Episode 6

Episode 6: Guest: Amy Hewitt "No one is better at telling your story than you are."

Published on: 28th March, 2024

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.

Transcript
Speaker:

We have a very special guest with us

today, Amy Hewitt, who's the director

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at the Institute on Community Integration

at the University of Minnesota.

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Welcome, Amy.

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Thanks, Chad.

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It's great to have you here today.

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Amy, will you start off

by just telling us about yourself?

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Sure.

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

really short chat just for you.

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As you said, I direct the Institute

on Community Integration,

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and we're a research center

that does a lot of research

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to improve the community

living opportunities for people

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with intellectual and developmental

disabilities in their communities

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and our center's been at that for

well over three decades.

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I've been here all that time,

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and I spend my days

trying to learn new things that will help

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to improve policy and services

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that support people with intellectual

and developmental disabilities.

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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

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at a local multi-service center

in Bloomington, Indiana.

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And really that's where I got my roots

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and decided that I wanted my career to be

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in supporting people with intellectual

and developmental disabilities.

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After that,

I went on to develop group homes.

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Some of the very first group homes

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in the state of Indiana,

liberating people with intellectual

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and developmental disabilities

from institutions in that state

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and wound my way to Minnesota

and never left.

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I love how you said you liberated people

from the state institutions.

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That's a great way to look at it.

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You I think you also have a personal

connection, though, to, don't you?

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I do.

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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

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expects of families, expects of people,

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and a lot of the hassles,

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but then also appreciation

for the services and supports he has.

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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

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and developmental disabilities

receive no services at all.

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And that's a huge number.

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It is a huge number.

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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.

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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

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killing with your representatives

or elected officials.

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And you wrote the DSP

that the DSP workforce is really essential

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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.

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Tell us a little bit more about that.

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Sure.

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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.

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They don't aren't

known to our communities.

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So they don't gather and network.

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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.

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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.

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In most states

there's like a disability day

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at the Capitol

and there's organized messages,

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but those messages are always created

by somebody else.

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They're scripted by the employers,

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by the organizations,

by the trade associations, by the unions.

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And I think if our elected officials

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are really going to understand

who this workforce is,

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what their importance is,

they have to hear from the workforce.

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And it can't be scripted.

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It can't be the copy and paste emails,

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can't be the copy

and paste social media campaigns.

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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.

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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.

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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

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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.

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But to have their voice together

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really makes a difference and to know

that they're not the only ones.

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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.

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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.

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You can make those important

ethical judgments in a way

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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,

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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

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than learning

from some regulatory required training

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or those kinds of annual update trainings

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that my employer here at the university

requires me to take.

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Yeah, absolutely.

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That mentoring

that you can get from a coworker.

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Sharing of experiences is just

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probably has kept a lot of

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direct support professionals in their job

because they've had that peer support.

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I would say absolutely.

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And when you're inside your employer

and you're working,

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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.

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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

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and you can talk about, well,

how did you handle a situation like this?

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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.

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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.

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Or the reality in our field is that,

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you know, people are moving from place

to place, to place to place to place

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because they don't stay in

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a given employer for more than a year.

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At least half of DSPs don't.

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Yeah, sadly.

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Earlier,

you mentioned that any DSP advocacy

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symposium that's coming up on April

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30th and May 1st of 24.

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During the symposium.

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The people who attend

have the opportunity to learn

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about policy advocacy.

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And it's really

if you haven't done that before,

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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.

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And it really kind of leads

into the article that you wrote

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where you propose there's like a five

step process to develop your DSP story.

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Tell us about that process

and why it's important to plan the message

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before you go and speak

with an elected official.

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Sure.

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You know,

I probably won't get the five steps right,

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but I think the place to start is

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first

to know who your elected officials are.

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And most people who live in this country

cannot tell you

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who their local elected officials are,

who their state elected officials are,

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and who their national elected

officials are.

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Don't ask me who my local elected

officials are.

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I don't know.

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There are websites that you can go to.

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I think I included one in that article.

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You just click on it.

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You put your zip code in and bingo,

they all just show up for you

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and their contact information

shows up for you.

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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

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on Community Integration,

we want them to learn how to advocate

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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

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and make an appointment

and go see the person

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right then and there.

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Or you can just walk in

and to their offices

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and try to talk to one of their staff.

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The biggest thing is not to be intimidated

by the whole process.

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They work for you

and you are a constituent.

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So first and foremost, that's the almost

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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

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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,

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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.

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Elevator speech.

To to grab their attention.

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So that's

what we teach our students to do.

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Is the elevator speech like?

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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

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or communicate with them.

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You're going to get the prompts

you have solved.

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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.

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That's just a really critical

part of the process.

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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

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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.

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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

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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.

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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

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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.

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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,

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and we are rewarding them

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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.

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And to me, that's just a travesty.

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And if COVID 19 did not convince people

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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

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programs for months without a break

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or without seeing their children

or seeing their family members.

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And yet at the very beginning

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of the pandemic, they weren't

even identified as essential workers.

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We need to fight for that, right? Yeah.

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That's just ridiculous.

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That's why it's so important

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when you do talk with your legislators

and lawmakers

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about your personal story.

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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?

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But how do they how do they continue?

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And if the lawmakers don't know

that really personal story,

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

when they hear that bill.

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They're not going to connect it

with the real people,

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with the constituents, constituents

in their district.

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I will tell you often when I'm on Capitol

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Hill talking to elected officials

and their staff,

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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

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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

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what their life is like

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

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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.

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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.

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Yeah, absolutely.

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Amy, we know that voting is really one way

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that we can advocate

for ourselves in our profession.

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What do you say to voters who are really

disenfranchized with voting today?

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Well, the first thing

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that comes to my mind

is then don't complain.

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Right?

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If you can't get out and vote,

then don't complain about what's happening

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in your state capitol or in Congress

because

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your vote is your power.

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Your vote is the single biggest thing

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you can do to make change in this country.

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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.

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I think we compete with Maine every year

for being the highest in voter turnout.

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But in many, many states, it's

not even close to where we are.

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And I think we're in the seventies,

maybe mid 70% in terms of voter turnout.

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So I think people get disillusioned

because they just don't know

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how to make change

or how to influence the process.

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And in today's world,

there's just so much dichotomies

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of, you know, there's this

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wide, wide gap between

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ideology and

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you just sort of do face days

where you think,

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what on earth,

how does anything ever happen?

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But if you don't vote,

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then we're not going to create change.

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And to me,

that's that's just a fundamental

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responsibility

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of every person who can vote

should vote right.

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If we want things to change,

we need to be a part of it.

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So it's important

to find out who the candidates are

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and what what they stand for,

what are what are the issues

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and where do they stand on those issues

to see how they align with your own values

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and how you'd like to see things change

for the future?

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I think that's really important.

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And if it's a person

who's running for reelection,

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it's really important to know

how do they vote,

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how do they vote on your issues

and to hold them accountable

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if they vote on any issue

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that is in opposition of what you want

and you just let them keep doing that

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without letting them know, hey, I didn't

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

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and here's how that vote affects me,

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then they aren't ever held accountable.

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So it's it's you know,

voting is really important.

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But once people are elected,

it's also important to give them a grade,

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let them know how you think they're doing

and remember that they work for you.

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You don't work for them.

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That's right.

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Amy, is there anything else you'd like

to say to the listeners in regards

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to advocating for themselves

in the profession or voting?

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I just would say

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really reflect

on how you contribute to your community,

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:

how you change

people's lives day in and day out,

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:

the skills that it takes for you

to do your job,

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whether you're trained to do that or not,

you have them

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and you have to fight for what you need

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and for the recognition

and the respect that you deserve

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in your profession.

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Yeah. Thank you so much, Amy.

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I really appreciate it.

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Appreciate you being with us today.

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Thanks for inviting me. Awesome.

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Thank you for taking a closer

look with us.

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You can follow a closer look

wherever you find your favorite podcasts

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:

so you don't miss a single episode.

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You might also want to consider

following wellness matters

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:

for direct Support,

a podcast for direct support workers.

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As we share information that can help

support your health and wellness.

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To find all of the issues of Frontline

initiative,

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go to Zee, dot, Ume and dot edu

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backslash Frontline initiative.

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Here you can subscribe

and get the next issue

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:

sent to you right away

as soon as they're published.

436

:

Until next time, be well.

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About the Podcast

A Closer Look at Frontline Initiative
Explores the most current and relevant issues covered in "Frontline Initiative" magazine
Are you a direct support professional or frontline supervisor who loves to learn more about best practices for supporting people with intellectual disability? In “A Closer Look,” we explore the most current and relevant issues covered in "Frontline Initiative." Produced by the University of Minnesota’s Institute on Community Integration and the National Alliance for Direct Support Professionals, "Frontline Initiative" is a bi-annual online magazine by and for the direct support workforce. z.umn.edu/FrontlineInitiative