PAULA MCELWEE: As I said 
before the break, we're going to

spend a little time in the RSA 
compliance tool, checklist tool.

Actually, we're going to do three 
different segments of this throughout

the next couple of days, 
but this is the first one.

We've talked about what compliance 
is earlier in the day,

a state of being in accordance 
with established guidelines,

specifications, or legislation,
or the process of becoming in compliance.

So that's the compliance side of things.

And in order to be in compliance, 
every center has to meet a certain 
set of standards.

Now, some of these standards 
are moving targets.

They're changing a little as we go along.

There's a couple of good examples here, 
as a matter of fact.

But the regulations that we're bound by 
right now include these OMB circulars.

There are three of them 
that apply to centers.

They include a lot of the guidance around,
around cost principles for any non-profit

that receives federal money, 
as interpreted by the

Department of Education,
which is where we're housed.

The OMB circulars apply in a broader 
scope, but ours are interpreted by EDGAR.

Now, that's all changing.

These circulars are being 
rolled into for a while we were 
calling it a super circular.

Now we're calling it guidance again,
is the term we're using,

but there is going to be some 
new stuff rolling out.

We can't really deal with the 
new stuff yet because it still

hasn't been interpreted by the
Department of Education,

so even though we've got the
crosswalk, we kind of know what

areas are going to be affected,
we're going to go ahead and go

through this checklist from the 
standpoint of what's there now.

We may kind of mention to you that this 
is an area that may or may not change.

Until that is final, there doesn't seem to 
be a lot of percentage in dealing with it.

Yeah.
Maureen?

AUDIENCE MEMBER: So just to clarify, 
Paula, are you saying -- when you're

referring to compliance for this purpose,
you're talking about any center

that receives any federal money.

If you're a center and you don't 
receive any money, this doesn't

PAULA MCELWEE: If you're a 
non-profit -- some of these elements

will not apply if you're a non-profit
that doesn't receive any federal

or state money that was passed -- 
federal money passed through

your state, so your Part B money 
is still federal money,

if you hear that term, Part B.

If you have state money that 
comes from another source,

that's going to be state money.

Often these things also apply there, 
but that would be different from 
state to state.

What we are going to do is look 
at the federally funded pieces so 
we can make sure we got that.

AUDIENCE MEMBER: This is Jack again.

Isn't that that they're supposed to 
meet certain criteria, regardless,

according to the law, regardless 
where the money comes from?

To call themselves a center 
for independent living?

PAULA MCELWEE: We have both 
of them in here.

We have standards and indicators 
that define what a center is,

but they do come because of the money, 
so they come through the Rehab Act

and the money that comes 
through the Rehab Act.

There are other elements, 
though, that come because you

have any federal money, 
not just Rehab Act money.

That's true with these OMB circulars.

The OMB circulars, 112, 122, 133, 
those are pretty easy numbers to remember; 
right?

Those three circulars right now 
are what apply to anybody 
who gets federal money.

I'm not going to go into a lot of 
detail on some of these financial

things, but we're just going to 
talk about what the regs are.

Now, EDGAR expands on them a little bit.

That's part of the Code 
of Federal Regulations.

Soon it's going to be updated to change.

Whatever that is, though, you have 
to conform with your contracts.

And so there are items that may 
show up in a federal contract

that are specific or different.

There may be an item that will show 
up in your grant award from your state

that might not be federal at all, 
it has specific things from

your state that you must adhere to.

The point here is that you need to know 
what your regulations are and you need

to know how you are meeting them as 
part of your foundation for quality.

Most of those regulations are there for 
a reason, and we can't just ignore them.

We have to at some point acknowledge that 
they're there and we're required to meet

those regulations and not give up 
our principles in the process.

Does that make sense?

So these are the -- this is -- there's a 
graphic on the screen right now that has

a pyramid structure, and the 
Rehabilitation Act is at 
the top of that pyramid.

The Rehabilitation Act has a number 
of things in it that's mostly what

the checklist is about 
that we're going to review.

It's mostly about the content of the 
Rehab Act, and what is a center and 
what's required.

There are also, the next level down 
tells you the reference numbers on the

Code of Federal Regulations that 
apply to centers for independent 
living at this moment.

Like I said, some of this is all going 
to change with this new guidance that's 
going to be coming out.

And then that is interpreted by EDGAR, 
the Education Department's regulations,

and then specific numbers 
are listed in the graphic.

So the 34 CFR numbers 364 through 366, 
and a lot of times if you see a reference

in a report that you get or a training 
like this or something else,

you'll have an actual reference that will 
have that number, and you'll see that

34 dot 364 dot 2, or whatever, and then 
that will tell you that that's coming 
from that document.

This is actually one -- one document.

The OMB circulars are folded into 
the part of EDGAR that applies to us.

You can get it in one book.

It's all together.

These aren't separate pieces of 
information that you have to pick up.

It's been all folded together 
so that we can follow it.

But these are the things that we're 
bound by, as well as the generally

accepted accounting practices, that if 
you're big enough to have an audit,

they're going to be checking 
your conformance also against 
auditing practices.

Think in terms of grants and 
contracts requirements,

whatever you've agreed to as 
part of that grant or contract,

which in the case of your 
Rehabilitation Act funds,

includes all these elements, 
are part of the foundation of

what we must do in order to meet 
the bare minimum of requirements.

And these are necessary in order to 
keep the money flowing so that you 
can make sure that it happens.

Now, we're not going to go into detail 
about financial conformance today at all.

The Wiki page on financial management, 
if you go to that Wiki page, you know 
what else you get there?

All the videos.

So we have somebody in the back of 
the room somebody who's doing audio,

we have somebody doing video, 
we have C.A.R.T. folks up here 
doing the transcription,

and when we're done, it gets put 
together in a package very similar to 
the one we showed of Bob Michaels.

So you've got a caption, 
you've got a PowerPoint slide, 
and you've got a video.

And the videos from that financial 
management training that happened in

Pennsylvania last May are up on the 
website, and you can go and see them.

And you can actually watch those videos 
as if you were attending the training.

And they're broken up 
into manageable sizes.

Some of them will go 45 minutes, an hour, 
maybe an hour and a half per topic,

depending on the topic, but you can 
actually go and watch those videos 
anytime you want to.

So we're not going to get 
into that content.

We've got that content other places.

And we've also got all of our resources 
related to this content as Tim showed 
you on the Wiki page.

And, you know, I used to always go to 
the ILRU.org page, then go over,

and I realized I could go to Wiki.ILRU.net

and go straight to 
the WIKI page, 
save a step.

If you want to bookmark both of them, 
you might find interesting information

on both those pages, but it will 
take you there a little quicker.

Anyway, we're not going into that content, 
that detail, but it's out there for you.

If that's content or detail that you need 
where you're coming from with either your

personal experience with independent 
living or your centers, you know,

level of maturity as far as how new you 
are and how well you've been able

to handle all this, all that 
content is there for you.

What we are going to cover today 
is a little bit of how RSA looks

at the issue of independent living 
philosophy because I think this

is where the rubber meets the road 
for a lot of us related to how we 
think of quality.

So we think of quality, much of it, 
coming out of our own history of

disability rights and consumer control 
and some of those other principles.

So we're going to look at that 
related to that, specifically.

And as we look at the checklist that RSA 
has created, it's just a jumping off point 
of structure for the conversation.

So it's not the beginning and end 
of the conversation, it is just a 
framework to give us a structure.

And our purpose is not to just comply, 
but to exceed the requirements in 
those standards.

So when RSA comes to your center, 
as they certainly will in the next

five years, probably, when RSA comes 
to your center and takes a look at what

you're doing, part of what you want to 
make sure you're aware of is what

they're expecting, and then you are 
going to exceed their expectations, right,

because they're also one of your 
customers, and you're going to do it

from the basis of a sound philosophy 
about independent living and not 
from a regulatory standpoint.

Two different approaches.

Do you see what we mean?

So let's take a look at this.

Now, the RSA tool lays out those 
compliance expectations in a 
checklist form.

And that's one of the reasons I like to 
suggest that people use it, frankly,

is that it doesn't take a million pages, 
and you might make notes in the margins

and actually check things off on 
the checklist, an actual checklist.

That's the same checklist 
that they're going to use.

Now, it's not a perfect instrument.

I'll give you a couple 
examples as we go through.

It's interesting that I see -- sometimes 
I see the recommendations coming out

of a question that ended up on the 
checklist that was not the original – 
it was an example.

It was not the only 
thing that might happen.

So, for example, the 
fragrance-free environment; right?

So in equal access in that section on 
the checklist, one of the things on

the checklist is, is the policy 
related to fragrances posted?

Now, that's not an actual requirement.

The requirement is that you have 
a practice and a policy, 
and that you implement it.

But the checklist says, is it posted?

So guess what the report says?

If it isn't posted, you're going to have 
a long conversation about your conformance

because posted is what they're looking for 
because it's easy on the checklist, right.

We're all like that, when we look 
at a checklist, sometimes the

checklist guides our conversation a 
little more specifically than we want,

so we're going to try to break those open
and have a bigger conversation around

them as we go through and try to identify 
as we go through kind of the things that

aren't -- they're more specific 
than helpful sometimes.

That self-review, though, 
will help you make sure you're 
meeting those federal requirements.

It does include regulations that 
apply to all federal dollars, 
not just the Department of Education,

so as we were saying a minute ago, 
those OMB circulars apply.

You know, there's a conversation, 
I'm sure most of you know this,

there's a conversation going on now about 
whether independent living will remain in 
the Department of Education at all.

And even if independent living doesn't 
remain in the Department of Education,

content similar to these circulars will 
still be applied; it'll just be applied 
from a different department's perspective.

But these come out of the White House 
and they apply across all the departments.

So those pieces that come out 
of the OMB circulars apply, anyway.

They may be slightly different, 
but that's -- that still applies 
to all federal dollars.

We want to know and meet our 
legal and contractual requirements.

Using the checklist helps you to do that.

And compliance is that foundation for 
building and measuring quality.

Here's the link, it is a live link 
in some of our stuff online,

the link to the actual checklist 
when you're ready to go through that, 
is in your handouts.

And the electronic version of this 
PowerPoint is on that Wiki page,

so you can click directly if you don't
want to type all those letters, 
because they -- you know.

All right.

When you review an instrument like this, 
it's a tool for checking your own

compliance, whether you use this one 
or the QUILS system or some of the

others that we're going to mention
before we're done, if you use any

instrument to look at how you're 
doing, always take the time to 
actually look at how you're doing.

Don't just check stuff off 
when you're talking about it.

I've been in situations where sitting 
around the table, we all believe

something is really happening, 
but if we go out and look,

we find that sometimes there's been 
something that dropped out of the actual 
functioning of the organization.

Does that make sense?

So when you look at any 
instrument to check your quality,

you need to actually go look at what 
it is the quality -- the measurement is 
measuring.

So if you're looking at consumer 
service records, for example,

which we'll get to a little later, 
if you're looking at consumer service

records or CSRs as they're abbreviated for 
us, if we're looking at those records and

we have a requirement that those 
records include a waiver or a plan,

that's one of the things we usually 
have to see in every record,

unless it's only information & referral, 
in which case you may not have a record,

okay, we see it's supposed to have
a waiver and plan, and we're sitting

around a table and we say, that's our 
policy, that's what we do,

but that doesn't mean that anybody 
knows that there actually exists either

a waiver or plan for all 
of those services.

So when you go back and actually look at 
it, you might find that there's somebody

who isn't implementing that policy.

And until you look at your actual quality, 
how do you know that?

You know they should be.

That's what you know.

You know it's your written policy, 
but you don't know your day-to-day, 
individual practices.

So when we look at any quality instrument, 
you can't just talk about it,

you have to actually 
verify it in some way.

So my suggestion is that you 
write all over that checklist.

You don't want to forget your thoughts.

So you want to write down, yes, 
we have the policy, I looked it up,

it's this policy number, and we made sure 
that we had this training for our staff,

you can find that in the 
staff training records.

Whatever you did in 
relationship to that item.

And then if you are preparing for an 
actual survey in the near future,

my suggestion is that you also organize 
copies of the documents that show

that conformance or put them right 
together in a banker's box or whatever,

but collect them at the time you are going 
through this, so if you have an upcoming

actual review, don't just go through 
the checklist but actually say, okay,

for this checklist item, 
here is my backup stuff.

This is how I prove it.

Our experience is that if you don't have 
the stuff on the spot, that sometimes

they are moving on to the 
next piece of the review.

You didn't get it to them so they are 
moving on and you missed your chance to 
show them you did that one thing.

It's not that you missed all chances 
forever but it works much more smoothly

if you are very prepared, but always 
ask yourself as you look at any

compliance instrument, not only do you 
meet it but do you exceed it,

so exceeding those basic requirements is a 
big part for what we want to accomplish.

So we will think consciously how 
we build on compliance.

First go through the checklist and 
confirm it and then ask what outcomes

or activities can take 
you to the next level.

We will do this with actual items 
from the checklist in a second.

And then identify specific goals that 
should go into your work plan.

All right.

If that's -- if this is a new activity, 
in order to take my center to the

next level in this area of compliance, 
what is my goal?

And then what are the outcomes 
that I am going to report on?

I mentioned the board of directors here.

It may not be the only place 
you might make a report.

You might make a report 
back to a consumer summit.

You might make a report back on 
the webpage or FaceBook page

or whatever it is, however you 
communicate to your stakeholders,

but how do you identify
the outcomes that you

will communicate 
back to any stakeholders.

So that's just kind of foundational about 
why we are looking at compliance at all.

I don't think you can look at 
quality until you have looked 
at compliance frankly.

Because if you don't have
a baseline or foundation

of these items, it is hard to 
figure out how to go to the

next place and we can get ourselves 
kind of all tied up in knots over 
the basic compliance.

Here's the first standard on the 
checklist, they talk about philosophy

and this is also found in what we call 
our standards and indicators.

These are standards and indicators 
that identify what is a

center for independent living,
what do the centers for independent 
living believe and how do they behave?

There are a number of items here 
that are part of that philosophy.

Each one of them has a little more detail.

But as you know consumer control, right,
not just in management but also the policy

and direction of a center 
and among other staff.

So we are going to look at 
how we can make consumer 
control even more effective.

Self-help and self-advocacy.

Development of peer relationships 
and peer role models.

Equal access to all services, programs, 
activities, resources and facilities.

And the promotion of equal access in 
society, whether it's public or private,

in your community at large, 
how do we promote access.

So those are items that are in that 
first evaluation standard that you 
will find on that checklist.

Now, under consumer control, the first 
thing they ask is what percentage of

your governing board members have 
significant disabilities and that's

the actual language in the regulations 
in the Rehab Act and also in the checklist

and some centers are still missing 
this significant disability thing,

so there are two places where the 
disability must be identified as

significant, one in the 
people that you serve,

determining if they are eligible, 
they must have a significant disability.

And the other in the representation 
on your board of directors,

the disability - 51% or more 
than 50% must be persons

with a significant disability, 
and that is true of your board.

so whether you are aware of that or not, 
you need to tuck that one away.

So when you look at that, 
one of the questions that

you have to ask is, 
how do we know about it.

An interesting thing you see when 
people begin to develop the how

do you know if people have 
a significant disability, is that

if the history has been with 
vocational rehabilitation or

that kind of determining 
of eligibility, they want to 
go right back to,

well, do I have to get a 
medical diagnosis or do 
I have to do any of that.

So if any of you think that's true, 
the answer is no.

It's self-disclosed, always.

But you might ask yourself, 
what is my best practice to get

the right answer from the people who 
are interviewing to be on the board.

So help me with this a little bit.

I want you to think with me.

Consumer control is the out – 
one of the outcomes I want to have.

I want to have consumer control, 
over 51% consistent with disability.

What is the best practice?

And I will give you an example.

One best practice might be to 
have a board application process.

Because you give people an opportunity to 
self-disclose disability at the time that

they say I would like to be on your 
board, yes, I am interested on being 
on your board.

It makes recruitment easier.

It provides a place where right there you 
can explain the philosophy a little bit

if you'd like to, because sometimes 
you are working with people who may

not be familiar with your center,
but that you think are important 
parts of your community.

So you can take a look 
at how you would do that.

So one best practice is 
a written application.

What are some other best practices around 
board recruitment to get you to that more

than 50% which is actually 
what the Rehab Act says.

We just say 51% because 
it's the same thing.

Anybody got an idea?

What are some best practices around it?

Let's hand you a microphone and 
tell us what you mean by that.

AUDIENCE MEMBER: Advocate to 
have consumers on the board.

PAULA MCELWEE: So meaning
actual consumers who have 
received services at your center.

Bob Michaels in the 
Independent Living Ideal blog

that he does had a really interesting 
article about how perceiving this as

actual consumer representation rather than 
representation by people with disabilities

who've never received services 
can completely change the 
way a center thinks.

So that is interesting.

Other ideas, what are some best practices?

This is a fun one.
Maureen.

AUDIENCE MEMBER: Targeted outreach?

PAULA MCELWEE: Targeted outreach 
meaning.

AUDIENCE MEMBER: It is helpful 
to have a wide variety of differing

disabilities and sometimes your board 
can meet the criteria by loading all up

with a specific type of disability that is 
not necessarily in the best interest

so reach out to disability populations

in all kinds of fashions, 
for some of those you are 
currently short on in a board.

AUDIENCE MEMBER:  We have a 
spirit of ADA award every year and it

goes to the person with a 
disability and almost every

single one of them is a 
member of our board so

it is awesome and 
keeps repleting itself.

PAULA MCELWEE: So you find 
those new board members because

of the spirit of independence 
and spirit of ADA.

Good.

Other questions or comments?

So you can think about what are some 
best practices that would help you to 
recruit board members.

Does anybody here struggle 
with board recruitment?

So this is a pretty important one 
to stop a minute and talk a

little more, I think, because I 
hear that all the time from centers.

They are always saying to me, 
how do you recruit great board members.

Actually it is not just centers, 
you might not be surprised

to hear that most nonprofits struggle 
a little bit with how to recruit great

board members because you want 
that perfect mix of people who are

involved and yet not too involved.

[LAUGHTER].

So how do you find those perfect people 
out there that are going to be the

board members you are looking for?

AUDIENCE MEMBER: Well, I don't know 
if you said it or not but to have board 
members recommend people to the board.

PAULA MCELWEE: Yes, have board 
members recommend people to the board.

One of the things I have seen with the 
application process is that the –

thank you, I am getting – the application 
process gives you a chance to not promise

people a seat on the board 
while you are considering them.

And I bet every one of us has had 
an experience where at some point

a board member said to their 
friend, we need board members.

Come on, I will put you on the board, 
which of course is not their choice to do

but then it is suddenly a very messy 
re-teaching and struggling a little

bit with how to undo this potential 
risk that this board member 
has brought to your table.

Where if you have an application process, 
they can give them an application to be on

the board and then there is a process 
for reviewing those applications and 
finishing out that process.

Yes.

AUDIENCE MEMBER: Yes, that's 
understood, we have an 
application process and we also

interview each board member with a chair 
of the board and the executive director

to see what the person's motive is.

After that, we will get back to them 
and if not, we will tell them why.

It's not a problem.

PAULA MCELWEE: Yeah.

Yeah.

It is a real important option to be able 
to have because otherwise you end up with 
untangling a delicate situation.

Back there at the back.

AUDIENCE MEMBER: You 
don't throw them away.

You bless and release them.

[LAUGHTER].

PAULA MCELWEE: Oh, I like it.

I like it.

Never throw them away.

Always bless them and 
send them on their way.

You know, when you look at those potential 
board members, too, we usually try to have 
a somewhat representative board.

We are a cross disability organization.

Hopefully we have people from 
different disabilities represented 
on our board of directors.

Now I will ask -- I will get 
to you in a second.

I will ask you a touchy question, 
how many people use ASL on your 
board of directors?

We are not doing good there nationally.

Nationally we're not doing good.

There's lots of reasons, but we really 
do need to look at that cross disability

approach, right, across all disabilities.

So tuck that one away.

A question or comment back here?

AUDIENCE MEMBER: I am 
interested, do you have a

physical application or do you 
have a virtual application?

I know a lot of board members, they have, 
I call them virtual applications because 
I never saw it black and white.

They come in and apply.

We talk to them and then that's the 
application motto but you are saying

to have a real black 
and white application?

PAULA MCELWEE: I am talking about a form.

You want to have it simple so it is 
not a barrier to involvement,

but a one-page form.

Here is part of the reason for it.

You will have to document that 
they self-disclose a disability.

So if they check that box and sign 
the form, you have the documentation

so it kind of gives you a simple 
way to document that on the other end.

The other thing that an application 
process, a real paper application does,

is that you can ask them about their 
areas of expertise and you are looking

for across the board expertise, 
not just in areas of disability

but also in areas of expertise, right, 
so you want somebody who knows finance.

You want somebody who knows personnel law.

You want somebody who 
knows disability rights.

You want somebody who knows a 
number of different things.

And sometimes you can identify 
those and that may also be a part 
of your application.

I have seen some applications that include 
those kinds of areas of expertise right on

the checklist and so they check those 
boxes, too, which ever ones they feel

apply so you can get a 
sense of who they are.

And sometimes when you are keeping 
those applications and blessing and

releasing those candidates, sometimes 
you may say to yourself, you know,

this would be a good 
candidate to consider when.

You know, at a later point.

So you don't want to 
necessarily cut them off.

Sometimes they may be candidates that 
could be useful to you to explore

a little bit about how they work in 
a group by seeing if they would serve

on a task force to explore 
some specific area.

So those are some other best 
practices that we see out there,

is how are you cultivating 
board members.

Right?

So if they're not ready to be on 
your board of directors right now,

they still may have a leadership 
role or have the potential to learn

and grow into that board role if you 
give them an opportunity to do that.

So that's one of the other ones.

The board being a principal 
decision-making body is another

item under this in the checklist, 
and they ask you that question, then,

is the board the principal 
decision-making body,

and there has to be good record-keeping 
to know the answer to this question.

So if you've got great board meetings 
but lousy minutes, well, then there's

no way to tell that the board 
actually was making the decisions.

Interesting, huh?

One of the things that I've 
seen in a good practice

around this is -- policies 
and procedures, yes.

Great minutes, yes.

But another piece of that is an analysis 
of the decision that's going to be made.

It can be a one-page brief, and you 
would say on that piece of paper,

whoever is presenting it, 
might be a staff person,

might be the executive director, 
might be a board committee,

but whatever decision they're 
presenting to the board,

there's a summary of the issue, 
any background that you think is

necessary, and then a list of 
potential decisions, you know?

Decision one, we could do A, B, and C.

Decision two, we could do just A and C.

Decision three, we could do nothing, 
but here's the response -- here's 
what will happen.

And then a recommendation if the 
committee has made a recommendation

on which decision, and then you vote.

Now, suddenly, the board has information 
at hand around the entire conversation

that took place before that board 
meeting around that object.

You see what I'm saying?

So you have that brief that 
gives you the information.

Hopefully, it can keep it to one page, 
but that's something they can read in

advance, if it doesn't make sense to them, 
they can come prepared with questions.

If they think of an option that the 
committee didn't think of or that

they think is better, now you've 
got a framework for that conversation

to happen efficiently rather than just 
highjacking the meeting off into

a side conversation, which is what 
sometimes happens if they see

another option but can't 
see the structure.

So that's another practice that I see.

What are some other practices that are 
important for boards making decisions?

How about this table right back here?

AUDIENCE MEMBER: I just 
want to comment related 
to your last comment.

I had an individual, an attorney talk 
to me and said that the minutes were 
too broad, too inclusive,

and that the potential for being used in 
court if a board -- if the board had –

were making a decision, they made the 
wrong decision, if they went back

and looked at data showing that 
someone had presented that, that it 
could come back and haunt you.

And so that person recommended only 
document your motions and whether 
they're being passed.

PAULA MCELWEE: Well, you know, 
that's an option.

You can certainly take that approach.

Most of us spend too much time being 
worried about what we can get sued for, 
maybe some, not enough.

I did do an interim where I walked in the 
door and they had four pending lawsuits, 
and it was pretty ugly.

But hopefully, you're not in 
that kind of situation.

And if you're not in that kind of 
situation, the question you ask is,

what helps the board 
to make a good decision?

Now, if you don't want to make that 
part of the minutes, keep it in the

board packet and not part of the minutes, 
I guess you could handle the information

in different ways, but how do you 
get the board the information to 
analyze and decide on something?

And they're not actually the decision-
making body if they're just saying 
yes to whatever you ask.

So there's the distinguishing piece.
Right?

So the distinguishing piece that people 
externally are going to look at from

us is, how do we give them the tools to 
make the decision, because they're 
not part of the day-to-day, so I don't know.

Anybody else might have 
some feedback on that.

AUDIENCE MEMBER: Larry Grabel with 
the Service Center for Independent Life 
in Clairemont, California.

What I do is, two weeks prior 
to the board meeting,

if I have any new policies 
and procedures

or bylaws, I send them out to them.

I give them two weeks to 
give me feedback.

Two weeks later we vote on it.

Then, if it is approved, 
I sign it and the board's

secretary signs the original copy, 
and it goes on file.

PAULA MCELWEE: Okay.

So you've actually told them in advance, 
and then they sign the actual decision.

Okay.

Did you have a comment here?

AUDIENCE MEMBER: Yeah.

I found that in working with boards, is, 
when you're taking the minutes, record –

record the board meeting so that when 
you do go back to transcribe the minutes,

you've got the conversation 
around the decision that was made,

and just put a general 
description in the minutes

so that if there's a question 
about it, you've got it documented.

PAULA MCELWEE: If you do that, 
a legal advice that I got one time was, 
don't keep those tapes.

You use them for the purpose 
of creating the minutes.

As soon as the minutes are approved 
at the next meeting, you can tape

back over them because then they can 
become a document that has legal 
bearing if there's a case like that.

We haven't talked about situations where 
the board might meet without there being

minutes kept, but usually we're 
familiar with executive sessions.

Right?  
So there may be potential that 
all that would happen is that

you would tell the decision of the board, 
but none of the discussion would be

recorded in any way, either on paper 
or on a voice recorder.

The advantage being that especially in 
personnel matters that are very sensitive 
are handled in that private meeting.

Now, every state is different regarding 
how they look at open meetings and

who is required to be in an open meeting.

Centers typically, as non-profits, 
don't fall there, but in some states

they do because of the way the state 
interprets the money you receive.

So you need to know your own laws about 
what meetings have to be open and

closed and when you can do -- when 
you have to announce your meeting

in advance and don't, because that's 
an important thing for you to know 
for your own compliance.

Kind of a side note there.

Yes, back here.

AUDIENCE MEMBER: I have a question.

This is Mary Lou 
from the Michigan area.

When it comes to the board being the 
principal decision-making body,

how do you balance their getting down 
into the weeds of the day-to-day business

and being able to provide them 
with just enough so that they can 
make a good decision?

PAULA MCELWEE: Isn't that where 
the rubber meets the road for all of us?

AUDIENCE MEMBER: Yes, it is.

PAULA MCELWEE: It really is, because 
the board has to make the broader policy

decisions, has to be aware of the 
decisions that you're making as

an executive director, if you're 
the executive director, and yet not 
get involved with your decisions.

My suggestion is, and maybe there 
will be some other comments about that,

but my suggestion is, these outcomes 
that we're coming up with before we're

through with this week will 
be a big part of the solution.

Because if you work with a board on what 
outcomes they expect to see, and then you

report to them on those outcomes, 
they shouldn't have to see the 
day-to-day business.

They should see that you are carrying 
forth their mission, and here's -- and 
here's the measurement of that.

Does that make sense?

So this can be a partial solution to the 
tendency of some board members to 
get involved in the day-to-day stuff.

I'll tell you, some board members have 
gotten burnt, and they trusted and thought

everything was fine, then somebody came in 
and showed them everything wasn't fine,

and they realized they were not doing 
their fiduciary duty, and suddenly

they are hurting and the center 
is crumbling around them,

and they come back in with all guns 
blazing saying, I'm not ever going 
to let that happen again.

And it is more difficult, probably, for 
the director -- the boards of directors

of centers that have been through 
a crisis to let go than you can imagine.

I mean, it really is difficult to 
bring them back to that point.

And the only way that you can is 
that you have some really solid,

dependable measures that help 
them see that you are doing what 
they ask you to do.

And if you've got good, solid 
outcomes along that line, 
they will begin to trust again.

But especially the ones that have been 
burned in some kind of a situation

where they weren't paying attention and 
something went south very quickly,

and they ended up in some tough 
situations, it is hard to get 
them to let go.

I don't know if anybody has some 
principal decision-making without 
being a day-to-day detail person.

Does anybody have other advice 
on best practices for that?

Yeah.

AUDIENCE MEMBER: This is Audrey 
from Three Rivers in Kansas.

I think something you mentioned earlier 
in the day that was really helpful,

I stepped into a situation where the 
director had been absent due to illness

for a long time, and the board president 
was pretty much running the center.

And so we got from -- borrowed from 
another CIL the decision making chart.

It really was very specific, here are things the 
board does, here's what the director does,

here's what the management team does, and 
that helped all of us get through on that.

PAULA MCELWEE: And clarifying 
and agreeing on whose roles it

is to do what is an essential 
part of that for sure.

Back here.

RICHARD PETTY: It means an ongoing 
relationship with your board chair,

it means an ongoing relationship with your 
board committees, and it means continually

making sure that -- that you're 
reinforcing the ongoing relationship

and the ongoing roles of 
what's a board role, 
what's a director role, 
what's a staff role.

And when you neglect that, 
that's when things begin to fall 
apart for many center directors.

PAULA MCELWEE: That's well said.
Well said.

Another comment or -- I thought 
I saw a hand.

Could have been my imagination.

Maureen.

AUDIENCE MEMBER: I don't recall how 
long ago it was, I know there's been some

great trainings through ILRU and 
IL-NET on board management,

board development, and there's 
been some really good tools that 
have come out of those trainings.

I think lots of times, board members, 
they are volunteers and their hearts

in a good place, but they really need training 
and this discussion and this work that

Richard was talking about, but also 
some tools, you know,
checklists and how to understand

financials, and some of those great 
guidances that are out there.

So I'm not sure how far we went back to 
archive those for Wiki, or if there

are some still available, but there's 
been some great things come out.

PAULA MCELWEE: There's been 
a lot of good board resources.

I've sent people to those on a regular 
basis because usually I'm working with

centers where the boards are waking up, 
maybe is the word.

They've had a review and suddenly they're 
asked to do things they weren't asked

to do before, and so they're trying to 
come through that with a reasonable

approach and a balanced approach 
between who does what and how 
that's going to work.

And I've had board members who have asked 
that very question, of how do I show that

I'm responsible as a board in the 
decision-making process, without being 
involved in the day-to-day.

And they really cannot see that, 
that path, unless you assist them.

One of the key things, though, is, 
you hold an executive director accountable

for what happens day to day 
through these measures.

And there are other ways to do it, but 
a lot of the other ways are pretty faulty.

If you've got good data and you have good, 
consistent attention to the goals that

you've set, the outcomes that you've 
identified, then you have good,

consistent information given to the 
board that tells them what they want to

know as they continue with their 
oversight of your organization.

Does that make sense?

Other comments or questions on that one?

Do you see how each item on the checklist, 
though, needs to be sorted out for your 
organization?

Can you already see that 
from just this one item?

So just this one item has sorted out 
a number of pieces around the board.

Which one of those -- where are you?
You know?

Which one of those has to be 
sorted out for you with your board?

And what is that going to look like?

So that's an important thing 
for us to look at.

The second part on that checklist item is 
the 50% -- over 50% of the employees in

decision-making positions are 
individuals with disabilities,

and over 50% of staff positions are 
filled with individuals with disabilities.

And if you have any lack of clarity 
on this, each of those -- each of 
these must be true.

So all staff must be made up of more 
than 50% persons with disabilities,

and the decision-making positions 
must be made up more than 50% of 
persons with disabilities.

Neither of these require a significant 
disability; both of them must be true.

Sometimes an organization will ask, 
well, what do you mean, 
decision-making positions?

Because this is the language.

You get to define that.

So you look at your organizational 
chart, and who's over what, and 
how you do management

team if you do and all that kind of stuff, 
and you can define that these three people 
are in decision-making positions.

They are a management team.

Here's what they do.

And of those three then, two must 
be persons with disabilities.

Right?
Because more than 50% of three is two.

Now, if you have a very small organization 
and you have one executive director and

no other people in decision-making 
positions, more than 50% of one is one.

If you have a small organization, 
but you have a program director and

an executive director and, you know, 
they both work for this very small

center, but they both are in decision-
making positions, more than 50% of 
two is two.

More than 50% of two is two.

So those are things that are good to 
kind of know what the requirements are.

Those are the requirements.

So the best practices that you're also 
looking at the makeup of your community 
with your staff and board makeup.

So you will also sometimes see goals set 
around reaching out to certain community

in your city, so maybe you are going 
to reach out to the Latino community

in your city so you are going to ask 
yourself, well, do we have any Latino

members on our board of 
directors and then you going

to ask yourself do we 
have any staff that are

Latino and then you are going to ask 
yourself, does anybody speak Spanish.

So you will ask yourself a series of 
questions based on the thing you 
want to change about your center.

It feeds all the way back to the makeup 
then of your board and staff so the outcome

may be that you want to increase the 
number of people that you are able to reach

who live in a certain demographic, 
but the how to do that is going to blend

through all of the other aspects of what 
you do, including these areas, right.

So that's one best practice I see, 
is that you have identified your community,

your unserved and underserved 
community has to be identified.

It's another one of those things on your 
704 report, right, how are you doing that,

how are you reaching out to I don't 
understand why they can't just be

underserved because anybody who is 
unserved is also underserved,

because -- unserved and 
underserved communities.

I am sure there is a reason 
I just don't know it.

So anyway how you are doing 
that and how you are reaching

the groups that are 
traditionally under represented.

A best practice is looking at your
board and staff makeup related to that.

What are some of the best practices 
around consumer control and staff and 
board and how you approach that?

Any other ideas that have 
come from you guys.

AUDIENCE MEMBER: It's not so 
much a best practice as

a question, is how is
RSA now counting

employees as -- for the 50% before it 
used to be you would have to add

everybody if somebody moved, left the 
organization and you had to add that time

and then the new person that came on, 
is that still the process?

PAULA MCELWEE: Well one of 
the things that they've specified 
is that if you have any kind

of involvement with hiring of 
attendants that those don't 
count in the count so that

group is set aside and then the rest 
of it is just based on FTEs, is my

understanding, so that's what 
I am seeing in the reports.

No?
Maureen is frowning at me.

What do you see?

AUDIENCE MEMBER: I don't know 
that I am seeing anything.

I just don't know if I agree with that.

PAULA MCELWEE: Well, yeah.

AUDIENCE MEMBER: The other 
thing we struggle with a lot 
and I certainly don't have any

answer for -- is people who fill out, 
particularly staff, who fill out –

disclose secretly, privately, 
confidentially that they have

a disability, it is kind of like 
being in a closet and working in

a gay organization, do you count 
those if they are not out?

Because part of this whole 
business is to be a peer

and to be able to be able to 
talk about your experiences.

So it is great if you haven't and 
we hope you come out but maybe

they should not be counted 
until they are outed at a party.

PAULA MCELWEE: I think that 
is a really good question because 
EEO regulations would require that

you cannot disclose their disability 
unless they choose to do that so

I know it's backwards for us, 
but in order to make that make sense,

you are not able to, then, disclose 
it if they don't disclose it.

So like you do in your interview process, 
when you say to the person who is

interviewing, you tell them everything you 
can tell them about how we are a disability

run organization and we have a majority of 
persons with disabilities and then you

ask and what is your experience with 
disability, and they disclose or they

don't, but you hope if they have a 
disability, that they will disclose 
at that point.

Disclosure is a very personal thing.

You really can't cross the line on that 
disclosure issue, I don't think, but I

think FTEs is the answer to your question.
So they are looking at that.

Yes.
Do you have a microphone

AUDIENCE MEMBER: This is Lisa.
I must tell y'all, I am from Ohio.

What do you do with a staff member who 
doesn't disclose, or maybe even they

don't know they have a disability but 
it is maybe clear they have one?

PAULA MCELWEE: There isn't 
anything you can do.

I can tell you the conversation that 
Gina McDonald had with me but she was

not my employer and I was not hers and 
some of you know Gina from your past 
years in independent living.

She is also from Kansas and she was 
a past NCIL president, NCIL board

member and so forth, but she came 
to me one day and she said,

I don't understand why you don't 
disclose a disability.

Now, she is my friend.

She can say that.

And I can say to her, because she is my 
friend, well, I just feel like I would

be trying to pass and I don't think 
I should do that and she can say

to me because she's my friend and say, 
you know, I used to feel that same way

about that and Justin Dart took me aside 
and said Gina, you have a hearing loss

and I know you do and yet you still aren't 
disclosing a disability, why is that?

And do you know what if Justin can ask 
Gina and Gina can ask me and I can ask

you but it is all from a friendship basis, 
what you cannot do in the center is get 
involved in the employment piece.

So as the employer you can't 
require them to disclose.

You can talk about it at a staff meeting.

You can train.

You can provide lots of information 
about it but you cannot -- you can

neither say to someone I believe you have 
a disability, nor can you say to them,

why don't you disclose your 
disability if they are your employee.

AUDIENCE MEMBER: So you 
cannot count them 
without a formal disclosure.

PAULA MCELWEE: You can only count 
the people who disclose to you they

have a disability, so even if you think 
they probably do, we can all make those

judgments on the side, right.

So I have heard somebody say, 
well does the board president

have a disability because 
I am sure not seeing it.

Well, do you know what?

If he discloses it he has a disability.

If he doesn't disclose it, 
he doesn't have a disability.

And that's where we have 
to draw the line, right,

but it's a very odd place 
for us to be sometimes.

AUDIENCE MEMBER:  So if 
you have a lot of part-time

employees, how do 
you look at that?

Do you count two part-time 
as one full-time?

One as one -- how does that --

PAULA MCELWEE: You count 
up the number of FTEs to

see how many people would 
have to have a disability in total.

I don't know.

That's the most recent time I saw it done.

That's how I saw it done, so I am really 
kind of scrambling on that one.

I don't know if anybody has more recent.

Richard has some disclosure 
for us on that.

[LAUGHTER].

RICHARD PETTY: I am sure 
everyone understands FTE, 
full time equivalent

but we will -- maybe if you can 
just walk through that for a minute.

PAULA MCELWEE: Sure.

If you have a full-time equivalent it 
is forty hours at your organization and

you have four people that work ten hours 
and of the four that work ten hours only

one has a disability and you only count 
that as  .25.

But eventually it will all add up to 
a number that is more than, you know,

may or may not be a full person but, 
you know -- so you are going to end up

doing it on a percentage basis putting 
it all in there and then adding it up 
and saying is it more than 50%.

And that's -- that's the way I have the 
formula done, so if you have another

formula I am not sure it is cut in stone.

If you have another way you want to do 
it and you want to look at the numbers

of people, as long as you have more 
than 50% of the numbers of people,

I think that is actually more inclusive 
of disability right,  than the FTE option.

I think the FTE option is just an option.

But I think you can do either one.

Does that make sense?

All right.

So you can see how as you think about 
the best practice in any one area,

it causes you to ask all kinds 
of questions about what you 
are doing right now, doesn't it?

Isn't that interesting?

So as you look at compliance and you sort 
out compliance, you begin to think about 
how can I show that, how can I be that?

How can I do that?

What can I show for my outcomes, 
and it leads us through these 
conversations around each of these items.

Here is the next one.

Let's see if we can do this as a group.

Let's come up with best practice ideas.

The next one is self-help 
and self-advocacy.

Promote self-help and self-advocacy 
among individuals with disabilities.

So what are some best practices?

Now, I cheated.

I gave you a few to start with on this one.

So consumer service records 
clearly reflect self-advocacy 
on both goals and notes.

Consumers interviewed are able to 
indicate ways that they are learning 
to advocate for themselves.

Maybe your calendar shows 
self-advocacy events.

Those might be ways you could 
count it or look at it and measure it.

What are some other things you can do 
around self-advocacy and self-help?

AUDIENCE MEMBER: You can 
provide instruction on it, have --

like we have workshops 
on self-help and advocacy

and how to advocate and 
then have people come and join--

PAULA MCELWEE: So it could be 
a class or group that is meeting

around that, you can show that group.

A lot of times this overlaps with your 
peer support, right, so a lot of times

you will see this overlap with peer 
support because it's a good fit to

think in terms of self-advocacy 
with a group of peers.

You will see that sometimes.

What else do we see?

What are you guys doing that 
is like really super in this area?

Anybody have a good practice 
you want to share?

AUDIENCE MEMBER: Our transition 
training, we always include 
advocacy throughout that for the youth?

PAULA MCELWEE: From school to 
the rest of life?

Yes.

PAULA MCELWEE: So youth transition.

Yes.

AUDIENCE MEMBER: We have --

we support several different 
community advocacy groups so we do

provide training but then they actually go 
out and do advocacy work in the community

and we provide platforms for them to meet 
with legislators and have conversations.

AUDIENCE MEMBER: We're 
starting to build community 
self-advocacy groups that—

our systems change person is going 
in and starting to form those groups.

PAULA MCELWEE: What does 
that mean, community 
self-advocacy groups?

AUDIENCE MEMBER: In cities, 
we are going in and finding 
people that have an issue.

We are teaching them how 
to deal with the issue.

PAULA MCELWEE: So city wide 
looking at it?

AUDIENCE MEMBER: Yeah.

PAULA MCELWEE: Community, community.
Okay.

AUDIENCE MEMBER: We represent 22 cities.

PAULA MCELWEE: Yes, a 
lot of cities involved.

Right here.

AUDIENCE MEMBER: It is 
consumer to consumer.

We help consumers share with 
other consumers, the steps they

took to self-advocate for themselves 
and their experience so they can -- so 
others can learn?

PAULA MCELWEE: That's another 
overlap with peer support, isn't it?

How do you record that?

How do you measure that?

How do you know that self-advocacy 
has happened consumer to consumer?

AUDIENCE MEMBER: Well, it's 
documented as a result

of that consumer following 
through with that

individual steps and whether 
they were successful or not.

PAULA MCELWEE: Okay, so as you are 
looking at the individual outcomes you

will see the evidence of some of 
these things we are talk talking about.

AUDIENCE MEMBER: I am 
Cathy Fuller from Services

for Independent Living along 
with Lisa in the Cleveland, Ohio area

and we are in the process of developing 
a systems change coalition and we are

bringing in providers, family members, 
you name it, but we have a significant

number of consumers that are on 
that so to me it does two things.

It helps to build advocacy skills but 
it also teaches the professionals and

the other folks about self-advocacy and 
the independent living philosophy and 
that kind of stuff so.

PAULA MCELWEE: Excellent.

Comments or questions?

Richard back in the back.

RICHARD PETTY: I was just going 
to ask how many centers have a really 
solid relationship with an ADAPT chapter.

PAULA MCELWEE: Raise your hands 
if you have a solid ADAPT relationship 
with a chapter on ADAPT?

Only about two and they may be 
from the same center, they are sitting 
at the same table.

Yes.

One center here is admitting to it.

Hmmm.

RICHARD PETTY: Let me 
just do a plug, guys.

That's going to be self-advocacy at a 
level that's absolutely tremendous.

And when -- when ADAPT comes to your 
town and does a self-advocacy training,

it gets real experiential real quick, 
and that is -- it's -- can help your

center become even more vibrant, 
and connected to the community

and it is a good support for the 
ADAPT chapter, too, things happen.

PAULA MCELWEE: Okay.

There's your plug from ADAPT.

It's true that there are 
things that we cannot say.

We get into this -- the 
lobbying question,

which we can do another 
time, too, but sometimes

the civil disobedience piece, 
sometimes your board is

not comfortable with that 
on the part of the executive director.

Some of them are.

Some of them are, but some of them aren't.

So ADAPT can help take over some of that.

Yeah.

AUDIENCE MEMBER: One thing -- 
can you hear me?

One of the things that we do is when 
there's an area of concern within

our community, that we have one of our 
consumers be part of that problem-solving

within that area of concern so we're 
within that system, and we find a lot

of successful system changes because we 
have various consumers within that

developmental process and solving the 
problems which --

PAULA MCELWEE: So what drives that 
development of solving the problems then?

How do you involve the 
consumer, at what point?

AUDIENCE MEMBER: Well, 
first I bribe them.

When an individual comes, for example, and 
they're concerned about transportation,

and they're wanting us to go and advocate, 
what we do is, there's a -- there are

times when we meet and can be part of 
working with that transportation in

resolving, and then actually having 
that person right there,

smack dab in the middle to 
hearing the concerns on both sides

and advocating for the accessibility 
of that transportation.

They become processing, learning about 
transportation as a problem-solver,

and also as a rider, and 
they become empowered.

PAULA MCELWEE: And how do 
we capture that when we're 
telling people about our outcomes?

AUDIENCE MEMBER: That's a 
really good question,

because we oftentimes, 
we don't do a good job

on capturing all of the things that 
would count, and those are –

because sometimes what 
we have is we have support

groups, and from that they hear

that Nancy did this, then we have other 
individuals by that peer, and they

also get involved in the other types 
of coalitions and community meetings,

and because of that one incident, 
we have a trickling effect.

And that is a big area of problem.

We really don't capture that well.

PAULA MCELWEE: Although 
I want to say one thing,

and that is, that it's 
happening is fabulous.

All right?

And we don't ever want to lose that 
kind of person-to-person excitement,

and the effectiveness, 
when somebody is effective in advocacy,

how that effectiveness kind of generates 
energy out to all the other things

that we might be thinking about or doing.

Never underplay that.

That is so important.

It's foundational to who we 
are as centers; right?

It's so essential to what we do.

But we also want to find ways to make 
sure that we're capturing it so that we're 
helping ourselves to do it more.

AUDIENCE MEMBER: And that 
is -- I mean, we're doing it, 
we capture a little, but I really –

but we are not capturing 
it as much as we probably 
could, and that's why I'm here.

PAULA MCELWEE: Yeah.

Okay.

Well, good.

We'll have to come up with 
some more ideas on that one.

Anything else around the issue of 
self-help and self-advocacy?

Other ideas for how you might capture 
or measure self-help and self-advocacy?

Okay.

Let's take a look at peer 
roles and peer relationships.

Now, again, there's a connection 
between the two.

Really strong connection between 
how self-advocacy happens and 
how that's shared.

Often we learn it through 
peer relationships.

Right?
Often we do.

And the CIL promotes development of peer 
relationships and peer role models among

individuals with significant disabilities 
because remember, everyone you serve

outside of I&R has a significant 
disability based on eligibility criteria.

So common practices, we see peer groups.

We see peer-to-peer 
relationships developed.

Sometimes those relationships are 
volunteer, sometimes they're formal,

sometimes they're informal, 
so you sometimes see almost

a matching process for 
peer-to-peer relationships.

And then regularly convened groups count, 
but so do any other peer relationships.

Certainly the hiring of staff who have 
disabilities as a part of promoting this 
philosophy within our center.

What are some practices that you've 
seen or observed or heard about that

you think are important and 
how would we measure those?

Okay.
Over here.

I don't know, is that Lisa?

Yes.

PAULA MCELWEE: Okay.

AUDIENCE MEMBER: This is Lisa again.

I am in the process of developing 
a big peer/little peer program.

It's going to be a teenager 
with disabilities matched with 
adults with disabilities.

She's very excited about this project.

PAULA MCELWEE: There are a lot of 
youth things that are happening that

I think are so exciting to see, 
coming out of this,

both youth peers to youth peers, 
as well as other center peers, 
so that's exciting.

That's good.

What other things are happening out 
there that are exciting and best

practices around peer-to-peer 
relationships?

Now, I heard a conversation out of your 
definition for quality over at this table,

around being a more inviting setting.

I want to talk about 
that for just a minute.

You know, I'm old.
See the gray hair.

I was first involved with centers in 1979.

Some of you predate that, 
but not very many of you.

That's -- you know, half of you 
weren't even born yet.

But anyway .  
No, it's not quite that bad.

In the beginning, 
we were a really vital community.

I don't know how else to say this.

We got together, all the time, 
about everything, because there 
was so much that needed done.

Right?

So we got together and we talked about 
transportation and we met with these

people and we brought those people 
in to talk about, you know, what we

could do with improving the housing 
situation, and we talked to,

you know, everything, everything 
that came up was a group activity.

We had a very vital, 
active disability community.

Some of the centers that I've had 
a chance to visit with recently have

still kept a very vital, 
active environment at the center,

but some of them, when I walk 
in the door, I'm thinking,

it just looks like an office.

I can't tell it's a center at all.

There's nothing happening here that brings 
people in the door, except one at a time,

maybe, to meet with somebody, but maybe 
they're doing that on the phone or,

you know, e-mail or all this other -- the 
vital community piece isn't always there.

Is it essential to have 
that if you're at a center?

And if it is essential, 
how do you make it happen?

Is it essential, or not?

What does everybody think?

Think so.

Yeah.

PAULA MCELWEE: All right.

How do we make it happen?

Soup.
Soup and coffee; right?
As a start.

Okay.

AUDIENCE MEMBER: I'm Tim 
from Poughkeepsie, New York.

I'm program director.

I established [indiscernible] and 
between two of my folks,

we're 32 different locations [indiscernible]
because most of us consumers do not have

transportation, and we meet them 
in the community, we meet at the library, 
et cetera, et cetera, et cetera.

PAULA MCELWEE: You know, 
one of the things, when you mentioned

the community -- you know, that 
transportation is not accessible,

does that blow anybody else's mind that 
transportation is still not accessible?

I mean, if you stop to think about it, 
can you believe that transportation 
is still not accessible?

It was on the very first list of things 
that we had to change in our community 
before anything else could change.

We had to make sure that we had accessible 
transportation, and yet it is still a huge 
barrier in many communities.

AUDIENCE MEMBER: Let me make it clear.

Our transportation system is accessible 
physically, but I'm telling you it's

not because they are looking from 
a financial point of view because now

we have transportation go all over 
with the county, now it’s got

two routes because of the volume.

And we're cutting back.

PAULA MCELWEE: Yeah.

But there's still not enough transportation.

Now, I don't know if the baby boomers 
will help bring this back up as an issue.

You know, the graying of America and all –

AUDIENCE MEMBER: We 
need more [indiscernible] parties.

PAULA MCELWEE: We'll see.
We'll see.

But it does blow my mind 
when I stop and think about it.

Wait a minute, how many 
years has it been now?

And it's still on the top of the list.

Transportation.

Housing in California, anyway, 
I don't know how it is everywhere else,

but it's so expensive and it's so 
hard to get into anything that isn't

expensive, and to find that it's also 
accessible, it's still on the list.

It was on the list then, 
it's on the list now.

Employment, still the largest group 
of unemployed people in the country

are the folks with disabilities, 
and the figures have just not gone 
up nearly like we dreamed they would.

Okay.

Where do I see a hand?
Here we go.

AUDIENCE MEMBER: I have a 
question on peer.

When we had our site visit from RSA, 
we were seriously confused because we

were told that two people working 
in the office that could be peers,

because they both have disabilities, 
regardless of the disability,

have a conversation, that could be logged 
in our database as a peer conversation.

And we just can not reconcile that.

Our site visitor said, oh, 
yes, that's peer.

Would you please just clarify 
that for once and for all?

PAULA MCELWEE: For once and 
for all, huh?

You're not asking much.

It is absolutely true that a staff 
person can provide peer support,

and it is absolutely true that any two 
people with disabilities who are sharing

information about which they can share, 
even if their disabilities are not the

same, you know, could certainly 
be peer support.

Two staff people talking to each other, 
I guess -- my understanding was that

peer support was provided as part of your 
consumer service record, as part of the

core services provided; therefore, 
if one or both of them were consumers, 
yes.

If neither of them are, I don't get it.

Is that a good answer?(Laughing).

AUDIENCE MEMBER: Neither did 
we, because we do track our peer

and we've got good peer numbers, 
but we were flabbergasted.

So we thought, well, we're just 
not going to listen to them.

PAULA MCELWEE: Yeah.

I think I'd let that one go.

AUDIENCE MEMBER: Some things 
we do, we do quarterly 
holiday events, getting people in.

We do chatty cafe, which is a weekly 
event of peer support, having,

you know, snacks and coffee, 
all out of resource funds.

PAULA MCELWEE: Of course.

Resource development funds.

AUDIENCE MEMBER: And another 
thing we do is,

we have a really thriving 
employment program,

so we get volunteers in to see how 
they do in an employment setting.

They can put that on their resume, 
and we get a better idea of how they 
would do an employment setting.

And we also have peer bus 
trainers to do bus trainings.

They're very involved.

PAULA MCELWEE: And that helps 
the transportation issue of people 
coming to the center.

How many of you feel like your center 
is a viable or vital place where 
people choose to gather?

I think maybe about half.

Maybe about half.
Maybe not quite half.

I think that that's an interesting 
thing that we're seeing come back

around right now, and I think that that's 
going to be an interesting one to watch.

But as you determine your quality 
measures, you may want to ask yourself,

is that essential to 
fulfilling our mission?

Yeah.

AUDIENCE MEMBER: This is Audrey 
from Three Rivers in Kansas.

We cover a very broad rural area, 
so all of these wonderful suggestions

are things that we can't make 
happen in our rural areas.

So those are the CILs and that 
population that we've really got 
to start getting creative.

It's very, very difficult.

I mean, I have one staff person 
to cover three counties.

We don't have satellite offices 
because there's no money.

On our reservation, the independent 
living program there was the only place

where we've got the community 
going in a drop-in center.

Everywhere else, it's individual.

And even if we try to host something, 
there's no rural transportation to 
bring them to an event.

PAULA MCELWEE: Okay.
Yes.

Right back here.

Yeah.

AUDIENCE MEMBER: Bob Maffit 
from Montana Independent Living 
Project in Helena.

Just as an observation, I hear the 
comment a lot throughout today,

ranging anywhere from when you look 
at a measure like the peer advocacy,

you know, needs to be tethered to a 
consumer service record, apparently,

one of the value – values that 
RSA has in terms

of site review has, is that whatever done 
is tethered to eligibility.

I hear conversation about the old 
coffee and soup, as to how legitimate

it is in terms of -- well, it isn't 
tied to eligibility, but my point being,

I think as a quality measure, would 
you comment on how, or maybe others

in the room, might have best practices, 
that we start -- obviously, there's

no question about consumer 
service records eligibility,

but as you see, there's a lot that 
we're doing in terms of advocacy,

self-advocacy ranging from organizing 
community groups, being members

on public groups such as 
transportation advisory councils,

going to city commissions or being 
a resource at an ADA committee for

a topic or bringing that to an agenda.

I guess best practices, it might pop 
itself into issues or eyebrows being

raised under a compliance 
piece which, through advocacy, 
we can certainly deal with.

But the other thing is, the question is, 
I think we need to -- or maybe it's an

observation -- I think we need to be 
pretty adamant about the systems change

piece in all these issues that are on this 
checklist, as to how we're engaging that,

and that might be an equal or greater 
measure of increased quality.

Could you comment on that?

PAULA MCELWEE: Yeah.

I will just briefly,

and then hit it a little more as 
we go through the rest of the sections.

We need to measure on an 
individual basis and we

usually have a data tool to do that 
because there is a consumer service

record and usually there is 
an electronic record that is

through one – there are a 
number of them, through one of 
the database companies that we have.

There is a representative here today that 
maybe will talk to you a little bit more

about that later, but -- so we think about 
individual but we certainly have that

systems advocacy as well as that 
individual advocacy responsibility,

right, as centers so we need to figure 
out how do we measure that and

it may or may not be in that 
database of information.

You may have to create your own way of 
recording that information, setting your

goal, measuring how you meet 
that goal, reporting on it.

It may not be something that 
someone else created for you.

It may be that some of the 
most important things you do,

you will have to create your own 
measures for -- a comment here?

AUDIENCE MEMBER: One of 
the things the coalition we are

setting up -- we have 
only had two meetings

but we had 29 community partners, 
over half a dozen really strong consumers.

It has been a fun group and we are in the 
process right now of identifying what are

the major issues and then we will 
break up into subcommittees.

Each subcommittee is going to  
develop a work plan and in

that work plan, one of the things

will be:  what does success look like 
and that way we can measure --

PAULA MCELWEE: We are all 
required to have a work plan.

That's part of our funding if you get 
either Part B or Part C funds,

you have to have a 3 year work plan 
and is part of your 704 report and tell

them what you did on the work plan 
and what you will do on the next work

plan and we often don't treat that as 
part of our whole process but it can be.

It can be a very lively, exciting tool for 
how we proceed and we need to think about, 
do we want to use it that way.

We can drive that content to be 
interesting, and you mentioned that

your group was fun, and I want to ask 
this question, when is the last time that 
anybody really had fun at your office?

And the answer is we do it all the time, 
I like that answer and I 
think that's exciting.

If your answer is, what do you mean have 
fun at our office then we may need to talk.

Do you have a comment?

That's what it's about.

AUDIENCE MEMBER: One of 
the other things we are doing is

taking chatty cafe which 
is fun and it is coffee

and building relationships 
out to the HUD housing.

We are going out there and meeting 
at their facility to attract more 
people who are unserved?

PAULA MCELWEE: See who 
wants to come and talk with you guys.

AUDIENCE MEMBER: No, we 
are going to them and 
working with them on their site.

We can build advocacy and 
build peer relationships.

It can help in rural areas?

PAULA MCELWEE: In rural areas – 
in most communities, 
there is a gathering spot.

You have to figure out where 
it is and you may have to be 
there at 6:00 in the morning.

AUDIENCE MEMBER: This is Peggy 
from HEART of Central Texas.

I would like to follow up with a 
comment that this gentleman made.

We are starting -- we have a parent 
support group and they are not CSRs

but we also have while we meet and we 
have day-care for the children and

these are little ones, and the children 
all are individuals with disabilities.

They are not our consumers but it is a 
service that is well received and these

parents are so hungry for hearing about 
what is happening and how they can 
assist to empower their children.

To us, this is our future.

And when we are counting -- well, 
it's hard because we aren't --

they are support groups, we 
feel that this is part of what we do.

This is value within our community, 
and when you count, it doesn't show

up in the CSRs, it will show up in our 
classes and our support but it will not --

PAULA MCELWEE: Probably show up 
as peer support groups.

AUDIENCE MEMBER: But it 
is an interesting dynamic

when -- I am not sure if this is a 
positive of -- to us, it is awesome,

we like this and we support our families 
but I don't know how that would transfer

when somebody is coming in 
and looking for numbers.

PAULA MCELWEE: We will talk 
about that a little more in a bit.

I have two more comments here 
in the back of the room.
Go ahead young lady.

AUDIENCE MEMBER: Yes, one 
thing that comes up in terms 
of struggles that we have been doing

in terms of groups and classes for 
the peer support model and finding

a balance because we are serving people 
with disabilities but we also want

to be inclusive and not segregate 
people with disabilities to come to

programs so finding that balance when 
developing programs with groups of

social opportunities, just because 
a disability, doesn't mean I am looking 
to only interact and be in a separate

group of people with disabilities, 
that we want -- we find people we

have things in common with and they may 
or may not have disabilities so that

is hard when you look at the 
peer relationships that this is

your peer because you both 
have a disability and this

is how we will support you but, 
then again, if we are having people

come into our facilities who
don't have disabilities and

aren't consumers we 
may have people who

may be trying to take advantage 
of another person and who is 
going to come into these groups

and the confidentiality and so many 
barriers -- but it is more of a question

- not – just a barrier that we face as we 
look at developing those peer relationships?

PAULA MCELWEE: It might be something 
worth considering and looking to, huh.

AUDIENCE MEMBER: Yeah, I know 
there are some centers that

are trying to do some different social 
and more community things.

PAULA MCELWEE: We are seeing 
a lot of community things and youth both.

Richard, you had a comment.

RICHARD PETTY: A question, 
for those -- for those peer support 
groups, why are there not CSRs?

Why are you not doing that?

PAULA MCELWEE: Let's come back to that, 
the four core services, the requirement

is you don't have to do a CSR for I&R 
and the other three core services,

the expectation is the CSR with them 
either waiving or creating a plan and

with a goal is still in place so the 
groups that you have that meet that

don't have CSRs, we ought to talk about 
whether they are really falling under this 
or not.