OAK HILL & UCONN UCEDD Partnership

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Episode Transcript

(00:02):
Welcome the Pulse of the Region,brought to you by the Metro Hertford Alliance.
The Metro Hertford Alliance collaborates with investorsand partners to elevate the Hartford region
through economic development work, convening thecommunity around shared challenges, and providing local
chamber support. Learn more about theirmission and how to get involved at Metrohartford
dot com. Pulse of the Regionis produced in partnership with OKILL. Originally

(00:25):
founded as a school for the blindin eighteen ninety three, Okkill has provided
holistic, person centered services for individualswith disabilities for over one hundred and thirty
years. With empowerment and independence asits guiding principles. Okkill works in partnership
with the individuals it serves to provideresidential education and enrichment opportunities. Learn more
at okkillct dot org. Now here'syour host for Pulse of the Region,

(00:49):
KATEE. Balman. Hello and welcometo Pulse of the Region. I'm your
host, Kate Bauman here today inthe iHeartMedia Studios, which I always love
to say, the Candy Cane Buildingin downtown Hartford, our capital city,
and very excited to be here inperson with our guests today. Today we
are getting the pulse about one ofthe many ways our community organizations are partnering

(01:12):
to support people with developmental and intellectualdisabilities. So a very important topic here
today to discuss. And I'm sopleased that I'm joined by two incredible organizations
who are doing so much here inour community. So, without further Ado
would love to introduce our guests onthe show today. First from OKILL and

(01:32):
their Center for Relationship and Sexuality Education. She is the senior director for the
Oak Hill Centers, Nicole Feeni.So, Nicole, welcome to the show.
Hi, how are you? Thanksfor having me. I'm very good,
of course. I feel like todayit is the day of acronyms and
the amount of words that go intoeveryone's titles. It is I need to
sit here and take a pause onthis. So you guys are really testing

(01:53):
me today, Okay, good fantastic. And next from the you On Center
for Excellence in Developmental Disabilities, Education, Research and Service. It is their
public health faculty, doctor Tarah Letts. So, Tara, doctor Leuts,
welcome to the show. Thank youfor having me, of course, and

(02:15):
I have to say I made itthrough the name of the program, so
I feel like we're already winning onthis program. Fantastic. Well, first
things first, what we always loveto do here is give some brief introductions
about who each of you are,who your organizations and Nicole it's so wonderful.
OKILL is such an incredible partner forus here with Pulse of the Region,

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So certainly many people know about OKILL, but today we're really going to
focus on the Center for Relationship andSexuality Education. So if you could talk
about that sector within OKILL, that'dbe fantastic. Yeah. Sure, Okhill
has a lot of incredible unique programmingand the Center for Relationship and Sexuality Education
is just one of the many coolprograms we have there. But the focus

(02:59):
of this the focus and mission ofthis program specifically is really too. It's
preventative education for individuals with intellectual anddevelopmental disabilities and helping them navigate the world
and the information around healthy relationships andhow to build those with the people around
them, but also and most importantly, about their sexual health and what that

(03:22):
means within their community, in theiryou know, their family circles, how
they deal with friends and people allaround them. Okay, fantastic and can
you talk a little bit about yourrole within the organization? Sure so,
And actually before that, I thinkit's important to know as we kind of
have this conversation, is that Iwas a former specialized teacher, so this

(03:44):
content really does, it really doesresonate with me in my former days as
a teacher and saw firsthand how importantthis kind of content is for students with
disabilities. And currently at OKILL,I am the senior director of Okhill Centers.
Okay, the Center for Relationship andSexuality Education is one of those programs.

(04:05):
But my role at Oakhill Centers isreally overseeing some of the programming that
we provide for people of all ageswith all different kinds of abilities and disabilities
around assiste of technology, durable medicalequipment reuse, We have summer residential camps,
we have blindness support services, andmuch more so CRC kind of folds

(04:29):
right into the mix for the peoplethat we serve through those programs. Great,
fantastic And you know a great partnerof Oakhills is is Yukon and the
Yukon you said program, I'm soglad that you gave me the acronym Tarre's
why I can use that, ButTerry, can you tell us about the
program? I would love to.So the Yukon you said is one of

(04:50):
sixty seven you SAIDs across the country. We are authorized by the Developmental Disabilities
Act and are funded to be interdisciplinarydcation, research and public service units of
universities to assure that individuals with developmentaldisabilities and their families have access to and

(05:10):
can participate in all aspects of communitylife across the lifespan. So our center
is academically affiliated with Yukon, butwe serve the entire state of Connecticut,
Okay, And we do that throughfour core functions. That's interdisciplinary pre service
preparation, different types of community serviceand technical assistance, research and evaluation,

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and information dissemination. And our corefunding is used to leverage additional resources and
establish collaborations and partnerships to meet thegoals and objectives of a five year strategic
plan that's developed collaboratively with our ConsumerAdvisory Council, which is made up of

(05:58):
individuals with develop mental disabilities, familymembers, and other state entities and organizations.
And one of the four areas thatour center emphasizes is the area of
health, which is most connected towhat we're going to talk about today,

(06:20):
But I would really like to shareour center's new mission for the next five
years. Okay, that'd be fantastic. And it's written in plain language so
that way it is understandable by multipleand diverse audiences. So our center will

(06:42):
train others, study what happens,provide services, and share important information to
help persons with disabilities and their familiesget the services and support that help them
have a good life in the community. Extremely well written, well put,
and you know, thank you somuch for sharing that. I think it
is so important important. You know, a lot of what we'll talk about

(07:03):
today is do you approach. Alot of the subjects will highlight today are
things that people are very well awareof, but not necessarily the approach for
you know, working with individuals whoyou know with intellectual disability. So I
appreciate that, and Tar, ifyou could talk a little bit about your
role within the organization, I thinkthat'd be great to kind of share with
listeners. I would love to so, first and foremost, I come to

(07:28):
this space as a family member.I have personal experience with individuals with developmental
disabilities and other healthcare needs, butI did my academic training at Yukon,
Okay and masters and PhD and publichealth, and I'm also a master certified
Health Education specialist. Another mouthful.Well, thank goodness you didn't make me

(07:53):
introduce that, because I have tobe honest. I'm given it then.
But with this background, I workon a lot of our project within a
lot of our projects within the healtharea of our center. Okay, very
nice. And you know, aswe kind of again dive deeper into this
conversation, Nico, I think it'sso important to talk just I'd love to

(08:16):
highlight a little bit just on howmany people and families really are impacted,
you know, especially here in ourcommunity. So I don't know if there's
anything you could share on just youknow, kind of some of the numbers
on how many people are impacted hereand or you know, have a family
member or a support system to someonewho maybe you know, have a developmental
or intellectual disability. Sure, soI did a little research before I came,

(08:39):
well, thank you, and backin September of twenty nineteen, and
I'm sure numbers haven't changed too much. I'm sure it's still around that range.
The Federal Administration on Community Living statedthat there's approximately forty three thousand individuals
living in Connecticut with developmental disabilities.Well, of course that's going to include
individuals with intellectual disabilities thereah will palsy, autism, blindness, and many others.

(09:05):
I think that just really that numberemphasizes really why it is so important
for us to have these conversations.And you know, for today is you
know, we are going to bereally focusing on healthy relationships and sexuality in
people with disabilities, and you know, again certainly a very big and important
topic. So if you don't mindat a high level, can kind of

(09:26):
just give us an overview about reallywhy this program was started at OKILL And
it sounds like your personal background,plus I'm sure you know a lot of
other factors led to the starting ofthat program. Sure, so OKILL is
obviously we do a lot of differentthings in the field of disability services,
and we see people and work withpeople of all ages and so this these

(09:48):
kinds of topics come up often andthey are directly impacting the people we serve.
So often it's employees who work atthe agency who uncover a need and
then the agency really is blessed tobe able to kind of back those initiatives
and start programs and start initiatives andproviding supports to people in very unique ways.

(10:11):
So this specific program, the Centerfor Relationship and Sexuality Education, was
really designed for profit. Preventative educationis putting out materials that people with disabilities
can relate to that's meaningful, isunderstandable, and is created at a you
know, at a level with whichcognitively they're able to engage and understand.

(10:33):
It was really a woman named LucilleDuguay who was an OKILL employee and a
social worker and was working with theindividuals that we serve and noticed that,
you know, there was a gap, there was a real gap for people
who were living with developmental disabilities andnot necessarily having the interactions that we would
all want in our lives safely orappropriately. And so started to design curriculum

(10:58):
and content to educate individuals with intellectualand developments and disabilities around building healthy relationships,
understanding your body, how the worldworks around you, and how you
interact in the community. And sothat's really where it came. You know,
it came about a couple of severalyears ago, and we've been continuing
on with the work that she hasstarted us with. That's great, And

(11:24):
what has been the impact? AndI guess actually when did the program start
if you don't mind me asking that, about about fifteen years ago? Okay,
great, so so newer in Okhill'shistory, certainly you know, was
it two hundred years for Okill?Yep? One hundred and twenty six?
Twenty six? Sorry I was okay. I always feel like to you quite
a few so fifteen is a shorterprogram there, And what have you seen?

(11:48):
I guess you know, again highlevel. We could talk I'm sure
for many hours about this, butthe overall impacts you know that you've seen
of the program are seeing today.The overall impact of the program is really
truly that it's giving people the abilityto have important information that they can resonate
with and then put into practice intheir everyday life. As a former special

(12:11):
ed teacher, I can speak toteaching in public and private schools that you
know, the focus on health curriculumwasn't really accessible to the kids that we
were serving. They're of course,there's health curriculums in public schools, but
they're not necessarily designed in a waythat would be meaningful for kids who have

(12:33):
intellectual disabilities and struggle to connect withthe information. And so once you give
and empower people with the information thatyou know about their sexual health, they're
able to have stronger and better relationshipsin the community and with their friends,
and then it obviously impacts everyone aroundthem. Fantastic And I'm so glad you

(12:56):
brought up And actually, in prepfor the show, my mom is was
a special ed teacher as well,and she was saying and how she was
thrilled that we were hosting this showtoday. So just a lot of the
pull up points that you hit onthere today. Certainly it seems like many
people who have you know, workedwith with children and adults, you know,
kind of throughout throughout their careers.It's definitely something so important that we're

(13:16):
addressing. It's so important, andI think people don't know that there is
curriculum or content that is out therethat's designed to meet the needs of people
with intellectual disabilities. So I thinkthat's the awareness, you know factor for
the Center for Relationship and Sexual Educationis making sure people know there are materials,
there are actually are materials. Iused to spend hours taking a health

(13:39):
curriculum that wasn't designed for students withspecial needs and recreating it myself, okay,
And I certainly had no business doingthat, you know, I didn't
have a medical background or a healthbackground or social work. But I was
doing the best that I could tomake sure that my students had access to
that information. So I really wishI would have known back then that Oakil

(14:01):
had these materials well, and hopefullytoday then many more people will, which
is great. And Tara would loveto talk a little bit more, you
know, kind of as on thehealth side, and if you could tell
us a little bit more about sexualitysexual health of those with developmental disabilities,
and you know, I think it'sgreat if we could dive a little bit
deeper there. I would love tofirst though, I'd like to actually comment

(14:24):
on some of Nicole's last statements.Definitely in the academic space, so I
teach in graduate public health courses indisability, and I actually utilize some of
oak Hill's materials because they are designedin the ways that they are, the

(14:48):
content, the formatting, it's accessible, and it's inclusive. So there are
aspects of universal design for learning thatnot only meet the needs and backgrounds of
students with disabilities, but many otherstudents from different backgrounds as well. So

(15:15):
there's very little in that curriculum thatis quote unquote disability specific. It's designed
in a way that many different peoplecan access it and actually digest what's presented.
And that's one of the exercises Iactually have my students do to go

(15:37):
through an aspect of the curriculum andthen answer some questions about it, because
they come to that exact realization thatif we were able to say, take
public school curriculum and just make ita little bit more accessible, we would
be serving so many more individuals holistically. Very intriguing point, and to another

(16:02):
one of Nicole's points. In aneeds assessment that I conducted before covid SO
a few years ago, I askedhealth teachers what their preparation was in adapting
curriculum, and while most reported thatthey had received academic training to adapt curriculum,

(16:22):
in general, very few had anyacademic training in adapting health curriculum.
I'm looking over Nicole's not like eyeswide, what not. It's yeah,
definitely seems like you know, anissue to be addressed. It seems that
reading and writing are always the prioritybut the access to other kinds of information

(16:45):
aren't okay for this population. Butto speak a little bit more globally about
health of individuals with disabilities and developmentaldisabilities, this diverse community experiences health disparities,
and we see that across all differentfacets of health and health care,

(17:11):
and for individuals with developmental disabilities,we see that play out in slightly different
ways, but also compounded by otheridentities that they might inhabit. So we
know from the literature that individuals withdevelopmental disabilities are less likely to be up

(17:33):
to date with health screenings. Okay, they're less likely to be asked by
their providers if they are sexually activeor any questions kind of related to that.
But even bigger than a healthcare provider, there are just a lot of
myths out there that really need tobe busted. So I spend a lot

(17:53):
of time with my students doing that. So oftentimes individuals with disabilities are thought
to be asexual or no, theyshouldn't know about sex and sexuality for their
own good, like let's protect them, and we're missing the point when we

(18:14):
take that approach. It comes froma good place, but we're not respecting
someone's full sexual identity. We tendto hyper focus on body parts and reproduction
and interpersonal aspects of sexuality, butsexuality is so much more than that.

(18:34):
But often we hear about very specificaspects that are not honoring individuals as human
beings and as sexual beings. Sothat's where I spend a lot of my
time. And what we also knowis that, particularly for students with disabilities,

(18:57):
if they do receive sex education,it's it's in a reaction to a
quote unquote bad behavior. Okay,so it's it's not done respecting someone's sexual
identity and sexual being. It's donelike no, no, don't do that,
that's bad, rather than it's givingfull context and allowing people to be

(19:19):
people. So part of the whatI loved so much about the Oak Hill's
curriculum is that it gets into thatit addresses sexuality from a positive standpoint and
comprehensively a lot more so than others. That's great, No, that's I
think so important. And you knowcertainly would love to talk a little bit

(19:42):
more too on the partnership between yourorganizations. You know, it sounds like,
you know, you're really able touse a lot of Oakhill's curriculum.
But I don't know if you want, I'll maybe have kind of both the
answers, but you know, maybeNicole first if you want to dive in
on just a little bit about thepartnership between you know, between Oakhill and
Dukon and and really too, arethere other partners that are really getting involved
as well. Yeah, it's hugefor us as the program that's coming up

(20:07):
with the content and working with communitypartners to make sure that every time we
develop curriculum or content that we're includingpeople with disabilities, and we're including partners
in healthcare, and everyone's coming togetherto make sure that the information is accessible
and inclusive. It isn't just oneperson. It wasn't just Lucille sitting behind

(20:27):
a desk writing this curriculum. Becauseshe determined this is how it should be
said. She was including so manymore people with different backgrounds to come in
and say this is what we needinformation too, and this is how we
should say it. So that's areally important piece for us, is every
time we're creating content or curriculum,that's what we're doing is bringing in community

(20:48):
partners. And Tera has been wonderfulwith educating from a different lens right,
making sure that as people are enteringcareers and professions in different areas, that
they have this information and can helpus spread that word and that outreach.
The more people talk about it,the more that the community understands that this

(21:11):
is very much part of people's lives. Their sexual health and their relationships with
other people is very much part oftheir every day and so we're always working
with community partners to make sure thatthey can have access to our curriculum to
help do that about those gaps.That's great, and anything Terry you want
to add in there kind of interms of community partnerships. So a couple

(21:37):
of things. One I'd like tohighlight one of our one of the you
said's training programs and how I've integratedsome of oak Hill's work and how our
center director, doctor Mariabeth Bruder hasalso done so. So the program is
another long name, and of courseit is here, the Leadership Education in

(22:00):
neuro Developmental and Related Disabilities Program forthe LEND program. Okay, there are
sixty of these across the country.They are one that serves Connecticut and it's
an academic, year long, interdisciplinarytraining program for graduate students from different backgrounds,

(22:21):
parents and family members, community members, and most importantly advocates themselves.
And there's a specific curriculum instead ofcompetencies in leadership that all of our trainees
complete, but they spend a yearlearning together and part of that learning,

(22:44):
I get to talk about sexual helpand sex ed during part of it,
okay, But also Oakill is oneof our collaborators on this project, so
they also come into the LEND programand talk to our trainees about what services
they can provide and how they canbe resources for our students who are going

(23:06):
to graduate as social workers, schoolpsychologists, special education teachers to not just
know that resources exist, but actuallystart to make those connections now while they're
in school. That's great, No, definitely a lot of great information there.
And you know, I think,you know, we've touched on a
lot of the resources available specifically forindividuals but also to families. You know,

(23:30):
I think, and you know,and also I know too kind of
support teams where a lot of individualshave some great supporters around them and you
know, would love to kind ofuse We have probably about five minutes left
in the show, but kind oftalk about these resources and also to you
know, kind of starting to thinkahead to is how can our business community
be a resource too, because Ithink, you know, certainly, as
you'd mentioned forty three thousand individuals herein Connecticut, a lot of employees in

(23:53):
the state may have a family memberor someone they're a supporter of who you
know, maybe you know, havean intellectual disability. So kind of a
bunch of stuff I just said there. But you know, so circling back
though on the resources for family supporters, you know, Nicole, if you
could touch on anything that we haven'treally highlighted today, on really different resources
that people may not be aware of, if you could try to highlight some

(24:15):
of these, yeah, sure.So first of all, we're always a
resource to people. So even ifit's something that hasn't been mentioned here,
but it's something similar, you know, something has inspired a listener to reach
out in this topic in general,they certainly can just reach out to us
and will help guide them. Imean, part of what we do is

(24:36):
resource, so it's connecting them withpeople in the community. And if we
don't have the answer, what weprovide as resource is we have a curriculum
for educators. So it's a prettythick curriculum designed for educators to work with
students and you know, at manyages and help them relate to the information

(24:59):
that would be you know, women'shealth, men's health, sexual health,
building, healthy relationships, and everythingthat would come in between. So it
kind of goes back to what Tarawas referring to before in terms of our
inclusivity and accessible content. It wasreally designed for educators, but we have
had families or social groups take thatcontent and then develop social groups around the

(25:23):
content. If you have we havepeople with adults with disabilities who haven't had
access to that information in the pastand would like it. We have self
guided workbooks that they can access andit goes through various topics and smaller chunks
and is a really good resource forthe community. And it's not just for

(25:45):
people like Tera had alluded to.It could be for wide groups of people.
We've had mental health social groups reachout about that kind of content and
give them access, So it couldbe you know, people beyond just individuals
with intellectual or developments displays. Itcertainly could be families, caregivers, direct
care staff. We could be aresource for a lot of people. Okay,

(26:07):
that's great and Tara, you know, anything else on the resource side
from you know, from your program, anything else to add in there,
so similar ton of coal. Ourcenter is always willing and excited to connect
individuals, groups, et cetera,with resources, et cetera in the community.

(26:29):
There are a few resources that haveactually come out at the national level
that I'd like to highlight. Please, that'd be great. The National Network
of U SAIDs and lens other acronym. I'm glad. I'm taking notes here.
A UCD came out with a ninepart webinar series actually, and it's

(26:55):
titled sex Talk for Self Advocates,So it is by and with individuals with
disabilities and some leaders in the fieldin this area. And each of the
different nine parts are about an hourlong and they're all on YouTube and different

(27:17):
topics. So I actually pair oneof those with one of oak Hill's workbooks
in my class. Nice also liketo highlight free to access. It's called
the helln magazine out of the AmericanAssociation of Developmental Medicine and Dentistry. They

(27:38):
started what they're calling the Sex andIddy blog. So little play on sex
in the city. Yeah, Ilike it. Again, written by advocates
themselves. So there are resources thatare out there, sometimes it's just a
little bit difficult knowing where to startto find them. Yes, okay,

(28:00):
great, well, and with thatis you know, would love to for
each of you to share kind ofwhere people could learn more about your programs,
your organizations. Where because going backto where to start or where to
continue, so you know, tearoff, you could share where people could
get more information about Yukon's you said. So our website is Yukon, you

(28:21):
said, dot org. That's thebest place to start to get to know
us what we do with the differentareas and projects that we're working on.
In addition, I would encourage anyonelistening to get informed and get educated.
And what I mean by that isfind out what your local board of education

(28:44):
has in terms of curriculum. You'reallowed to ask what that looks like because
at the state level we are notmandated to teach sex ed as sex ed
Okay, So the more the morepeople know and can be informed in that
way, we can advocate collectively forchange and accessible education that will ultimately improve

(29:08):
health and well being for all ofour communities. Definitely, that's great.
And Nicole, where can people goto learn more about OKILL and all the
work that you're doing over there.Yeah, so they can start with okillct
dot org. Simple place to start. It's a large website with a lot
of information, but they certainly couldalso start with Relationship and Sexuality at dot

(29:33):
okelct dot org. Okay, orjust come direct to the website and they'll
they can navigate towards the sub page. But I'd like to end with a
quote from Lucille Dugue, who startedthis program. Please. When she created
this content, she stated that peoplewith developmental disabilities have the right to information
about their body and save sexual expressionaccording to their individual capacity to learn.

(30:00):
Though that was stated years ago,it's still very much true to what Tara
and I are here to speak tospeak about today. That's great. Well,
thank you both so much. Iknow I personally learned a lot,
and I'm sure many of our listenersdid as well, So thank you.
Really appreciate the work that you're doingand the awareness that you were able to
bring here today. Thank you ofcourse, of course, for all the

(30:22):
details about today's show, you canvisit Pulsothregion dot com. As always,
we would like to say thank youto our partner Okill who helps us in
our production of today's show. I'mKate Bawman. Go out and make today
a good day here in Connecticut.