Episode 5: Advocating for Yourself with Megan Russell

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- Hi, my name is Chet Cheddar

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and I'll be your host for a closer look

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where we'll explore the most current

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and relevant topics covered

in Frontline Initiative,

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which is a magazine produced

by the National Alliance

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for Direct Support

Professionals in partnership

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with the University of

Minnesota's Institute on

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Community Integration.

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If you're wondering what

Frontline Initiative is all about,

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it's about the work that direct

support professionals do on

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a day-to-Day basis as they

support people with intellectual

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and developmental disabilities.

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I'll be talking to authors

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and taking a closer look

at current practices,

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tools, and resources.

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So buckle up and let's hear

what the authors have to say.

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I am thrilled to have our guest

here today all the way from

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Lexington, Kentucky is Megan Russell.

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- Hello.

- Welcome to the show.

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We're tickled to have you.

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Megan has written an article

for Frontline Initiative,

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the issue called Advocating and Voting,

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and it is called now The Call

for Social Justice is for You

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and the People you support.

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It's a really captivating article

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and I would like to just

kind of jump right in

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and hear a little bit about you, Megan,

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and what got you into

working direct support.

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- Sure. So I have lived in Lexington for

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over 15 years and I was

working at a, a childcare place

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'cause my degree is in

elementary education.

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I was working, doing

teaching and wasn't happy

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and my sister was in this field

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and she had a direct support

professional for a couple

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of years and she said, you

know, why don't you just try

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and take a chance and do this job?

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And I thought, well, I've never,

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I don't have a special education degree,

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I don't think I'm qualified,

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but I decided to take a leap and I did.

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And I was, I've been in

this job for 10 years now.

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So I was paired

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with the person I support

currently 10 years ago

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and I had a couple of other

people I was paired with

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as well to support.

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And it just really, it

was a, it was a good match

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for this one person

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and I went through all my

training, had my own credentials,

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and found out

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that there was a new way

about two years into my job,

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found out that there was a

new way that I could continue

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to support this person but

not do it at an agency.

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And it's called,

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and it was through the supports

for Community Living Waiver

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and here in Kentucky

there are a few waivers

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and ways to support

people in the same sense,

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except it's just private

and not at an agency.

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So that's what I decided to

do is to take that route and,

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'cause I had this really good

connection and I loved it.

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And I left the agency

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and worked independently

through the Supported

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for Community Living Waiver

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and started working specifically

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and exclusively with Jay is his name.

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So, and I was working full-time.

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- Alright, tell me about

what, what are the roles

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that you play when you're supporting Jay?

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- When I support Jay, one

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of the things I really

focus on is presenting him

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as a person that is much

more than their disability.

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A lot of people look at disabled people

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and think that's all that they are.

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And so first couple years I

worked with Jay, I really tried

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to build self-esteem for him

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and also the people that I was

encountering in the community

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to show that this is a, a

man he is at 21 at the time,

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he's a man in his twenties.

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He loves Disney, he loves watching

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and memorizing clips on

YouTube about Disney or songs.

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He has a bright smile,

he has a amazing soul.

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He's really giving and,

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and so I would really try

to break down the, the image

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that people have in

just looking at a person

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and saying, Hey, oh, he has autism

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and he's nonverbal, which

are also part of Jay, but,

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and I've told him several

times, your disability is part

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of you, it's not all that you are.

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And so one of the thi one

of the ways that I, I like

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to describe him when, when

people meet him is, you know,

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and I, I really try,

I'm kind of the bridge.

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So I'm a direct support professional

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as my main title for Jay.

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I also am a community

access guide for him.

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I'm also an employment specialist for him

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and I'm also a personal assistant for him.

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And what all those, those

are about four huge titles,

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but a lot of what that is is wearing a lot

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of hats within that.

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Jay is an IS 30 and he

struggles with communication.

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And so a lot of what I'm doing

in the community is helping

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him use his communication device

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and talking to public, you

know, in, in public situations

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to help him grow socially.

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I also, you could say I

am like a personal trainer

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because I really, we have goals,

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we have all these specific

goals for Jay, not just in areas

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of communication, but like health.

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And he has a job.

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And so I'm his employ

employment specialist.

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In addition to being a

personal trainer, I'm a teacher

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to him, I am teaching him

daily skills, life skills

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that he struggles with.

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I'm also an employment specialist, which

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that I help him find a job

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and I, I teach him how to have job skills

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and I meet with employers,

potential employers.

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I meet with several people and,

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and help Jade develop professionally.

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And a community access guide

is helping him build natural

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supports in his community that are

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with people like in the library

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or like in a fast food restaurant

that he goes to regularly

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or people that have, that are non-disabled

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that can want to help Jay

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or maybe spend time with Jay.

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And we build that

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through wherever we go

on a consistent basis.

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So that's anywhere of interest.

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It could be, you know, like I said at the

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library somewhere to eat.

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Jay loves going to a store that has,

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it's called Half Price Books.

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I'm not sure if everybody's

aware, but it has a lot of DVDs

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and, and, and CDs, which

are really J things

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and they know us there.

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So we, it's interesting that we spend

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so much time away from the house

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and that's kind of a conception

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and I feel like that people

don't know about this job

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because we are kind of grouped with

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a CNA or other individuals

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that really don't do

multifaceted work with,

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you know, the, with the client.

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Not just physical work and helping them,

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but like social skills

in mental and emotional

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and all different kinds of levels.

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- I think you do do

really multifaceted work.

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One of the things I

would say about that is

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because you're working, going out

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and doing things in the

community, kind of one-on-one,

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people often don't see DSPs,

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they just don't see the

position, they don't see

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what the work is that you're doing.

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They don't understand

that you're, you know,

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maybe helping somebody at home get up

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and get ready for the day.

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But then you're also helping

them, as you said earlier,

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find a job, find a job

that's a good match,

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and then being their job

coach until they learn the job

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and can do it more

comfortably, either with

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or without support.

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So employment specialist

also helping him in doing

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community activities, getting involved,

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making relationships, is that correct?

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- Yes. Friendships and

mentor relationships

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and just natural, organic

way of, of building

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a way outside of his home

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because to be honest, it would

be great in, in Jay's mind

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and I think in a lot of other

disabled people's minds to

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just kind of be a hermit at their house

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because it's safe and it's comfortable.

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And so it's a, it's really a challenge

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and that's what a lot of

direct support professionals

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we're always out and about.

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And we're really trying to

keep them out of the house

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and build natural fun

things for them to do

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and help them see that

there's a quality of life

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that they can have that is not

terrible and it isn't boring.

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And there's, there's a lot of variety

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and there's a lot of

life to be found outside

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of their comfort zone to be honest.

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And even it becomes their comfort zone

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because it's, it becomes

part of who they're,

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- I first met Megan through

Janet Wilson, who works

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for N-A-D-S-P, the National Alliance

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of Direct Support Professionals.

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She had met Megan back in May

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of 2023 at the N-A-D-S-P advocacy

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advocacy symposium.

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And she got to know her because

they are both from Kentucky.

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And as a part of the symposium,

we have one day of training

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and the second day you

actually get to speak

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with legislators and

you go there as a group.

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And Janet and Megan

were in the same group,

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so they got to know each other.

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Megan, can you tell us a

little bit about the symposium

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and what, what did you learn

like on the first day of it

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and what was your

experience like when you got

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to speak with legislators?

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- Yeah, whenever I started

the, the symposium,

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I really decided to kind

of just, the first day

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of the symposium was

really comforting to me

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because what a lot

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of the information we went

over was really advocating

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for this job as a, as a DSP.

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It can feel really isolating

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because we're with our person

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that we're supporting constantly

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and it isn't like we're a school

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or you know, a office where you have

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co coworkers.

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This is a very unique job.

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And so for the first day, a

lot of what we talked about was

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our job and how the, the need for

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recognizing the importance

of this job for the world

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and also for legislators

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and just, you know, hitting on subjects

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that really I could resonate

with where I was like,

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you know, yes, like this is

really needed to talk about

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and we need to advocate for ourselves.

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And you know, it was

just nice to be unified

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or, you know, across the United States

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because like I said,

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it can feel really isolating

even in your own city.

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So I felt that the first day,

you know, was so, so good

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for me to, you know,

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to remind myself again why I love this job

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and the how I should be respected

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and really, you know, addressing

the problems within our,

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our current government system with

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how we're viewed in this job.

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And so talking to legislators

the next really felt not

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as intimidating as I thought

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because they, they really

prepared us with how

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to kinda like a couple

of strategies to talk

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with the legislators.

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And also too, like, it

was just really, it,

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it was, it was about,

you know, a strategy,

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but it was really about

telling your personal story

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and what you do in your

job and, and thinking.

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And the way I thought about it,

for me, especially since my,

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my person Jay is nonverbal,

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he really couldn't say the kind

of like the types of things

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and the, with the way that

I say it and the expression

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and everything like that, I

was really kept him in mind

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or I really kept him in mind

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and thought, you know,

I'm speaking up for him,

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I'm speaking up for how

I support him this job

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and how important it is to have

someone like me that really,

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truly loves him and wants to help him.

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Like a family member.

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- You are A DSP who has

not only a bachelor's

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of science degree, but a

master's degree, right.

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You're a very well educated person.

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So a lot of times people see

this as an entry level job,

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but this can be a career job

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and especially if we can get the benefits

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and the, the wages to match,

which is what you needed

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to advocate for when you

went to the symposium

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and talked to legislators.

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- That's correct. Yes.

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- I don't mean to put

words in your mouth. No,

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- No, no, no.

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This is good. This is good.

Okay. So that's correct.

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That is the things that I've learned

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as I have made this my career.

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I started out, when I was going part-time,

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I was getting my master's

part-time and then getting

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and doing this work with Jay part-time.

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And yes, like when I graduated

I decided I really love this

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work and I made it my career.

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And the more that I've learned as it

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as I became full-time,

that there's, there's

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so much lacking of benefits.

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There is no retirement,

there is no vacation,

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no sick leave and things that you,

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I guess you don't really think

about when you're working

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part-time someplace.

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And then when you become full-time

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and you realize, wow, you know,

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these things are very needed.

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And we talked about that

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with the legislators the

second day, especially

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because I've had some health

problems over the last few

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years and I had to go to extremes

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because of the lack of insurance

to pay off the, the debt

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and, and to arrange to take off work

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and to do different things

that you don't really,

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you wouldn't have a problem

with, I guess in a job

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that is recognized.

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So the lack of, of vacation and sick leave

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and benefits have really, the more

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that I've done this job full time,

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which has been since 2020,

so almost four years now,

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I've had to realize the amount

of planning that you have

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to do for financial

things like vacations and,

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and then, you know, when un

unpredicted things happen when

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you're sick, you have to decide, you know,

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I'm gonna work an extra day

to kind of make up for that

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or this is what I'm gonna

have to do to, to make up

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and make the the difference

because it's difficult

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and you don't realize it un

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unless you're in it, I guess,

like how much it adds up

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and the insurance as well.

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I mean, you know, that's just

part of my monthly budget

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and you realize when you're,

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when you choose your

insurance every single year,

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you realize just how expensive it is.

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So yes, I, I don't have those things

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and it really does affect the quality

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of my life to be honest.

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I have to decide if I'm

going to work an extra shift

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or a couple of extra shifts

or maybe get another job

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or do a side thing

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or whatever I need to do to

make ends meet for the days

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that I wanna go on vacation

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or the days that I'm sick

that I didn't plan for,

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didn't predict, you

know, like we're human.

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We can't, we can't plan

for every single second.

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But, and also too, like if we

want to do things on a whim,

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it's very hard

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and that, that is really challenging for

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the kind of job that we do.

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We give our heart and soul to and,

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and our, it's a, it's a

very, it's a amazing job.

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It's multifaceted, but

it also can be tiring.

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I mean it, and so you really

do need to pour into yourself

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'cause you're pouring out

so much to your person

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or the community or all the

things that we're doing,

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those things that take me

away from this job I have

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to financially plan for.

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And, and it just makes it challenging

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and we don't wanna get

burned out in this job.

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That's the worst thing

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that can happen is you getting

burned out and on all levels

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and your client or your person

you're supporting suffers.

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- Megan, when you, you

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and Janet spoke with

legislators, what were one

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or two key things that you

made sure to communicate

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with them that was important for you

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to advocate for yourself?

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- So it was a personal story of mine

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and I, over the last couple

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of years have had some health problems

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and I had to seek a lot of treatment.

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And the thing that has really

bothered me with all of

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that is I had to create payment plans.

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I had to take off of work

because of these appointments.

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I had to work extra shifts to,

like I said earlier, to kind

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of make up the difference.

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And it was just so stressful

and I explained all that

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and how that is, that really could be

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alleviated if we were to

have better health insurance.

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And even the opportunity to have that

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because I'm paying out of

pocket of my own in addition

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to paying for all of these

things that I needed.

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I almost had to have a very big surgery,

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thankfully I didn't, but

surgery costs her thousands

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of dollars and you know, it's just

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for a direct support professional

working full-time, even

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with a person like I am,

that gets a higher rate

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with being under the waiver.

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It's still so challenging

to have health scares

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and you, so I explained

that, I explained that

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to legislators and I made it

personal because it's my story

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and you know, I'm, a lot of

people probably would've quit

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because they, you know, found another job

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where they're getting health insurance

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because these kinds of things

happen as we grow older.

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And also too just for the

fact of being respected

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because, you know, it feels

like a disrespect when a job

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or, or legislators

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or our government does not view the job as

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with the same importance of an of one

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that has benefits in retirement

and things of that nature.

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- Yeah. And when you say

when you get a higher rate,

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you're meaning you get

a higher rate of pay

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like hourly wage than maybe

somebody who's working

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for an organization, correct?

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- That's right. That's right. Okay.

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And it's, yes, so I get

a higher rate of pay

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and that's actually the second

thing that I, that I talk

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to them with the legislators about is

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because I get a higher

rate of pay, I'm able to

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function at a better level for

my life and pay all my bills

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and you know, do all the things.

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And one of the things

that Jay's mom has said

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before, 'cause she's, they've,

they've dealt with a lot

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of different workers

throughout the years that a lot

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of turnover and it's been so hard for Jay

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because he gets used to different

people and then they leave

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because, and to be honest, probably

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because the pay was terrible.

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And so now with having

me, the kind of investment

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that I've done in this job,

a lot of it is, has been

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because I can actually

live off of this job

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and I've, I'm able to not have to work two

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or three jobs and have the

amount of energy and, and,

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and focus that I can to, to want

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to pour into my person

that I'm supporting.

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And I talked to legislators

about people in agencies

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that are, that are having,

you know, health insurance

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or other benefits are only

getting paid like $13 an hour.

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- There will be a symposium in 2024.

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We're still working on the dates for that.

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Megan, would you encourage

direct support professionals

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to attend this year?

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- I would, I would

highly encourage them to,

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like I was saying earlier, it was just so

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unifying to talk to

people in different states

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and to work with people in

different states that our DSPs,

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because like I said, it, it is hard.

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It's, there's not a lot of

continued education training for,

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for this job if you are

working in this job also,

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like I said, it's isolating

and so it's really great

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and you feel encouraged

that, you know, you're,

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you're in this job.

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There are other people that

care about their people

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that they're supporting.

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'cause unfortunately, like

you, there are some people

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that just treat this as a job and you see,

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and you're around those kind of people

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and you get discouraged and,

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and I guess like if you

don't have a community,

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you can lose your, your stamina at times.

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And so like having a, a

symposium like this, it just,

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it reminds you why you're

doing your job, the importance

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of it and the importance of

community through this job

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because we're so, it's

a very unique position,

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right? You're not, and so yes, I

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- Would, you're not the only one doing it.

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Right,

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- Right.

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And exactly.

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And that is that, you

know, builds you up again,

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you know, coming into it, I

was intimidated thinking about

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talking to legislators.

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It's not something I do every day.

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I've done a couple of times

throughout my 10 years

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of working with Jay because

his family is huge on advocacy

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and it's, that's been a

really cool growth in myself

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to be honest as well.

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But, you know, talking

to legislators, for me,

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just the, the whole thought

at first was intimidating

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and it really did not

turn out to be the way

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that I thought it would.

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And it was nice to be paired with somebody

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and it was nice to kind of have

an idea of how to hit points

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and things like that, that we learned

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before we even were

paired with legislators.

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And you know, like I think

some people can have a

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sour outlook

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or jaded outlook that, oh,

this doesn't matter if we talk

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to somebody, you know, they're

not, they're gonna listen

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but not really listen.

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But you never know. And,

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and like I said earlier,

like if you're advocating

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for your person and thinking

of that, that as your mission

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and you're like center

in this whole thing, then

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how else are they gonna learn?

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It's not like they're,

you know, in the job.

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And so you really have to,

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to speak on their behalf to be honest.

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And I, I wouldn't have

done that, you know,

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like it's not like I would've

gone up to Frankfurt here

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and on a random day and

done that, you know?

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So it's like, it's already,

it's planned out for you

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and that's so needed I guess

is what I'm trying to say.

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- So in the symposium, what

Mick is talking about is

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soapbox is the, the

platform that N-A-D-S-P uses

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and soapbox goes ahead

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and makes all of the

visits with the legislators

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and they're all on done online.

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So all you have to do is show up on Zoom

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and you get a chance to

meet with the legislator

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or sometimes you meet with their

assistant if the legislator

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is not available.

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Megan, what would you say, like the title

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of your article is, now's the Call

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for Social Justice Now the

call for social justice is

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for you and the people you support

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we're usually pretty good about advocating

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for the people we support,

but, but not ourselves.

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What would you say to the

person who's like, gosh,

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I don't know, I don't,

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I don't feel like the legis I have a voice

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or a story to tell the legislator.

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What would you tell them

about telling their story?

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- I would tell them that their

job matters and they matter,

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and this is something,

this is a job I feel like

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that's hidden from society sometimes.

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That people, you really,

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unless you're in the,

the field of social work

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or special education, it's really,

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you don't really know about

what goes on behind the scenes.

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And I would, I would

encourage this person to tell

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how much they pour into their, their job

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and I would encourage them to,

you know, speak on the fact

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that this job is, is,

you know, we're working

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to make it a standardized

code, making the world aware of

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what A DSP means because

everyone knows what a nurse's aid

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or a teacher or whatever means,

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but a direct support professional.

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Even when I meet strangers out in public

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and they're like, oh, so

you're with this person, what,

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what are you, you know, are you his mom?

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I've gotten that question a

lot, your sister, his sister.

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Anyway. But when I explain

that, what I usually have

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to say is a caregiver

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because no one knows what a

direct support professional is,

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and we're working to advocate to make

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that known to everybody.

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And so I would tell tell

the person like, you matter.

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And so your story matters.

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Like your individual,

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what you do in your individual

daily life with your people

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or your person that you're

supporting is unique

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and this job is unique

and you wanna explain it

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and you want people to have a view

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and a little insight into what

every day looks like for you

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because you're, you're important,

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- Right?

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The work that you do is very important

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and it's for legislators

to hear your story

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and how some of the lack of benefits

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of a living wage really affect your job

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and affect your family.

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As you said earlier, there

are lots of DSPs who work two

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or three jobs just to make ends meet

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and they give up other

things during that time.

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You know, they give up

time with their family,

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they give up time for self-care, rest

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and sometimes eating healthy.

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All of those things that sometimes

we as DSPs, you know, we,

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we sacrifice those things

just so we can pay the rent.

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Many DSPs are also on get

things like food stamps

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or other subsidies just to make ends meet.

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And it would be really nice

considering the type of work

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that DSPs do, DSPs do, which

is really complex as we've,

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you know, been saying if they

got paid a living wage so

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that they were able to live the life

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that they would like to live,

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- Right?

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And at the end of the day,

what the heart of this job is,

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is putting the person

you're supporting first.

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And as we all know, like when you're tired

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or when, like you're saying,

if you're working so many jobs

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and you're discouraged because

there's no health insurance

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and you've got all this stuff to plan out

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and you know, you're not

being able to take care

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of yourself, that affects the clients,

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that affects the person you're supporting.

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That is the, that's the root.

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And so if we really

want to make this a job

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that is known by the world,

then we need to make sure

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that we're getting all

the support that we need

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as direct support professionals

so that we can do our job

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to the best of our ability.

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And that also includes

having more trainings.

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And I know that, like with the

symposium, that's an example,

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but you know, a lot of

people can't even afford,

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the families can't afford to

send their workers to have,

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you know, a continuing

education training like that.

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And we, that that just

needs to be included.

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I know that it's included

in other jobs, you know,

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that it's just part of

what you do every year.

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And it's, it's things like that

where we need that, we need

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that encouragement, we

need that accountability.

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We need tho those reminders,

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- Right?

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And, and to get training

that's not just that

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that is required by the

state to stay licensed

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or to to hold your job,

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but that will really teach

you to do your job better

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so you can really hone

in on some skills, right.

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So I wanna thank you so much, Megan

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for being a part of today.

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It's been a lot of fun talking with you.

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I really encourage the PO

squatters out there to join us

Speaker: 00:29:30

for the 2024 symposium.

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Keep an eye open in the

frontline initiative.

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We will have the dates and,

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and everything in there

in the next edition,

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which is on advocacy

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and voting as far as when

that symposium will be.

Speaker: 00:29:45

And there is no cost to register for it.

Speaker: 00:29:48

We know of course that you might have

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to take some time off from

actually doing the work

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that you do with the persons you support.

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And so I would ask to

work with your supervisor

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to see if you can, if

they would support you so

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that you would be able

to attend the training,

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which is like a half

day of the day before.

Speaker: 00:30:04

And then to be available the

next day when you get a chance

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to, to talk with the legislators.

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I have an update. The dates

Speaker: 00:30:12

for the N-E-D-S-P

symposium have been chosen

Speaker: 00:30:14

April 30th and May 1st.

Speaker: 00:30:16

The training is generally in

the afternoon on the 30th,

Speaker: 00:30:19

and then your time with legislators

Speaker: 00:30:22

or your elected officials could

be any time throughout the

Speaker: 00:30:25

day on May 1st.

Speaker: 00:30:27

You can go to the nsp.org

website and look for advocacy

Speaker: 00:30:32

and that's where you find

more information about the

Speaker: 00:30:34

advocacy day and you can also register.

Speaker: 00:30:37

Look forward to seeing you there.

Speaker: 00:30:39

So thank you so much pod squatters

Speaker: 00:30:42

and we will see you next time.