Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.
Amy Julia Becker: 00:06
What do you think of when you hear the words disability advocacy? As a parent of a child with Down syndrome, I often feel intimidated by words like those. I feel like I’m not doing enough and I don’t know enough to be a good advocate for my child, and I feel worried that I won’t be a good teammate to the other people in her life if I am being a good advocate. We’re going to talk about all these things today. I’m Amy Julia Becker, and this is Take the Next Step, a podcast for families experiencing disability. We’ve teamed up with our friends at Hope Heels to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters. Your child matters. We need you among us. Today I’m talking with Vanderbilt Professor Megan Burke, and we are talking about various ways for parents to step into this role as an advocate for our children, whether that is through simple steps of knowing how to prepare and handle an IEP meeting or services for adults with disabilities, or taking courses like the Volunteer Advocacy Program, which we refer to as VAP in this episode, or the Assist program. I’ll talk more at the end of the episode, or you can check the show notes for more information about these programs that we reference. They can come in really handy. Meanwhile, here is my conversation with Megan Burke. Megan, thank you for being here this morning and welcome back to Take the Next Step. Oh, thank you for having me. Well, we had you on the show last season to talk about your research into sibling relationships for families affected by disability. And as I was telling you before we recorded, it was one of our most downloaded episodes of that season. And I think that has to do with the fact that you are both a researcher and a practitioner. You know the information and you can explain it clearly, in part, I imagine, because you have lived the experience both as uh someone who has a brother with Down syndrome and as a mom of a child with disabilities. And so that combination of personal experience, professional expertise is why we asked you back today. But today we want to talk about a different topic, which is the work you’ve done in the research aspect of advocating for our kids. Although, again, I’m sure there’s some personal uh uh application that comes from that research work as well. So, anyway, thank you for being here again. Thank you for the work you’re doing. We will provide links in the show notes to the research that we mention here, and we will also just hopefully get to hear a little bit more about your uh life and experience in your work. So um, that’s a long preamble, but again, we’re we’re really grateful that you’re here with us. Oh, happy to be here.
Amy Julia Becker: 02:56
So let’s just start with some definitions because honestly, even as someone who’s been in the disability space as a parent for 20 years, I sometimes get intimidated by the word advocacy because it sometimes makes me feel like I’m supposed to be doing a lot of things that I don’t know how to do and that feel like maybe aren’t like part of my personality. Um, and if I’m not doing it, I’m like failing as a mom. So can we start by just like defining advocacy? Like what is it? How do you think about it?
Meghan Burke: 03:24
Yeah, so advocacy, I mean, put really simply, advocacy is just doing something on behalf of yourself or your family member, or on behalf of another family or another person, or systemically. So in our research, we usually characterize it at three levels. Either as a parent, you’re advocating for your own child to receive services, or you’re advocating for another family of a child with a disability to receive services, or you’re advocating at a systems level where you’re like meeting with a legislator or sharing something online to impact kind of systemic change for a lot of people with disabilities.
Amy Julia Becker: 04:02
So does that mean that like all of us need to become advocates if we are parents or siblings or in relationship with someone with a disability? Or is it more like you just already are one? Like you don’t necessarily have to become it, you already are one.
Meghan Burke: 04:17
You already are one, right? I mean, if you think about being a parent, I think about I have three kids. My oldest has autism, my other two don’t have disabilities, but one of them, when he was younger, he kept getting ear infections, right? And so um I went to like a get together with some colleagues, a lot of other moms there, and I said, Oh, he has another ear infection. Uh the doctor said, you know, if he gets two more, then we should consider tubes, right? Like this is pretty normal. And so I was like, you know, so we’ll just wait and see. And my friends, they were like, You need to advocate. He needs tubes now. You need to get on that. You’re not waiting two more ear infections for this to happen. And I thought, this is so interesting, right? Like, this is for my child that I don’t think about kind of advocating in that sense for, like I do for my oldest son. And all I do is do research about parent advocacy. And yet I have friends who are telling me, like, you need to step up and advocate. And so we do do it, whether your child has a disability or not, you do advocate every day. It’s just like you said, the word in the context of disability often means something maybe more legalistic or assertive, usually something more formal because you’re in so many meetings with professionals, right? So it is more intimidating. But when you break it down, parent of a child with or without a disability, you’re advocating every day, whether you realize it and you’re characterizing it as that or not.
Amy Julia Becker: 05:50
Yeah. Yeah, that’s really helpful. So when we think about that more formal um aspect of advocacy in terms of the meetings, I’m not even talking on the systemic level, but just on those, like I’m going into an IEP meeting or I’m going into a 504 meeting, which again, uh if we have time, I want to ask you about the difference between those. But um, if I’m in those meetings and I’m kind of uh preparing to advocate for my child,
Amy Julia Becker: 06:18
from the research you’ve done, are there barriers that we kind of know that we face as parents? And are there ways to address those barriers?
Meghan Burke: 06:27
Yeah, I mean, I know you keep your podcast short, but barriers, we can talk for hours about barriers, right? I mean, there are so many barriers, whether they’re intentional or unintentional, there are so many barriers in those meetings, right? Like barrier number one, it’s usually you as the parent, and there’s like four other professionals. So it already feels lopsided, right? Um, usually you’re not the one kind of with the paperwork or taking notes or writing things down. So that already feels uneven. You’re not the one guiding the meeting, you’re not usually the one setting the agenda, right? Um, when you go into those meetings, sometimes it’s set up so parents sit on one side of the table and the school sits on another side of the table. So that also, whether it’s intentional or not, that’s also setting up a power differential. Um, the procedural safeguards. So at every meeting, the school is every annual meeting, the school is supposed to give you a copy of your procedural safeguards. And those are supposed to tell you what your rights are as a parent. Now, on average, those procedural safeguards are written at a 16th grade reading level, which means you have to have graduated from college before you can even access what your rights are. And those safeguards, right? I mean, the terminology, the jargon that’s being used, it’s just it there are so many barriers. But maybe if you push all of those aside, when you come into a meeting as a parent, you’re talking about the most personal, personal thing you have, right? You are you are like vulnerable in a way that no one else at that table is vulnerable. And usually those meetings, the way they’re set up is you have to talk about what your child is not able to do in order to access services. So they’re deficit-based, they’re negative, right? And so who can emotionally distance themselves from their child to be able to kind of present themselves in these meetings and advocate effectively? It’s a really tall order and it’s a hard barrier for anyone to navigate.
Amy Julia Becker: 08:31
So what do we do about that? Like Yeah, what do you what do you know for people who are like doing what I’m doing, which is like, oh yeah, yes, yes, yes, yes. I get all of that. Um I think you name them both again, the physical spaces, the power of differential, the language, the jargon, but then you add that emotional layer and vulnerability, and whew, that’s tough. So, like, what’s the um what do you know as far as how we as parents might be able to address some of those issues as we go into these
Amy Julia Becker: 09:00
meetings?
Meghan Burke: 09:01
Yeah, so I mean, there’s so many strategies that we’ve figured out that work. And it’s really just about what strategies work for you at what given time you’re at, right? And so, you know, there can be simple things of we tell parents, always bring someone with you, right? You don’t need to bring someone who even knows anything about special ed law. Just bring someone with you as like an emotional support person, as someone to take notes so you don’t have to take notes. Yeah. Um, as someone who’s just kind of another set of ears in those meetings to pick up on things that you wouldn’t necessarily pick up on, right? Um, as like a sounding board that can be really helpful. Other things we tell parents that are like low-level things, take breaks. You know, three hours is too long for an IEP meeting. You should take a break. If you feel yourself starting to get upset, take a break, excuse yourself to go to the bathroom, have a phone a friend. I’ve had families call me from the bathroom of a school and just say, I need to either talk to you about this or cry with you about this so I don’t cry in the meeting, or yell at you so I don’t yell at someone else. If things are really heated, and I say, do it, yell at me. That’s okay. You know, or if it’s something really got to the point where you couldn’t communicate anymore in an effective way to stop the meeting, postpone it, and call another meeting at another time. Right. But other things we say too is like I write what I call a parent input statement before my meetings, and I say, Here are the things I want to cover. You know, here’s what I think is going well, here’s why I think it’s going well. Um, and here are the things that we have concerns about that I want to address. And if you’re in a state where they’re required to send you the draft IEP ahead of time, then you have a sense of kind of like where things are going, things you agree with, things you don’t agree with, things you have questions about. So instead of getting to your meeting and going round robin and having people just read what they wrote, you know, you could say, we don’t need to do that. I really just want to talk about X, Y, and Z. And then you’re kind of taking the power back a little bit, right? And really getting to the meat of what you want to be discussing. But those are kind of lower level things. Other things that
Meghan Burke: 11:16
people can do that might be taking it a step up is contact your parent training and information center. Every state has one PTI. They are federally funded centers, they are primarily staffed by parents of kids with disabilities, and they will do free trainings and webinars about your rights. So you can understand here’s what an IEP is, here are the components of an IEP, here’s how to advocate in a meeting. Sometimes they’ll review your IEP with you to answer questions you may have. And sometimes they’ll even go to your IEP meeting with you. So you have another person there. Um, and then the things that we have that we’ve developed are a little bit more um time consuming. So we’ve we’ve developed a few more advocacy trainings that are sometimes they’re six hours long, sometimes they’re 24 hours long, um, but they really walk you through more in depth about special education services or adult disability services. So you have greater knowledge about these service delivery systems.
Amy Julia Becker: 12:17
Will you tell us a little bit more? Again, I think we want to acknowledge that there are many parents who are listening to this who will never do the trainings, and that does not mean that they are not being an advocate, and it does not mean that they’re not doing a really good job. So I just want to name that as someone who I think has done a decent job as Penny’s mom and has never done one of these trainings. So just like to level set, but also to say there really are resources out there. And I know these are ours, but it it also might be something where you’re like, okay, I need this, and over the course of the next year, I’m going to, or you know, they might be possible even within um families where time is very short, which is for many of us. So could you just tell us about those with those caveats around what we’re doing?
Meghan Burke: 13:00
Yeah, and I I would underscore everything you just said. There are families who do not need these trainings, who don’t have time to do these trainings, or they’ve learned their rights, they’re able to navigate things um without them, and that’s great. A lot of our trainings for the school system are more focused on families learning how to advocate for other families. So that’s a little bit of a different thing, right? I mean, people usually are going into it trying to learn how to advocate for their own child, but they’re also trying to pay it forward and help other families, which is kind of an added layer, right? Um, so our volunteer advocacy project training is a special education advocacy training teaching people how to advocate for other families of kids with disabilities for school services. And so it’ll have a session, it’s usually two hour, a two-hour session once a week for 12 weeks, offered online. And we’ve done it in Spanish and Korean. It’s been replicated in other countries around the world in different in different iterations, exactly to get at what you’re saying. Some people can do it in six, you know, or four six-hour sessions, like you know, multiple Saturdays in row. Some people prefer the two-hour sessions, some people prefer in person versus online. Um, it’s really whatever the agency, how they want to provide it for families, but it goes into greater detail about what is an evaluation, what are the components of an evaluation, who should be doing the evaluation, how do you interpret the test results? So that’s like a whole two-hour session. And then there’s another two-hour session that really dives into what is the least restrictive environment and what are the placement options, and how do you know when one placement option is working or not working, what data do you take for that, and how do you know when to move to a different placement option and what does that look like? So it really goes more into the nuance or like the nitty-gritty of these things, right? Which some people are really interested in. I’ve met lots of families over the years who would kind of have considered themselves to be a little bit more timid, a little shy, uncomfortable advocating for their own child, and then get into it and they feel like this is their vocation in life is to help other families advocate, right? So everybody, it just depends on what you’re interested in and your time and how you want to spend it.
Amy Julia Becker: 15:21
And I know you’ve done some research on the Volunteer Advocacy Project. What have you found? What happens if you are someone who actually takes this training and learns some of these things?
Meghan Burke: 15:31
Yeah.
Meghan Burke: 15:31
So what we found is after you’ve gone through the training, you demonstrate significantly greater knowledge of special education law, greater advocacy skills, and greater empowerment. And the advocacy, I want to underscore advocacy can look different. And advocacy can get a really bad connotation in some schools, right? Some advocates are really aggressive. Um, some advocates may kind of harm that family school partnership. And the VAP, we really focus on what we call non-adversarial advocacy strategies. Okay. So we’re really trying to keep that partnership intact as much as possible. Um, we’re not talking about threatening due process or things like that. We’re talking about really meeting people where they’re at and having honest discussions about what the child needs that is grounded in data and grounded in what the parents’ rights are. So I think what we’ve also found is when we ask families who have either worked with a VAP advocate or who have gone through the VAP, is they’ve said that their partnership with the school system has actually improved after going through the VAP, which is really positive. Um, so that tells us that we are equipping people with strategies that help their child access services but are not harming that partnership.
Amy Julia Becker: 16:44
I was going to ask you about that because I do think for me, again, that word advocacy often kind of bumps up against the word adversarial. And I have found that um, and we’ve had a really great experience with the public school system. So, you know, that is part of it for me. But that for me to go in with some measure of vulnerability and say, we’re on a team to care for this wonderful child together has actually been an important part of our journey. But of course, if that’s not actually what is going on, and if you really feel like you’re for whatever reason, I also feel like many people get into an IEP meeting and they feel like the teachers on the other side of the table and the people who work for the school want more for your child than the system allows. Um, so whether, you know, well, we’ve got a program for kids like yours, and so your kid has to go into that program rather than being included in the classroom, even though there are ways in which your cid could be more uh thoroughly included in the classroom. Do you have any like thoughts on um how, yeah, maybe some non-adversarial strategies when you are arguing with your school system, but you also want to stay on the same team? Obviously, maybe not threatening is one of them you’ve already mentioned, but anything else?
Meghan Burke: 17:59
Yes. I mean, it’s really keeping things grounded in the data, right? Like if somebody is trying to argue that a child should be moving to more self-contained classroom, it’s like, well, what’s going on in the gen ed classroom? What are the data telling us? Is the child making progress? Let’s look at their progress reports. Are they having behaviors? Is it negatively impacting them? Are they not getting what they’re supposed to be getting? Because if you’re if you’re seeing that in the data, then something needs to change. But if the data are not saying any of those things, then you’re like, well, then why would me make this move, right? So it’s trying to take the emotion as much as you can out of it. Yeah. And really being led by, well, what data do we have to make some of these decisions? And if we don’t have the data we need, we need to be collecting it, right? So we can make really informed choices.
Amy Julia Becker: 18:51
I love that. That’s really helpful. Um, one other question I had
Amy Julia Becker: 18:54
was just whether uh I know you’ve done some work on different uh skills needed for advocacy or different um issues that arise for the kids who are in school settings versus like the transition years or even adult uh services years. Is there anything that like kind of characterizes advocacy in a different way or anything you feel like parents need to know about the distinctions there? Yes. Yes.
Meghan Burke: 19:21
And how remind me how old is your daughter?
Amy Julia Becker: 19:24
Penny is 20. So we’re in um a transition program. Yeah, we’re in that stage.
Meghan Burke: 19:30
Yeah, it is. I would say like the tenets or the skills of advocacy that you’ve developed in the school system still apply, but adult disability services are more complicated. They’re they’re unlike school system services, which are all housed within the school, which for the most part are housed under the Individuals with Disabilities Education Act or idea, like that’s the primary special education law you’re looking at. Adult disability services are fragmented. And so they’re housed by multiple different agencies that have different laws guiding them, different regulations, different people. And even though they’re separate, they intersect in weird ways. And people are usually not talking to one another about what that looks like. And so the onus really falls on the parent to understand not just one law like special education law, but multiple different policies and to kind of pick and choose, well, which one of these applies to my child? And do I have to apply for SSI supplemental security income first before I apply for the Medicaid waiver, or what does that look like? And that’s another difference is you know, if you qualify for special education services in the school system, then you should receive them. Adult disability services, you could qualify for the Medicaid waiver, but if your state has a waiting list, you’re waiting for those services, right? And so it’s it’s a it’s a different ball game.
Amy Julia Becker: 20:58
Yeah, yeah. Okay. Um, and is there anything that from an advocacy perspective that you would say to parents who are in that situation of the overwhelm of multiple different things I need to learn? I no longer have this team, whether they seem adversarial or on my team, they’re still a really clear set of people. Um, yeah, is there any uh kind of um, I don’t know, advice or uh research that tells us start here or at least do this. I don’t know.
Meghan Burke: 21:30
Yeah, I mean, I think some of the advice is try to learn as much as you can, right, about these different adult disability services. And because it’s so dense, you might have to go to sessions multiple times to understand okay, this is what SSI is, and this is what SSDI is, and this is how they are similar and how they’re different because it is complicated for everyone. Um, but I think the other thing is there are families ahead of you who have already gone through this, and so really the best resource. We have is each other. Right. I mean, that’s that’s where you kind of hear the real thing of like, oh, here’s what my experience was, here’s what you should expect, here’s the paperwork you need. That is the most helpful. I’ll give an example. So when you apply for SSI for adults at age 18, and you go through the process and you and you apply for that financial supplement, um, 66%, so two-thirds of people get rejected at that first one. So as another, as an a personal example of that, my brother who has Down syndrome, my mom applied for SSI with him, went to the Social Security office, presented him, he has Down syndrome, so it’s clearly visible. A few months later, he gets rejected. Why? Because we’re not, there’s no confirmation you have Down syndrome. Yeah. So she had to send in his karyotype to show like, yes, there is an extra chromosome. He has Down syndrome. And it’s but my my point is that this happens to most people that they’re rejected two-thirds of the time, even though they really they’re not trying to be fraudulent or get around the system, they really do qualify for this service. And so what it’s testing is your knowledge, right? Um, but it’s also testing your perseverance and your time and your ability and your advocacy and your empowerment to kind of push forward and appeal the decision. And so it makes it a lot harder, right? And you wouldn’t know those things by just listening to a webinar from SSA about SSI. You would know those things by talking to another family.
Amy Julia Becker: 23:39
Gosh, all of this is so helpful. And as I’ve said to you um before, when we’ve talked, I could just go on and on, but I do want to be mindful of the realities of the time of the people who are listening. So I’m
Amy Julia Becker: 23:49
just gonna read some of the things that I wrote down while you were speaking as far as kind of next steps that people might be able to take if they’re either facing that IEP meeting or if they are thinking about advocacy more broadly, or if they’re in the more position um that I am as far as the adult services and transition times. So one is just the bringing someone with you, which I think actually relates to that idea of like, I loved what you said, our best resource, the best resource we have is each other and just getting connected to other people who are one or two steps ahead of you, maybe 10 steps ahead of you in this journey. Um, but I also loved your advice in terms of take breaks if you’re overwhelmed or just need to go to the bathroom in an IEP meeting. The phone a friend to yell or cry, so you don’t do that at the at the table. What a good um piece of advice. Bring, you know, postpone or stop if needed. And it struck me that again, certainly in states where the law says get your IEP ahead of time, do that. But even if you that’s not by law, you could always request it. Um so be prepared for that meeting in terms of what we need to talk about, what I’m concerned about and questioning. Um, I loved that write a parent impact statement, which is somewhat related to that. Um and then you’ve also got given us this information about both the volunteer advocacy project, right? The VAP that you are doing, um, as well as the um parent training information. Yeah.
Meghan Burke: 25:14
Oh yes, PTIs. Yes, the PTIs.
Amy Julia Becker: 25:17
PTIs. Okay, but wait, so tell us Assist because I had that written down and didn’t ask you about it. So that we’ll we’ll make sure we get that into this as well.
Meghan Burke: 25:24
Yeah, so Assist is our 24-hour training. And we actually have Assist, which is all done in English, and Assistier, which is done in Spanish. Um, and they’re both 24 hours, two hours a week for 12 weeks, but they’re only about adult disability services. And so, really looking like every week, one week will be SSI, another week will be Medicaid waivers, another week will be um financial planning, special needs trust, and able accounts. And so that’s really helpful too in getting a more global understanding of all the different types of adult disability services that are out there. So you can kind of say, okay, here is kind of the smorgasboard of services, which one applies to my child.
Amy Julia Becker: 26:05
Yep. Yep, I know. I should sign up for that one.
Meghan Burke: 26:08
Okay.
Amy Julia Becker: 26:08
Um and honestly, the the one time I have done something like that in the past, I did it with a friend, just to your point that sometimes um both in terms of having conversations and holding ourselves accountable to showing up to these things, like doing it together, uh, can be really um an encouragement as well as a prompt to actually do it. Is there anything you would add? Just as we, I mean, again, you’ve given us a big long list of wonderful um next steps we can take if we are needing and wanting to better advocate for our children, whether they are three years old or 33 years old. Um, is there anything else you would add?
Meghan Burke: 26:44
Yeah, so I’ll I’ll add two things. Um, one with the VAP, in terms of you’re talking about going with someone. I once had a couple who the they were a married husband and wife, have a child with Down syndrome and autism, and they made the VAP their date night. They would come and then go to the go to go out to dinner or go grab a drink after. And I thought that was such a lovely idea because then they both got the information because typically we see the moms who are the ones coming to these trainings and and learning the information. It was such a great unifying example of them both coming. Um but then something that sparked this for me that I think is really important to say is that the the meetings are vulnerable. Like my son is going into middle school in the fall, and I I’m very nervous about it, right? Like I have a lot of anxiety. And at our transition meeting, I really didn’t want to cry in front of the new middle school, but it is bringing up a lot of emotions, right? And so, and I didn’t cry until the end when they made a really beautiful compliment about him, and then I started tearing up. But you know, it I have a really close friend who is a few years ahead of me, has three children with disabilities, is one of the savviest advocates I know. She had a really hard issue with the school at one point, and we were talking about it on the phone, and she said, you know, Megan, I just do not want to cry at this meeting. I really just don’t, I don’t want them to see me cry. I said, you know, let’s call her Mary. I go, Mary, what’s the worst thing that’s gonna happen if they see you cry? Like, you know, don’t don’t hold yourself to like this is hard, right? And they’re human beings just like you’re a human being. So if you cry, you cry, and that’s what it is. And she called me after the meeting and she said, Well, you know, I just I just got emotional and I started crying. And I said, Well, what happened then? And she said the special ed director started crying too. And I thought, you know, if that’s what you if that happens, we hold ourselves to such a high standard. Like it’s okay, you’re human, and we’re all human sitting around that table. And as somebody who was a special ed teacher who trains pre-service special ed teachers, nobody should be sitting around that table who’s trying to take away a service or hurt a child, right? Like we’re all there with altruistic um intentions. And so if you do cry or you let your emotions go a little bit, like it’s that’s okay. If you don’t do the phone a friend and it happens at the table, that’s okay.
Amy Julia Becker: 29:24
I have cried in many IED meetings. Yeah, and often, often again, with gratitude and with a sense of solidarity with team members, and sometimes because it’s just been hard. And um, yeah, I I think it’s just good to remind us of all of our humanity amidst this, and um, that there are good things that are possible for our kids in both the school system and beyond, but there also are some real barriers, and hopefully I am certain your work is helping us to at least address those barriers, if not surmount them entirely. So um thank you very much for the work that you do and for sharing so much um just real hard-earned wisdom with us. Oh, sure. Thank you for listening. If this episode was helpful, we would love for you to share it with another parent or caregiver who might need to hear it. And if you want more information from Megan about the things that we’ve talked about today, we added links in the show notes, first of all, to samples of parent input statements for IEP meetings. So you can go and click on those to get a reference. We also linked to YouTube videos from the Assist program, and we linked to the Volunteer Advocacy Project Training. We mostly called it VAP in the episode. That project is specific to Tennessee, so it’s not going to be relevant to everyone, although uh there still might be some helpful information in there. And there is at least one parent training and information center in every state and the country. So we encourage you to look that up and reference it wherever you live. Thank you for being here today. Take the next step as a resource from the Hope Heels Network, a collective of thought leaders offering honest and hopeful wisdom to help people flourish in the good and hard parts of their stories. To learn more about the work of Hope Heels, visit Hopeheels.com. I want to thank Jake Hanson for editing this episode and Amber Beery, my director of content, for producing the show. And I want to thank you for being here. I hope you leave this time with encouragement to start with delight, connect a community, and take the next small step toward a good future for your family.
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