Episode Transcript
Speaker 2 00:00:59 And good evening. Thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of the show. Thanks so much for tuning in Charlene doll is my research team. Hello, Charlene.
Speaker 3 00:01:14 I'm out here in here over here, here. You're there. Good evening, everyone.
Speaker 2 00:01:18 Um, we have several people in the studio and outta the studio as well. This week, we are speaking to Sherry Wallace with, from the Wallace group who will be talking about several things. One of them being their class, number 39 <laugh> wow. Of the partners in policy making, um, and joining her will be three of the class, um, participants that have worked hard in this I'm understanding Adela Hudson. Good evening. Adela. Good evening, Sam. Thanks for having me. You are so welcome. And, um, Cassie case Callis, sorry. Yep, yep. You got it. Hi Sam. Hello. And then Nicole LNT, is that right? Loudin. Loudin. Okay. Hi. Nice to see you. Hi, thank you guys so much for coming. I really appreciate that. And I appreciate you guys being here. Um, Sherry, are you here?
Speaker 3 00:02:18 I am here. I can hear you. Can you hear me?
Speaker 2 00:02:20 We certainly can. So great. Thank you so much for, um, being the outside participant <laugh>
Speaker 3 00:02:28 Yes. Right.
Speaker 2 00:02:30 I wanna go round first by, um, let's see, Sherry, why don't you just give a little description of what policy, um, partners in policy making is. And since people who've just tuned in may not have heard you before.
Speaker 3 00:02:48 Okay. Um, be glad to, it is a, um, a training program that individuals 35 individuals are in this program from September to may. They spend, uh, Fridays and Saturdays, uh, once a month in this program, skipping December because of December always has so many other things going, but these are individuals with disabilities as adults, or these are parents raising children with disabilities. And the dynamic is so powerful in each class, as they are studying different things. They hear about the history of how people with disabilities have been treated. Then they talk about school and what are their responsibilities as, as parents with educators and getting a good education for their children. And then they talk about the county and what does the county do to be part of, uh, helping families with disabilities? Basically the, the county supplies, the money Woohoo, but, uh, also, um, then they talk about housing and they talk about jobs mm-hmm <affirmative> and they talk about how do you connect with your legislator in March?
Speaker 3 00:04:08 We go to the capital and have, although in the past couple of years, that's been very difficult if the capital has been closed or things have been shut down, but that is a very powerful experience there. Then they, um, in April, they're hearing about the, um, con congressional, uh, decision makings, that decisions that are made on a congressional level in Washington, DC. And then this month in may, it's the very last class, it's the graduation, but they will learn about opportunities that they can be leaders in their own community, because the goal is that they become better advocates for themselves and others with disabilities. And this is, uh, these are three people from this class that were just outstanding in how they took the ball and ran with it. And they are all you'll hear. They are all doing, uh, very well to advocate for disabilities and to bring people's attention to, uh, we want individuals to have, uh, as many opportunities as any citizen. So their stories will be fascinating.
Speaker 2 00:05:23 Yeah. And I think, I don't know. I mean, we've had you on before. I don't know if every state, I can't remember if every state has something like this, but at,
Speaker 3 00:05:34 At one point every state had a partners in policy making program. Um, this is where it started and it spread to Denmark and Ireland and Australia. And it just really caught hold cause of the value of speaking up. And, uh, the training teaches you to speak up in many different avenues for yourself, if you have disabilities or for your children. Um, but at one, at one point, every state had a program. That's not the case. Now it ends up being a very expensive program because, uh, you bring in experts. And so these people in the studio have heard experts from around the country who really have stood up and been very strong advocates in their lives.
Speaker 2 00:06:25 And, you know, I can't imagine that, especially now, it just feels so much like each, each state really needs a program like this. So yes, I, I do wanna start out by having each person, um, introduce themselves, please, if you would go around and introduce yourself where you live and the connection you have to the dis to disability. So Adela, do you wanna start?
Speaker 4 00:06:49 Uh, yes. Thanks Sam. Mm-hmm <affirmative>. My name is Arbella Hudson. I live in St. Paul and I'm a person with disabilities who advocate for myself and others. I've been diagnosed with multiple head injuries, formally known as traumatic brain injury, but today they identify it as BI really. I'm glad to be here.
Speaker 2 00:07:15 Huh? I, I, I didn't know. They, they changed that so good to know. Yes.
Speaker 5 00:07:20 I'm Nicole Loudon and I live in maple Grove and I am the single mom of a four year old with autism. And I'm a very big advocate for school inclusion.
Speaker 6 00:07:34 I'm Cassie Callis. Uh, I live in Plymouth with my husband and we have, uh, three children with a condition called fragile exa syndrome.
Speaker 2 00:07:43 So I, I need to just take a step a minute sideways here, Nicole. I used to live in maple Grove. Oh, really? Did you hear about the bear?
Speaker 5 00:07:52 <laugh> I'm always hearing about the bears on the neighborhood apps that are into the bird feeders <laugh>
Speaker 2 00:07:59 I was rooting for the bears. I was like, go bears. You know, everything's gotta eat
Speaker 5 00:08:05 And don't leave your bird food out. Don't leave your bird next to the bears home. That's right.
Speaker 2 00:08:09 That's right. So anyway, well, okay. I, sorry, I digress, but anyway, thank you for that. Um, well I'm sure that this is, has taught you guys a lot of different things. So can we talk about, first of all, go around and I don't care what order you go in, so you guys can decide amongst yourself, but talk about why you decided to sign up for partners in policy making and, you know, by that program.
Speaker 5 00:08:37 Well, so it's Nicole and I decided to sign up because I had an awful IEP meeting with my son's schools. Well, several school districts actually, and I was incredibly frustrated with the lack of creativity and the lack of inclusion opportunities that they were giving him. And I was just so incredibly frustrated at four o'clock in the morning at my computer, um, Googling and thinking to myself, this can't be how the system is. And it brought me, Google brought me to partners in policy making. And it has absolutely been life changing, not only for myself, but for my son too.
Speaker 7 00:09:24 Who next,
Speaker 6 00:09:26 Um, I'll go. Okay. Yeah, this is Cassie. Um, so mine is kind of a, a long journey. Um, I lived on the east coast with my family for many years and we moved to Minnesota, um, in 2019 mm-hmm <affirmative>. Um, and previously we had never had any issues with the school. Um, my, my boys had pretty much everything I could ask for them and more, um, and when we moved to Minnesota, we encountered a very different situation and I found myself really struggling, um, to advocate for my sons. I just felt like I didn't have the knowledge that I needed. Um, and so I found pacer probably from Googling. Um, and I did a bunch of webinars, um, through pacer and I attended a, um, early childhood family learning summit. Um, and that was super educational for me, just learning about IEPs and different ways to advocate. And, um, after participating in that, the leader sent out an email, um, mail, um, advertising partners in policy making. And I was super thrilled because I was just looking for more opportunities, um, to learn more so that I could better advocate. So I think I got the email and applied like in the same minute. Um, so I had to wait many months to find out if I got in because I applied right away. Um, but yeah, that, that was my story.
Speaker 7 00:10:47 Okay.
Speaker 4 00:10:49 I'm Mark D. Hudson and I been diagnosed and I've incurred multiple head injuries starting at birth before they had a name for it. And I came in contact in my interests in policy making through a disability writing program that I was a part of, and I was encouraged to go further. And I had a personal interest myself because I'm a recipient of a waiver program. Currently. They're making tremendous adjustments to that program now. And I was having trouble with services and didn't know where to go, what to do. And when I heard about policy and what I could learn there and the opportunities I jumped on it, and I took the advice of friends, family, and colleagues.
Speaker 2 00:11:52 Excellent. Thank you. Um, so Nicole, yes. Um, I, I can relate to some of this frustration in school stuff because one of my sons, um, is dyslexic and has a processing disability. Although, you know, shouldn't have been a problem really, but they made it a problem. Um, they're
Speaker 5 00:12:14 Good at, at that <laugh>
Speaker 2 00:12:16 Can you tell me what, you know, what things did you feel were not being met?
Speaker 5 00:12:21 So my son, um, really struggles with, um, social skills and emotional regulation. He does not have a cognitive or language delay, and really the only choices that the school was providing me was an exclusionary classroom for him just because he was diagnosed with autism and that was not an appropriate fit for him. I felt like, um, I felt like he could be successful in the classroom, um, along with a pair of support or his, um, behavioral therapist support, which is what I was asking for. And the answer was just, no, we don't do that. Um, and despite continuing to advocate for him, um, the answer was just no, that they don't, they don't do that. And that was my only choice was to put 'em into an exclusionary classroom. So I eventually just said no, and I declined an IEP for him. Um, and just enrolled him as a mainstream student in preschool. And he has been super successful. He needed maybe eight weeks of support from a para. And then now he's just on his own, um, and completely in a mainstream classroom being successful, a typical four year old.
Speaker 2 00:13:43 And it's interesting, you said eight weeks of a para support, but that's like, if you think about it, that's like nothing in the lifetime of schooling that the kids will have. Um, and sometimes it does amaze me with what it, it is true. There's a little bit of work, you know, on the short end, but in the long run, it will work out much better if they would just take the, you know, take the little bit of work that it would take. Um, so let's see which one has, uh, children with fragile X.
Speaker 6 00:14:19 That would be me
Speaker 2 00:14:20 Cassy mm-hmm <affirmative> I, can you tell me what fragile X syndrome is?
Speaker 6 00:14:25 Yeah. Um, it's an intellectual disability. Um, it is, um, it has a wide spectrum. It's very similar to autism in that way. Um, it is the only known genetic cause of autism actually, although it doesn't always, uh, cause autism. Um, but it, it looks very similar. There's a lot of sensory processing, um, struggles, um, O obviously cognitive delays. Um, there's a lot of behaviors, communication problems. Um, so it's, it's a, it's a wide spectrum. Some people, you know, you maybe wouldn't know right away. And then there's some people that are, you know, more severely affected. And, um, you know, can't communicate both of my sons struggle with communication
Speaker 2 00:15:07 And you have two or three,
Speaker 6 00:15:09 I have two sons and a daughter and all three of them have fragile X
Speaker 2 00:15:13 And what are their ages?
Speaker 6 00:15:15 Um, my oldest is about to turn 11 and I have an eight year old, and then my daughter just turned five.
Speaker 2 00:15:21 So this is a genetic.
Speaker 6 00:15:23 Yes, it is. Yes, I'm a carrier. So in my case, I passed on, um, the fragile X and it, and it fully mutated is what it's called in all three of my children. Although my daughter is developing typically so far, um, because it's, it's fragile X because it's on the X chromosome. Yes. Um, so my daughter has a, a healthy X, um, you know, given by my husband that compensates for her affected X, whereas my boys obviously don't. Um, so they are more severely affected.
Speaker 2 00:15:52 Mm. When you say more severely, could you give an example?
Speaker 6 00:15:57 Sure. Um, so I mean, I don't like to talk about high or low functioning or scores or levels mm-hmm <affirmative>. Um, but just to kind of illustrate, um, my boys are more similar to, um, toddlers in a lot of ways, um, when it comes to safety awareness, um, and some of their cognitive abilities. Um, my oldest son struggles a lot with sensory processing, uh, in particular auditory processing. Uh, he wears noise, canceling headphones. He struggles, um, in public places. Um, very, very sensitive to sounds and crowds. Um, and my middle son is, is much more outgoing and doesn't struggle as much. Um, he's more sensory seeking, so he loves like rough and tumble play and basketball and people, and, and is very social. Um, but they both still have that, those cognitive delays, um, and just sensory issues in, in different areas.
Speaker 2 00:16:49 What aspects, um, of the program from the, you know, if it's the presentations or the, the interact actions, um, and meetings with legislatures, or what were the most interesting, uh, surprising and, and caused you to think differently about yourself and others? So who wants to start,
Speaker 4 00:17:15 I'll start. Okay. Uh, the interacting with they acting with the presenters and being in this program, mm-hmm, <affirmative> not only did the presenters present. They also allowed for use of what was taught, doing the presentation, helping to clearly understand how to use the skills and training that was presented in the partners program, which help encourage and build leadership and advocacy skills, both for the parents, caregivers, uh, the individual with disabilities, and a lot of empowerment come from that. And self-confidence as well in the disability arena, as far as where to get information, how to get information and training in many other aspects of disability on the information. And what's really out there
Speaker 2 00:18:31 Did this, did a lot of the stuff you learned, surprise you about what your rights were and, and things like that.
Speaker 4 00:18:40 Yes, a lot surprised me because I was unaware because the people that are in authority and that's responsible for making sure that, uh, we get that type of information caregivers and people that are in the field providing delivery of services, it's just not an open book. Mm. Yeah. And therefore it hinders, uh, a certain part that could be more beneficial to the individual, whether you helping them, or if it's yourself like myself.
Speaker 2 00:19:21 Abella, I'm curious cuz um, I, and I I'm, I too, am not a immune, um, when I sometimes get really frustrated, but there's, it's easy to get very angry when you're dealing with some of the people and you're trying to advocate, is there, what keeps you calm when you're advocating for yourself
Speaker 4 00:19:44 Training? Of course, and having knowledge and self awareness awareness of the individual and knowledge and a lot of that obtained through various training programs and advocacy itself and going through the partners program has really enriched and informed me and being able to go to the capital and know my representation, their names, and being able to be a part of the policy process and perhaps even implement bills and meet those people.
Speaker 2 00:20:26 Great. Thank you. Uh, well Cassie or Nicole, which one wants to go?
Speaker 5 00:20:31 Um, I can go Nicole. Um, the's so hard to pick just one thing that was like the most influential well, yeah. Cause it all is just so important. You
Speaker 2 00:20:42 Can actually go down the list and, and just tell me like how these different things were influential. It's
Speaker 5 00:20:47 Fine. Yeah. So first and foremost, I think the thing that made the biggest difference for me or that I liked was just the community aspect of the class itself. Um, the other participants, the relationships that you build with them, um, and not feeling so alone. I think that's one of the big things that as a parent of a kid with a disability, um, you're out there advocating and you just feel like you're up against a brick wall all the time and you hear the word no a lot. And it's so nice to go into a ballroom full of people who understand what that feels like mm-hmm <affirmative> and who also have experiences that they can lend their hand to and give you advice. And, um, I also, I say it's like my church or like my AA that I go to every month. It's like, it's, it's just a great space to go and to be understood.
Speaker 5 00:21:44 So that's my ultimate favorite part about it. Um, the speakers are wonderful. Um, I have learned how to communicate more effectively with people that disagree with my opinion, um, rather than just continuing to shove it in their face, finding a way to work with people that, um, so you're successful and everybody gets what they want. Um, and I think the connections too, so every class we get the, you know, emails and phone numbers of these really important people and they're, we send them emails and they email us back and it's, you know, we get to talk to the people from the department of education and, um, people who are experts in public speaking. And it's, it's just great to be able to have all those resources right at your fingertips. Um, and also being very comfortable talking with a microphone. If you had asked me to do this a year ago, I would've said absolutely. No. Aw.
Speaker 6 00:22:49 So,
Speaker 2 00:22:51 Um, and, and I'll ask you the same thing. What keeps you calm in times of extreme frustration?
Speaker 5 00:22:57 Uh, wine would be excellent to that.
Speaker 2 00:23:00 Excellent. I can relate to
Speaker 5 00:23:02 That one. <laugh> um, yeah, and just, uh, focusing on why I'm there and what I'm there for and for my son and making sure I'm doing what's best for him advocating. And so he is in the least restrictive environment possible
Speaker 2 00:23:18 Cassie.
Speaker 6 00:23:20 Yeah. Um, I echo, um, a lot of what Nicole said. I, I think the community is the first thing that stuck out to me. Um, just from the very first day, the very first session I felt super comfortable with everybody. Um, you know, social situations can be kind of awkward sometimes when you have children with disabilities and nobody else does. And they're talking about things that you don't relate to or that you can't contribute to. Um, so I think just that warmth right away, um, and, and making those connections and making friends, um, for life, um, is really important because we all really need that support network as we're, um, advocating for ourselves or for our children. Um, and then another favorite is just the presenters were amazing and, and very inspiring. Um, and for me personally, I came into this, um, very burnt out, um, with advocating and I, I am still burnt out.
Speaker 6 00:24:20 It's like a full-time job. Mm yes. Um, but I am inspired and I'm educated much more than I was before. Um, and I think for me, there's only so many times that I can get an evaluation or a piece of paper that describes my children as severely affected or severe, or, um, severely discrepant or, you know, see, see the, the age in number of months that they are. Um, mm-hmm, <affirmative>, mm-hmm, <affirmative>, you know, cognitively and it, it can wear you down. Um, and so one of my favorite presenters, I remember him saying that he doesn't call people with disabilities, people with disabilities. He calls them, um, people with, uh, possibilities. Ah, um, and that was Patrick Schwarz. I dunno if I said his last name, right. Yeah. But, um, and that, that sticks with me. I remind myself of that all the time. And he showed, um, you know, pictures and slides and gave data on, on all the children and adults he's worked with and how successful they've been and how they've been fully included in school.
Speaker 6 00:25:23 And these would be people, children like mine that are quote unquote, severely affected, and yet they are still able to do so much more and able to be included. Um, another speaker on customized employment was super inspiring for me because, you know, he said there isn't one person that he's worked with that he couldn't find a job for. And it's it just, you know, I have high hopes for my kids. I see their potential. But when you're constantly sitting around tables with people that are telling you otherwise, you know, it, it takes its toll. So I've been completely inspired. Um, I see more potential in my children. I see more possibilities for them and I know what the options are now. Now I know, you know, what I can advocate for in school and how to do it. I know what community options there are, you know, waivers from the county.
Speaker 6 00:26:17 I know that they can get a job. I know that for sure now. And coming into that, I would've thought, I don't know if my kids can work or live alone and now I'm like, yep, we're gonna do it. I know the way. And you know, um, so it super inspiring, super hopeful. Um, and just so informative there, we get slides after every session, um, that, you know, we can come back to and that our resources forever now. So it's, it's not just educational while you're in the conference, but it's for your lifetime. So yeah, I mean, I could go on, but I won't <laugh> yeah. <laugh> entire
Speaker 2 00:26:51 Big shelf now full of resources
Speaker 6 00:26:53 That they've given us,
Speaker 2 00:26:54 But I, where do you, where do you dig down deep when you have sources of frustration and time that you have three kids? Yes.
Speaker 6 00:27:02 Good
Speaker 2 00:27:02 Grief. And, and it's one thing to have three kids and one with a disability. But if you have, you know, all three kids with different things going on, mm-hmm, <affirmative>, it's gotta be a lot. So what do you do?
Speaker 6 00:27:16 Yeah, it is. That is something I am still working on and figuring out I don't have it all figured out yet. Um, I have little motto. Um, my favorite one that's gotten me through the last couple of the years is, um, what stands in the way becomes the way. Um, that's my favorite quote. And I continually tell myself that and when there's an obstacle or someone tells me no, what school or I feel frustrated, I just remind myself and okay, what are we gonna make out of this? How am I gonna make this better for my kids and their classmates with disabilities? And you know, what change am I gonna, um, make out of this? And, um, breathing I've been working on breathing lately. So <laugh>
Speaker 2 00:27:53 Yeah. Yeah. And it can be so frustrating. And I imagine, you know, being, you know, I teach technology and things to people with disabilities, and I can tell you that you're taught, you know, you're, you're raised in this certain, even if you have a disability, certain realm of things, and you're taught if the person is gonna be successful or not, and there's this line and there's this measurement and the, and then, um, there's a way to teach, but how many people teach outside the box is what I like to call it. Mm-hmm, <affirmative> how many people are willing to go and do something different. And especially in your situation of the, of a public school situation, which I do think that, you know, most kids, I think should be integrated into classrooms. There can be exceptions where it can be hard. Um, but I really feel like a lot of kids that, you know, even weren't and in, in the same classroom as other kids, 20 years ago, even, um, more of them are being put in the same classroom and more of them should be.
Speaker 2 00:28:56 Yes. Um, I think I give the teachers credit because I will say I teach generally one person at a time. Sometimes I have more than one, but I will tell you that I can't imagine having 24, 27, whatever kids and teaching outside the box for just one or a couple, or, you know, I think that would be very difficult. I'm I think that's what you have your parents for, but how many teachers utilize that? So, um, I'm glad to see that you you're getting so much. I, I wonder if each of you would go around and tell me one really positive story that you have done or seen happen in the way you've been advocating after this, you know, as you've moved through this program,
Speaker 4 00:29:47 I'll start. Okay.
Speaker 8 00:29:48 You are so brave. You just go for it.
Speaker 4 00:29:51 Don't you <laugh> Sam. I was listening to you. Um, when you spoke on you teach people with disabilities, mm. Technology Uhhuh <affirmative> and that's a real, uh, touchy piece. Uh, I, I had a child with disabilities. This was before pacer and many years ago, but today and policy for me, I'm an adult with developmental disabilities and from partners I've been able to network, uh, there's been a story that, um, the writing class classes that I took, the style of teaching and their approach to the individual from the neuro diverse thinking perspective, which enabled me to grow and to understand my disability, not my disability, but my challenge better. And to live, uh, life of choice and partners, I learned what inclusion really means and what it is, and having a network as such. There's multiple persons with disabilities, not just parents, but many other areas that I've been able to make choices on, where I want to direct my advocacy or the advocate. And I've become a much better advocate and attitude, uh, where to find information what's really out there what's available. And another thing about the presenters, we can always call or go back, set up a meeting. It, they opened themselves up that it was more than just the class they're always open, but things are different for an adult with disabilities. And for me, and particularly people sometimes, uh, misunderstand me, uh, people have, uh, little knowledge because it's a disability that you can identify or you don't see right.
Speaker 2 00:32:31 Certain disability.
Speaker 4 00:32:33 Exactly. And if you are not dedicated to the individual, uh, oh, you will know. And a lot of times, you know, there's feelings of, uh, rejection and, uh, a number of different things that comes with brain injury that comes with an adult with disabilities.
Speaker 2 00:32:57 Thank you. Um, Cassy or Nicole actually, I'll pick on you next. Perfect. <laugh> why don't you tell me something that has, that you feel like you've done in a positive role at going through this class, something you've noticed that you were able to achieve?
Speaker 5 00:33:14 Yeah. So my son, luckily I was able to advocate for him to be included in a mainstream classroom and he is successful there and he's gonna be going to a mainstream classroom next year, too. Um, just as a typical student, but something that, um, I always think about in this class has, uh, made me consider, is thinking about advocating on a much larger scale mm-hmm <affirmative>, um, that it's not just about my son, it's about all the other kids with that. This is happening too, and that, um, they're being put in exclusionary classrooms, um, when they shouldn't be. And so I actually just recently ran for, and got elected to a school board in St. Paul congratulations. And so I really hope to ex use my knowledge and especially of inclusion and help that school start thinking about those things differently in the way that they're educating their students. Great.
Speaker 2 00:34:13 Cassie.
Speaker 6 00:34:14 Yeah. So on a more personal level, I, I think, um, my oldest son who struggles a little bit more and is in a more restrictive setting in school, um, I was able to advocate successfully for a lot more inclusion for him, um, than he's ever had well that he's ever had in Minnesota. Um, and he's been so successful and happy in those, um, settings with his general education peers. Um, and I think it's had a positive effect on the culture and environment in his school. Um, I think the school that he's in, in particular really struggles, um, with inclusion and with, um, creating an environment, um, that's supportive of people with disabilities. Um, so I think that that's one really positive thing that's come out of this. Um, I, I got some good tools that I used to get him more inclusion that, that he deserves. He still deserves more, but, um, I'll take it for now. <laugh> um, and it's, it's just been baby steps. Yes, exactly. Yeah. I'm working on it. Um, and I think just the confidence I've gained. Um, I spoke at our school board meeting on Monday just a few days ago. Mm-hmm <affirmative> um, and I am hopeful for the outcome and I think I'll continue to, to be able to have the confidence to do more things like that, to advocate for the students in his program as a whole, um, and not just my son. Great.
Speaker 2 00:35:43 So why don't you each go around and tell me, um, why would you recommend this program to others and who do you think would benefit most from this type of program who wants to start?
Speaker 5 00:35:59 I would say anybody who, you know, has a child with a disability and who feels alone. Um, that was one of the very big things that brought me to this class is that it it's very isolating, have a child with a disability. And, um, this class just really provides that community for you. Um, I can't say it enough. I will never forget the first class that we had and they had previous participants. Um, and they said by the end of this class, you're gonna have friends for life. And I think all of us were just like, yay. Yeah, yeah. <laugh> um, <laugh> And here we sit at the end of the class and it's so true, um, that we all are gonna be friends and resources for each other and our kids are gonna play together and all these things because of, because of partners in policy making. And that is seriously priceless for me. Mm-hmm
Speaker 2 00:37:03 <affirmative>
Speaker 6 00:37:04 Yeah. I, I mean, I don't know who, I wouldn't recommend it for. I mean, any parent of a child with a disability, any self advocate. I mean, there's, there's so much value in the course, um, that, I mean, I've, I've already told any, anybody I know that has kids with disabilities, I've told them about, um, this opportunity. Um, this is the handbook, like when you have a child with a disability or you're a self advocate, you know, I'm speaking from a parent perspective, so you don't get a handbook. You know, when, when my son was diagnosed with fragile X syndrome, I had to go on Google. Like I had never heard of it. Mm-hmm <affirmative>. So I had to educate myself about his disability when he was in school, I had to learn like, what is an I E P nobody pulls you aside and says, you're gonna do this early intervention.
Speaker 6 00:37:53 Now you do an IEP, and this is the process, and this is how it works. And this is what your rights are. And this is what your child's rights are. There's. I mean, there's no handbook, you're just, you're thrown into it. And then on top of that, you have the chaos of your daily life and raising your children. Um, so it's hard to even find the time to educate yourself. Um, so this goes from, you know, as Sherry said, it's school, it's it's employment, it's county services, it's housing. It goes to the legislative led level. So I've made connections with my Senator and representative and, um, it's, it's the guidebook for the whole journey. Um, so it's, it's what every parent needs, I think, um, because it is really hard to access that information. Mm-hmm <affirmative> I did not know that there were waivers, my kids could be on, um, I was fighting for things that I kind of thought were a good idea, but like, this has given me the affirmation that actually, yes, this is your kid's right. And this is why it's their right. And this is how you get it. Um, so like I said to me, it's just the ultimate like handbook, um, for disabilities. So I've already recommended it to, to a lot of people. Um, and I hope anyone that's listening will check it out because it is, um, yeah, so worthwhile
Speaker 2 00:39:10 And Adela, why would you recommend this program to somebody?
Speaker 4 00:39:15 I would recommend partners in policy making to anyone who has a family member or anyone that's directly delivering services and to individuals with disabilities themselves and particularly, and, and especially those that are not immediately identifiable, which falls in the range of developmentally differently, thinking differently processing because the network that's available, the individuals that's there that has disabilities themselves and work with others with disabilities, it would, uh, enable them to understand and know the resources that's out there available and how to use those resources. And this program has enriched my life has improved my quality of wellbeing as well as open doors and allowed me to be able to be involved with other organizations, with adults, with disabilities and advocate for them as well.
Speaker 2 00:40:39 Thank you. Okay. Who am I gonna bust for? Not sounding their phone. No, it's
Speaker 6 00:40:43 Me.
Speaker 2 00:40:45 It'm just kidding. Sort of <laugh>, you know, the thing is I thought I did. I swear. I thought I did, you know, what's so funny is I had somebody who, who came on this show and he ran a cable TV, um, program. He should have known better. Yeah. And he didn't silence this phone, so it's all good. I'm turning it off now, everybody we've all been there and done it. I just thought I would just <laugh>, you know, I'm the, I'm the teacher, someone's gotta do it. Right. Who did that? <laugh> um, can we talk a minute about the, the day of the legislature, the capital, um, does anybody wanna talk about what that was like for them and was it different than what you expected and if so, how?
Speaker 6 00:41:30 Yeah, I, um, I was not expecting to be so well received. <laugh> um, I think you hear a lot about politicians and like, you know, things don't get done and yeah, I just, I didn't have a whole lot of confidence. Um, you know, when I reached out to my, to my people, um, but I got responses immediately. I got appointments and my Senator and representative in particular took a lot of time with me and really cared about what I was saying. Um, and like I said, have continued to follow up with me. So I was very surprised about that. Um, and I, I didn't think about it the way it was presented to us that you, you can be a resource for these people. Like they don't know about these issues necessarily. Um, they don't know about the ways that disabilities are affecting families, the way that education is, um, not being run properly when it comes to, um, special education.
Speaker 6 00:42:31 Um, so they don't have, you know, they, they can't know about every issue and I never thought about, well, Hey, like you could just make a connection with this person and then they can call on you when an issue comes up. Um, I just never thought about it on a more personal level like that. Um, so that was something I learned and I did make good connections. And I think, you know, you, you look at them as politicians sometimes, but they are people. And a lot of times they, you know, sometimes you wonder, yes. Right, right. But, um, my experience was positive and I think, you know, people can get burnt out over time, but I think the people that I met with they care, and that's a lot of times why you get into a job like that is because you care. Um, so I was really encouraged and, and surprised
Speaker 2 00:43:15 Adela. What was it like for you being at the Capitol? What did it surprise you? And if so, why
Speaker 4 00:43:23 Sam having a brain injury? I met with the wrong legislator. Nevertheless, this person listened, I felt heard, uh, the issues was addressed and did not even advise me that it was, it wasn't the legislator, uh, of my, um, area. Oh, wow. In St. Paul and I learned from that, that I am, and people are being heard. There are people there that do care. There are policies and legislation and people working with those things to try to make a difference and understand what it is that they can do to change things or meet the needs of disabilities as a whole. They are there,
Speaker 2 00:44:23 Nicole, it sounds almost like yours was a little tougher.
Speaker 5 00:44:27 Me my experience. Yeah. So, yeah. Unfortunately this is gonna be my plug for, we need to pay people more that take care of, um, kids with dis disabilities. So my PCA had absolutely quit. So I did not have childcare that day. Oh. So I was unable to attend that day.
Speaker 2 00:44:46 You should have brought 'em. I,
Speaker 5 00:44:47 I, I suppose I could have, then, like you take care of him for a few hours, see how it goes, brought him
Speaker 2 00:44:52 And turned him loose in the office and said, okay, this is a day in my life.
Speaker 5 00:44:57 Yeah.
Speaker 2 00:44:59 But, uh, yeah, so that, that must have been hard, but, um, you know, I'm not sure what Sherry thinks of this, but I do encourage you guys to bring your kids to things like if, if not like short meetings, knowing that you may not get, um, a ton out of it. But I think the, the, these people don't always see all these different disabilities. Yeah. And I really think that's beneficial for them. They don't see what the parent goes through. They hear your stories, but it's not the same as, as watching, uh, Sherry, I'm curious to your comments on or what your thoughts are on that.
Speaker 3 00:45:43 I really like the idea. Not only does it give your child a sense of, this is part of the world mm-hmm <affirmative> or people have meetings and they're all adults and you are going to this place or this place. And it just helps introducing them to the rest of the world. Right. But, uh, you also, a big part of partners is in the word partners in policy making that you are, we all go through life and some people are, are easily are partners. They get it right away. They really wanna help you. And then other people are, Ugh, they sort of ignore you. And those don't one that need to hear really wanna hear your story. Mm-hmm <affirmative>, but you still want to eventually treat them as if they are going to be your partner someday. And the whole thing about, um, at partners, you learn the popper, product protocol, sorry, protocol to interacting with legislators, you use, you use the right words.
Speaker 3 00:46:52 Also you send thank you notes. Mm-hmm <affirmative> and that's all part of really introducing yourself to their world. Certainly if you have your son or daughter with you, you are giving them a chance to interact and, and see that's also part of your world. Um, and it's, yeah, I think it's respectful of them and respectful of your situation, that they are part of what you're talking about. And clearly you can make it, so it's an, um, an easy interaction, but still make it possible for them to get a taste of, of, uh, getting to know your son or daughter. Um, one thing, just in talking about that whole theme of partners in policy making just the story of one individual picking on maple Grove. Again, her daughter, her son was in, um, uh, kindergarten and she came into partners just about to beat up that kindergarten teacher.
Speaker 3 00:47:57 You don't understand blah, blah, blah. You're not on my side, but the theme of partners comes through over and over again. She finally realized, you know, I am not, um, the, that, that kindergarten teacher is not my enemy. They are really, uh, after the same thing and they end, she ended up, she said, I'm the one that has to change. And I, and she ended up with, by January, really beginning to have a, um, a good relationship with that teacher. And it ended up of course, much more beneficial for the student. And, um, that's just part of what partners talks about. Certainly you go to legislators or you go to the IEP meeting, which you, as a parent are in charge of mm-hmm <affirmative>, that's what a lot of parents don't realize, right? It's their meeting and they are in charge of, but you also want to, with all those naysayers, whether it's a school board or the county board, or that teachers in the IEP meeting, you want to treat them that they will eventually become a good partner with you because you'll remind them of the whole, the bigger issue and what, what that's all about.
Speaker 3 00:49:21 So I think bringing your child to the meeting, um, you, you could definitely bring things that will keep them busy. So you could have the meeting, or maybe you make sure it's just a short meeting, but that your son or daughter is part of your world and what you're talking about. And they can see how you respect your son or daughter. And, um, that's part of them getting a sense of this is seeing the potential. Another last thing, just to say real briefly, one woman said, I think she said this in the may the very last class. I thank partners because when I first started, I was, was regretting that my son was ever part of my life. Aww. She said now, and she said, I'm, I'm sorry to say that to all of you, but I now feel hope that is what I'm getting from this class. I have hope for their future. I have hope for the, the world that's going to be for them. And that totally changes a parent's attitude when you have hope for your child. And that's what I'd wish for every single parent that comes through the partners class, because that is so powerful.
Speaker 2 00:50:39 Sherry real quick. Talk about how someone signs up for the next partners and policy making class.
Speaker 3 00:50:46 Yeah. Thank you. Um, partners in policy making is, is on the internet, but you wanna get to partners in policy making M N because that's the program in Minnesota. There are many in other states, but you want the Minnesota program. It's for Minnesota, uh, parents raising children with disability or Minnesota adults with disabilities.
Speaker 2 00:51:10 But there are people who may be listening in other states now. So if they query partners in policy making, they might find and put their state initials.
Speaker 3 00:51:19 Definitely, definitely put, put your state there. Um, if, if not move to Minnesota, <laugh>,
Speaker 2 00:51:27 That's, that's
Speaker 3 00:51:28 Honors to it.
Speaker 2 00:51:30 It's that good of a program?
Speaker 3 00:51:32 It is. I wanna also say it's free mm-hmm <affirmative> and we make sure that it's easy as pie to come. We pay for your transportation and reimburse you for gas. Mileage reimburse you. If you had to have somebody else watch your kids, uh, while you were in the class, um, we pay for, uh, your meals and, and all of your training material. You're gonna go home with a whole file cabinet full of materials. And as people have mentioned, but that's, we wanna launch you into being a, the strongest advocate you can be for your children and for your community. One, um, one county in this state is committed that they have seen such changes in people, uh, in their state, in their county who have taken the partners program. They want one person from their county, every single year to be accepted into the program. And, uh, that will change. If you have hopeful, uh, assertive parent, you get a change in those kids that are being raised in that county.
Speaker 2 00:52:40 Thank you, Sherry. Just a reminder. This is disability and progress. Hey, I didn't tell you to start. Oh my goodness. And the visa express on the show are not necessarily those of K F I guess we're gonna wrap it up. So thank you guys very much for coming. Um, I really appreciate it. Um, it's been great and you guys were excellent. Mm-hmm <affirmative> thanks much for having us. Thank you for having us. Thank you. Thank you very much. You're very welcome. Good luck. And everyone, this has been disability and progress. The abuse express on the show are not necessarily those of Kathy eye or it's board of directors. My name is Sam. I'm the host of the show. Charlene doll is my research team. And if you wanna be on my emailing list, you may can email me at disability and progress with Sam, Jasmine, Sam, jasmine.com. This week, we were speaking with Sherry Wallace from the Wallace group, along with some participants, which, okay. I know we're at the end, but that's okay for the participants that were here were, um, our Abella Hudson and Cassie Callis and Nicole Loudon. And thank you very much, Sherry for putting this together. We always appreciate that. Um, it's been great. And you, you did a great job. Thank you for having us. Yep. Goodnight. Great guys.
