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.

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Frontline Initiative [update link]

Institute on Community Integration, University of Minnesota

National Alliance for Direct Support Professionals (NADSP)

- Hi, my name is Chet Cheddar

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.

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.

I am thrilled to have our guest

here today all the way from

Lexington, Kentucky is Megan Russell.

- Hello.

- Welcome to the show.

We're tickled to have you.

Megan has written an article

for Frontline Initiative,

the issue called Advocating and Voting,

and it is called now The Call

for Social Justice is for You

and the People you support.

It's a 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.

- Sure. So I have lived in Lexington for

over 15 years and I was

working at a, a childcare place

'cause 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 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?

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 10 years now.

So I was paired

with the person I support

currently 10 years ago

and I had a couple of other

people I was paired with

as well to support.

And it just really, it

was a, it was a good match

for this one person

and I went through all my

training, had my own 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 an agency.

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 at an agency.

So that's what I decided to

do is to take that route and,

'cause I had this really good

connection and I loved it.

And I left the agency

and worked independently

through the Supported

for Community Living Waiver

and started working specifically

and exclusively with Jay is his name.

So, and I was working full-time.

- Alright, tell me about

what, what are the roles

that you play when you're supporting Jay?

- 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 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, a

man he is at 21 at the time,

he's a man in his twenties.

He loves Disney, he loves watching

and memorizing clips on

YouTube about Disney or songs.

He has a bright smile,

he has a amazing soul.

He's really giving and,

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, 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 thi one

of the ways that I, I like

to describe him when, when

people meet him is, you know,

and I, I really try,

I'm kind of the bridge.

So I'm a direct support professional

as my main title for Jay.

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 an 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

and talking to public, you

know, in, in public situations

to help him grow socially.

I also, you could say I

am 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 his employ

employment specialist.

In addition to being a

personal trainer, I'm a teacher

to him, I am teaching him

daily skills, life skills

that he struggles with.

I'm also an employment specialist, which

that I help him find a job

and I, 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 in 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.

And we build that

through wherever we go

on a consistent basis.

So that's anywhere of interest.

It 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 CDs, which

are really J things

and they know us there.

So we, it's interesting that we spend

so much time away from the house

and that's kind of a conception

and I feel like that 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

in mental and emotional

and all different kinds of levels.

- 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 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 in doing

community activities, getting involved,

making relationships, is that correct?

- 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 in, in Jay's mind

and I think in 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

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.

And even it becomes their comfort zone

because it's, it becomes

part of who they're,

- I first met Megan through

Janet Wilson, who works

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

of Direct Support Professionals.

She had met Megan back in May

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

advocacy symposium.

And she got to know her because

they are both from Kentucky.

And as a part of the symposium,

we have one day of training

and the second day you

actually get to speak

with legislators and

you go there as a group.

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?

- Yeah, whenever 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, a office where you have

co coworkers.

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, 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

and we need to advocate for ourselves.

And you know, it was

just nice to be unified

or, 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 the 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.

And so talking to legislators

the next really felt not

as intimidating as I thought

because they, they really

prepared us with how

to kinda like a couple

of strategies to talk

with the legislators.

And also too, like, it

was just really, it,

it was, it was about,

you know, a strategy,

but it was really about

telling your personal story

and what you do in your

job and, and thinking.

And the way I thought about it,

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,

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.

- You are 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, the wages to match,

which is what you needed

to advocate for when you

went to the symposium

and talked to legislators.

- That's correct. Yes.

- I don't mean to put

words in your mouth. No,

- No, no, no.

This is good. 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 decided I really love this

work and I made it my career.

And the more that I've learned as it

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 the 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, the debt

and, and to arrange to take off work

and to do different 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, of vacation and sick leave

and benefits have really, the more

that I've done this job full time,

which has been since 2020,

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 un

unpredicted things happen when

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

I'm gonna work an extra day

to kind of make up for that

or this is what I'm gonna

have to do to, to make up

and make the the difference

because it's difficult

and you don't realize it un

unless you're in it, I guess,

like how much it adds up

and the insurance as well.

I mean, you know, that'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

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 wanna go on vacation

or the days that I'm sick

that I didn't plan for,

didn't predict, you

know, like we're human.

We can't, we can't plan

for every single second.

But, and also too, 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,

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

very, it's a amazing job.

It's multifaceted, but

it also can be tiring.

I mean it, and so you really

do need to pour into yourself

'cause 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

and we don't wanna get

burned out in this job.

That's the worst thing

that can happen is you getting

burned out and on all levels

and your client or your person

you're supporting suffers.

- Megan, when you, you

and Janet spoke with

legislators, what were one

or two key things that you

made sure to communicate

with them that was important for you

to advocate for yourself?

- 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.

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 of my own in addition

to paying for all of these

things that I needed.

I almost had to have a very big surgery,

thankfully I didn't, but

surgery costs her thousands

of dollars and you know, it's just

for a direct support professional

working full-time, even

with a person like I am,

that gets a higher rate

with being under the waiver.

It's still so challenging

to have health scares

and you, so I explained

that, I explained that

to legislators and I made it

personal because it's my story

and you know, I'm, a lot of

people probably would've quit

because they, you know, found another job

where they're getting health insurance

because these kinds of things

happen as we grow older.

And also too just for the

fact of being respected

because, you know, it feels

like a disrespect when a job

or, or legislators

or our government does not view the job as

with the same importance of an of one

that has benefits in retirement

and things of that nature.

- Yeah. And when you say

when you get a higher rate,

you're meaning you get

a higher rate of pay

like hourly wage than maybe

somebody who's working

for an organization, correct?

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

And it's, 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, 'cause she's, they've,

they've dealt with a lot

of different workers

throughout the years that a lot

of turnover 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 can actually

live off of this job

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

or three jobs and have the

amount of energy and, and,

and focus that I can to, to want

to pour into my person

that I'm supporting.

And I talked to legislators

about people in agencies

that are, that are having,

you know, health insurance

or other benefits are only

getting paid like $13 an hour.

- There will be a symposium in 2024.

We're still working on the dates for that.

Megan, would you encourage

direct support professionals

to attend this year?

- 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 our 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 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.

'cause 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 and,

and I guess like if you

don't have a community,

you can lose your, your stamina at times.

And so like having a, a

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, and so yes, I

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

Right,

- 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 10 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.

But, you know, talking

to legislators, for me,

just the, the whole thought

at 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.

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, they're

not, they're gonna listen

but not really listen.

But you never know. And,

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 gonna learn?

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've

gone up to Frankfurt 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

is what I'm trying to say.

- So in the symposium, what

Mick is talking about is

soapbox is the, the

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

and soapbox goes ahead

and makes all of the

visits with the legislators

and they're all on 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.

Megan, what would you say, like the title

of your article is, now's 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, but 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 legis I have a voice

or a story to tell the legislator.

What would you tell them

about telling their story?

- 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 people, 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

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 aid

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, what,

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

I've gotten that question a

lot, your sister, his sister.

Anyway. But when I explain

that, what I usually have

to say is 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.

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 wanna 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,

- Right?

The work that you do is very important

and it's for legislators

to hear your story

and how some of the lack of benefits

of a living wage really affect your job

and affect your family.

As you said earlier, there

are lots of DSPs who work two

or three jobs just to make ends meet

and they give up other

things during that time.

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.

And it would be really nice

considering the type of work

that DSPs do, DSPs do, which

is really complex as 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?

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've got all this stuff to plan out

and you know, you're not

being able to take care

of yourself, that affects the clients,

that affects the person you're supporting.

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.

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, a continuing

education training like that.

And we, that that just

needs to be included.

I know that it's included

in other jobs, you know,

that it's just part of

what you do every year.

And it's, it's things like that

where we need that, we need

that encouragement, we

need that accountability.

We need tho those reminders,

- Right?

And, 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 will really teach

you to do your job better

so you can really hone

in on some skills, right.

So I wanna thank you so much, Megan

for being a part of today.

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

I really encourage the PO

squatters out there to join us

for the 2024 symposium.

Keep an eye open in the

frontline initiative.

We will have the dates and,

and everything in there

in the next edition,

which is on advocacy

and voting as far as when

that symposium will be.

And there is no cost to register for it.

We know of course that you might have

to take some time off from

actually doing the work

that you do with the persons you support.

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 of 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. The dates

for the N-E-D-S-P

symposium have been chosen

April 30th and May 1st.

The training is generally 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 nsp.org

website and look for advocacy

and that's where you find

more information about the

advocacy day and you can also register.

Look forward to seeing you there.

So thank you so much pod squatters

and we will see you next time.