Video Transcript: Responsive Design - Personalized Planning

Welcome to week six of Creating Congregations of Belonging with People of All Abilities. And we are going to dive in to the idea of responsive design, that personalized planning. And we're going to spend some time thinking about that first, in general, what that looks like, and perhaps a couple of the sticky spots that are connected with trying to identify who should have a responsive design plan. And again, you need to reference that all within some of that talk we had about cultural context, and in how we approach this, but I think it's really important for some people to have access to congregational events, you're going to need a personalized plan in order to be safe, in order to be effective, in order to provide those access points. 

So again, we're going to talk about this in general, then we're going to talk about how, what kind of information you might want to gather in order to put that plan together. And then we're going to talk about some actual plans from actual congregations, with some individuals. So looking forward to that. Some people, one person that you've met a little bit, Marie, going to talk about Ben and going to talk about Jonathan as well. So again, as we think about a congregation, there are many people, many people of all abilities, and together, most of us do well with universal design options. 

I am thankful for a church that has an elevator the days that the arthritis in my knees is a mess. So again, I delight in the fact that that's just an option and a way to get to the sanctuary. And there are many options built in. We talked about so many of those that are related to either physical accessibility or to learning and participation accessibility, but there will still be some most likely in your congregation that we're really going to need to understand well in order to provide a plan for those individuals. 

And so how do we think about these personalized plans? How do we put that together? And so again, if we're thinking that disability affects about 20% of people, I think that we can put some different categories together. We won't need plans for 20% of the people, most of the individuals, if we do universal design well, we'll be covered under those options. But there will still be a few that may need that. 

So again, sometimes you can tell that a person may need a particular plan because you can see it just one look. And you're like, oh, yeah, we're going to need something in order to allow that person to best participate or be part of our service here. So it might just be, you can tell by a look. Another reason you may know that a plan is necessary is maybe because somebody told you about a piece of their life. maybe you found out that so and so son or daughter said they're never coming back to stupid youth group again, because… and so we know we need a plan to put around that particular individual because somebody told you that there was a struggle and the pieces that were already in place, they weren't working for that person. So we need a personalized plan; we need to think more deeply about that individual. Then there's a set of people where I think you might suspect that there's an issue going on that would require some kind of support in order to be successful in a congregation. 

So I sometimes think in children's settings, it's that it's that third grade Sunday school class that since preschool, you have put two extra people in that room all the way along. It's not that any parent has ever given you information. But there are some certain individuals in that group that you just needed the people power in order to pull that off. So you may have some individuals that you suspect there's going on. But the point do you just dive in there, it's hard to know.

There's also a group of people that there you're not allowed to have information about that individual because there are laws of confidentiality that protect that person. That often happens, for example, within an adult foster care home, group home situation where the individuals, the adults that live in that home are protected by law. You can't just give out information about somebody who lives in that home. 

Sometimes, if you can allow individuals to see that it is in the best interest of their clients living in that home to get information, sometimes people will talk. But that has been a very challenging a situation sometimes where you just you literally can't get information because legally caregivers are not allowed to tell you some stuff. 

So here is the thing. Who gets a responsive design plan? I think you start with the people in the first two categories. I think you start with the people who might think this was a good plan to say, you know what? We just wondered if it would be helpful if we had a conversation about how you can best be included here at our church. Could be talking to a parent, could be talking to an adult. And they may say yes or no. But I think often those people who have not disclosed any information to you, as they watch these plans put in place and they begin to trust you, they may come forward to be part of this personalized planning process. Again, I can't say if you're in a much larger church, you probably have more of these plans, if it's a smaller church might have one or two, I don't know. It might be for children, might be for adults, might be for seniors. It depends on who's there. But I think it's wise to say, let's do this well. Let's honor this person well. Let's invite people into that conversation. 

I also just want to give you a conversation that I often recommend, and I'm going to try to find one of my puzzle pieces here a minute, because I think this conversation goes well with the chance to think about how we interact with one another in suspecting that there may be some kind of a difference or disability. So I wanted to relate this. Often people will say, Well, how do you talk to a family when you might think that you need some more information about a child, but they don't seem anywhere near being able to give information or know that there's an issue. And so I guess I just want to hand you a conversation that I found really helpful over the years, and many congregations would agree.

Sometimes we talk to a family because they have indicated, well, this is my child, or we have seen or we've been part of that birth experience, and it's Logan with spinal bifida and how are we going to make this work for logon. But I think often we have children, and I'm going to personalize this to children, although I think you could use the conversation in an adult setting as well. But let me talk children first. 

So I again, I call this the ‘I noticed’ conversation, because I think it's a way to talk about some differences without using scary words or disability, and yet getting the information that the church may need in order to function well. So again, this would probably be for that third category of people where, really nobody's told you but you suspect that there's something going on. So I know this conversation and it often goes something like this. All right, let's just pretend we're doing this. 

Oh my goodness, I am so excited to have Jason be part of our preschool Sunday school. It has been so fun. I have never really seen a four-year-old build Legos the same way that Jason builds Legos. He is so creative. I don't know you must have stuff all over your house as a bomb just with, with all of these grand building plans that he has. I wonder someday if he'll be an architect, he is so good. In fact, today he had two kids just standing watching his creation because they were so delighted with it as well as peers. He has so much energy that smile lights up the room, it is so great to have him. I noticed when we call kids over to sit down, it's really hard for him to sit and join us at Bible story time. Have you noticed that? 

So again, I don't know if you caught the trend. Man, am I piling on a lot of green. I'm pulling out the things that I've noticed. How many pink things did I'd say? One. And I didn't give it a scary name. I just noticed an observable behavior when we sit down, that's hard for Jason; have you noticed that? 

So I'm not saying oh, I think Jason has… No, I'm not doing that either. It is just saying this is what I noticed. Lots of green. Parents need to know that you see the treasure in their child. One pink. What's the hottest spot? Call it out. And then I passed it off to that parent. Have you noticed that? And I think again, that gives the parent a chance to say one of two things. Yes, I have noticed that. Wow. If you get that response, then it's like, boy, I wonder if we could get together talk about ideas. If we could, maybe we could invite somebody to our conversation so we can brainstorm together. But the idea would be let's take this information and let's talk together about what we can do to make this easier for Jason. 

The other response a parent could have is No, I've never noticed that. Now, I will tell you I always, when I was in children's ministry, too, I always took responsibility at that point, because it's very possible that this is one of the first social experiences that Jason has had. And it's possible that we have just like poured gasoline and threw a match on this particular area that they really haven't seen before. So I usually say something like, oh my goodness, I wonder if there are some things here that we're doing that don't fit Jason's personality very well. Could we sit and talk about this so that I can understand from you how you structure things at home? 

Again, both ways I want a conversation, but I haven't used any scary words; I haven't said I think Jason has… and gave him this designation or label. This is all about noticing that God-designed puzzle piece, lots of green, one pink. And at that point, having that relationship with a parent, to sort of work through some options. Many congregations, many parents have found that conversation helpful. 

I've also used that with adults. If I knew this person well and felt we could monitor that conversation, and have mentored others to use that as well to just talk about that adult’s greens are many things. And the one pink, I noticed when it's time to do X, Y, or Z, it's really difficult. I noticed that when we put out the signup sheets, you put your name on each one of the signup sheets. And I'm wondering if we can talk about that. So again, there's same pattern, same idea, but identifying the many greens and then that one hotspot that you really need to either talk about or put a plan around. 

So those are just some thoughts, and again, so sometimes it's that talk that allows you to enter into a personalized plan, the ‘I noticed’ conversation. And sometimes you just need to talk to those families that you suspect either that this adult or this child might benefit from a personalized plan. 

Again, remember, have I said this enough yet? Every good plan has at least two parts, right? I feel like such a broken record with that one. But I think it's so important to remember that I have seen more plans, personalized plans crash in a congregational environment, because they have over looked that part. They have definitely a plan for the individual, but they have failed to equip the congregation, or the peers, or the leaders to best understand that plan. Or maybe they've equipped one leader but in reality, there are seven leaders that interact with this particular individual on a volunteer basis. And so, again, we really need to think about preparing a plan for the individual and preparing a plan for the others. 

Then again, I use the word plan; it might be a very simple plan, I don't exactly know. We’re going to share several of these through the next few weeks so that you get a flavor for what a plan might be like. We can't publish ‘here's your plan’ because it all begins by really getting to know that individual. You have to unwrap that child, that adult. You need to find out about that person's puzzle piece. What's green, what do they love to do? What are the areas of challenge, so we really, really need to understand that person. We need to get to know… you know what I find it easier to be in with other people when this list of things is together. It's hard for me sometimes to do these things. So we're finding out not just about that person, but also some tools and strategies that make events, that make opportunities, activities, being in an environment easier for that individual. So we're really getting to unwrap that individual. 

The other thing and again, this is sort of a simplified way of thinking of a plan, identify who may need a plan, right? And so now we got our list of people. We get to know those people and not just their puzzle piece, but a little bit more deeply. What tools are helpful? What things are not helpful? What strategies work; what doesn't work? So that we've got that put together. And then I think the idea would be to sort of jump into that person's shoes, or sandals, or socks, or whatever's on their feet to be able to test-run that activity. 

So what would it be like to be in church? Let's just imagine a person who's going to be part of your setting, and let's say green for that person are schedules. It’s easy for that person, they love to follow schedules. This person loves music, like music is everything for this person. And this person loves numbers and counting high numbers; loves to count things and objects. Difficult for this person is unexpected noise. It often elicits a scream if an unexpected noise happens to this person. And also difficult for this person is managing change in schedule. Okay? There we go. 

So now let's jump into that person shoes. What would it be like? What would it be like to be part of worship service? Are things announced, or does all of a sudden the trumpet start playing from the balcony, and all of a sudden the worship band start playing? What would it be like for this person, child or adult in one of the more educational settings - adult Sunday School, child's Sunday School, adult small group? Is it planned enough? Is there a schedule? Do things change quickly? What things would be a joy? What things would be difficult? Let's be that person throughout different spaces within the congregation and find out where are the places of joy and where would the difficult spots end up.

And then once we discover that, well guess what? It's time to set up a plan. We need an action plan, we need to put in some accommodations, we need to decide what's going to happen. 

So maybe for our very made up individual, we might decide that we're going to have a specific order not only for worship, but for church in general; that there will be an individual who will sit with this person sort of, in words, or in pictures; they're going to put together the schedule for the day. We're going to decide that this person needs to have some kind of warning before there's going to be music starting. And so we're going to assign this person the nursery number 102 - you know, those numbers that they put up when your kiddos crying - and so, but this person is going to have 102. And whenever they put 102 up there, that means that within 10 seconds, there's going to be a song that's going to play, or a sound that's going to come that's musical, so that person has a chance to get ready. This person doesn't do well with unplanned sounds, but this very well with planned sounds. So again, 10 second warning for a noise it's going to happen. 

We're going to make our schedule flexible enough so that if we do need to move parts and pieces or erase words or move them around, that's also available to this person. And because they so love to count, we need a count of people who are part of the worship service, we're going to ask this person to be the official people counter at a certain point in the service, and stand in the back and count how many people are present that day? I don't know. There we go. There's a plan. But I think it's something like that. And do we what do we need to make this plan? Well, we need some pieces for a puzzle or a whiteboard or whatever, we're going to use a journal a notebook, a folder, like I showed you before that had pieces and pockets, whatever would be appropriate. But let's build that schedule. And let's build the plan with not only the equipment we might need, but the people power we would need in order to make that individualized, personalized plan happen. Make sense? 

So we gather information from the individuals, we put together a plan, and then it's time for us to share that plan. Remember, it may be six or seven people that need to know what is in the plan. We might need permission to share that plan. We do need permission either from the individual or the parents or guardian in order to share information, but probably need to have a written agreement to share that particular plan with a with the people in the community. 

So we share that plan. And of course, that's only plan number one. Sometimes you need to go back to the drawing board and figure out what's working and what's not. So remember, it's not just plan B; it's probably going to be plan K by the time all the pieces are in place. 

It's also true that people grow and change over time. So you're probably going to find opportunities to say, Oh, my goodness, this is no longer an issue. We don't need this support anymore. But we really have seen this person isn't bonding in the setting. So we need to think about that setting and how we can make that more successful. So hope that makes sense. 

That's sort of a rundown of those plans, those personalized plans. It's not rocket science. We're just gathering a set of people, the names of people that might need a personalized plan, gathering that information, getting to know that person, what works, what doesn't work, applying that to a congregational setting; what might need to be part of that plan after you've sort of test run those different environments where this person will be and then a chance to share that with other people. So again, it's not this rocket science thing. 

You don't need 16 experts to make these personalized plans. It might help to have some people who know this individual, who know what strategies work with this individual to be part of the planning team but again, it's one of those things that you can as a congregation put that together. There are a lot of pieces to help you make these personalized plans. 

In that reading you've been doing with Accessible Gospel, Inclusive Worship, it’s applied very specifically to introducing people to Jesus Christ in the first part of that book, getting to know that individual, but that also that planning process can be broadened and applied to other settings within the congregation. 

So we're going to talk more about what information might be helpful to have an a plan and our next session. And then I have some very specific people I'd like to introduce you to and some of the plans that are part of their lives.