Shownotes
Megan Russell has supported Jay as a direct support professional (DSP) for the past 10 years. In this episode, Megan talks about her experience at the NADSP Advocacy Symposium where she learned the skills to advocate for herself and the people she supports to her legislators. She explains the importance of personal storytelling and shares that it's not as intimidating as she thought.
Read Megan Russell's story: Share link to FI story when it's public
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Frontline Initiative [update link]
Transcripts
00;00;00;00 - 00;00;35;23
Chet Tschetter
Hi, my name is Chet Tschetter, and I'll be your host for a closer look, where we'll explore the most current and relevant topics covered in frontline Initiative, which is a magazine produced by the National Alliance for Direct Support Professionals in partnership with the University of Minnesota's Institute on Community Integration. If you're wondering what Frontline initiative is all about, it's about the work that direct support professionals do on a day to day basis as they support people with intellectual and developmental disabilities.
00;00;35;26 - 00;00;49;05
Chet Tschetter
I'll be talking to authors and taking a closer look at current practices, tools, and resources. So buckle up and let's hear what the authors have to say.
00;00;49;08 - 00;00;58;05
Chet Tschetter
I am thrilled to have our guest here today all the way from Lexington, Kentucky is Megan Russell.
00;00;58;07 - 00;01;00;19
Megan Russell
Hello.
00;01;00;21 - 00;01;30;20
Chet Tschetter
Welcome to the show vertical to have you. Megan has written an article for, frontline initiative, issue called Advocating and Voting, and it is called now, the call for social justice is for you and the people you support. So really captivating article. And I would like to just kind of jump right in and, hear a little bit about you, Megan, and what got you into working direct support.
00;01;30;22 - 00;01;57;26
Megan Russell
Sure. So I have lived in Lexington for over 15 years, and I was working at a childcare place because my degree is in elementary education. I was working, doing teaching and, wasn't happy. And my sister was in this field, and she had been a direct support professional for a couple of years. And she said, you know, why don't you just try and take a chance and do this job?
00;01;57;26 - 00;02;21;19
Megan Russell
And I thought, well, I've never I don't have a special education degree. I don't think I'm qualified. But, I decided to take a leap and I did and I was, I've been in this job for ten years now, so I was paired with the person I support currently ten years ago, and I had a couple of other people I was paired with as well to support.
00;02;21;22 - 00;02;43;22
Megan Russell
And it just really it was a it was a good match for this one person. And I went through all my training and my credentials and found out that there was a new way, about two years into my job, found out that there was a new way that I could continue to support this person, but not do it at the agency.
00;02;43;24 - 00;03;21;03
Megan Russell
And it's called. And it was through the supports for Community Living waiver. And here in Kentucky, there are a few waivers and ways to support people in the same sense, except it's just private and not the agency. So that's what I decided to do, is to take that route. And because I had this really good connection and I loved it, and I left the agency and worked independently through the support for Community Living waiver and started working specifically and exclusively with Jay as his name.
00;03;21;06 - 00;03;23;25
Megan Russell
So and I was working full time.
00;03;23;28 - 00;03;28;15
Chet Tschetter
All right. Tell me about what what are the roles that you play when you're supporting Jay?
00;03;28;18 - 00;03;57;19
Megan Russell
When I support Jay, one of the things I really focus on is presenting him as a person that is much more than their disability, a lot of people look at disabled people and think that's all that they are. And so the first couple years I worked with Jay, I really tried to build self-esteem for him and also the people that I was encountering in the community to show that this is a man.
00;03;57;21 - 00;04;27;22
Megan Russell
He is at 21 at the time. He's a man in his 20s. He loves Disney. He loves watching and memorizing clips on YouTube about Disney or songs. He has a bright smile. He has an amazing soul. He's really giving in. And so I would really try to break down the the image that people have in just looking at a person and saying, hey, oh, he has autism and he's nonverbal, which are also part of Jay.
00;04;27;25 - 00;04;47;22
Megan Russell
But and I've told him several times, your disability is part of you. It's not all that you are. And so one of the thing, one of the ways that I like to describe him when people meet him is, you know, and I really try I'm kind of the bridge. So I'm a direct support professional is my main title through Jay.
00;04;47;24 - 00;05;16;23
Megan Russell
I also am a community access guide for him. I'm also an employment specialist for him, and I'm also a personal assistant for him. And what all those those are about four huge titles, but a lot of what that is, is wearing a lot of hats. Within that, Jay is and is 30 and he struggles with communication. And so a lot of what I'm doing in the community is helping him use his communication device.
00;05;16;26 - 00;05;46;23
Megan Russell
And, talking to public, you know, in public situations to help him grow socially. I also you could say I'm like a personal trainer because I really we have goals. We have all these specific goals for Jay, not just in areas of communication, but like health and he has a job. And so I'm as important employment specialist in addition to being a personal trainer, I'm a teacher to him.
00;05;46;23 - 00;06;33;21
Megan Russell
I am teaching him daily skills, life skills that he struggles with. I'm also an employment specialist, which means that I help him find a job and I teach him how to have job skills and I meet with employers, potential employers. I meet with several people and and help Jade develop professionally. And a community access guide is helping him build natural supports in his community that are with people like in the library or like at a fast food restaurant that he goes to regularly, or people, that have that are non-disabled that can, want to help Jay or maybe spend time with Jay.
00;06;33;23 - 00;06;58;03
Megan Russell
And we build that through wherever we go on a consistent basis. So that's anywhere of interest. Could be, you know, like I said, at the library somewhere to eat. Jay loves going to a store that has it's called Half Price Books. I'm not sure if everybody's aware, but it has a lot of DVDs and and, and CD's, which are really Jay things and they know us there.
00;06;58;05 - 00;07;33;14
Megan Russell
So we it's interesting that we spend so much time away from the house. And that's kind of a conceptual. And I feel like the people don't know about this job because we are kind of grouped with, a CNA or other individuals that really don't do multifaceted work with, you know, the, with the client, not just physical work and helping them, but like social skills and mental and emotional and all different kinds of levels.
00;07;33;16 - 00;07;54;19
Chet Tschetter
I think you do do really multifaceted work. One of the things I would say about that is because you're working, going out and doing things in the community, kind of one on one people often don't see DSPs. They just don't see the position. They don't see, what the work is that you're doing. They don't understand that.
00;07;54;19 - 00;08;22;17
Chet Tschetter
You're, you know, maybe helping somebody at home get up and get ready for the day, but then you're also helping them, as you said earlier, find a job. Find a job that's a good match. And then being their job coach until they learn the job and can do it more comfortably, either with or without support. So employment specialist also helping him and doing community activities, getting involved, making relationships, is that correct?
00;08;22;19 - 00;08;49;10
Megan Russell
Yes. Friendships and mentor relationships and just natural organic way of of building, a way outside of his home. Because to be honest, it would be great. And Jay's mind and I think and a lot of other disabled people's minds to just kind of be a hermit at their house because it's safe and it's comfortable. And so it's a it's really a challenge.
00;08;49;10 - 00;09;15;29
Megan Russell
And that's what a lot of direct support professionals, we're always out and about, and we're really trying to keep them out of the house and build natural, fun things for them to do and help them see that there's a quality of life that they can have that is not terrible and it isn't boring. And there's there's a lot of variety and there's a lot of life to be found outside of their, comfort zone, to be honest.
00;09;15;29 - 00;09;20;25
Megan Russell
And even it becomes their comfort zone because it's, it becomes part of who they are.
00;09;20;28 - 00;09;53;18
Chet Tschetter
I first met Megan through Janet Wilson, who works for Nadia SP, the National Alliance of Direct Support Professionals. She had met Megan back in May of two thousand twenty three at the Nadia SP Advocacy Advocacy Symposium, and she got to know her because they are both from Kentucky. And, as a part of this symposium, we have one day of training and the second day you actually get to speak with legislators and you'd go there as a group.
00;09;53;18 - 00;10;12;21
Chet Tschetter
And Janet and Megan were in the same group, so they got to know each other. Megan can you tell us a little bit about the symposium and what what did you learn, like on the first day of it, and what was your experience like when you got to speak with legislators?
00;10;12;23 - 00;10;46;28
Megan Russell
Yeah, whatever. I started the the symposium. I really decided to kind of just the first day of the symposium was really comforting to me because what a lot of the information we went over was really advocating for this job. As a as a DSP, it can feel really isolating because we're with our person that we're supporting constantly, and it isn't like we're a school or, you know, office where you have coworkers.
00;10;47;00 - 00;11;15;15
Megan Russell
This is a very unique job. And so for the first day, a lot of what we talked about was our job and how the need for, recognizing the importance of this job for the world and also for legislators and just, you know, hitting on subjects that really I could resonate with where I was like, you know, yes, like this is really needed to talk about.
00;11;15;15 - 00;11;50;19
Megan Russell
And we need to advocate for ourselves. And, you know, it was just nice to be unified, you know, across the United States because like I said, it can feel really isolating even in your own city. So I felt that the first day, you know, was so, so good for me to, you know, to remind myself again why I love this job and how I should be respected and really, you know, addressing the problems within our, our current, government system with how we're viewed in this job.
00;11;50;21 - 00;12;18;15
Megan Russell
And so talking to legislators the next day really felt not as intimidating as I thought. Because they really prepared us with, how to kind of like a couple of strategies to talk with the legislators and also to like it was just really, it was it was about, you know, a strategy that was really about telling your personal story and what you do in your job and and thinking in the way I thought about it.
00;12;18;15 - 00;12;40;13
Megan Russell
For me, especially since my my person Jay, is nonverbal, he really couldn't say the kind of like the types of things and the with the way that I say it and the expression and everything like that, I was really kept him in mind, or I really kept him in mind and thought, you know, I'm speaking up for him.
00;12;40;16 - 00;12;52;15
Megan Russell
I'm speaking up for how I support him, this job and how important it is to have someone like me that really, truly loves him and wants to help him like a family member.
00;12;52;17 - 00;13;23;27
Chet Tschetter
You're a DSP who has not only a bachelor's of science degree, but a master's degree, right? You're a very well educated person. So a lot of times people see this as an entry level job, but this can be a career job, and especially if we can get the benefits and, the wages to match, which is what you needed to advocate for when you went to the symposium and talk to legislators.
00;13;23;29 - 00;13;28;05
Megan Russell
That's correct. Yes. Well.
00;13;28;07 - 00;13;31;13
Chet Tschetter
I don't mean to put words in your mouth.
00;13;31;15 - 00;13;57;19
Megan Russell
No, no, no, no, this is good. Okay. So that's correct. That is the things that, I've learned as I have made this my career. I started out when I was going part time. I was getting my master's part time and then getting and doing this work with Jay part time. And yes, like when I graduated, I just started I really love this work and I made it my career.
00;13;57;19 - 00;14;44;19
Megan Russell
And the more that I've learned as a as I became full time, that there's, there's so much lacking of benefits. There is no retirement, there is no vacation, no sick leave and things that you I guess you don't really think about when you're working part time someplace. And then when you become full time and you realize, wow, you know, these things are very needed and we talked about that with legislators the second day, especially because I've had some health problems over the last few years, and I had to go to extremes because of the lack of insurance to pay off the debt and, and to, arrange that, take off work and to do different
00;14;44;19 - 00;15;28;08
Megan Russell
things that you don't really you wouldn't have a problem with, I guess, in a job that is recognized. So the lack of, vacation and sick leave and benefits have really the more that I've done this job full time, which has been since two thousand tewnty. So almost four years now, I've had to realize the amount of planning that you have to do for financial things like vacations and, and then, you know, when unpredicted things happen, when you're sick, you have to decide, you know, I'm going to work an extra day to kind of make up for that, or this is what I'm going to have to do to, to make up and make the difference,
00;15;28;08 - 00;15;53;27
Megan Russell
because it's difficult and you don't realize it unless you're in it, I guess, like how much it adds up and insurance as well being, you know, it's just part of my monthly budget. And you realize when you're when you choose your insurance every single year, you realize just how expensive it is. So yes, I, I don't have those things.
00;15;53;27 - 00;16;18;06
Megan Russell
And it really does affect the quality of my life, to be honest. I have to decide if I'm going to work an extra shift or a couple of extra shifts, or maybe get another job, or do a side thing or whatever I need to do to make ends meet for the days that I want to go on vacation or the days and I'm sick that I didn't plan for, didn't predict.
00;16;18;09 - 00;16;42;23
Megan Russell
You know, like, we're human. We can't we can't plan for every single second. But and also to like, if we want to do things on a whim, it's very hard. And that that is really challenging for, the kind of job that we do, we give our heart and soul to and our and it's, it's a very it's an amazing job.
00;16;42;26 - 00;17;05;29
Megan Russell
Multifaceted. But it also can be tiring. I mean, and so you really do need to, pour into yourself because you're pouring out so much to your person or the community or all the things that we're doing, those things that take me away from this job I have to financially plan for and and it just makes it challenging.
00;17;06;02 - 00;17;17;27
Megan Russell
And we don't want to get burnout in this job. That's the worst thing that can happen, is you getting burnout and on all levels and your client or your person you're supporting suffers.
00;17;17;29 - 00;17;30;16
Chet Tschetter
Megan, when you, you and Janet spoke with legislators, what were 1 or 2 key things that you made sure to communicate with them that was important for you to advocate for yourself?
00;17;30;18 - 00;17;56;11
Megan Russell
So it was a personal story of mine, and I, over the last couple of years, have had some health problems, and I had to seek a lot of treatment and the thing that has really bothered me with all of that is I had to create payment plans. I had to take off of work because of these appointments. I had to work extra shifts to, like I said earlier, to kind of make up the difference.
00;17;56;13 - 00;18;21;12
Megan Russell
And it was just so stressful. And I explained all that and how that is, that really could be alleviated if we were to have better health insurance and even the opportunity to have that, because I'm paying out of pocket on my own in addition to paying for all of these things that I needed, I almost had to have a very big surgery.
00;18;21;12 - 00;18;48;07
Megan Russell
Thankfully, I didn't, but surgery cost her thousands of dollars. And, you know, it's just for a tech support professional working full time, even with a person like I am, that's gets a higher rate. But being under the waiver, it's still so challenging to have health scares and you. So I explain that. I explain that to legislators and I made it personal because it's my story.
00;18;48;07 - 00;19;23;18
Megan Russell
And, you know, I'm a lot of people probably would have quit because they found another job or they're getting health insurance because these kinds of things happen as we grow older. And also to just for the fact of being respected because, you know, it feels like a disrespect when a job or legislators or government does not view the job as with the same importance of, of one that has benefits and retirement and things of that nature.
00;19;23;21 - 00;19;33;29
Chet Tschetter
Yeah. And when you say when you get a higher rate, you're meaning you get a higher rate of pay, a like hourly wage than maybe somebody who's working for an organization. Correct.
00;19;34;01 - 00;20;08;26
Megan Russell
That's right, that's right. And yes. So I get a higher rate of pay. And that's actually the second thing that I, that I talk to them with the legislators about is because I get a higher rate of pay, I'm able to function at a better level for my life and pay all my bills and, you know, do all the things and one of the things that Jay's mom has said before, because she's, they've they've dealt with a lot of different, workers throughout the years that a lot of turnover.
00;20;08;28 - 00;20;43;11
Megan Russell
And it's been so hard for Jay because he gets used to different people and then they leave because and to be honest, probably because the pay was terrible. And so now with having me, the kind of investment that I've done in this job, a lot of it is, has been because I could actually live off of this job, and I'm able to not have to work 2 or 3 jobs and have the amount of energy and, and, and focus that I can to, to want to pour into my person.
00;20;43;11 - 00;20;55;27
Megan Russell
And I'm supporting and I talk to legislators about how people in agencies that are that are having, you know, health insurance or other benefits are only getting paid like $13 an hour.
00;20;55;29 - 00;21;06;04
Chet Tschetter
There will be a symposium in two thousand twenty four. We're still working on the dates for that. Megan, would you encourage direct support professionals to attend this year?
00;21;06;07 - 00;21;34;01
Megan Russell
I would I would highly encourage them to, like I was saying earlier, it was just so, unifying to talk to people in different states and to work with people in different states that are DSPs because like I said it, it is hard. It's there's not a lot of continued education training for, for this job if you are working in this job.
00;21;34;01 - 00;21;55;10
Megan Russell
Also, like I said, it's isolating. And so it's really great. And you feel encouraged that, you know, you're you're in this job. There are other people that care about their people that they're supporting because unfortunately, like you, there are some people that just treat this as a job. And you see and you're around those kind of people and you get discouraged.
00;21;55;10 - 00;22;19;22
Megan Russell
And I guess, like if you don't have a community, you can lose your, your stamina at times. And so, like, having, symposium like this, it just, it reminds you why you're doing your job, the importance of it, and the importance of community through this job. Because we're so it's a very unique position. Right. You're not sure?
00;22;19;23 - 00;22;20;12
Megan Russell
Yes I would.
00;22;20;16 - 00;22;23;11
Chet Tschetter
You're not the only one doing it right.
00;22;23;13 - 00;22;47;15
Megan Russell
Right. And exactly. And that is that, you know, builds you up again. You know, coming into it, I was intimidated thinking about talking to legislators. It's not something I do every day. I've done a couple of times, throughout my ten years of working with Jay because his family is huge on advocacy. And it's that's been a really cool growth in myself, to be honest as well.
00;22;47;18 - 00;23;11;07
Megan Russell
But, you know, talking to legislators, for me, just the whole thought it first was intimidating and it really did not turn out to be the way that I thought it would. And it was nice to be paired with somebody, and it was nice to kind of have an idea of how to hit points and things like that that we learned, before we even were paired with legislators.
00;23;11;09 - 00;23;37;04
Megan Russell
And, you know, like, I think some people can have a sour outlook or jaded outlook that, oh, this doesn't matter if we talk to somebody, you know, that they're going to listen but not really listen. But you never know. And like I said earlier, like if you're advocating for your person and thinking of that, that as your mission and you're like, center in this whole thing, then how else are they going to learn?
00;23;37;07 - 00;24;02;07
Megan Russell
It's not like they're, you know, in the job. And so you really have to to speak on their behalf, to be honest. And I, I wouldn't have done that, you know, like, it's not like I would have gone up to Frankfort here and on a random day and done that, you know, so it's like it's already it's planned out for you and that's so needed, I guess, what I'm trying to say.
00;24;02;10 - 00;24;28;16
Chet Tschetter
So in the symposium, what Megan's talking about is, soapboxes the the platform that, any DSP uses. And soapbox goes ahead and makes all of the visits with the legislators, and, they're all, done online. So all you have to do is show up on zoom and you get a chance to meet with the legislator, or sometimes you meet with their assistant if the legislator is not available.
00;24;28;18 - 00;24;50;05
Chet Tschetter
Megan, what would you say, like the title of your article is now is The Call for Social Justice. Now, the call for social justice is for you and the people you support. We're usually pretty good about advocating for the people we support, but why not ourselves? What would you say to the person who's like, gosh, I don't know, I don't, I don't feel like the ledges.
00;24;50;06 - 00;24;57;28
Chet Tschetter
I have a voice or a story to tell the legislator. What would you tell them about telling their story?
00;24;58;00 - 00;25;30;15
Megan Russell
I would tell them that their job matters and they matter, and this is something. This is a job. I feel like that's hidden from society sometimes that you really, unless you're in the the field of social work or special education, it's really, you don't really know about what goes on behind the scenes. And I would, I would encourage this person to tell how much they pour into their, their job.
00;25;30;18 - 00;25;54;27
Megan Russell
And I would encourage them to, you know, speak on the fact that this job is, is, you know, we're working, to make it a standardized code, making the world aware of what a DSP means, because everyone knows what a nurse's aide or a teacher or whatever means. But a direct support professional. Even when I meet strangers out in public and they're like, oh, so you're with this person.
00;25;54;27 - 00;26;16;10
Megan Russell
What? What are you you know, are you as mom? I've gotten that question a lot. Your sister, his sister, anyway. But when I explain that what I usually have to say as a caregiver, because no one knows what a direct support professional is, and we're working to advocate to make that known to everybody. And so I would tell, tell the person like you matter.
00;26;16;16 - 00;26;38;17
Megan Russell
And so your story matters, like your individual, what you do in your individual daily life with your people or your person that you're supporting is unique. And this job is unique and you want to explain it, and you want people to have a view and a little insight into what every day looks like for you. Because you're you're important.
00;26;38;20 - 00;27;02;00
Chet Tschetter
Right? The work that you do is very important. And it's important for legislators to hear your story and how some of the lack of benefits of, living wage really affect your job and affect your family. As you said earlier, there are lots of DSPs who work 2 or 3 jobs just to make ends meet, and they give up other things during that time.
00;27;02;00 - 00;27;25;03
Chet Tschetter
You know, they give up time with their family. They give up time for self-care, rest, and sometimes eating healthy, all of those things that sometimes we as DSPs, you know, we we sacrifice those things just so we can pay the rent. Many DSPs are also on, get things like food stamps or other subsidies just to make ends meet.
00;27;25;10 - 00;27;41;25
Chet Tschetter
And it would be really nice considering the type of work the DSPs to DSPs do, which is really complex, is we've, you know, been saying if they got paid a living wage so that they were able to live the life that they would like to live, right?
00;27;42;01 - 00;28;08;13
Megan Russell
And at the end of the day, what the heart of this job is, is putting the person you're supporting first. And as we all know, like when you're tired or when like you're saying, if you're working so many jobs and you're discouraged because there's no health insurance and you got all this stuff to plan out and you know, you're not being able to take care of yourself, that affects the clients and affects the person you're supporting.
00;28;08;16 - 00;28;30;27
Megan Russell
That is the that's the root. And so if we really want to make this a job that is known by the world, then we need to make sure that we're getting all the support that we need as direct support professionals so that we can do our job to the best of our ability. And that also includes having more trainings.
00;28;30;27 - 00;28;53;17
Megan Russell
And I know that, like with the symposium, that's an example. But, you know, a lot of people can't even afford, the families can't afford to send their workers to have, you know, continuing education training like that. And with that, that just needs to be included. I know that it's included in other jobs. You know, that is just part of what you do every year.
00;28;53;20 - 00;29;02;14
Megan Russell
And it's it's things like that where we need that we need that encouragement, we need that accountability. We need those reminders.
00;29;02;17 - 00;29;23;04
Chet Tschetter
Right. And to get training. That's not just that that is required by the state to stay licensed or, to, to hold your job, but that we're we really, teach you to do your job better. So you can really hone in on some skills. Right. So I want to thank you so much, Megan, for being a part of today.
00;29;23;06 - 00;29;55;10
Chet Tschetter
out there to join us, for the:00;29;55;12 - 00;30;11;14
Chet Tschetter
And so I would ask to work with your supervisor to see if you can, if they would support you so that you would be able to attend the training, which is like a half day the day before, and then to be available the next day when you get a chance to to talk with the legislators. I have an update.
00;30;11;14 - 00;30;35;16
Chet Tschetter
The dates for the next symposium have been chosen April 30th and May 1st. The training is general in the afternoon on the 30th, and then your time with legislators or your elected officials could be any time throughout the day. On May 1st, you can go to the DSP dawg website and look for advocacy, and that's where you find more information about the Advocacy Day.
00;30;35;16 - 00;30;55;07
Chet Tschetter
And you can also register. We look forward to seeing you there. So thank you so much. Pod squatters and we will see you next time.
