Our guest is Amy Hewitt, Ph.D., director of the Institute on Community Integration at the University of Minnesota.

Amy explains that as direct support professionals, you have to fight for what you need and for the recognition and respect that you deserve – and she knows! Amy has been a direct support professional, is a family member of someone who has support, and has been in the field for years.

We have a very special guest with us

today, Amy Hewitt, who's the director

2

at the Institute on Community Integration

at the University of Minnesota.

3

Welcome, Amy.

4

Thanks, Chad.

5

It's great to have you here today.

6

Amy, will you start off

by just telling us about yourself?

7

Sure.

8

I could go on and on, but I'll keep it

really short chat just for you.

9

As you said, I direct the Institute

on Community Integration,

10

and we're a research center

that does a lot of research

11

to improve the community

living opportunities for people

12

with intellectual and developmental

disabilities in their communities

13

and our center's been at that for

well over three decades.

14

I've been here all that time,

15

and I spend my days

trying to learn new things that will help

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to improve policy and services

17

that support people with intellectual

and developmental disabilities.

18

And while I've been here that long,

my career started as a direct support

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professional when I was in college

and I worked

20

at a local multi-service center

in Bloomington, Indiana.

21

And really that's where I got my roots

22

and decided that I wanted my career to be

23

in supporting people with intellectual

and developmental disabilities.

24

After that,

I went on to develop group homes.

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Some of the very first group homes

26

in the state of Indiana,

liberating people with intellectual

27

and developmental disabilities

from institutions in that state

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and wound my way to Minnesota

and never left.

29

I love how you said you liberated people

from the state institutions.

30

That's a great way to look at it.

31

You I think you also have a personal

connection, though, to, don't you?

32

I do.

33

My husband's brother

Nathan lives with autism

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and a number of other mental health

diagnoses.

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He's also in recovery

from substance abuse.

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And so I live it every day in terms of

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what life is like for people with autism

and related developmental disabilities,

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what the system is like, what the system

39

expects of families, expects of people,

40

and a lot of the hassles,

41

but then also appreciation

for the services and supports he has.

42

But then

it's hard for me because he has services

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and I know that 75% or more of people

with intellectual

44

and developmental disabilities

receive no services at all.

45

And that's a huge number.

46

It is a huge number.

47

It is. And most people don't know that.

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Most people think if you have a need,

you get services and it's just not true.

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Right.

50

I know that both advocacy

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and voting, Amy,

are super important to you.

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But let's start out by

talking about advocacy.

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And in this next issue of Frontline

Initiative, you wrote an article

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on step by step advocacy recommendations

for community

55

killing with your representatives

or elected officials.

56

And you wrote the DSP

that the DSP workforce is really essential

57

to supporting people with disabilities,

yet are often

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left out of the media

and not at the table for the conversation.

59

Tell us a little bit more about that.

60

Sure.

61

So I guess I would

I would start out by saying

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that direct support professionals

are the people doing all the work,

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but they're the people

that we hear the least from.

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And it is hard to find them

because they don't really have

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their own professional associations.

66

They don't aren't

known to our communities.

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So they don't gather and network.

68

They're rarely invited to go to typical

conferences in the disability community.

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And if there are DSPs,

there is usually fewer then

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there are supervisors and managers.

71

Over the last 30 years,

I've seen a lot of improvement

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in that area in terms of really

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engaging direct support professionals

at all levels in an organization.

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But it is not common practice. And

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what I see happening is every year,

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like clockwork,

employ years of direct support

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professionals are very active in their

trade associations across the country,

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advocating for increased rates,

which then can give them

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the opportunity to increase wages

for direct support professionals.

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It's very common for direct support

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professionals

to be invited to go to the capital.

82

In most states

there's like a disability day

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at the Capitol

and there's organized messages,

84

but those messages are always created

by somebody else.

85

They're scripted by the employers,

86

by the organizations,

by the trade associations, by the unions.

87

And I think if our elected officials

88

are really going to understand

who this workforce is,

89

what their importance is,

they have to hear from the workforce.

90

And it can't be scripted.

91

It can't be the copy and paste emails,

92

can't be the copy

and paste social media campaigns.

93

It really has to be

what is it like to work

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as a direct support professional

and to live in all communities

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on the wages

that direct support professionals earn?

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So to me,

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we have to figure out a way to leverage

the voice of the people who are actually

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doing the work and making the

difference in people's lives.

99

Amy, it sounds like one of the things

that's really needed is

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DSPs to get together and really have kind

of a grassroots effort to be heard.

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Do you have any recommendations

or ideas for that?

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I really do.

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And I think there's leadership

happening on a national level

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with the National Alliance

for Direct Support Professionals.

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And I think this will be the third year

that they are bringing

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direct support professionals to gather

virtually to teach them about policy

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advocacy, its importance, and to help them

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reach out to elected officials.

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That organization can do things

like those virginal

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virtual connections

and those kinds of things.

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But they're really in very few states.

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I could count them on my one hand,

I know Alaska and Ohio have very active

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associations for direct support

professionals and for many, many,

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many years have had annual conferences

that are solely focused

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on people in the profession

of providing direct support.

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Those are the kinds

of professional opportunities that

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direct support

professionals need to be able to network

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to understand

that they're part of a profession

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that's much bigger than the place

they work, and to understand

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the importance of their work

and the value in professional development.

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And so finding ways

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in states for for direct support

professionals to connect

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outside of their work is

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is a really important component to rising

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and uplifting

this profession, to professional

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careers.

127

So in my experience,

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when DSPs have

I have had a chance to come together

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sometimes there's all of a sudden

this realization

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that there are other people

doing the same similar work that I'm doing

131

have some of the same challenges

when many times as if they're

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working in somebody's home

or just helping support

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somebody in their employment,

they might feel fairly isolated.

134

But to have their voice together

135

really makes a difference and to know

that they're not the only ones.

136

I think that's that's so true.

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And it's really one of the

the challenges of being a direct support

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professional in individualized, person

centered supports.

139

You just don't have the person working

next to you

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or the two or three people working

next to you that when you need support

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or you need help, you can bounce ideas off

of, you can problem solve together.

142

You can make those important

ethical judgments in a way

143

that you're not making it alone.

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And as we continue

to individualize supports,

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we're going to have to figure out ways

to get direct support professionals,

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that networking community that they

they need to have together.

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I know when I go to my professional

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association

activities on a national level,

149

it's really a highlight of my my year

because I get to connect with people

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who do the same thing that I do,

but they do it elsewhere.

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They do it in different states, different

countries, and I get to learn from them.

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And that's so much more important

153

than learning

from some regulatory required training

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or those kinds of annual update trainings

155

that my employer here at the university

requires me to take.

156

Yeah, absolutely.

157

That mentoring

that you can get from a coworker.

158

Sharing of experiences is just

159

probably has kept a lot of

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direct support professionals in their job

because they've had that peer support.

161

I would say absolutely.

162

And when you're inside your employer

and you're working,

163

there are just constraints on you, right?

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Like there's policies you're following

when there's oversight, there's

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regulation.

166

When you can step out of that

and just be with your peers.

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Without that pressure,

you can get all kinds of support

168

and you can talk about, well,

how did you handle a situation like this?

169

I did it this way.

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And you just see

those connections being made.

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If you've ever gone to the Nadia

SP annual conference,

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that is one place that lots of DSPs

from all over the country come to.

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Although there's a fair number

of supervisors

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and managers attend that conference too.

175

But one of my favorite parts

is just to sit in common areas and listen

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to how direct support professionals

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are supporting one

another, are interacting with one

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another, are having fun together,

are challenging one another's ideas,

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and you just can't get that

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if you're with the same group of people

all the time.

181

Or the reality in our field is that,

182

you know, people are moving from place

to place, to place to place to place

183

because they don't stay in

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a given employer for more than a year.

185

At least half of DSPs don't.

186

Yeah, sadly.

187

Earlier,

you mentioned that any DSP advocacy

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symposium that's coming up on April

189

30th and May 1st of 24.

190

During the symposium.

191

The people who attend

have the opportunity to learn

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about policy advocacy.

193

And it's really

if you haven't done that before,

194

when I have attended the last two years,

it's really been an opportunity to learn

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what's the best way to advocate

for yourself in your profession.

196

And it really kind of leads

into the article that you wrote

197

where you propose there's like a five

step process to develop your DSP story.

198

Tell us about that process

and why it's important to plan the message

199

before you go and speak

with an elected official.

200

Sure.

201

You know,

I probably won't get the five steps right,

202

but I think the place to start is

203

first

to know who your elected officials are.

204

And most people who live in this country

cannot tell you

205

who their local elected officials are,

who their state elected officials are,

206

and who their national elected

officials are.

207

Don't ask me who my local elected

officials are.

208

I don't know.

209

There are websites that you can go to.

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I think I included one in that article.

211

You just click on it.

212

You put your zip code in and bingo,

they all just show up for you

213

and their contact information

shows up for you.

214

So that's really the first place is

you have to know who they are.

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And then in today's world,

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there are a lot of ways that you can get

your messages across to elected officials.

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I know with some of our students

and fellows here at the Institute

218

on Community Integration,

we want them to learn how to advocate

219

and how to share their stories

and their messages.

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And so we offer them different ways

to do that and teach them different ways

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so you can write a letter,

you can send an email,

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you can use social media,

you can pick up the phone

223

and make an appointment

and go see the person

224

right then and there.

225

Or you can just walk in

and to their offices

226

and try to talk to one of their staff.

227

The biggest thing is not to be intimidated

by the whole process.

228

They work for you

and you are a constituent.

229

So first and foremost, that's the almost

230

the very first word

that should come out of your mouth.

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I'm one of your constituents,

and I have an issue

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that I want you to learn about

233

and help me

to solve the problems that I'm facing.

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Once they know

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that you're a constituent,

then depending on the way in which you're

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trying to communicate with them,

you have to shape your message.

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I remember the very first time I was

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ever asked to go to the state capitol

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and talk about actually direct support

workforce issues.

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I was really prepared.

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I had this long thing figured out.

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I was going to say,

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and by the time I got there,

I was on time.

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But by the time

the person was ready to talk to me,

245

they were literally racing

to some committee meeting.

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I was following them side by side,

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chasing them down the corridor,

trying to get my message out.

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My message was way too long.

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Like I, I needed a 32nd sound byte.

250

Elevator speech.

To to grab their attention.

251

So that's

what we teach our students to do.

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Is the elevator speech like?

253

Very quick to the point

and what's the action that you want

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the person to take?

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Sometimes there's a bill

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that's already been routing

through the process,

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and if you know

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the name of that bill,

you can just go straight to that bill.

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I want you to support this bill

because and give them your reason.

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But a lot of times

and the most important conversations

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I think, that we have with our elected

officials is

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when we let them know who we are,

what's important to us,

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why it matters

and what we want them to do.

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So it's not like the first time

you meet with an elected official

265

or communicate with them.

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You're going to get the prompts

you have solved.

267

But the more times you go back

and the more you build a relationship

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with them, the more effective

your advocacy is going to be.

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So a big part of it is

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putting yourself out there, know

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where they are,

find them, let them get to know you.

272

That's just a really critical

part of the process.

273

And I know a number of DSPs

who are on a first name basis

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with their elected officials

because five years ago

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they started bringing up the issues

that they struggle with

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and the challenges

that they want help in solving.

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But they didn't get known right away.

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And now those elected officials actually

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reach out to those direct

support professional roles.

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And part of the reason they

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reach out to direct support professionals

when they get to know them

282

is because the DSPs know what's happening

there.

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They're doing the work

and they're not asking for more money

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for their businesses.

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And while it may or may not be fair,

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I know I've experienced elected officials

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saying, you know, I just don't

really understand this business model.

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These providers come year after year

after year and ask for more money

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to be able to increase wages

for direct support professionals.

290

So there's a little bit of a distrust

around that.

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And I think DSPs

bring an authenticity to the message.

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And it's just so important

that their truth be told.

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You know, we did a study,

we did a series of studies during COVID 19

294

and some of the facts that we learned

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were things like 73% of direct support

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professionals are the primary wage earners

in their home.

297

So I think about that in the context

of knowing what their wages are,

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knowing how expensive their benefits are,

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knowing that they're more often

than not single parents

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and they're trying to live on the wages

301

that they earn as a DSP.

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And the way they can get their income up

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is to work a whole lot of overtime

or to work multiple jobs.

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But what's the effect of that

on their children

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if they have children at home,

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What's the effect of that

on their extended family?

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If they want to spend time

with their extended family,

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what are the other government benefits

that they have to rely on

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because their wages

simply aren't high enough

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to be able

to afford housing, transportation,

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heat, food, all those essential things.

312

And to me, that's

the biggest travesty in this country,

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is that this is a group of employees

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who are doing extremely important work

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for which they have to have high

skills, high knowledge,

316

and we are rewarding them

317

for that by paying them wages

where over half have to depend

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on other governmental assistance

just to be able to get by.

319

And to me, that's just a travesty.

320

And if COVID 19 did not convince people

321

in this country of that, I don't

I don't know what will,

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you know, diaspora's sacrifice

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so much during that whole period of

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COVID 19 when we had no vaccines, when we

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were isolated,

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and in many cases

they were working 60, 80 hours,

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some of them living inside

328

programs for months without a break

329

or without seeing their children

or seeing their family members.

330

And yet at the very beginning

331

of the pandemic, they weren't

even identified as essential workers.

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We need to fight for that, right? Yeah.

333

That's just ridiculous.

334

That's why it's so important

335

when you do talk with your legislators

and lawmakers

336

about your personal story.

337

And you talked about people working

overtime and working multiple jobs,

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how does that affect them as a person,

their physical health, their

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mental health, along with their family

and everybody, like you said?

340

But how do they how do they continue?

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And if the lawmakers don't know

that really personal story,

342

it's it's not going to be as effective

when they hear that bill.

343

They're not going to connect it

with the real people,

344

with the constituents, constituents

in their district.

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I will tell you often when I'm on Capitol

346

Hill talking to elected officials

and their staff,

347

the things they remember

are those stories.

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And the most powerful

is when a direct support professional

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and somebody with an intellectual

or developmental disability

350

can share their stories together

because the person with a disability

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is sharing the accomplishments

in their lives, the opportunities

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in their lives,

why they need some help in order to

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live in the community.

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And then you have the direct support

professionals sharing

355

what their life is like

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and what it's like to live on the wages.

357

And so I think that Dyad

would be like the ideal,

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though it's difficult to make happen.

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I just think those are the most powerful

stories, though.

360

The stories of the people

who are benefiting from the support

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and the stories of the people

who are providing the support.

362

Yeah, absolutely.

363

Amy, we know that voting is really one way

364

that we can advocate

for ourselves in our profession.

365

What do you say to voters who are really

disenfranchized with voting today?

366

Well, the first thing

367

that comes to my mind

is then don't complain.

368

Right?

369

If you can't get out and vote,

then don't complain about what's happening

370

in your state capitol or in Congress

because

371

your vote is your power.

372

Your vote is the single biggest thing

373

you can do to make change in this country.

374

And all you have to do

is look at voter turnout.

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We happen to live in a state

where voter voter turnout is very high.

376

I think we compete with Maine every year

for being the highest in voter turnout.

377

But in many, many states, it's

not even close to where we are.

378

And I think we're in the seventies,

maybe mid 70% in terms of voter turnout.

379

So I think people get disillusioned

because they just don't know

380

how to make change

or how to influence the process.

381

And in today's world,

there's just so much dichotomies

382

of, you know, there's this

383

wide, wide gap between

384

ideology and

385

you just sort of do face days

where you think,

386

what on earth,

how does anything ever happen?

387

But if you don't vote,

388

then we're not going to create change.

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And to me,

that's that's just a fundamental

390

responsibility

391

of every person who can vote

should vote right.

392

If we want things to change,

we need to be a part of it.

393

So it's important

to find out who the candidates are

394

and what what they stand for,

what are what are the issues

395

and where do they stand on those issues

to see how they align with your own values

396

and how you'd like to see things change

for the future?

397

I think that's really important.

398

And if it's a person

who's running for reelection,

399

it's really important to know

how do they vote,

400

how do they vote on your issues

and to hold them accountable

401

if they vote on any issue

402

that is in opposition of what you want

and you just let them keep doing that

403

without letting them know, hey, I didn't

I didn't like that vote and here's why

404

and here's how that vote affects me,

405

then they aren't ever held accountable.

406

So it's it's you know,

voting is really important.

407

But once people are elected,

it's also important to give them a grade,

408

let them know how you think they're doing

and remember that they work for you.

409

You don't work for them.

410

That's right.

411

Amy, is there anything else you'd like

to say to the listeners in regards

412

to advocating for themselves

in the profession or voting?

413

I just would say

414

really reflect

on how you contribute to your community,

415

how you change

people's lives day in and day out,

416

the skills that it takes for you

to do your job,

417

whether you're trained to do that or not,

you have them

418

and you have to fight for what you need

419

and for the recognition

and the respect that you deserve

420

in your profession.

421

Yeah. Thank you so much, Amy.

422

I really appreciate it.

423

Appreciate you being with us today.

424

Thanks for inviting me. Awesome.

425

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426

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