Inspiring Self-Advocates with Partners in Policymaking – Podcast

Jason Dorow 

Hi everyone, and welcome to another episode of the Champions of Homecare podcast. Jason Dorow here with David Hancox, David, it’s good to see you again. How are you doing? 

David Hancox 

Nice to see you too, Jason. It feels like it’s been a while. I don’t know if this summer’s just gotten away from us or what, but feels like it’s been a while since I’ve seen you last. It’s great to see you today. Hope everything’s going well in your world. Everything is great here. So, nice to see you again.

Jason Dorow 

It’s good to be back in the studio with you, for sure. 

David Hancox 

Very nice. You know, one of the favorite things about this podcast, for me anyway, is the opportunity to hear from community organizations and programs in Minnesota that are specifically designed to improve the lives of individuals with disabilities and older adults and who are sometimes also often members of the Accra community.

Jason Dorow 

Yeah, you make a great point. It’s fascinating and really beneficial to hear from some of those groups about how they are serving and supporting our local communities in Minnesota. And today we’re going to talk about a program that you, David, helped coordinate and lead at one point.

David Hancox 

We are and I’m very, very excited about this as well, because it’s a program that’s been very near and dear to my heart for well, it’s actually what brought me to Minnesota more than 35 years ago, and that is the Partners in Policymaking Program that is sponsored by the Governor’s Council on Developmental Disabilities. It’s really fascinating and you’re going to hear more about this from current voices, but it’s a really fascinating program that really targets individuals with disabilities, parents of kids with disabilities, and others to participate in competency based educational sessions about a variety of different topics and issues that are important to people with disabilities. The overall goal, and I’m sure one of our guests will speak to this a little bit, is to really increase the competency and skills for individuals in their own self advocacy capacities, and that’s so very, very important in today’s world, where there are so many special interest groups and other issues out there where people are vying for attention, that for individuals with disabilities to really find their own voice, exercise their own voice as good, strong self advocates, is so very, very important, and I was lucky enough to be a part of the initial Partners in Policymaking Program here. I helped coordinate the program between 1988 and 1995 and I also had a role in helping other states across the US get their programs started and to participate in their programs for some years. But the real pinnacle for me is the fact that my sister, who happens to have two children, my nieces, who are individuals with significant developmental disabilities, participated in the Partners Program in Pennsylvania, and that was probably, gosh, 20, 25 years ago, and the benefits of that program are still paying off in their lives. So it’s really, really a fascinating program.

Jason Dorow 

That’s wonderful. I mean, you’ve covered a lot of ground already. Why don’t we just jump right in and welcome our two wonderful guests. You want to welcome them in?

David Hancox 

I think that would be great. To tell us more about the program, more than I already have, and I know he’ll give us a lot more information, is Brenton Rice, who is the current coordinator of the program. Again, it is sponsored by the Governor’s Council on Developmental Disabilities, but Ryan will talk more, or Brenton will talk more about how the current program operates. And we’re also very lucky to be joined by Ryan Flory, who happens to be an Accra client, but who also recently participated in Partners in Policymaking. Ryan, Brenton, welcome to both of you. Thank you so much for being here with us today. We really appreciate it.

Ryan Flory

Thank you very much for inviting us here, really appreciate it.

David Hancox 

Brenton, why don’t we to set the stage, why don’t we talk with you first, tell us a little bit more about Partners in Policymaking, how it works, maybe touch on who could participate and how they go about becoming a participant? 

Brenton Rice 

Yeah. Thanks again for having me. Yep. So as David said, the Partners Program has been going on since 1987 so this is, I think, 37th year that we’ve been holding it, and it’s a leadership training program for, it’s for parents of, generally, younger children with disabilities, developmentaldisabilities. We do accept parents who’ve had, you know, older children, but we do want to get them in there as soon as possible, just to get the information, resources and training as early as we can. And then the other option of participants is you just have to be an adult with a disability. So generally, what we want them to be 18, or at least out of high school, because high school is obviously much more important. But we’ve had, we have had younger participants who are younger than 18, but we generally just say adults with disabilities.  So those are the two people that are allowed to apply. You can also be a legal guardian. You don’t have to be a parent, but if you’re a sister or, you know, a professional member of the disability community, unfortunately, you can’t participate. You have to be one of those two participants to apply.

David Hancox 

And, you know,  we mentioned, I mentioned in my my prologue comments there that the real goal of this is to increase individual self advocacy skills by providing this competency based education and training experience. And I know that Dr. Wick used to always emphasize the fact that we’re not, that Partners in Policymaking program is not attempting to create a new organization, but to provide individuals with education and training and experience with leaders in the field, so that they can go out and more effectively participate in the existing organizations and community based structures and etc. So to that end, you know, as we mentioned in the introduction, Ryan is a recent graduate, and Ryan maybe, to kind of kick things off from your perspective, could you tell us a little bit about your experience in Partners in Policymaking, what value it brought to you, and what some of your takeaways are from your participation? 

Ryan Flory 

Absolutely, I have learned that well, Partners in Policymaking has greatly changed my view on what we consider disabilities. For example, I now consider those who have disabilities, people who have differing abilities. I have seen some people who are considered to be disabled, to still be highly intellectually inclined to such areas as mathematics, science, some cultural understandings which I personally find fascinating, because I am striving to become an archeologist to my future. 

David Hancox 

Oh, wow, that’s exciting. Wow. Well, Ryan, that’s very helpful and interesting to know. Could you maybe expand just briefly to give an example of how you’ve used the Partner’s experience in your daily life, or an impact that it’s had in your personal experience.

Ryan Flory  

Yes, I can, thank you. I have learned through this program that while we are all unique individuals with our unique set of attributes and  various facets, we all have a very unique contribution to society as a whole. This, I have found, was a very important lesson that I have learned through Partners in Policymaking.

David Hancox 

It’s fantastic. Thank you for sharing that. Bouncing back to Brenton, could you talk for just a moment, Brenton, about how somebody might go about applying for Partners in Policymaking if they have an interest?

Brenton Rice 

Sure. Yep. So the program is an annual program, so we actually are just starting the new session, it starts in September. So we usually take applications around February, between February and July. So the application progress just ended. So next year, we started accepting applications around February, like I said, and so the session runs eight months. It’s one weekend a month from September to May. We skip the month of December, just for the holidays. And what takes place one week and a month for each month, for eight weeks, sorry, for eight months. And it’s from Fridays, it takes place from about 11:30am and it goes until about 9pm at night. And then on Saturday, it goes from about 8:30 in the morning until about 3pm at night. We have an online application. We also do hard copy applications, so during the application process, they can just submit those applications, and then those will be decided in early August.

David Hancox 

Fantastic. And what are the, of those eight weekends that people come together, what are the different topics that individuals can expect to participate in or hear about? 

Brenton Rice 

Sure, yeah, so we cover pretty much everything you can basically think about as it relates to the disability world. So in September, we kind of start with the history the Disability Rights Movements. We talk about the parent movement and the self advocacy movement. And then during that we also talk about person centered thinking and person centered planning. In October, we start talking about inclusive education as well as effective leadership. And then we get into, in January, we get into supported and customized employment. We talk about community organizing. And towards the end of the year, we also talk about the policy related aspects of disabilities. We go into the county and federal government’s role and how they participate and affect the lives of people with development disabilities and their families. That’s pretty much some of the topics. But there’s so much more that we talk about that I, you know, could go over, but it would just take forever but we go over a lot of things.

David Hancox 

I think one of the most interesting facets of the Minnesota program, as well as the program and Partners in Policymaking in other states, is that one of the keys, in addition to the topics that you just described Brenton, is the fact that Partners really aims to connect those participants with leaders in the disability community in the field right now from their various disciplines, whether it is the historical context, education, supported, employment, etc, it’s really an opportunity to connect the participants to the leaders in the field in those content areas. Not just for the presentation sake of that weekend, but to create ongoing connections between those individuals, so that those presenters, those experts, now become a resource on an ongoing basis to those participants. And I think that’s an incredibly valuable part of the program as well. I’m sure you would agree.

Brenton Rice 

Yeah, yeah. Unlike other advocacy training programs, I think this program focused, like you said, it focused on the big picture, creating, like, a shared vision, I guess, for the people in the program and for everyone, and just empowering participants to just become advocates themselves, and, you know, affect future change in legislature, in communities, in everywhere. Yeah, I actually do have a quote from someone if you want to read it, yeah. So it says, “When I joined Partners, my whole world changed. I began to look at my daughter from a different perspective. We realized her potential. She is no longer just a passive, non responsive girl anymore. She is a vibrant, smiling, full of life girl. If I had not done Partners, I wouldn’t be the person I am today.”

David Hancox 

That’s an incredibly wonderful sentiment, and I’m sure that that sentiment is shared by a variety of different participants over the years, so thank you for sharing that. Ryan, jumping back to you, was there a favorite weekend topic that you participated in that really stands out to you as having a greater influence for you or a greater point of interest?

Ryan Flory  

Yes, early on in the Partners in Policymaking program, Dr. Wick spoke about the history of those who are differently abled. I found that to be very unique and gave a lot of insight to many issues which we confront today. Other than that, I found that while I have found that I am eager today to continue learning about this topic and to continue completing programs. Which, pardon me, I apologize.Which benefit those who are uniquely abled and have differing abilities than the rest of our society. Um, for example, I thought it was very interesting covering the topic of autism in the United States, how there are persons who are medically considered to be autistic yet have outstanding skills in sciences and mathematics? That’s not a disability, that’s just a different ability, correct?

David Hancox 

Yeah, it’s a great perspective. Thank you, Ryan. Jason, you look like you were ready to say something a moment ago, and I think I may have cut you off. I apologize.

Jason Dorow 

You’re good. David, just a follow up to that. Ryan, it’s cool to hear about some of your favorite sessions and experiences as part of the program. What else would you like to carry forward? Or I know you talked about you want to be an archeologist, but are there  certain things in the program that you want to take action on now?

Ryan Flory  

Yes, I want to continue to advocate for those of us who are differently abled to provide the aid, excuse me, to aid with providing opportunities for those who are otherwise denied these opportunities publicly and allow people to expand upon their previous skill sets.

Jason Dorow 

On a similar note, Brenton, can you think of examples where Partners in Policymaking graduates have advocated after graduating or helped pass specific legislation make a difference in their communities? 

Brenton Rice 

Yeah, sure. And I can mainly just talk about the Minnesota program, because that’s obviously the one that we manage. But yeah, so we actually have a class 36, so this year’s class is class 42 so she would have graduated six years ago. She actually just created the Senate Bill. So she’s an architecture, she graduated with a Master’s in architecture a couple of years ago, and she actually in 2023, Senate file 999,  just got signed into law and Minnesota statute, and it requires adult changing tables to be made of a part of the Minnesota Building Code going forward. So any buildings built after that  bill was coming to law, and they have, you know, bathrooms, they’re going to require adult changing tables to be required in that building. So that’s just one of them. More recently, the parental TEFRA fees bill, I think you know, that was a big deal. Those were just originally or recently eliminated last year, I believe, or I can’t remember, but we had a lot of participants get together through Facebook and to help you know, help that bill, get that bill passed, and get those parental TEFRA fees waived. The last one I can just reference. It’s House file 687, if you want to know actual bills on but it’s an inclusive higher education bill. It’s led by a class 24 graduate as well as other partners that helped set more infrastructure for inclusive higher education for adults with disabilities as well. 

David Hancox 

So you know, on that same note, if I can just interject, I was participating in the Partners Program in South Dakota several years ago, and at the time, Mike Rounds, who is the US senator, one of the two US senators from South Dakota at the time was a state representative in South Dakota, and on the legislative weekend for partners in policy making, they did their mock legislation, where they developed testimony around specific pieces of legislation that were actually being heard in the South Dakota legislature at that time. And one of the topics had to do with services for individuals or children with disabilities in the classroom. And they did their mock testimony on that. And then Representative Rounds was so impressed that when he left the Partner session, he went to the hearing in the state capitol that was happened to be scheduled for the same day, and our Partners group got to go in and listen to the testimony that day, and he raised the issue that he had heard that morning in the Partner session, that actually changed his mind and his position on the bill, and when he presented his newly formed position on the bill, he gave Partners credit for it in real time on the floor of the South Dakota House of Representatives. So that was an immediate impact on the same day. It was pretty fascinating to watch. So just to reinforce what Brenton is saying, you know, in terms of the impacts that partners can have in real time on legislation and other public policy issues. So I just thought I would throw that in as a yet another example to reinforce Brenton’s message as well. 

Jason Dorow 

And David, it seems like this program has had an impact on so many people’s lives, at least from the Partners website, what I saw is that since 1987 more than 1100 self advocates and family members have graduated from Partners in Policymaking just in Minnesota.

David Hancox 

Well, you know. And at one point in time, Brenton, you may know this, you may be able to reinforce this. But at one point in time, there was a Partners in Policymaking program in more than 40 US states and several foreign countries. I think the United Kingdom had a program for a while. I think Ireland did for a while, and a couple of other foreign countries as well. So yeah, it’s, it’s had a really, really far reaching and it would be inappropriate for me, not to mention that this was the brainchild, if I may use that phrase, of Dr. Wick, she and a gentleman named Ed Skarnulis, kind of thought up the idea on a restaurant napkin. They were sketching it out and saying, Well, you know, what, if, what? How could we better have impact on the lives of individuals with disabilities to become stronger self advocates, to be a voice in public policy decisions and conversations and such. And it kind of sketched out, but it really largely Dr. Wick, who, then, you know, directed the funding from the Governor’s Council on Developmental Disabilities as well, and really was the driving force to get the Partners Program spread nationwide So, and I was lucky enough to have some role in that as well, but it was really Dr Wick’s vision and her energy and, quite frankly, her intelligence, that really drove the creation of this program many, many years ago, 1987.

Brenton Rice 

And like you said, she didn’t want to create a group itself or an organization itself. So she’ll actually fly to different states and start those programs, run them. But we don’t have a lot of data, because they’re not all controlled by one, you know, one nation. They all just, you know, are doing their own thing. So we don’t have a lot of data, especially international programs. But yeah, you’re correct. They were in almost every state in the United States at one point in time. Some of them have lost their funding, and then get it back, like in Illinois just recently lost their funding, or got their funding after, I think, like a seven year hiatus. But yeah, I just wish we had more data on that. But yeah, at least, at least everyone can run their own differently, because every state’s different, you know. So it’s great that they can run it how they want to.

David Hancox 

I was lucky enough, very, very fortunate and lucky enough to participate in the South Dakota program for 30 years. So that’s how long. That’s the kind of impact that Partners has had. I don’t say that from my own aggrandizement. It’s just that’s the impact. And when you think about the number of people Jason mentioned a moment ago, over 1100 people in the state of Minnesota. Well, 30 years. And they just completed their 32nd year in South Dakota, I think, and they do 30 to 35 people a year as well. So there’s another number to add to that, 1100s and it just grows exponentially when you move from state to state to state. So it’s really a dynamic and tremendously successful program. Yeah, really. 

Brenton Rice 

And talk about Minnesota. We’ve had a graduate from every single county in the state of Minnesota except for two. We’re still working on the two, but yeah, every other county has been covered. So that’s another thing is that of those 100 self advocates, not only are they getting the education, but they’re spreading it to their communities. So every county in Minnesota has been covered except for two. So even the top, you know, the top, top, furthermost away county, who might not have any idea on these services, or you know, this education is now getting that from that person who attended the program back in the day. 

David Hancox 

That’s fantastic. I didn’t realize it. That’s fantastic. Wow.

Jason Dorow 

For people wondering, there are 87 counties in Minnesota, so there are a ton that you have covered with 85 of them, given the breadth of the program, Brenton. I want to make sure we hit one more question here for people like Ryan who are probably thinking about participating or how to apply, kind of a two part question. One, and forgive me if you’ve addressed this, but for the actual program, do people have to be in person, or can they do it online? Is that what makes it available to everyone across the state? And two, when they do need to apply, where do they go? How do they get that done?

Brenton Rice 

Sure. Yeah. So currently, the way that the program is designed and the way that it was funded back in the day. You have to be in person. It can’t really be done remotely. Throughout the year we have a lot of it’s very hands on. We do a lot of small group discussions. We have round table exercises, like you’re saying earlier. We have elected officials that come and meet with them. And there’s a lot of networking and social aspects, even like we have dinner together, and that’s just a big aspect of getting to know each other, because networking with the other people in the program is a large majority of how people succeed. Because I think I forgot to let you know that we try to bring the class together, where half the class are people with disabilities and half the class are parents, and so just the getting those two groups together and learning from each other, talking together. It’s that’s what really makes a dynamic in the class. And so while you could try to replicate online, and we did do a couple virtual sessions during Covid 19, it just wasn’t anywhere how it normally is in person. So we are just doing in person right now. The Governor’s Council does offer several absolutely free e-learning training modules that pretty much replicate some of what is taught in the class. So we have an entire module just on the history. We have an entire module just on inclusive education. And then they also just got translated into Spanish. So if you are or can’t be in person for a reason, the council still offers those reources so that that’s just, you know one thing. But interested in applying, you can just go to PartnersinPolicymaking.com or just type in Partners in Policymaking Minnesota into a search engine, and the website will come up, and then you’ll see information on there about this year’s class and next year’s class, and then my contact information is out there, and there’s lots of other places where you can find it too, but yeah, just online is probably the easiest way to go about finding information about it.

David Hancox 

Excellent. Brenton, let me ask you another question, if I may, because I know you know, from my experience in coordinating the program and certainly participating in several of the state’s programs, I always tell people that, in addition to, you know, the professional value of participating as the coordinator of the program is certainly significant, but it also leaves you with another major, major I mean, it’s impacted my life in such an incredible way, that’s just because I have family members with disabilities, and my sister went through the program in Pennsylvania, as I mentioned earlier, but it had a profound effect on me and my perspectives of people with disabilities. Could you say the same thing is, is been part of your experience as well?

Brenton Rice 

Yeah, yeah, absolutely. And it just within the first weekend session, you’ll see a drastic change in people and how they come back and approach it. And we also say it’s always fun when they go back to their significant others, and they just talk and talk about it. Yeah, I just, I mean everyone, especially like, like you said, when we have elected officials come in like, they think differently, maybe a lot of them haven’t  been around people with disabilities before. It just creates an environment where you get to actually meet and get together with people and parents, and it just creates that atmosphere that, yeah, people, I mean, people learn so much from this. Yeah. I mean, that’s all I can say. But yes, I agree with you on that.

David Hancox 

It’s interesting. I love the fact that the example you gave of how the spouse goes home and talks to their significant other. And I remember one of our participants way, way, way back in year three. Her name is Sue Swenson, and she took our partners experience and did some amazing things with it. Maybe we’ll have Sue on some other time to talk about that and some of her other experiences in the disability world. But she, at the time, had a son who was in grade school with significant he had significant disabilities, and after her first weekend, she went home to her husband, Bill, and she was just going on and on and on about the impact of partners and how fantastic it was, and she said, and you know what? I’ve realized, there’s nothing wrong with Charlie. Charlie’s fine. That was her son. Charlie’s fine. We don’t have to change Charlie. We just have to change the world. And I just got such a kick out of that, because she her enthusiasm, and she just had that, that drive to go out and make a difference in the world, in the community. We don’t have to change Charlie. We just have to change the world, which I thought was great and Ryan, that kind of brings me back to a question for you. You know your experience with Partners, what are you, what’s going to be your change in the world? How are you going to use your experience and Partners to go out and and change the world, or your just your world?

Ryan Flory  

What I would say is that people who have been considered disabled, find their attributes, find what they’re good at,  find what they prefer to do. Whether that is say someone is floundering in a business venture. Maybe instead, they are much more skilled musically. Maybe they are, maybe they have some political drive. Maybe with their experience being discriminated against in their business venture. Maybe they want to make a change in the world. I hope that I can be a part of helping a person to find in which way they can be a very positive attribute to society.

David Hancox 

Wonderful. That’s wonderful. Thank you for sharing that Ryan, very much. Jason, any final questions?  I’m watching the clock here, and I don’t want to keep our guests beyond our promised time. So any other final questions you might have or thoughts?

Jason Dorow 

The only thing I’d like to do is give both Brenton and Ryan the chance to share anything else that we haven’t asked them if they came with certain thoughts that they wanted to share about their experience, their journey, that we haven’t asked you about. So gentlemen, the table is yours for a moment.

Brenton Rice 

Sure. I mean, well, Dave, when you brought that story up about, of that parent who came and said, like, Oh, my child doesn’t have a disability. So we do have a graduate that comes and gives a speech all the time, and she’s done a lot in legislator too. But the second year of Partners, she, I think she was in early Class, Class 12, and so she whatever, came to class. And on the second one, we talk about the county’s role in disability development, disabilities, we talked about waivers and all that stuff. So she was actually sending her child who was in, I guess, a stage four setting or something, 45 minutes away, to another school for him to attend class, because the school in her neighborhood, they are in her county, claimed that they couldn’t support her, and at the Partners in Policymaking session, she found out that that was not legal. They the school in her area has to create those supports for her because that that is where she lives, she can go there. So literally, the week after they had she had that Partner’s class, she stopped sending her kid there and reached out to the school, and within, like, a couple months her child was now driving five minutes to a school with all of her peers that live around her, instead of driving 45 minutes  to this special school who now could supposedly support her. And so she tells that story all the time, because she says, How would my life be? Now, if I did not know that I could do that right, think about it, her child would still be at that special school or where at a different special school. And so that was just one session that really drastically changed her life. And she said she will never, ever not just talk about how much this program changed your life, just at that one specific, you know, instance. So that was just a great one that I remember that I tell everyone about this program like, that’s how easily this program could change your life.

David Hancox 

And, you know, I used to always tell participants  at the first session each year that, you know, to make sure you don’t miss a weekend, because this program is going to change your life and the lives of your you know, if you happen to be a parent, it’s going to change your child’s life, because it’s going to change your expectation and perspective of them. And it really has. I mean, you think about the story you just shared and and others like that, there’s now 1000s of those kinds of stories that people have gone out and I used to joke and always say, you know, if you walk into a meeting with your special ed program in your in your local school district, carrying your Partners in Policymaking notebook, they’re going to sit up and treat you a little differently when they see that notebook.

Brenton Rice 

Terms that you learn in the program, if you know those little acronyms that some of the schools use, they’ll know this person knows what they’re talking about, and they might treat you differently.

David Hancox 

Exactly, exactly. Sometimes it’s just having that right vocabulary, and, you know, understanding the rules and that. So you’re right. Thank you for sharing that aspect Brenton, that’s very, very important. So we want to thank you both for being here with us today. It was a fascinating conversation. 

Jason Dorow 

David, let’s give Ryan a chance to share too. Thanks.

David Hancox 

Thank you. Thank you.

Ryan Flory

Just that I would like to know that I’m learning what has been done, learn what I can do to make a difference in the lives of those like me, those who have a different situation from myself to learn what has been done, what I can still do in the future. Marvelous. Thank you

David Hancox 

Absolutely. No no, Ryan, thank you. Brenton, also for for joining us today and talking a little bit about this fascinating and fantastic program that is available to individuals with disabilities, parents and kids with disabilities. And it originated, it’s another one of those Minnesota miracles. It originated here in Minnesota, and, you know, grew to national perspective and all that,and we’re so very proud of that. But thank you both for being here and taking some time to share with us. I know that our Accra audience will find this incredibly beneficial, and you may even see some applicants coming, you know, from the Accra community, to apply for participation in the Partners Program. So thank you both very, very, very much for being here. Yeah, absolutely, Jason, thank you for co hosting as always.

Jason Dorow 

It’s always a pleasure, David.