VCU

August 24, 2017

Services provided by: Caption First, Inc.

>> DOUG CRANDELL: All right, well, welcome to today's webcast. We

are going to spend some time thinking about something we normally don't

in human services. That is how we write, how we document. We do a

tremendous amount of it, but we don't really spend time thinking about the

impact of that writing, where that writing comes from and the use of that

writing. In other words, the audience for that writing. And so this has a

great deal to do with customization in employment and that is why we are

here today. Hopefully, tying some of the pieces around how we get to

know a job seeker with some fields of practice that are doing it as well. We

are not the only area field of practice that focuses on person-centeredness

and that is a good thing. So, we are going to spend time talking about

meaningful writing: How to you capture the strengths of a job seeker and

how that plays out in ideal conditions of employment.

So, overall, you might want to think about the webcast a kind of a history

and impact of documentation. Where does this idea of documenting

services and supports come from? How that feeds in what we might call a

career profile, a vocational profile. And then, looking at stereotypes to

avoid.

As you might think and guess, there are all types of stereotypes that

impact us as we are working with folks. And moving from those labels to

how we might capture strengths of a job seeker is important.

Then we will spend time throughout the webinar kind of linking in

something called narrative medicine. Before you get too anxious about the

phrase narrative medicine, particularly the word "medicine", it is important

to know that always has impacted our field and that medicine is taking the

lead on using narrative to improve primary healthcare outcomes.

Well, I am Doug Crandell, I work for IHDD at the University of Georgia as

well as with Griffin-Hammis. I come to this work with a real passion for

writing. I often tell people I have combined two mediocre salaries to end

up with a life of both writing and working in human services. I write quite a

bit around memoir, my own family's history of disability and mental health

issues. I build that in to novels and fiction. I have written some true crime

as well. All of those, focusing, really, on what we do day to day.

So it is interesting, then, to take that practice and look at it as it impacts

us in our work. So, I come to this work first as a sibling and that's

important. And that's important for a framework today. So, first and

foremost as a sibling.

Then as a professional. After 27 years, I have read and written some

terrible documentation and I have read and written myself I think some

pretty good writing.

And then third, I come to that as a writer. And I try blend these to get to

a certain point; to think at least for a little while about the power of writing

as a method of knowing a specific person. And that kind of "knowing" part

is really important in connecting to ideal conditions of employment. If I

don't know a person very well, if I only know them in one or two

environments and I only know them through one or maybe only paid

people who are with them, then my way of knowing that person isn't as

effective.

So, understanding personal narrative is important. Not just clinical

documentation. Not just labels, behavior plans, ISPs, those kind of things.

But knowing someone well so that I can do a better job. And this comes to

us, this idea of narration, narrative in our work, comes to us you from a

different part of the human services system. As I said, that is primary

healthcare. This quote [See Screen] is adapted from the narrative

medicine framework, something I have been spending quite a bit of time

reading about.

Dr. Rita Charon, Columbia University has the only program with a

Master's degree in narrative medicine but there are over 70 medical and

nursing programs that require classes around narrative. So, this idea of

practicing human services effectively requires a narrative competence.

That is, the ability to acknowledge, absorb and interpret and act on the

stories and plights of others. If it's good enough for cutting edge narrative

medicine, it's good enough for us to think about how that impacts us from

day to day.

So, why think about writing and words in general? Well, we all deal with

this every day. With texts, emails, all types of kinds of written

communications. We are spending around in 2014 with this research, we

are spending around 11 hours a week. Some of us have to spend time

returning those emails on the weekend, right? It takes up a big chunk of

our time. But this idea that words and people are the primary elements of

our work and most human activity should make us pause and think about

you how we write.

Most of us write in one way: We enter a field: Sales, social work,

manufacturing, the law, university, provider agencies -- and we start

writing like those folks writing around us; like the texts that we are reading.

And there is obviously a place for that. That is what we talk about

audience, what we mean by audience.

But it becomes problematic when we cannot then break free of that. The

notion and the idea of taking time to think about writing and

documentation related to our field of supported employment really came

off after speaking with a VR counselor. There is a section in the

Griffin-Hammis discovery staging record that says you can write about the

job seeker's most endearing traits. And as I asked this opinion who is a VR

counselor and also a parents of a young person with disabilities, she was

having a hard time in being very honest about that; that it was difficult for

her to shrug off her training as a vocational rehabilitation counselor and

write about a person's specific and endearing traits. And I found you this

over and over again. Yet most of us get jobs based on our most endearing

traits. So being able to figure out how to write that is important.

We are sad to learn, from the Pew Research Center, we find we are

reading less. We might be reading more on tablets and news feeds. But in

terms of longer narratives, we are reading less.

We are embedded in a system if you don't know this yet where we like to

ameliorate problems. We are trying to address deficits and weaknesses.

And, when we do that, documentation becomes rote; it becomes an

exercise.

I have the great fortune of traveling to several states and getting to

know people who are doing employment supports, customized, supported

employment. And often that takes me to someone's home. And many

times that is a group home. And I started noticing four, five years ago, how

much wonderful staff, direct support professionals in the home who knew

the folks very well were simply writing furiously in large binders, acting on

the training they had been given. That kind of documentation is important

but if it's only an exercise in repetition, and it's not tied to outcomes, we

have problems.

When I was in one of those states, a rather absurd example popped up;

and that was somebody's ISP who lived in a rural area. And the goal in the

ISP as it was written was talking about taking a bus. And that the goal

would be for the person to ride this bus.

Well, I was pretty shocked that there would be a bus in that rural area.

Really very rural. And the person told me, well, no, there is not really a

bus. We just put that in there and we practice at a kind of pretend bus

stop.

Now that is an absurd example of how strange some of our goals-setting

can be. But also how to you write about somebody in an authentic way

when we put them in a situation that is not even real?

So, where does this come from? Why do we document in a certain way?

If you have spent some time thinking about Medicaid and the important

role that that plays in many people's lives. Then certainly Medicaid waivers

and the advent of those in states. Moving from state dollars to Medicaid

dollars. Obviously, that's rooted in a medical model. And so this year

marks the 100th anniversary of something that impacts us every single

day. I will give you a little time to think about what that might be.

What could we be celebrating that we are marking as a country the

100th anniversary? Wish there was a prize involved. There isn't. Well, we

are celebrating in our country the modern medical chart.

And this is someone who is receiving supports in a long-term care

facility. It looks very much like a Medicaid waiver. You can go through this

and compare it to probably any number of charts and see the reflection of

the modern medical model on the work that we do. It's important to know

that because it impacts us every single day. It creates our views, through,

again, amelioration. We have to identify something that's problematic and

wrong and fix that. And have goals and objectives.

That is very much like primary care.

The nonmedical supports, though, right, the things we are interested in:

Employment, community inclusion, people having real relationships with

other citizens in their own communities. Those are often delivered, then,

through the use of this medical documentation. And then you can begin to

see how that kind of bumps up against each other, right?

This idea of person-centeredness, of knowing what the job seeker bumps

up against how we have to document. And it does mirror a great deal of

what we find in medical charts. So, how we train people in our systems is

also important to understand. And if you take a moment to think about the

training you have gotten around documentation in whatever role you are

in, again, you are you probably imitating what someone else is doing. You

probably have been given some orientation; and most of that orientation is:

We think that everything needs to be documented.

So, again, just pausing here to take a look at one state's orientation

manual. This is primarily for direct support professionals, employment

specialists, other people working with folks who maybe are not in the

support coordination role.

And you will see as they go down this general set of rules that there is

not a lot of focus on knowing the person. Obviously, we want to make sure

from the very beginning that it's not lost or damaged; that someone's

privacy is respected; that no one else is mentioned in it. All of the originals

should be in the file. There should be photocopies and fax copies placed in

the file if the original is not available. In other words, we go into black and

blue ink. How we should write. These are the items -- the documentation

general rules that we are giving people as they enter our systems. This

could be in VR, this could be in Medicaid, it could be in state dollars. Again,

more of these rules.

These are things that probably all of us kind of assume would be the

case, right? Complete dates. Including AM/PM, making entries only after

the fact. Making sure things are legible. Sign using someone's full name

and title. I think all of this sounds very familiar.

From the same state we get a little bit -- and I have to provide some

kudos to the state -- a little bit around creating a narrative and that is the

W questions, right? In your charting, who, what, where, when, how, why.

But we imitate what we have read so many times we don't start writing

about a job seeker, a person receiving services in truly a person-centered

way. We are still imitating what we have read before. Here are some more

guidelines from a specific state. Even when you are doing some narrative

writing.

Making sure all of the entries, again, have your whole name on them;

that they are complete; that you are asking for clarification in situations

that you may not know the person very well.

All of these are kind of related to what we call progress notes, monthly

report notes. In Medicaid of course in many states we are reporting every

15 minutes. So it is important to understand that we are doing this all the

time anyway and to have that base of understanding brings us I think to

some interesting information as well.

There is some overlay here with medicine, with primary care. There is a

reason for that if you haven't connected it yet. We are really, really

influenced, both through Medicaid and other types of medical

documentation in what we do.

As you see for every hour spent with patients, physicians are spending

two hours on electronic health records. That is pretty amazing. Another

study found, with nurses, that they are spending one quarter of their

12-hour shift with paperwork. And this is important because we do the

same. We have always tried to mirror medicine.

Direct support professionals getting more into our area, during exit

interviews and provider surveys, will say, one of the reasons that they are

leaving is the immense paperwork requirements. They may come to the

job interested in what they are doing. But even with all of our technology,

we can't sidestep documentation. It is tied to outcomes more and more

and we need some way to prove that we are providing services and

supports. But we can always improve what we catch do in terms of goals

and objectives. Those do not have to be rote. Creating a profile mandates

us to do that in a way that is person-centered customized or supportive

employment.

So here's a fun little exercise and a third-party one that can be really

helpful and this is the example I was given about the VR counselor. Think

of someone on your caseload and you are actually the job developer.

Maybe you are a support coordinator and trying to advocate for the person.

But it doesn't matter. Just somebody that you know who's a real person

and you are supporting in some way. Change their first name. Don't use a

last name and take a few minutes to do that thing I was talking about a

little earlier.

Write something that is absurdly in "Human Services speak." Use as

many acronyms as you can. Imitate if you will, the writing that we see all

the time in case notes, progress notes, Medicaid waivers, goals and

objectives, ISPs, individualized work plans. Whatever acronyms you are

you used to.

You want to do this purposefully to kind of exaggerate the absurdity of

our system. Take time to do that and read that back, noting the feelings

you are having about that writing. What does it sound like? What would it

sound like to somebody who's not familiar with our systems? Take some

time then to jot down how you are reacting to that writing that you have

you just done.

The second part of this exercise, great to do in staff meetings in retreats,

think of the exact same person now write several sentences focused on

that person's most endearing traits. The part that I was talking about

earlier in our discovery staging record. That by the way when I work with

staff they tend to just kind of gloss over not the person's labels, unique

behavior issues but their most endearing traits and we are not using here

"Human Services speak." No acronyms. Write about this person if I

daresay in a heartfelt way. Read that out loud to yourself. How are you

reacting to this? Is it difficult you? Is it easier for you to write about the

good things without our human services language?

Try it again. Think of another person or continue with the same and

write about that person's most endearing traits make it narrative. Don't

just bullet but write about a recent experience with that person that, again,

highlighted their endearing traits I bet you'll feel, certainly like most of us,

that we don't get to do that a lot in our daily work, that most of us are

having to write in very clinical ways or in rehabilitative ways or in ways that

again ameliorate deficits and weaknesses. That is important because that

is an audience we are writing for. But the whole point of these two

exercises is that, in discovery and in getting to know a job seeker, we have

been given permission to toss off our old way of writing about people or to

write in a way that highlights strengths and endearing traits so I want to

return to narrative medicine. Something called the parallel chart.

We will look at this near the end of the presentation. But one of the

trainings for narrative medicine is having physicians and nurses who were

in medical school actually do this too. They write about patients in

quotations and about how they have gotten to know them. About the

person's life story. About what they did for a living, where they life, what

their neighborhood looks like. Why do they do that? Why is that

something that medicine is focusing on? It is because that we know this

improves outcomes and since we imitate it in our documentation the kind

of bad parts of the medical records, why not imitate this.

So, these medical students will meet with an advisor and they will have a

chance to do what they call the parallel chart. The parallel chart, the

person can write a poem about their patient, a quick essay, they can even

fictionalize. The point is they are trying to write about the person

creatively. And in doing so, they are getting to know that person. So that

we won't have as we train people, only learning about how to make sure

your initials are properly attached to a progress note; but how to write in a

way that knows the job seeker in a better way so writing that is

deficits-based, these things we have to do, it is important to know that it is

at odds with what we are trying to accomplish. It is at odds with portraying

a job seeker positively, helping them being in their communities inclusive.

Since we can't stop that, then we need to know where it comes from.

Functional limitation, those things of daily activities that people cannot do

often helps them get funding. Gaps in achieving those things, help us say,

we are going to provide a certain service of support to help. It's rooted in

that in behaviors, learning traits, coping, working, functioning. All of that

we write in a necessary approach for funding and services.

But because we do that, we have to be aware of how that impacts us as

we do the work that we are really challenged to do, under the Workforce

Opportunities Act and the Settings rule around CMS to be strengths-based

means we are going to have to figure out a way to include person-centered

and strengths, we have to do it differently than we have in the past.

This is another great I think task, a little assignment that I know I do,

sometimes formally every year then other times helping other folks do it.

Think about, just kind of casually: Where am I spending most of my writing

time during a typical week? I was recently a state where someone showed

me their monthly audit. And it was pretty sobering. Around 75% of their

writing time was focused on narrative -- excuse me -- progress notes,

deficits-based stuff. And that same person is responsible for a caseload, if

you will, of people who need jobs and need more inclusive lives in their

communities. That has an impact on us, right?

So, what is the purpose of this writing if you are doing your own writing

audit? You might want to jot these things down. You might want to create

a little report for yourself or again do it casually or informally. What is the

purpose? Why am I doing this writing? Many people say "My boss tells me

to" and the state tells that person to. That is okay. There might be

reasons. Figuring that out is important.

What are the rules applied in this writing? We say formal but there are

informal ones to. The same VR counselor I was mentioning was sharing a

story where her boss said you can't put good things in the notes. Because

then we are not going to say we are providing supports for this person. It's

much like trying to qualify for SSDI if you have been working. You have to

show that there is stuff wrong with ya to get it, right? So there are informal

rules all the time in our writing. Are they useful in the writing that I am

doing? In other words, if I carry that over to the writing I am doing over a

job seeker probably isn't that useful.

We say in writing that all of us have an editor on our shoulder. What's

that editor's name? If you are writing about your family, it probably has

those family members' names. If you are writing to a VR counselor or if

you are in a role of support coordination or employment specialist or job

developer, there is an editor on our shoulder. All of us have that. Naming

it, figuring that out, is important.

What outcome, both kind of intermediately and long-term, does this

writing support. For instance, if someone has been spending most of their

time in a group home and then a day program and the van back to the

group home; and we are wanting and the person is desiring more of a

community presence both through work and inclusion, how does that

writing help me serve that outcome?

Taking this audit I think also can be a fun staff activity, something that

can make us aware of writing; make us aware of narration in our work. If

we simply do that, it will improve what we are doing, because we.

If we don't have an awareness, say, that the medical chart's been

influencing us for 100 years or that we sometimes carry over that kind of

language into our more person-centered writing, if we know that, we can

do a better job. Writing audit is a great way to do that. So, I hope you use

it.

That number one question: What is the purpose of the writing? So many

times people have to qualify for services; maintain funding, treatment,

interventions, whatever we call that in our systems. That again can come

from state dollars, it can come from waiver supports, vocational

rehabilitation. Other funding systems. And they are used to create ISPs,

IEP or other formal human services plans. In that way, that kind of writing

serves its purpose. But after that determination is made, what type of

writing is necessary for me to arrive at an outcome for the person to be

work, to have a customized job? To be more included and am I switching?

This is the big piece. This is the one that I see folks struggle with all the

time. Even when we are given permission, say in discovery or writing a

career profile, doing the discovery staging record, am I switching from that

deficits-based to person-centered narratives?

Do I know this person's story or am I dragging in that stuff that's

negative, that is deficits-based, over to what I am supposed to be doing?

Particularly for those who have a reputation. If I only know a person by

their reputation. If I only know them in one setting or only through one

other person, I don't know that person very well. We can all think about

people who may not like us that much, who probably wouldn't be able to

give someone else a good understanding of who we are.

Awareness about this, I think, is important as we move into doing

discovery and trying to help someone find a place in the community for

work. Deficits still impacts person-centeredness and focusing on strengths.

Moving from problems to contribution. That is why so many folks have

problems writing about endearing traits. Once they practice it, they don't.

But they have to be given permission.

You have to practice this because we are immersed in the other kind of

writing; that way that really qualifies us for services rather than propels

and supports peoples and employment in the community. But again, as I

said, we are not the only field doing it.

I talked about narrative medicine. It is sometimes also called

patient-centered healthcare. Knowing the person's life. In mental health,

we call that recovery-oriented mental health treatment. Narrative

medicine, as I mentioned, Dr. Rita Charon, in mental health, the idea of

embracing the narrative. Person-centeredness around secondary and post

secondary education for students. We are not the only ones doing it. We

don't want to imitate our clinical background in instances from how the

Medicaid piece in our system has impacted us.

So, my favorite part, folks, is writing so that we know the job seeker and

creating a discovery narrative. "Knowing" is in quotes because you have to

be curious. You have to know someone to connect them to other people

who are like-minded, who have similar endearing traits, right?

That knowing is half the battle. That if we can do that in a different way,

document that in a different way, then, obviously, the outcomes that we

are seeking will be ever present.

However, just like anything else in our field and probably just in human

nature, we call something by a name and then it ends up not being that

thing.

So if you are doing any type of discovery, if you are doing any type of

person-centered career planning, creating any type of vocational career

profile, if you are doing that in your office by yourself, you are not doing it.

It requires action, right? People. All of us need to be in different

environments to produce different information and that provides

opportunities to explore preferences.

If we are not, that is why it makes it so difficult to write about someone's

endearing traits because they have just not spent time with that person in

different environments. Other people know people differently than we do?

That is one of the big keys. Often, when I am helping people try to figure

out how to again, facilitate discovery, create person-centered career plans,

they will say, I don't think they know anybody else. And isn't that the truth

most times? Most folks in our systems don't have a lot of unpaid support.

And recently, someone in a state got pretty excited because they

tracked down a special education teacher who knew the job seeker really

well. They did that by getting the name, Googling, finding the school

website, finding the teacher and the teacher's email and pulling that

person back into the job seeker's life. And I should say the employment

specialist was just blown away by how much information they got from that

person. But being person-centered and in discovery and in planning, it

does require I think exploring our roles.

Just as we are not aware of how we write, why we write, what influences

us we don't spend much time thinking about the power of roles. And so I

want to do that for a little while because we don't want the writing to be

done really in the same environment in which we have done other types of

writing.

If you have a loved one or someone that you you care about deeply, you

know that buildings and offices and human services are not neutral places.

They are just not. They signify a professional fortress, they can be

intimidating and most of us when in those situations don't give great

information. A desk and which side you sit on immediately creates a

dominant role, right?

We believe in those situations because of being in school or in other

places that there are right answers to give, right? Holding a form and

making notes and flipping pages, that reminds us of places where we are

not in control. Again, maybe elementary, high school, doctors' offices.

Asking these kind of yes-or-no questions is a way to get to know a job

seeker doesn't work. It seems procedural; it seems legal and once you ask

a yes-or- question there isn't much more to get. And it also reinforces our

belief that there is a power role.

So, how do you fix those things? Again this kind of writing needs to be

done outside of an office. It requires action. So, spending time with the job

seeker in their home. Obviously, that's key. Visiting the neighborhood.

Going where they go. I have been to lots of faith-based activities with

folks. That is really important to them I would not know that person or the

people who know them if I didn't do that. Chores at home, family routines,

family schedules.

That is a way to remedy how we then write about someone. It gives us

something to write about. If I am only asking the day manager in a group

home how you they know a specific job seeker I am not going to get as

good information as knowing somebody in other settings.

We are trying to find out whether the person can communicate in

traditional ways or needs augmented or assisted communication. We are

trying to sustain an ongoing conversation. You can do that with people

who don't talk, by the way. Repeated contact with someone and the

people who know that person, creates trust and that is an important thing

to come it impacts the information that we give.

Talking to others about the job seeker, friends and siblings and

neighbors and educational personnel. All kinds of people. I guess it goes

without saying that we need permission from the job seeker to see who is

involved. There are some of my siblings that I won't want to give

information, but anyway, the information can help us with folks who don't

communicate in traditional ways.

I love seeing artifacts when I visit someone's home. Not only asking

about the family but really looking at videos and photo albums and just

recently found out so much about a job seeker from his mom who had

created this wonderful photo album that really created a narrative. Never

would have seen it if I had been doing this work in the office. But those

things are in people's living spaces. They are not in our office. So, you

have to take action and get out of the office and the desk.

This comes a little from our friends at Dartmouth University, particularly

Deborah Becker. It is from a book about individual placement and supports

model for folks with severe and persistent middle illness. It kind of

reiterates the whole idea that it is not a good idea to use a profile or any

document that is supposed to be serving person-centeredness and career

planning as a questionnaire.

Again, we are not just filling this out, we are getting to know the person

and then coming to the writing. That is a conversation that will flow in a

natural way, connecting with people. Food often helps, as we know, but we

are reminded here from this text that one of the goals of working on a

profile is to develop a relationship. How do you develop a relationship? By

knowing one another. And that if we view this kind of writing as simply

getting a form filled and completed and in someone's file, that really

detracts from the entire process. And I can't tell you how many people who

are great either job developers, are good at customizing jobs, who are kind

of poor at this process. It is important that this process is supported at the

beginning because -- big surprise -- we have turnover in our systems. The

idea of turnover and writing narratively about somebody is intricately

connected. Because I want to leave a trail if we have this turnover of

positivity, endearing traits, possibilities and opportunities, not just label

and clinical documentation.

So that leads us to I think a very natural progression of knowing

someone and then helping determine ideal conditions of employment.

These ideal conditions of employment are connected to how much time I

spend with the person. Writing about those conditions actually helps us

know the person better. I have here Dr. Charon reading -- by the way if

you are interested in that, if you Google Dr. Charon narrative medicine -- I

won't read that now. But it really does connect to writing helps us know

the person.

I will you say this to people all the time if they are stuck? Creating a

career profile, I say "Get out of the document." I will say "Write about

endearing traits, about ideal employment, write the person's dreams. Do it

as though you are writing in a journal." And when you do that, it frees you

from what I call the taskmaster-ey of forms. Forms master us in this field

and we have to be able to break free from that in the narrative.

So, one way to do that, again, without getting inside of whatever form

you are required to turn in your particular role or funding system, provider

agency, state, is to ask yourself some of these kind of broader narrative

questions. Again, outside the form. What must be present or not for this

job seeker to be successful? Shrug off what you have read in behavior

plans and ISP's and individualized work plans. Shrug that off. Don't write

with our human service speak. Write it out. What should the work culture

be. Boy, do we miss this all the time.

We are working with someone who has some significant impacts of brain

injury who also happens to be, if you spend time, a great one-line deliverer,

great sense of humor, wry, funny, but most people don't get that because

they don't spend enough time listening. In a work culture, they need a

person, supervisor, colleague, or both who has that trait. That is about

what work culture is about. Connecting. The old adage: You will leave a

job if you don't like the people but like the task and vice versa.

People are important; the culture is important. Write that out for this

specific person. You can use the person that we did in the earlier exercise

in the presentation.

What are the top three most important elements that need to be present

for success? In other words, I am kind of building on the first and second

bullet. If I had to rank them, write that out.

Why? Think about that. Consider natural supports and write that out.

Not after we place somebody and try to figure out who might take on some

extra duties. But write that out right now, outside of a form. These bullets.

These ways of knowing somebody help us determine ideal conditions of

employment.

In other words, you are really doing what we are doing in narrative

medicine: You are creating a parallel chart; you are writing outside of the

mandated documentation and finding a way to know the person.

One way to do this is to kind of meditate about the person celebrating

one year of success on the job. To imagine that. And then write out who

would need to be the strongest supporter. Thinking past the immediate:

Group home, mom, dad, VR counselor, make it specific to the person and

write that out.

If you do these three/five bullets, I think one of the things you will find

and certainly I find this: Either I have a lot to write or very little and it's a

gauge in knowing how well I know the person. And I think if you kind of

play around with this a little, you will see it will be a way to tell the other

work you may need to do in other settings and knowing the person through

other people.

Well, most of us, again, because of our training in human services, the

systems that we are embedded in, we do have trouble turning what we

experience into narrative. What we observed and listened to and figuring

out how to make that a narrative document.

I think a way to do that are some of the exercises I have given you; and

then, when you get back into whatever document you are using as a way

to provide proof of person-centered career planning, that you think of

sentence paragraphs, not one-word answers, not bullets. The fact of

writing in and of itself helps us understand another human being.

So, we are going to use description; we are going to use anecdotes of

the time with the person. Or a story somebody else may have told us of

the job seeker. We are going to use the narrative threads to make

something that is actually more dimensional than just a Medicaid entry,

Medicaid waiver chart entry. It is a living document, captures the person

through endearing traits, knowing the person in endearing ways. If at

some point you feel like you are filling out a form, the number one reason it

feels that way is because you haven't spent time with the person.

I think all of us want our life experience, our preferences honored. Pretty

interesting, in the hotel this morning, I got a text message from someone I

worked with ten years ago who unfortunately now has been admitted to a

long-term care facility and we are trying to help with that. But I think

because that's difficult for him and difficult for anybody, he texted me and

said hey, do you want to see my prom picture? That is pretty touching to

me. Why? Because that means he is not just a patient in a long-term care

facility on a Medicaid waiver removed from his community. He is

somebody, like all of us, who has life experience, preferences.

To honor that and to use those insights to generate a real profile that

captures a life, is important. Not just filling in a document.

Just some quick reference guides for effective writing: Write notes

immediately after contact. Don't edit those. Read those notes aloud

shortly after the contact. I love doing that.

State information but also use description.

You can edit, friends, and edit out acronyms to make it sound better but

it also helps it stay alive, if you know what I am talking about.

Consider a parallel chart. Again we will return to this at the end.

Share this stuff with the focus person, with the VR counselor, with the

support coordinator. Again, of course, with permission.

In light of how we look at observations and judgments, it is important to

know what is an observation and what is a judgment. Sara is competent in

washing clothes. Observation or judgment? Fred does not want to work.

Observation or judgment?

Fred was not home when I arrived to pick him up for the scheduled

meeting with the owner of Auto Zone. That is an observation. The other

two are judgments. Reading that out loud will help you hear that as well. If

you have not heard about the National Center on Disability and Journalism,

it is really cool. I believe at Arizona State. I think I have the link. We are

using that People First language somewhere important. As we will see later

if we don't we act on stereotypes. Making sure that you use this -- I use the

National Center on Disability and Journalism when I come upon a story

every day by the way that is written kind of poorly and not using Person

First language. I kind of send the reporter the link to the National Center

on Disability and Journalism. Because that is better than me talking to

them as an advocate.

So, obviously, when you are creating a discovery profile, you might again

call that vocational or a career profile. It is important that the job seeker

see that, right, and gets to review.

Sensitive portions. Things that all of us would not probably want about

ourselves, only gets shared per the person's approval. The bulk, though

the Discovery Profile should reflect the ideal conditions of employment.

The strengths, the interests, the supports needed and preferences.

There is already plenty of negative information about somebody. We

have been given the permission here in this document to create something

that is very different than how we usually document services and supports.

So, just a little on descriptive language. You are capturing a portion of

someone's life, so it can't read like the one you just did last week, right? It

has to sound different, read differently. I can't tell you how many that I

helped people review that just could be a very generic discovery profile.

It's important to know that long and words direct our actions.

So, does this help me get someone towards employment or does it put

up more barriers? Do I know the person better after doing the discovery

profile? Can I link that information to specific job development activities?

Does it read well? It can't have Human Services speak in it. If it lacks

those concrete details of settings and experiences and real-life nuance,

then all we are doing is creating something and giving it a different name.

One way to think about this is how would you like to be profiled? How

would you like to be perceived in a written document? If you were the

person. Would there be parts of yourself that you wouldn't want included?

I know there are plenty of things I wouldn't want included ability myself or

my loved ones.

We get jobs on our strengths, right? On our endearing traits, not the

things we are not good at. We want to emphasize the positive

opportunities, endearing traits.

This is a chance to do the opposite of what typically is in our

documentation. Discovery is a document. It ends up as a document.

Whatever name you give it. But it's a process; it's a map that will create an

employment outcome. I don't know why we would do it otherwise.

So, one thing that I mentioned at the beginning is that we wanted to

really focus on the influence of the medical model in our systems but also

stereotypes.

And at this point we are tuning it up a little. And tuning it up, I should

same and editing and rewriting. This is where stereotypes that we are not

even aware of creep in. So, you have to think about the audience for this

kind of writing. Is it in their vernacular? Are the desired outcomes related

to the writing?

Yes, there is a quote here from Bob Seger. What to leave in and what to

leave out. Overwriting is good because it then gives us the opportunity to

shape the in a narrative for the most essential parts.

Reading out loud for clarity is really important.

If you do this well; if you spent time with the person and created a

narrative, then that narrative can be taken into either traditional or visual

resumes and portfolios. In other words, we know about the person well

enough to write about them well enough and create documents that propel

us toward that outcome.

Briefly -- I won't spend much time on that. But this is four audiences of

writing. It links back to me -- I hope you hear this. I hope you don't think I

am saying the deficits-based writing. We do. Know there is an audience

for assessments of eligibility for ongoing disability reviews. There is what

we are talking about today: The audience for a person-centered plan for

employment. There is an audience for behavioral support plans. But,

knowing which audience we are writing for is important. Those three

around eligible, disability reviews and behavior support plans obviously

have an audience. But we can't drag them into the person-centered plan.

So I do this all the time both in creative writing and doing the writing in

customized employment and discovery profiles. I read it out loud. If you

don't do this -- I think most people enjoy it. So give ate shot. Make sure

the room is quite and confidential. Recording this helps us play it back.

Listen for parts that are clunky, repetitive, that aren't smooth. You can do

that in your head. Perhaps you can. It just doesn't work as well. Out loud

really highlights that.

Don't stop. Resist the temptation to stop and edit. You can do that

later.

Again, if you record it, listen back to it. Take notes, repeat it. You can

see by now you that I take documentation in a serious way. Because it

really is about creating a narrative of someone's life. The time I have spent

with that person. The people I have talked to, is really important.

How often does the person's first name appear? This is a way to kind of

do -- earlier we talked about the writing audit. This is a kind of way to look

now at your narrative. You might consider that your third edit. If the

person's first name is not in there, probably not very person-centered.

Choose a random paragraph. Is it 90% focused on strengths? I know

someone saying well, he just wants to sugarcoat their problems. That is

not the issue. But we really want this document to be 90% strengths. My

goodness, we are trying to help the person be employed.

What parts of the text can I use in job development? Think about

endearing traits.

Do I have at least some quoted comment s? It is a person's life, right? I

probably want quotes from people who know them well. Does it reflect

multiple environments? Does my writing only show me knowing the person

in a day program, group home, maybe the library?

How much of what I have written is taken from other sources? We

believe in getting to know a job seeker. We are having unique, real-time

experiences. If I am taking a lot of documentation from other types of files

or charts, that is probably an indication that I am probably not spending

enough time knowing the person. Again, that is rooted in how much of

their writing is based on new experiences. Does the writing create

stereotypes or lessen them? This kind of fine-tuning and editing really

helps us think about stereotypes that we haven't really thought about in

our writing.

So I will preface it with this. The section that we are moving into is really

one of the things just like being aware of how long the medical chart has

existed, how our human service systems use writing and narration and

documentation in various ways.

This is just an awareness. It is something that we have trained people on

and many times bring in different types of literature and texts to do this,

but I am always amazed as a writer, again as a sibling and somebody who

works in our field, how often people get portrayed in stereotypical ways.

There are all kinds of resources for that now. There is a greater awareness

of it. Oddly, ironically enough, there is not enough awareness in our own

system.

So, being aware of what we call these templates of deficit, right, that are

kind of readily used to describe people. That's important. Because it ends

up impacting us in ways that we don't know. I think once you think a little

about this and become aware of it you will notice that not only in

discussions with other people who are talking about labels rather than a

person, but you will see it in different kinds of media, movies, newspaper,

television.

Most of us were required probably in high school or in college to read Of

Mice and Men and you took the Cliff Notes, which I think are called

SparkNotes now. It is a great novel. Steinbeck does a great job of

portraying an individual, two individuals. But because it was so widely

known and regarded, we have carried from it the things that are

characterized in the story throughout other narratives. And I think you will

see that when we go through it.

So, Of Mice and Men has been produced quite a bit, off-Broadway,

Broadway, local theaters. It moves from kind of an individualized portrayal

of a specific person into someone acting out what they think Lennie is:

That he -- we didn't use the term at that time but we know he has an

intellectual disability. And as we act on this template of deficit, it gets

exaggerated.

So from the original text -- and you can make a parallel here to our own

writing. Think about somebody who has a reputation you have read about

and gotten to know the person through maybe progress notes; and when

you meet them, suddenly they are not as intimidating or don't seem as tied

to their reputation as what the notes say. What we are doing is acting on a

template of deficit. We are exaggerating, unknowingly, those deficits. As

you can see it has a ripple effect. More exaggeration and less

individualization creates labels of people and not Lennie as a person. It

gets more and more absurd here, right? That begins to make us have

stereotypical beliefs about someone's label rather than who they are.

You can see this in Looney Tunes. If you are as old as I am the

Abominable Snow Rabbit says "I will name him George and I will hug him

and pet him and squeeze him." That is directly from Of Mice and Men. And

it is a cartoon caricature. So, many people come to know this character as

something that doesn't know its own strength; it is going to hurt you. My

goodness, we have already turned it into some type of hybrid animal. See

what I am saying? So the template of deficit gets more and more

exaggerated. Mickey Rooney, who portrayed somebody with an

intellectual disability in a movie called Bill said that one of his primary

inspirations was Lennie. So, he is acting on these templates of deficit. And

I think if this was a movie being marketed and watched today that we

probably wouldn't make the character have that expression as we see

here. We probably wouldn't put it with one kind of leaning over. It's not

quite right.

The template of deficit, stereotypes invade our thinking, both within our

human service systems and then in media in general. So this is a quick

Google search. I love to see how people are teaching Of Mice and Men.

Mostly because it connects my interest in creative writing and our work.

But this person has written who is a business major. His impression of

Lennie and what he is saying here, being a business major, this is how he

portrays somebody. The real question is, when that person is owning a

business, hiring people, is he able to let go of that template of deficit; or

will he carry that effect into his work; into talking, for instance, to a job

developer.

So, what's the point? Well, if you start paying attention to this, you will

see that these stereotypes are reinforced every day. You can watch The

Green Mile. There are a lot of similarities to Lennie and John Coffey being

large, unintelligent, innocent, right? Both of them, in fact have mice that

fall into their care.

But there is something that I always notice. I will hear people say when I

am out working with providers and families or VR counselors. Well he is

kind of a Rain Man. Well they are taking another template that is created.

Or sometimes they will say he is a Lennie doesn't know his own strength.

Other characters from books and movies that really kind of cement these

ideas of stereotypes.

I bet you have heard people say well the person has Down Syndrome;

they are very, very loving. Or: People don't know their own strength.

These are things we are not even aware. So how do you avoid it in first our

work and then being a good steward when you see it in popular media?

Well, being aware of it. There are plenty of these stereotypes. Folks with

physical disabilities being heroes. They are heroically courageous because

they are able to get up every day. Death is dignity. There is a movie that I

am blanking on right now, just last year made from a book, a romance

where death is dignity. Certainly you see that in other movies as well.

Mental illnesses, obviously, how many movies are somebody having a

mental illness and becoming violent; that people are are sexually deviant

because of certain disabilities. That people are eternal children; that

somehow they have a mind age of blank and X. That people have

extraordinary sensory abilities simply because they may be deaf or blind.

Perpetually affectionate. Again: Intellectual disability. That somehow

somebody is a soothsayer, that is often coupled with Native Americans.

Admirable for just overcoming everyday activities. We see that portrayal

all the time. That diminishes somebody. It puts people in a template of

deficit. Pitiful lives.

The parents sinned. This is always amazing to me that there are still

belief that is somehow someone is born because there has been sin. Holy

innocent. Affectionate. Down syndrome.

Two different personalities. Bipolar. You will see this if you start paying

attention to it. And it is important because it impacts the way we write

about somebody, how we help portray that person to a potential employer.

Well, I mentioned again that we were going to return to the parallel

chart. And I will show you how you we are using this in a couple of pilots.

It is basically an opportunity for any -- we show physician here -- but any

support professional to see somebody through that person's eyes. It is an

opportunity to reflect on our emotions about a particular experience.

We often work with people who are highly isolated; and if that doesn't

touch your heart, I am not sure it's the work for you. So we have emotions

around this work. Using this chart is really the way that people reflect on

the work that we are doing. Just a medical student here who is talking

about experience.

[See Screen]

It was difficult at first, a 2015 quote: "To write a narrative about a

patient . . . without delving into the medical aspect". Same for us. Hard for

me to write about endearing traits because I am embedded in rehabilitation

waiver or support coordination.

He goes on to say it is a great way not only to get stuff off your chest but

also to have the opportunity in a judge-free environment, to kind of look at

the way their case inventions, supports, if you will, are being delivered to

this specific person that this person loves; that medicine is moving in this

humanistic way, in the way of knowing someone's specific narrative. The

way that we know somebody is by spending time, by writing about those

experiences and not using the old way of doing documentation.

So, we are using the parallel chart with employment specialists and VR

counselors. These are six weeks, they are facilitated, confidential. No

one's actual names are used. People are encouraged to read from their

work. Many times this brings about connections to why we are in the field,

journaling, poetry, that kind of thing. The group then gives feedback. If

you have ever participated in any type of creative process, it is very similar

to that. But we look at how is the professional process impacting what we

are trying to do for a job seeker. Engaging that job seeker, knowing that

job seeker. We are going to look at this at three and six and nine months.

In narrative medicine, if you read about that, there are positive outcomes

associated with practicing this type of narration. Then we will collect data

from the employment specialist and the VR counselor just to look at just

some basic kinds of feedback about this process. So I mentioned I want to

give you some sources here, I mentioned the National Center on Disability

and Journalism at the Walter Cronkite School of Journalism. Arizona State is

ncdj.org, a great resource you can send to any journalist who you think has

done a good job portraying somebody in the media or could use just a little

more awareness around the stereotypes we talked about.

On the flip side, one is specifically related to mental health and media at

Mass General Hospital, really interesting that their total submission focused

on the portrayal mental health, mental illness, reducing the stigmas of

substance addiction, SAMHSA.

Spending time on this, on how that impacts people having full lives,

returning to work all that kind of thing. That is the massgeneral.org. Those

are two great resources if you are interested.

I am a frequent contributor to a magazine called The Sun. I wrote an

essay there that was published in November of 2016, actually called

Activities of Daily Living, with respect to my experience of helping

somebody at Central State Hospital before it closed in Indianapolis. And

some of my shortcomings there. The Sun is a great magazine around some

of the work that we do, really, human services, advocacy, social justice.

Recovery. Inclusion, all of that. It's not specifically disability-related, but

certainly the core mission and values.

So you couldn't go wrong by checking that out and then, just finally, our

friends at Dartmouth have great resources on the vocational career profile

that is used in IPS. Certainly griffenhammis.com has a great deal

information on what we call discovery staging record and that process.

Narrative medicine, you can find writing. The pacer is something you have

awareness of perhaps. And ncdj.org and The Sun magazine. As always, I

would love to hear from you. There is my email at the University of

Georgia, crande@uga.edu.

I hope this has been helpful. I hope you have had time to reflect on the

kind of work that we do and how important it is to move from one way of

documenting and narrating supports and services to one that's focused on

endearing traits, possibilities, opportunities, and inclusion. I hope it’s been

helpful. Thank you so much.