation that we had, with one of our parents, Jane Plapinger, there was a lot of focus and attention around Person Centered Planning. When Megan and I sat down to talk about the next discussion, we were like, "Hey, why don't we start there?" So, Meghan, if we were to throw out Person Centered Planning, where do we start?

Meghan Smallwood: 1:30

I think that term is something that parents just need to become more familiar with and comfortable with early on, because I hear from a lot of families as they're preparing for 21. You know, well, what about the IEP? Or isn't the agency that they go to going to get the IEP? And aren't they going to continue to work on these goals will know it the IEP leaves when they leave? So person centered planning and determining and you're going to hear us say this a lot. What's the good life for your child is really important to start thinking about early on. And I think Jane really stressed that when we met with her.

Patrick Cadigan: 2:07

Lets start the conversation around that, then. You are the transition coordinator. If you were to define Person Centered Planning, how would you define it to a family that is just walking into this process?

Meghan Smallwood: 2:24

So when you think a Person Centered Planning, it's basically that approach that you're focusing on your individual and what their needs are, their preferences, their strengths, and basically what their goals are long term, you're not going to do it on your own. It involves collaborating with a lot of people, which we'll get into, and it just comes, you start to come up with that plan that's tailored to them and what their good life will be. And this is specific to our state. And I know every state is different. But overall, in every state, you're going to have some kind of plan moving forward after you leave school. So in our state with the Developmental Disabilities Administration, or DD, DDA, PCP, the Person Centered Plan is like that replacement IEP. Because it really helps create that vision for the individuals future. And it's that written process or plan about the individual and what they need.

Patrick Cadigan: 3:25

So I have a sneaking suspicion that you probably then are drawing from a resource manual.

Meghan Smallwood: 3:33

How did you know it's not just all up here in my head?

Patrick Cadigan: 3:36

Yeah, this is something that's relatively new, right, or something that has been updated?

Meghan Smallwood: 3:41

Yeah...

Patrick Cadigan: 3:42

Where did they...

Meghan Smallwood: 3:43

...the terminolgy has definitely been changed over the years. It used to be, oh, I forget the term IFSP or there's different, different terms. Now it's Person Centered Plan, PCP.

Patrick Cadigan: 3:54

So where do they start? What's the what's the beginning of the process?

Meghan Smallwood: 3:59

For the PCP, and this is coming from DDA's website, the Person Centered Plan guide, basically, they have a whole PDF guide, with all the information, some light reading for you in your spare time. But it's basically that developing of a written plan. It's a collaborating process, but it's driven by the individual with the disability. And it's similar to an IEP and that you're really looking at the goals for the individual. And this isn't an annual plan, you know, it's just like the IEP and that you're going to meet each year with your team and go over what they've achieved, what they're still working on, the important things in their life. But these goals and preferences that you're putting in this plan, are really going to align with those services that they're receiving to support them. With our state it's from DDA. In other states, it's whatever agency or funding it's coming from, but they want us to make sure everything's aligning. So you're gonna identify the services that are going to support them so that they can participate in the most integrated community setting. And you're going to outline the delivery of services that reflects what their personal choices and preferences are. It's going to help you also identify the specific needs that must be addressed to ensure their health and welfare. And I can speak to this a little bit because I just actually sat in on a PCP meeting for one of my students that's exiting. And it's a very thorough document. And it really may seem a little redundant at times, but it's stressing the importance of health and safety, for our friends that are exiting to make sure that they have what they need in place, and that it's recognized by whoever picks up this PCP, what they need to keep them safe and living their best life.

Patrick Cadigan: 5:50

IEP's are never redundant.

Meghan Smallwood: 5:51

Not these days.

Patrick Cadigan: 5:53

Yeah, oh, my gosh. So just like an IEP, though, then if this is something that's going to be updated annually, or can be looked at annually, that means that it can change as the person changes as the needs change.

Meghan Smallwood: 6:07

Absolutely, and that's something important to remember; just like the IEP, it's a living, breathing document. So God forbid something changed in your life or your your individuals life, and there's suddenly a health concern or, you know, a glaring need that wasn't there before, you can come back to change and revise that plan, and submit it to make sure that you have those supports and services in place that you need. So there's always, you know, it's just that communication with your Coordinator of Community Services, or CCS, that's super important to make sure that they're aware of what's going on.

Patrick Cadigan: 6:43

As I am hearing you talk about all this. Let's start; first off, what are some of the roadblocks that families who are, who are transitioning into this process, what can they expect to run into?

Meghan Smallwood: 6:56

Oh, roadblocks, there's lots of roadblocks. And it comes down to I think, a lot of the the timeline to with submitting and making sure everything's in place for this plan. Like I mentioned, it can be redundant, it can be tedious. But once that's all done, and you know, we make sure it's individualized, it just depends on with our state specifically, there's a couple of things that can hold up a PCP to make sure that it's moving forward with some of the important players. For instance, if you have selected an agency that you want to support your individual, and you're still waiting to get final confirmation that they can meet their needs, that could hold up your PCP, because once you select someone and they've agreed you can put them in that plan. So if you don't have that agreeance, then you know, you might have a little bit of a slow go and getting things approved. The other thing I know with self-direction, if you decide to go that route, there may be some some holdups or roadblocks there. Because when you're trying to justify a lot of the things in that you're putting in there for your your individual's good life, that may, you know, bring up some more questions from DDA. Or they might come back and say, you know, we need more information about why this is important. So it really does come down to the timeline. And I think the important part is just as we've always said, being that advocate staying on top of it, you are that constant, although you have a team of people to help you, you, as the parent or the guardian or the caretaker, just need to make sure things are progressing.

Patrick Cadigan: 8:39

Let's start to then refocus the attention, let's start to come into the positives. Who are the stakeholders in the plan?

Meghan Smallwood: 8:48

Well, obviously, the individual who this is all about, they are like the main stakeholder, that they are the ones that everything is centered around, obviously, behind them as their family members. And that's not just you know, mom or dad that can be siblings, that can be grandparents that can be whoever is part of that circle of support. And I've probably mentioned that a few times as well, making sure you have that circle of support around you as you are coming up with this person centered plan. And we're going to talk about some of the resources that can help when you're developing it. But I know Jane touched on Charting the Life Course when we met with her and had a conversation and that is a huge resource to help bring you in or draw in those people that you may not even realize are part of your circle of support, they can bring some good input to develop it. And then of course, the Coordinator of Community Service, like they are the person who's going to submit this to DDA, and they're the ones who have been trained and know the process. So I know the meeting that I sat in on for the PCP of my student, he had all the paperwork and he had great examples of what each section meant, and how to complete it best for the individual. So If you're not alone in this, again, we will stress that you may feel like you're an island sometimes, but you have a circle of people around you to help support.

Patrick Cadigan: 10:08

So, then I guess the next question that I have in my brain is realistically, how long should a family who's going through this process expect it to take?

Meghan Smallwood: 10:22

So it's obviously individualized. And it's not just a one and done, because there's a lot of pieces that go into it. I know like when Jane met with us, she talked about having that big pre meeting for the Charting the Life Course, that she had done, and really helped to create what that vision was for her son. So a pre planning meeting, a couple of pre planned planning meetings might be helpful before you actually sit down to write this PCP. Just to understand what the vision is for your child or young adults good life, and what's important to them what their day should look like. And I have been telling parents to doing this even before they exit, I mean, Jane had mentioned doing it in the fall before her son exit, exited. Even before then, I mean, whenever you feel ready, and you want to start creating that vision, I think it's a good idea to have that vision statement, kind of like an elevator speech planned. So when you do go visit some of the agencies or tour some of the programs, and they say to you tell me a little about your son, you have that elevator speech? Well, this is his vision, this is what he wants, you know, so they get a sense of, okay, this is who they're presenting to us. So we can start figuring out what supports he would need to help with that vision or that good life. So that pre-planning meetings very important. In addition to that, your Coordinator of Community Service is going to help be preparing some other information to complete the PCP one being the HRST, the Health Risk Screening Tool, which when you are preparing that year of exit, you'll be gathering a whole bunch of different documents for them. And I'm sure the school will be helping you as well. But this HRST, will help to measure the risk for health concerns of your young adult, you get a score, one being the lowest and six being the highest. And it's measuring the health risk, not the disability. So this is basically saying how much support you the your child has, is going to need with their health and you know, safety. And this is something interesting, as I was reading the manual, I knew that most of my families I work with usually have to complete a clinical review with the nurse, I didn't realize it's when you receive a three or higher, that's when you're required to meet with the clinical with a nurse for clinical review. So anyone with a score of three or higher, that's just part of it. And you may think, Well, mine, you know, they don't have a nurse with them all day like but it's just it's part of DDA's information.

Patrick Cadigan: 13:04

But so that definitely sounds though that that is something that is very specific to the location in which we live in. It could...

Meghan Smallwood: 13:11

Correct.

Patrick Cadigan: 13:11

...conceivably it could be different somewhere else?

Meghan Smallwood: 13:13

Correct. Yes, that is definitely specific to our state.

Patrick Cadigan: 13:17

Got it.

Meghan Smallwood: 13:19

Another tool that they will probably help with the planning of the PCP is the support intensity scale, or SIS. And that's completed for all new individual 16 or older for an initial PCP. This will give information to measure the person's support needs when they're thinking about personal work related or social activities. And then kind of describe what the types of support are and the intensity of the supports that they they may require. And that's reassessed every five years with DDA. So these types of tools, the CCS Coordinator of Community Service will have them done prior to planning the PCP and they will help factor in when you're deciding what kind of supports and services need to go in there for your individual.

Patrick Cadigan: 14:09

I know from the conversation that we had with Jane, which of course is kind of leading into why we are talking about what we're talking about; but let's take a step back and again, ask the question, what are the benefits of doing something like this?

Meghan Smallwood: 14:33

Well, it really helps to come up like we've talked about, but their vision, individualized for them, you know, we're not in the school setting anymore. It's not. I know, our IEPs are individualized, but naturally, a lot of times, you know, we might have a group of students who are trying to achieve one goal just the way it is. So this is really individualized to what is important. to that young adult, we want to know what their outcomes are going to be for the year, we want to know what the risks are for them, the what kind of restrictions, there might be their needs, and what kind of services they need to ensure that they're going to be healthy, safe and achieving that good life. So it really is just a very different way of looking at it. And I think that might be surprising to some parents as well, I was going back to look at a couple, you know, examples of PCPs, from the last couple of years of students, and I know, when we're looking at IEP s, the focus is around math, writing, reading, and sure those some of those things might still be a focus on a PCP moving forward, but now it kind of shifts gears, it's going to be more about, like our long term plans living in the community, I want to have friends, I want to socialize, you know, I want to be around people, those can be goals on the PCP, I want to learn how to do my laundry, I want to wash my, my body by myself, things like that. So it's just changing that mindset a bit, to think that they can work on moving forward for for their life.

Patrick Cadigan: 16:19

So that actually then harkens back to the discussion that we had with Laura Karp who was the...

Meghan Smallwood: 16:27

Occupational...

Patrick Cadigan: 16:28

Occupational therapist. Right? Yeah. So and again, those practical life goals.

Meghan Smallwood: 16:33

Right. Right, exactly. And again, you can still have a lot, you can still have some of those math things like I know, you could have something with money, if it's important, whatever is important to your young adult moving forward, if they want to go and buy a soda at the gas station every day. And that is important to them, then by golly, we can put something on there about, you know, making a monetary exchange, or making a purchase. So it really depends on your individual and talking through what's important to them with, you know, your supportive people. And when you're writing the PCP with your coordinator can, the coordinator should be able to help you fit it in, you know, when you tell him and your individual expresses this is what's important, they can tell you where on that plan it can go.

Patrick Cadigan: 17:21

One of the things that I keep going back to in my brain as we're having this conversation is, as the special educator, I know that an IEP is a legally binding document. Alright, so within the confines of the school system, this is something that is expected like legally you have to do it is a person centered plan on that same level?

Meghan Smallwood: 17:48

Good question. So the goals are driving the services. So in order to have the services funded, you need to have a goal that ties into it, or a reason why you're receiving them. So yes, to receive your funding, it is technically legally binding. Because if you're not receiving this support from the service, there's going to be questions about what's happening. And I know with you know, a day program, it's pretty straightforward. You have the documentation coming directly from this, this program to DDA saying this person's been here, this is what we supported with them. I'm sure they have their data keeping records to keep tabs on at all. And then I should mention too, when they do their meetings, if you have an agency that's involved in your your individuals life, they will also be in attendance at the the PCP meetings. So kinda like when the special educators reporting on the IEP, they would be able there to be there to share the progress that's been made, and what you know, they feel like could be worked on moving forward with the team. It's the same thing. And I think that's why with self-direction, it might take a little more time for them to understand why these supports are being needed in the plan. If it's not as straightforward as like a day program, you know, the justification of okay, well, what is this going to do to make this good life for this individual? And why should we pay for it? So there's a lot more legwork, I think, behind it, to justify why that funding is needed. But again, you know, if it's something that's important to your child, and it's something that will give them their good life, and you can prove it moving forward, then it should be should be no problem.

Patrick Cadigan: 19:32

All right, so then again, that begs the question; that so parents are not alone in this process as well?

Meghan Smallwood: 19:40

No, and I know sometimes you can feel like an island and it can be very overwhelming, especially and then we've talked about self-direction a lot. You know, when you're doing something like that, a lot of families have said I can't do that I have a full time job. But you have to remember all the people out there who are also doing it, and I was just telling someone the other day about how the social media groups have just blown up with the amount of families that are coming, you know, to support each other and to act as resource for each other and collaborate. So drawing from other families, drawing from your own family, like we said, your circle of support, drawing on those people from school that know your individual well, and can give you all this input before they leave, they can all help with the process. And I think that's why that pre planning meeting or using those Charting the Life Course, resources, to get people together to really understand your individual as a whole, and will be so imperative in this process.

Patrick Cadigan: 20:39

It's so funny, though, that you should mention the social media groups, because I will tell you that I have been feeling lately, like, you know, I am in these groups as well, I am paying attention to all the things that are people, you know, all the things that are being said, however, lately, I have been getting this impression that, you know, someone will ask a question, and I'm like, "Oh, I can jump in." However, there are many... No need. Yeah, there are many conversations that are happening. These platforms are being used to ask questions, but people are using, they are taking their own initiative to then follow up in the outside world. So...

Meghan Smallwood: 21:21

Yes.

Patrick Cadigan: 21:22

It's, it's wild to me.

Meghan Smallwood: 21:24

Oh, I love it. I know like the, like you said about the chats like, go get alert, and they'll kind of scroll through. And people are sharing their experiences and what worked for them and tips and tricks. And I'm like, "Oh, my gosh, this is like a goldmine of information." And I had a parent tell me like, I don't even need to ask anything, I just kind of scroll through and find someone else's in my shoes and get the answers I need there. But I've also noticed, like the not just that these groups are being used to find activities for their young ones, but also just the collaboration piece amongst the parents, you know, let's get together and brainstorm what we can do moving forward, and how we can help each other to make sure that we've got consistent structure for them with whatever it may be. And also support for finding staff. And I know, I'm getting on a tangent here about self-direction. But, you know, they're just such great resources. And even if you're not, and self-direction, just in general, you know, getting the information about what it's like after life, life after 21, you can make a lot of good connections there. So if you do feel alone, you know, venture out and find some families that are going through it, they are the kindest people to I mean, after going through the the experience with you know, transition, I've never had a family, not tell me they'd be willing to talk to somebody else, because they want to help those that they can empathize with.

Patrick Cadigan: 22:47

So then walking it back in, in in terms of a direction that I as a teacher would understand, as parents begin this process, excuse me, of creating a person centered plan, does the school system or can the school system play a role in this?

Meghan Smallwood: 23:09

They can. And again, it depends on the family, the individual, the staff member, but if the family does want to extend an invite, and the staff member feels comfortable in joining, they absolutely can come and be a part of the planning process. And we have a friend who did this not too long ago, for one of her students, it's exiting this year. So I know, she sat in on the pre planning meeting for his Charting the Life Course. I've said it in a few because parents have asked me, you know, and I'm happy to, because I think it's super informative. And, you know, I think it also helps, too, because a lot of times the parent is kind of, I don't wanna say the loss, but like, Ah, I'm not quite sure. And you know, it helps to have someone from school, who might see them day in and day out or talk to their staff members and know, oh, this is what he likes to do, or when he goes in the community. He's really had an interest in going here. And that triggers things for the families to think about. Oh, yeah, he could totally do that. So I think it's just a nice, it'd be nice to have, you know, someone from school if possible.

Patrick Cadigan: 24:15

Alright so longtime listeners will know that we have a website.

Meghan Smallwood: 24:20

What?!

Patrick Cadigan: 24:22

In case someone doesn't know about this, we have a website, www.postsecondarytransition.com. We do have a page that we are currently it is up it is posted, but of course we are always developing it as we are going along. But we do have links to some of the resources that we have found and others have suggested that are useful. Did you want to highlight some of those?

Meghan Smallwood: 24:53

Yeah, absolutely. I mean, the ARC is always a great resource. There national organization. I think many people when they think of programs for individuals with disabilities think of the ARC, but they have a lot of information on Person Centered Planning, the approaches and tools, so you can definitely check out their website. The National Parent Center on Transition and Employment also has a wealth of information there. Person Centered Thinking Tools, which was developed by Helen Sanderson Associates have many resources on their site. The biggest one I really want to highlight, and this, again, may be specific to our state, but I know there's other states using it because it was developed by the University of Missouri, Kansas City. Charting the Life Course framework; this framework, and the transition coordinators in our county were just trained on it is just a phenomenal tool for Person Centered Planning across the lifespan. And it helps with envisioning that good life and planning for supports, and those navigating those systems that they are going to have. And actually, when I went through the updated manual from DDA, on person centered planning, shockingly Charting the Life Course is very well embedded in it. So DDA has really embraced the circle from the person centered pre planning with Charting the Life Course, which really captures the individual as a whole, and breaks it down to different sections like communication, their day to day finance, health and wellness. And so as you go through the Charting the Life Course framework, you really start to plan for all those parts, which is also on the PCP. So again, when we talk about having your circle of support to, to support all these different pieces, when you're pulling in people that know, you know, Johnny in his day to day from school, and someone who's a neighbor, who might know something within the community, you're getting different aspects that can really help shape it, you know, for that meaningful life.

Patrick Cadigan: 26:58

I think one of the most interesting things about this discussion is so in specific to Charting the Life Course, alright, and we, I need to go back a couple of years, when I was at Towson University working on my master's. I was in a program for Teachers As Leaders In Autism, one of the seminars that we did for in that program was Charting the Life Course. But I, I didn't know that, right? Like, this was just a, you know, this was just part of the program. This was something that they talked about. So fast forward, years later, and it comes up again, and people that you and I have talked about, people in our circles, people that we know, like, now, all of a sudden, all of this information is starting to come full circle and apply to all of those things that I'm learning about, the things that I'm interested in. So I just when you as soon as you mentioned it, I was just like, yeah, absolutely, like, I kind of makes me want to go back to, you know, three, three or four years ago, or however long it's been and be like, "Hey, Patrick, tap, tap pay attention! Like this, this is gonna be really important in a couple of years. Come on, man."

Meghan Smallwood: 28:17

This will come in handy.

Patrick Cadigan: 28:18

So any others that you can think of like off the top of your head?

Meghan Smallwood: 28:23

Most of them are just listed on our website, National Center on Advancing Person Centered Practices and Systems, Family Voice and Exceptional Children's Assistance Center. Again, they all have their own resources on it. But I think just scrolling through and examining them, researching them all. Finding what works best for you, any resource is going to be a good one to help you start the planning process.

Patrick Cadigan: 28:48

And one of the things that I will throw out there somebody who kind of had to go through and parse through these resources, as we have found them, I am going to throw out there that, don't discredit any of the resources because you don't necessarily think it applies to you in that moment. As I was doing research into those resources and kind of does like putting them into the list that we ultimately came up with it; it is designed and intended for everyone, but probably at different points in the process of where you are. So just keep that in mind wanted to throw that out there.

Meghan Smallwood: 29:31

Doesn't hurt to print them out and put them in your transition binder just to have, you know, on hand.

Patrick Cadigan: 29:37

Yeah. Yeah. I definitely agree. All right. Well, fantastic. And again, this is one of those topics that I feel like we're not done. They're...

Meghan Smallwood: 29:47

Never done.

Patrick Cadigan: 29:48

Yeah, this will probably come up again. But I do think that this is definitely a good start. So, as we move from our existing conversation, we need you to like, follow and please share out this podcast. We want to share out the information from these discussions with as many families as we can. And let's be honest, we need your help to do that. So we're on all the major podcast platforms; we're on Apple, Spotify, YouTube Music, that's just to name a few, please share out the podcast, we want to push out all the information that we're sharing. You can find the information including the links to the resources from this and all the other conversations that we've had in our show notes. You can find that at our website for our podcast, www.P2Transition.com. You can check out our YouTube channel, we've done some of the legwork for you by curating videos of topics that revolve around transition; we have playlists, we cover guardianship, alternatives to guardianship ABLE accounts. And there is still more to come as we are finding those videos that we think will be valuable to use. So please be sure to subscribe there as well. And then finally, check out our redesigned website which is chock full of information around the transition process. You can find our contact information there. So make sure to go to www.postsecondarytransition.com. We are all over the place and we are happy to be there.

Meghan Smallwood: 31:33

We sure are.

Patrick Cadigan: 31:35

All right. So I would say that we can go ahead and draw this conversation to a close but of course we're going to encourage you to come back because there is going to be a lot more to come. Always. All right, fantastic. Well, thank you. Thank you. Thank you.

Meghan Smallwood: 31:50

Thanks, everyone.