Breaking Down Barriers

ARISE/Exceptional Family Resources CEO, Bruce Drake and COO, Dan Kelley talk the agency services for people with disabilities and Dan's role as both an employee and parent of two adult children with developmental disabilities. 

Episode Transcript

Speaker 1 (00:08):
This is the Arise Exceptional Family Resources
podcast, with your host, ceo,bruce Drake.

Speaker 2 (00:16):
Hi everyone.
I'm Bruce Drake, the CEO atArise and EFR, and I am also
your host for the Arise EFRpodcast.
I am thrilled today to bejoined by our Chief Operating
Officer, dan Kelly.
How are you, dan?

Speaker 3 (00:28):
I'm good.
How are you?

Speaker 2 (00:29):
Good thanks, dan.
Why don't we start off with youtelling the audience a little
bit about yourself?

Speaker 3 (00:35):
So well.
I'm older than I'd like to beI'll be 60 in September but I've
lived my whole life here inSyracuse, new York.
I have four kids 37, 35, 20,and 17.
And I have two grandchildren,five and three.
So I guess my life is full andit's full of people.

(00:56):
My two youngest though, my 20year old Caitlin she has Down
syndrome and my 17 year oldEvelina has Down syndrome and
autism.
And my 17-year-old Evelina hasDown syndrome and autism, and an
assortment of challenges whichmay cue up why I'm in the field
I'm in.

Speaker 2 (01:14):
So why don't we start off with you telling us a
little bit about what you do atHorizon EFR?

Speaker 3 (01:19):
Well, I'm the chief operating officer, and so I
oversee some programs, I overseethe training, I oversee our
human resources department, andI'm really pretty fortunate too
because I have the opportunityto mix with some other more

(01:40):
advocacy-based groups outside ofthe agency, but as a
representative of the agency,and so I'm on the most
integrated setting committee forNew York State.
I'm on a few differentcommittees through one of our
trade groups, and so I get tobring a little bit of dad and
maybe a little bit ofoperational knowledge from

(02:01):
inside the agency to thosevenues.

Speaker 2 (02:04):
So, if you don't mind , I'd like to talk about your
dual role, right where you'rethe chief operating officer for
an organization that servesthousands of people with
disabilities $45 million a yearbut also your role as a dad of
you know, I know you have fourkids, but for this conversation,
two kids who receive servicesthat's got to put you in an

(02:25):
interesting position.
Do you want to talk about thata little bit?

Speaker 3 (02:28):
It's actually my favorite topic and it does put
me in a very interestingposition.
It's an interesting position Ilike and I think it's one that I
have to balance.
And so I've been working inhuman services since 1994, and I
worked most of my career inbehavioral health services, so

(02:52):
mental health services, and soin those experiences we had
training in person-centeredplanning and got to learn that
you know people are people,regardless of conditions they
may be diagnosed with, andreally learned just a quick
example is I worked with aperson, sally, who had a very
severe schizophrenia.

(03:13):
She actually jumped from atwo-story building at one point.
She spent a good part of herlife in state institutions but
at the same time.
So you could meet Sally andSally would say some really
really strange things sometimes,but if you sat and listened to
her long enough, she would tellyou about her grandchildren,
she'd tell you about how shemakes jewelry.

(03:35):
I get to see her jewelry thatshe makes and you could have
these.
In some ways I felt like I wastalking to my mother, right?
So, anyway, what kind oflearned was is that you know
people are people, like you know, and if you look for the person
inside them, you can.
You can find that and I.

(04:13):
I think that set me up reallywell to be a dad, but it also
set me up really well to work ina field with folks with
developmental disabilities.
So I made my way over to thisfield I guess it's about seven
years ago because I butinterestingly enough is
sometimes I want to challengepeople in the system that
actually sometimes forget aboutthe diagnosis, which is really

(04:36):
what?

Speaker 2 (04:37):
do you mean by that?
They forget about the diagnosis.

Speaker 3 (04:39):
Well, I think sometimes you get, especially in
some of the advocacy circles.
You have some folks in OPWDDand then you actually have some
service people too that they getreally caught up in.
The people are people andanti-stigma and really almost
militant about you know, pushingagainst people like.

(05:03):
Well, let me give you anexample, right?
So when I first started in thefield, I got talking to somebody
and this was somebody from theAlliance and where I was working
as the executive director, Iwas questioning some of the ways
we were supporting people inthe community to live on their
own, and I had said to her youknow, in this phrase I said you

(05:25):
know, it feels almostirresponsible, some of these
folks need 24-7.
Very annoyed, social-worky wayshe says well, I can't wait till

(05:51):
we get on committees and talkabout person-centered planning
with you.
And then she went on to tell meabout her 19-year-old that just
left for college and thedignity of risk and she can't be
there for her 19-year-old tomake decisions, which is none of
the things that I actuallymeant, you know, in that
conversation, but I didn'tremind her of this.

(06:11):
But I think I found myselfreminding folks too that
person-centeredness is aboutwhat's important for the person
as well as what's important tothe person.
So in some cases, like kids likemine, I have my 20-year-old.
She still watches Daniel Tigeron a lot of occasions and she

(06:32):
can't count to 30.
And despite tutoring and anumber of things doing, she's
not been able to read.
And that doesn't mean I need toput her someplace or she has to
be in an institution.
It's just when we do planningand plan for her care, we need
to keep that in mind.
It's kind of like somebodymoving around the world in a

(06:54):
wheelchair.
They're perfectly a human being.
I have lots of colleagues thathave that and that's just the
way they get around and I don'tnot see them as people, but I do
understand that.
You know it's a good idea tohave curbs that dip, you know,
and it's a good idea to havebuses that dip, and it's a good
idea to make enough room forsomebody to get through with a

(07:16):
chair.
And I think that's what, ifanything, I like to communicate
out of my experience with my ownkids is that we just, we just
can't forget that other partwhen we're doing the planning,
that that my kids may need someaccommodation to reach the level
of independence that that somefolks would expect them to have.

Speaker 2 (07:35):
So that's a great.
That's a great perspective.
Are you ever put in positionswhere you have to kind of choose
between your professional roleand your parental role, and how
do you deal?

Speaker 3 (07:44):
with those.
Well, I mean, that's a balance,you know.
A good example is that, as wehad a situation we were
discussing about a year and ahalf ago I was overseeing QA and
so this conversation came up,and so what we had found the
report was that the DSP had toldthis individual who was acting

(08:06):
out, so throwing things andpinching and doing a lot of
things, anyway.
So what the DSP disclosed isshe said well, you know, so what
I did is she then wanted the TVon while she was acting up, and
so I told her that you knowthat I won't turn on the TV
until you settle down, until youstop doing this, right.

(08:28):
So our QA person and one of thedirectors themselves said well,
you know, that's a human rightsviolation.
You're denying them you knowthis the opportunity to watch
the TV, and they can't do that,and this is a bad thing.
And myself and one other parentwho was in the room, who works
in our HR department, were like,oh wait, a minute, you know.

(08:52):
So for one, we had brought upthe fact that the parents may
have actually taught this DSP totake that approach, that we all
set boundaries with people.
You know, if my wife wereyelling at me at the kitchen and
throwing plates and all thatstuff at me, and like that I
might say I'm not really goingto take out the trash until

(09:13):
you're done throwing this stuff,but in this case there was sort
of the leap on there.
So the parent in me says weneed to have certain ways to
kind of encourage certainbehaviors or lack of behaviors,
behaviors in our kids, and wecan't have it as harshly judged
as that.
At the same time, though, theCEO in me right, and the person

(09:36):
who oversaw QA, says that westill have to investigate, that
we still have to look at that.
I can't just dismiss it basedon on my dadly views.
You know what I mean.
So I think there's always sortof that balancing thing in those
type of decisions.

Speaker 2 (09:55):
Dan, I think you and I have talked a number of times
and I've been in the field for40 years and I feel that I'm an
advocate.
But every time I talk to youand your perspective you bring
as a parent just humbles me alittle bit, in the different way
that you look at things, and Ithink you're a real asset to the
organization, not only becauseof your professional skills but
because of your perspective.
But I'd also like to talk alittle bit about things not

(10:18):
related to your family.
I know you have a real passionfor staff development and in
your role as COO you've reallydone some great things that
helped us improve thedevelopment of our existing
staff.
Do you want to talk about someof your favorite things that
we've done with staffdevelopment?

Speaker 3 (10:34):
You know, my favorite thing is the simplest thing we
did is that we researched somebooks and then we did a book
club so we gave folks copies ofthis book.
The name of the author is RitaSever and she wrote a book
called Supervision Matters andto me it fits the values of our

(10:55):
agency and it fits my valuesvery well in terms of how we
should approach supervision.
So you're giving people thebenefit of the doubt first have
we given them enough informationbefore we move into progressive
discipline?
Given them enough informationbefore we move into progressive
discipline?
You know how do you resolveconflicts, because as a
supervisor you deal withconflicts and anger, and I think

(11:15):
of the group we got together indoing that.
We had some really, really great, great talks, not always on the
same topic, but that we readabout.
But it really gave us all sortof an opportunity to talk about
leadership.
I don't think you can be aleader without trying to
practice your craft or try tobring additional information

(11:37):
from the outside in to do thatand to be able to talk to each
other, and I think that's whatwe skip.
You know sometimes that whenwe're doing it.
So I'm also pretty proud ofsome of the supervision
trainings that we've created.
I've worked with HeatherHodge-Teapolt, which is was our
trainer in there, and I I thinkwe really really have come up
with some some really reallygood stuff, and there's a few

(12:00):
methods in there, like helpmethod and like that, for
helping folks learn how to dealwith with anger right, because
that's what we all experience inthe field.

Speaker 2 (12:09):
And is that something that do you intend to continue
to focus on going forward as astaff development?

Speaker 3 (12:14):
Absolutely.
I'm actually waiting for someof the smoke to clear on our
merger.
I think everybody's been sobusy trying to transfer this
into that and this into that andall of those things that we've
kind of taken a little bit of ahiatus on putting out additional
supervision trainings.
But as soon as we do that, oras we start getting towards the

(12:38):
end of the year, we'll startcoming up with a plan and a
curriculum, and I think it'sparamount.
I think that if we want todeliver services the way we want
to deliver services and we wantpeople-oriented services and
responsive services and all that, I think we've got to really
teach our supervisors to be ableto interact with people in a

(12:59):
way that encourages our staff tobehave in those ways.
I agree that's great.

Speaker 2 (13:04):
We only have about a minute left.
I did want to just ask you realquickly about independent
living centers, because I knowit's something that's relatively
new for the both of us.
Independent living centers havea philosophy of being
consumer-controlled,community-based and
non-residentially focused.
Have you found that philosophysomething that you can easily
embrace, or has it been anadjustment for you through the
merger?

Speaker 3 (13:25):
I've actually been.
I found it easy to embrace sofar and I want to say, in the
shortness of time I hopeeveryone who listens to this
will take it's about an hour and30 minutes it's a documentary
called Crip Camp Netflix, andI'll tell you what.
I watched that and I'm in suchadmiration of the folks that

(13:50):
were in it and all the work theydid.
It kind of tells the tale ofhow folks with disabilities
advocated for what ultimatelybecame the ADA, which is super
huge.
Now I had the advantage on myMISS committee I was working
with, I mean, folks I'madvocating with are in

(14:10):
wheelchairs and have differentconditions and cerebral palsy
and like that.
So I've had that opportunity tomeet those folks as people and
to see their skills andabilities.
And when I walk away you knoweach time that we meet as a
group what I think is like.
Why would we want to put upbarriers to these folks that can

(14:32):
contribute so much to oursociety, our management, our
organizations and our advocacyand how we view the world?

Speaker 2 (14:41):
Dan, I could talk with you about this subject all
day long.
Unfortunately, we're just aboutout of time, so I wanted to
thank you for coming, make youpromise that you'll come back
again so we can have some moreconversation.
Sure, and thank all of ourlisteners and we appreciate you
tuning in.

Speaker 1 (14:56):
Thanks, this has been the Arise Exceptional Family
Resources podcast with CEO BruceDrake, recorded and produced at
the WCNY Public BroadcastingStudios.
For more information, visit ourwebsite at contactefrorg.
You can also follow us onFacebook.
Thank you for listening.