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>> My name is Paula Schmitt and I'm the co-state lead with Michael Stoehr for transition. I work at PaTTAN in the Pittsburgh office. And I'm joined today by Lynn Zale who works in the Office of
Vocational Rehabilitation. And we will be your facilitators today. If you have any questions, just raise your hand. Lynn has a microphone and we will be walking around asking questions. If you have
just a general question for our panel, that's fine. If you have a specific question for one of the panel members just feel free to ask them. Okay? These are our goals for the session. We're hoping
that you, who I'm assuming a lot of you are family members or in the education field and/or the vocational rehabilitation field, we're hoping that you learn some from these wonderful people up here
on their experiences, about their journey. And we're hoping that you hear some really effective practices on how they were able to be successful in transitioning into that next phase of their lives.
And we'll also hope that you'll be able to identify and gather some resources, again, from their journeys that may help you in your practices.
>> So, Paula, could we ask the audience who's present by categories because it would help our panel know who they're talking to.
>> So who here is a family member? Who here is a parent or with a youth or student? Okay. Who here is a student? Yay!
>> Love to have our students.
>> Okay. What about people from education or special education? Okay.
>> OVR? Good.
>> Agencies? Anybody else? So I think we hit everyone.
>> I think so.
>> Okay. Thank you.
>> Wonderful. So these are our panel members today. Let me just start off to my right and introduce everyone. And you're gonna hear from them. So I'm just going to briefly just introduce their names
and who they are. This is Maria Walls. She has been there done that several times. She's been part of our panel the last few years. So we're thrilled to have her with us. We have Susan Anderson, who
is from Penn State University. She's a disability specialist. Over here we have Luke Ulanowicz. And you can see he's a 2013 graduate of Avonworth High School. He also was part of our panelists a
couple years ago I think. So we're thrilled to have him back with his mother, Kathy. New to our sessions are the end of the row here. We have Erin Seller who is a student at Cabrini University. She
is joined with Elizabeth Beil who is her adult partner. We also have William Del Toro Vargas who is at Temple University in the pre-law program and he is joined with Tanya Regli from The Arc of
Philadelphia. So that was just a very brief introduction of them. We're gonna let them talk about their stories. And we're gonna start with Maria. Since she's been there done that numerous times?
>> Hello? All right. This is a weird microphone. So hi, everybody. It's nice to see you all again. Those who are new, those who are returning. If you're returning, I apologize. You'll have to hear all
about me all over again for the third time. So I'll try and mix some new things in there for you. But this is a brief resume of generally what I do. It's not the full story. So I'd like to start at
the beginning of, I guess, why I'm here today. So I have two disabilities. The first is called postural orthostatic tachycardia syndrome. I know it's a long name, so the acronym is POTS and I'll
refer to it as POTS. The second is gastroparesis, which is a ... Well, POTS is an autonomic nervous disorder, which I should've mentioned. And gastroparesis is a stomach, gastrointestinal disorder.
And a third disability that I have is psychiatric disability, I actually suffer from depression as well, which I do want to talk about just because I think I haven't in the past. And I think that
it's important to bring awareness to mental illness as we talked about transition from childhood to post-secondary education. But I was about 10 years old when I first started to develop symptoms of
POTS. I went from being a lively, energetic child, played sports, was always outside to all of a sudden, I was sick every day. I was throwing up just about every day. I was passing out all the time,
dizzy, headaches, brain fog, you name it, I probably experienced it at some point throughout the day. So for a long time I was having these symptoms. It was a couple of years until I finally said
something to my mom because to me this was just normal. It was just something that I was experiencing. And at first I thought it was an emotional reaction to what was going on in my family at the
time. My parents were getting divorced. And I thought what I was experiencing was just nerves. And my parents did as well. They never thought to find me professional treatment. They never thought to
take me to a doctor. This was just what happens when parents get divorced. Kids have some kind of freak-out or get sick or what have you. So it took a long time for me to finally admit that there was
a problem. So, finally, when I was about 14, I asked my mom to take me to the doctor's. So we needed to figure out what this issue was because I was barely being able to go to school at the time. I
couldn't have any type of extracurricular activities. I wasn't hanging out with friends. I wasn't doing anything. So it took about 2 years for me to get diagnosed. When you go to the doctor and say,
"My stomach hurts," it could be a million different things. And it could even be nothing. So it took a long time to find somebody who would take that seriously and realize that, you know, while,
okay, teenagers go through changes, these weren't just normal things that somebody was experiencing. I was very, very sick. So when I was 16 years old, that was when I was finally diagnosed. And
while I'm talking it up to be as if this was a great discovery and it was life-changing, I was so happy to be diagnosed, I think that the diagnosis of a disability was probably the hardest thing that
I've ever had to experience just because when you go from being a person without a disability to all of a sudden gaining this label, it changes your entire self-image. And, you know, people in the
audience who have acquired disabilities, you know exactly what I'm talking about. You have to look at yourself a different way, in a way that you might not want to see yourself. And it breaks your
heart. And one of my core characteristics of my personality is that I like to be independent. I like to self-sufficient, have my freedom, have nobody telling me what I can and can't do. So to all of
a sudden be told that I wasn't going to be able to go to school full-time or I wasn't going to be able to play sports anymore or hang out with my friends when I wanted to, it really, really upset me.
And that is probably when my depression took full force just because I withdrew from everything because I had to and because it was much easier than trying to accept this new life that I was in. So
that was probably the first time that I had experienced full-on depression. And unfortunately it has lasted ever since just because I don't think that the acceptance phase of accepting that you have
a disability ends. I think it's something that you live with for the rest of your life and you go through ups and downs to where you feel good about yourself for a few months and you feel bad about
yourself. And I think that's okay. I think others would agree with me that, you know, there's no timeline of when you have to accept who you are. But I think the upside was when I came to Penn State.
So I am now a rising senior at Penn State. So I'm about to graduate, hopefully, in the spring. But my first semester of my freshman year I was having a really, really hard time just because I came to
this new school. Nobody knew anything about me. Nobody understood my disability. Most people didn't even know what it was. No one knows what POTS is for the most part. So I was having difficulties
feeling understood, feeling accepted, feeling like I was just like everybody else when I couldn't go to football games and stand for 4 hours or I couldn't go eat with my friends and have dinner
because I was feeling nauseous. And it was all of these different things that I didn't feel like I was part of the Penn State community, which is a shame because Penn State boasts its sense of
community. And I was thinking, "Where did I miss that? Where did I fall off in being accepted here." So I guess the beginning of my second story would start when I went into the Office of Disability
Services here at Penn State. And I got my letters. Was it with you, Susan? Maybe. I think you were out that day. I should mention that Susan has been instrumental in helping start this organization
that I'm about to talk about. So I just want to give her credit where credit is due. So I went to the office for disability services and said, "I'm feeling like I'm having a really hard time. And I
need some kind of help. I need some kind of community. What can you offer me that will help this transition?" And they said, "Well, we can give you academic accommodations and we can refer you. But
we don't have any peer supports that you're looking for." And I was very shocked just because Penn State has a group for anything. I mean, if your name is Bob, they have a group for people whose
names are Bob. So why didn't they have a group for students who have disabilities? So I sat there. I thought about it. And I said, "Okay. Schedule me for next week. I'm coming back in. We're starting
this organization. You're gonna bring everybody in that can help me. I'm coming in with a game plan." So it was very bold. I asserted a lot more authority than I necessarily had at the time. But it
worked out in my favor because my second semester of my freshman's year, with Susan's help, we started this organization called WINGS. It's a fellowship club and a mentorship program for students
with disabilities at Penn State. So, let's see, that was spring of 2014. So I guess it's been 2 years. So 2 full, active years that we've had WINGS existing at Penn State. And I'm very proud of it.
It's like my child that I have started and raised here. And I think that it's funny because I always speak about wings as if it helped everybody else. But I think the person who needed it the most
was me. And it's been so life-changing in the sense that I've met so many incredible people from it, so many peers who have shared their stories with me and have helped me accept myself even more and
have led me towards my future career, which right now I'm applying to occupational therapy graduate school. And it's opened up so many doors for me. But the biggest joy has been seeing other people
be helped because, and I'm sure most of you know this because you all work or are a part of this field somehow, but people with disabilities don't graduate college as much as people who don't have a
disability. I mean, that's just fact. And you have to wonder why that is. Why is there some kind of deficit? Where are people falling off? And I think that one of the big problems, which isn't
recognized as much is the fact that, a lot of times, people who have disabilities don't enter into a community as easily because you don't feel understood. You don't feel like you're the same as
everybody else. There's something about you that is different. And you don't want to burden other people or burden yourself. And I'm glad that WINGS has been able to open opportunities and open doors
for people who have come into college and been looking for something and have found it in WINGS, found friends, found mentors, found ODS, the Office for Disability Services, because they didn't know
that they could even get resources. So I very much enjoyed starting WINGS. And actually, this past spring, I've handed it off, officially. I have stepped down as the president just to give somebody
else an opportunity to lead and make it their own. I'm still involved. But it's nice to see it transition because that was always my fear was that I would graduate and it would stop. So I'm really
proud that there's somebody else in charge now. But so I guess that's mostly what I do. Now being done with WINGS, I have a lot of other things on my plate. I'm a direct support professional at
Strawberry Fields. So I work with adults who have intellectual disabilities. And I'm also going to be interning at Easterseals in their occupational therapy division. So a lot of good thing to be
excited for. But that's mostly me for now. Thanks.
>> Thank you, Maria. I'm sure the audience can understand why we keep asking her to come back every year, right?
>> Did you hear her say she was advocating for herself at age 14, like, with her mother? We were actually having an interesting conversation this morning. She just learned the term helicopter parent.
That's a new term for her because she said her parents were not helicopter parents. And they just expected her to be able to figure out things on her own. We were having an interesting conversation
about that. Okay. Now we're going to turn it over to Susan Anderson who's, I think, a big part of Maria's success. So, thank you, Susan.
>> Good morning. My name is Susan Anderson. I'm a disability specialist with the, now, Disability Student Resources. Or did I get that right?
>> Student Disability Resource. We just changed out name from the Office for Disability Services this year. So if you hear both those phrases, it's still Penn State. As a disability specialist at Penn
>> Yeah, we ...
State, I work with students with disabilities in terms of classroom accommodation. So students will come to our office who may or may not have had a history of a disability and look for support and
resources available at Penn State for academics and accommodations. Many, many students will have had a history of a disability. And so they've been through the process. But, oftentimes, students
come to college and really have no idea that they even have a disability. So being able to actually seek out support, try to understand what is going on with them and find resources is really
important. And it really behooves the student to take charge of their own situation. In Maria's case, she did not have a lot of history in high school support. And so coming to college and finding
resources, it was really her responsibility to seek that out. She took the bull by the horns and actually created WINGS, which is certainly something that is above and beyond what standardly occurs.
She saw a need. And, obviously, the support and mentorship that WINGS offers has been wonderful for our office. But all students looking for resources in college know that they can go to their
Disability Resource and find support there. Prior to Penn State University Park, I worked in a smaller campus at the Penn State Berks. And so I've got the privilege of knowing the smaller environment
as well as the larger university campus. And before that I was very heavily involved in vocational rehab. So for me, seeing individuals with a disability getting employed is really what I like to
see. And it has carried through the college environment as well. I'm a strong advocate for individuals getting the support they need and moving on, graduating from college and getting employed. OVR
has been instrumental in a lot of the support we receive in that direction. So that's kinda me in a nutshell. And I'll turn it over to our next speaker.
>> Okay. Great. I just wanted to make a comment based on both what Maria and Susan said. I don't know if any of you have ever had the opportunity to hear Dr. Jane Brown out of Harvard University.
She's actually giving a presentation right next door. So you're not there, you're here. But I listened to her speak at the PDE conference last year. And she said something that really struck a chord
with me. And that was, and it was kinda going back to what Maria had said, she said "Schools do a really good job of transitioning students into college. They realize what the expectations are. They
work with those students. They give those students the skills they need. They transition them, oftentimes, into that post-secondary education well. What we don't do a good job of is keeping them
there and making sure they graduate." So that really struck a chord with me, is that those of us who are working with students K through 12, we know what those expectations are for college. And we
try to get those students into college. But maybe we're not thinking about how are they going to stay there. How are they going to succeed and get out of college with that diploma. And, certainly,
what Susan and Maria are both doing, I think, are true examples of that. But I think we all, as educators, have to have that in the back of our minds. Okay. Now we are going to transition to the
Ulanowiczs. So Luke and Kathy Ulanowicz.
I'll make sure your microphone is on. Yep. You guys are good.
>> All right. My name's Luke Ulanowicz.
>> Autism spectrum.
>> I was on the autism specter for about, what was it, 11 years, I think -- or 9 years, my bad, 9 years. I didn't get diagnosed with autism until I was 15 because, well, you know how things go with
those doctors. So, anyway, sorry if I'm feeling a little nervous. Anyways, I'm trying to get the full story in my head here. Okay. I guess I could sorta start at the beginning where back in high
school, during my first year of high school, it was also kinda like a middle school, they didn't exactly handle me transitioning over to the high school very properly. So my mom had to kinda of fight
>> Move this up a little. All right. Okay. Because we're video taping.
>> To get the guys over there to get the special ed classes up in high school. And the thing is that made it a lot more scarier at that time is that during my freshman year, my father passed away.
>> We're gonna have to ...
>> Did I accidentally hit the button or something?
>> No. It says it's still on. Let's try this again.
>> Do you want this?
>> I was afraid maybe this would happen. Okay. Sorry, if you didn't catch that. But, basically, what I just said is during my freshman year of high school, my father passed away. And that was around
the time that they didn't really have any special ed classes up at high school. So my mom had to kinda fight to get special eds up at the high school. And I don't think high school started getting
special eds until either sophomore year or junior year. It was either one of those years. But once I did start getting special ed, I started doing a little bit better in school. And also I have
hearing loss as well. And with that hearing loss, around during the high school time, it was a new problem. I think it was when I was 15, I think, yeah, it was 15 when I first got my first cochlear
implant. And then that's when my hearing got a lot better. And then probably after like a year or so, I asked my mom, "Hey, I would like to get another hearing implant." So it was during the summer
of 2010, '10 it was during end of my junior year that I went to get my second cochlear implant. And that helped dramatically. So then, let's see here, during my senior year is when the special ed
starting getting a lot more better. We started actually going out to a school and doing other stuff with other special ed people. And they were kids with disabilities as well. And we went out, we got
groceries for the home ec room. We also went off to, it was kinda like small internships, like going to Big Lots, helping them put their tags on. We went to elderly people, helped them out. So that
was fun. And then when I graduated in 2011, I didn't exactly accept my diploma. And we went to a program called Lifehouse. It was basically helping you try to be more independent. So I went to the
Lifehouse and I met so many nice people there. It was just like a school, except it was in a house. So what we did there was we learned how to, basically, be independent, like learn how to vacuum the
house, learn how to go shopping, learn how to go onto a job interview. We had some internships up in there. And also at the Lifehouse was they also taught us how to do public transportation. And
unfortunately the Lifehouse that I was at is no longer available from what I heard. Anyway, so I don't know if those are still doing it. But anyway, what else? During that time, I met a lot of nice
people. I learned a lot of nice skills. They taught us how to cook. They taught us how to properly cross a street, which is good. They taught us how to probably mail and stuff. And then, when I
graduated in 2013, I accepted my diploma. And then just a few days later, after that, I moved in with my brother George because where he was living, there were areas where I could get a job. But
before that, during the last year at the Lifehouse I actually got a job up at Giant Eagle, thanks to the help of them. So I've been working there for about 4 years. I'm a cashier. And I'm still
working there. And the one little problem I did have trying to get to work was transportation. But during my last year at the Lifehouse, I signed up for a program called Access, which allows you to
help take a transit to and from the place. You had to have it set up a day ahead of time. So that's been very helpful for me getting to work. So I've been utilizing that. So, like I said, I moved in
with my brother in 2013. And that's when we had to do a lot of other stuff too. And then, oh, yeah, when I first turned 21 we had some difficulty getting transitioned doing medical stuff. And we're
still having a little trouble with that but not nearly as much. And what else is going on. I think that's about it, as far as I can think of.
>> Thanks, Luke. Kathy do you have anything to add? I think Luke should be commended. He's a cashier for 4 years. That's phenomenal Luke, great job.
>> Hi, I'm Kathy Ulanowicz. Luke also failed to mention that when he was diagnosed with his hearing loss and was eligible for his cochlear implant, the psychologist was the one who diagnosed him. So
he was only diagnosed at 15 with his autism. They started him in a program at Wesley. And he got wraparound services. And it was through the Wesley program that he developed a little more social
skills. And his wraparound person was very good for him when his father died. And he was the one that got us into the Lifehouse. So he's had some very good support. And a lot of it came from the
educational community. And that's why he is where he's at today. He is very independent. He lives with his brother because I have remarried. And Luke came and looked at where we were gonna live. And
he's looking around this house. And he's going, "I am not living here." He just didn't like the area. It was we were 20 miles away. And he said, "I'm not gonna live here." And then my son offered him
to stay with him. And so he now lives with his brother. And they now have two kids. So he's an uncle living with a niece that's 2 and a brand-new little nephew who's 3 months old. And he's got jobs
at my son's house. They make sure he gets back and forth to work. But he has a nice support system. We were at the keynote address yesterday where they were talking about the social capital. And Luke
has social capital in spades. He has all this family and all these relatives. And he's working on developing friendships. And he didn't mention it but Uber's now going to be a big thing in his life.
Now he doesn't need somebody to take him someplace. He's able to make plans and go to places and see people. So I think that is going to help him a lot too.
>> We're hearing more and more about Uber and how it really is having an impact with people with disabilities. So here's a true story of that happening. So that's wonderful, terrific. Thanks to both
of you. Okay. Erin.
>> I'm Erin Seller. And I grew up around the Reading area in Bernville, PA, which is like a rural town. And I was diagnosed with epilepsy when I was 7 years old. So I can't really speak much to
remembering before that. But I think that, although I don't really remember the diagnosis so much, I remember constant ... For those of you who don't know, epilepsy's a seizure disorder. And so many
times I remember waking up during the middle of the night and seeing, for no reason ... I did not know it was happening. I just saw my parents in the middle of the night, freaking out, scared to
death, many, many times more than I can count. And I think that that and then also the social aspects of slower processing that may come with, it gave kinda an isolation or an isolation fact to those
times. I'm currently a youth leader with YouthACT Seize Control, which is a national initiative that helps kids with disabilities transition, which this whole conference is about. And so that's been
a really amazing opportunity. And I've gotten to do conferences like this, which I never would've gotten to do. When I was about 14, 7 years after I was diagnosed, I had, at that point still really
not met -- to my best recollection, I don't think I had ever met anyone with the same disability. And I remember my parents saying, "Oh, there's a conference about 30 minutes away. Let's go." And
what 14-year-old wants to go to a conference where a bunch of old people are speaking. So I was kinda dragged along, I was like, "Okay." And so we went along. And I listen to a little bit while the
doctors and the people were speaking. And then I kinda wondered over into the next room. And it had this set up with a bunch of different tables and by chance there was a table there that had the
Epilepsy Foundation of Eastern Pennsylvania set up there. And they had a bunch of different things. One of them was a camp for kids with epilepsy. And it was quite far away. I mean, it was in
Philadelphia. But at the time I was like, "That sounds pretty cool." And I talked to the lady that was there. And it became a huge part of my life. I went to the camp that summer and have been there
ever since. And this past year was my first year as a counselor. So to meet that many people with the same disability and have kind of that connection was priceless. And so, I'm sorry, I'm kinda
going a little bit back and forth here. Also when I was 14, I kind of had a ... I'll just skip that section for now actually. So currently, I'm a rising junior at Cabrini University, which is near
Philadelphia. And I am majoring in English with a track in creative writing. Okay. So facing transition: One of the challenges, and I think what was said earlier is so true, I think that the process
of accepting never really fully ends but there are good times and there are bad times. And I had such a hard time kind of ... I had an IEP starting in 9th grade. But the amount of times I used it
were very slim. And it wasn't, I've heard it's like some people say, it's like, "You don't want it. Cut down the pride." It's not about the pride. It's like if you're in gym class and the president
comes in and says, "Okay. You don't have to do anything today." So you kind of feel bad for getting that extra stool up. And I always felt that I kind of wanted to prove to people that I could do as
much as everybody else, which I could. But I kinda didn't think about it. It was right before my first year of college when I was going to a session at the disability center at Cabrini. And there's a
picture up there of, the first picture is is of three different-sized kids on a stool. And one of them cannot see at all because he is too short. But they all have one box. And the next one, each of
them have the amount of boxes that make them the same height so that they can all see over. And I think that that's what kind of really changed my perspective is that you might be getting some things
that other kids aren't but it's only to get to the level where they are. And I think that that really helped me kind of accept the help. And if I'm being honest, I didn't kind of really come around
to that until this past spring. But I've really become a huge advocate for it. The next thing I wanted to talk about is challenging expectations. So towards the end of my years in high school, my
parents and my guidance counselor, kinda like the people in my IEP meeting were saying, "What if we had an extra year?" And my parents, in some ways, were very, very helicopter parents ...
>> That's what we were talking about.
>> The term that was mentioned earlier. They had it out of the best of heart. They really did. But they were thinking, "Oh, we don't think she's ready," and all this. And everybody was agreeing.
They're like, "Oh, no, yeah, we can have an extra year or 2. And she can actually stay here 'til she's 21 if you want." And in my head I'm like, "An extra year in high school?" And I'm like, "I don't
want that. No. No, no, no." And to me, I didn't see any reason why I wasn't ready. And I was kind of almost a little bit offended that they thought that. So I was actually really determined to prove
that I could. And that, I pushed for it and I got accepted to Cabrini University. I went there. And within my first semester, my GPA in high school was a 3.2. My GPA in the first semester of college
was a 3.8. So I significantly changed that.
>> I don't know many people that can say their GPA of their first semester of college was better than their high school GPA. Not that I know that from experience or anything.
>> I think environment had such a change, like the environment of how college runs was a big thing. It was a very good way to learn. And I tried my best not to say, "I told you so." And the last thing
I wanted to talk about was self-advocacy. So in going back to when I was in ninth grade, I was 14. I had always, previously to that, had seizures mainly at home or they weren't noticeable in school.
So not many kids knew about it. And so I didn't have that factor until later on. But in ninth grade I had my first seizure in the classroom. And I think that was a hugely crazy thing. I remember
wanting to never come back to school that day. And I was like, "I'm not ever going there. And actually, I was also diagnosed with depression a year before, which had a lot to do with just different
things going on at the time. So it was a very crazy time with different side effects and everything. But anyways, so the next morning, my biology teacher, which is the class I had had that seizure in
comes up to me right before class and kind of takes me to the side. And without everybody noticing, everybody's talking at the beginning of class. And she says, "Okay. So you have one of two options.
You can either kind of go in there, pretend like nothing happened or you can go in there and explain to them what happened, try to calm 'em." And I think that's one of the biggest decisions I made. I
actually decided to go in there and try and explain what happened. But when I went in there, I remember trying to explain that I had a seizure and what epilepsy was and my biology teacher knew more
about epilepsy than I did. And that's the point where I realized ... I was like, "There's something wrong with that." So I think that's where I kind of sprung on the self-advocacy thing. I was like,
"I need to get ahead of this. I need to learn what's happening." My doctors would come in the room and they'd have their boards up to their faces. And they'd say, "Oh, how was your day? How was this?
How was that?" then look over at my parents the entire time and then leave. I guess I was like 13, 14 at the time. And I was thinking, "I'm old enough now. You can look at me. You can ask me
questions. I'm the patient here." And I think it took me such a long time to realize that because I was thinking, "I'm just a kid. I'm just a kid." But the truth is that doesn't matter. Everybody's
perspective matters. So, yeah, ever since I advocated with the Epilepsy Foundation for, I think, since I was 14. I'm 19 now. So, yeah, my morning math brain is not working right now. Yeah, I guess, I
don't know, I don't have a wrap-up for this. But, yeah, that's all.
>> That's okay 'cause you'll talk again when we open it up. Thanks Erin.
>> Okay, Elizabeth, you're up.
>> All right. So I'm Elizabeth Beil. Is this working? Okay. So a little bit of my personal history: I grew up just outside of Philadelphia. I myself dealt with a fairly early mental health diagnosis
of trichotillomania which is compulsive hair pulling. At that point in time, people with mental health diagnosis weren't kinda considered part of people who were dealing with a disability. But my
grades plummeted. My social network really fell away. And I think that's always stayed with me and has helped me a lot in my professional life. I'll jump around. I went to Bryn Mawr College and got a
psychology degree. I lived and worked in Guatemala for 10 years. And in 2013, I had a traumatic brain injury. That precipitated me returning to the United States from Guatemala and I really realized
how much I appreciated my family. And social capital is something we're talking about. I was in a position where I had to really physically recover. I couldn't work. I was unable to support myself
financially. But my family rallied around me and really helped me work through that. So it's helped me understand the importance of having people around you who can help you advocate when you're in a
really difficult position to do that for yourself. And so I'd say overall, all of my early experiences and interacting with relatives who had disabilities, friends who had disabilities, dealing with
a variety of situations in my life really kind of directed my professional desire to just have whatever I was doing in my life be something that addressed the challenges of people with disabilities
and other underserved groups. So some of the things I've done: I've worked for an organization in New York State called Project Independence. I was the program coordinator for three residential
homes. These were all adults with intellectual disabilities. And it was a really amazing experience. I learned a tremendous amount from the men and women I worked with. I was in the Peace Corp. As I
said, I lived for 10 years in Guatemala. So I went to the Peace Corp. I left for a little bit and went back. I thought I was going back to build a community park. And it morphed into 8 years of
living and working in a small town and supporting a lot of different community development projects. The community had initially wanted this park. And through that they came to us and they said, "We
think you guys can help us with some of our goals. And here are some of our goals. Our goals are improved education opportunities for our kids, improved vocational opportunities for our kids and
learning how to better take care of our environment." I mean, I think it's things that a lot of parents resonate with. And so we were able to work with them to develop a school. And I was very
involved in developing both the physical infrastructure but as well the academic infrastructure. And the community really wanted a vocational school. So that was our focus. They said, "We want
reading, writing, arithmetic. We want our kids to have that but we also want them to come out with a skill that's going to impact our community." And so that's what we did. And that's what we worked
on and really drew from a lot of the skill sets in the community. And for me it was a wonderful experience and has helped me in looking at kind of transition and one of the awesome things about the
school was there's no idea in Guatemala. So the whole concept of people with disabilities being integrated into the public school setting doesn't exist. So our school had children with physical
disabilities, children with intellectual disabilities because the public school was saying, "We cannot accommodate you." And one of the main goals with both the physical infrastructure and the
academic infrastructure was to make the program accessible. So that kinda transitioned me into also this Hope for Helen and Ailee, which you see up there. One of the little girls at my school had
osteogenesis imperfecta, brittle bone disorder. Her younger sister also had that. And they had been told that there wasn't any option for them in Guatemala. So we connected them with Shriners
Hospital in Philadelphia and were able to bring the girls and their parents for surgeries that really dramatically changed their life. The one girl, Helen, had walked but then had lost the ability to
walk due to fractures and the growth of her bones. They were able to correct a lot of that and provide her with the ability to walk with a walker. Her younger sister had never walked in her life. I
was with her mom when she saw her take her first steps at age 6. And it was incredibly powerful. So that, to me, it said, "I wanna be doing more things like this." So once I kind of personally
recovered from my traumatic brain injury, I started looking for organizations. And I found Epilepsy Foundation Eastern Pennsylvania. And they were looking for someone to run their camp program and
help develop their transition program. And when they met me, they said, "Oh, can you do Hispanic services too?" And I said, "Yeah. Sure." So it's kinda nice. I get to do a variety of things on a
daily basis. And one of, for me, the most rewarding things that's come out of it is the work that we're doing with the YouthACT Seize Control. So initially we had this camp program, which Erin
mentioned. And I see that as a wonderful way to develop the young people in our network. The kids who come to camp learn how to talk about having a disability with their peers. They learn how to talk
to their doctors and advocate for themselves. They learn how to just run around and have fun. And our counselors are mostly all people with epilepsy. And a lot of them also have other disabilities as
well. So we really encourage those individuals to come back year after year as role models for the younger people. But what were we providing the rest of the year? And so the Youth Action Council on
Transition which is run through the National Collaborative on Workforce and Disability, we're actually talking about it later today, one of the last sessions if you want to come, seemed like this
incredible opportunity to develop the youth within our program and not just around epilepsy but across disabilities, for them to have the opportunity to work with organizations from all around the
country and have the resources that those organizations have developed and have the resources that our federal government has developed. And I've seen amazing growth from Erin and from the other
members of our community. And I really look forward to continuing that, work with these kids and just being an ally, being there to give them the platform to transform themselves and transform those
>> Thank you. Thanks, Elizabeth. Okay. We're now going to transition to William.
>> Good morning, everyone. My name is William Del Toro Varges. I am originally from Puerto Rico. To start off, at the age of 6 I was diagnosed with an intellectual disability. I came here to the
United States, to Philadelphia, at the age of 8 where I was still diagnosed with an intellectual disability. I did have an IEP. I had everything I needed. At the point where I got to third grade, I
started having difficulties at school to where my grades started declining, etc., etc. I'll try and shorten this up as much as I can. Basically, to start, really, with my life, my mother had to go
get some assistance. She met Jodi Schaffer from St. Christopher's hospital who got us connected to Philadelphia HUNE in Philadelphia. Well, I can tell you if it wasn't for the advocacy that I've been
getting for the past 20 years, I would not be sitting where I'm sitting now. So I started off with Lucy Hernandez. That's my first advocate before I met Tanya. Basically the difficulties I was having
was that I was having a real difficult time learning in the classroom setting to where there were more than 30 students and everything was so loud. And I could not focus. I could not do what I was
supposed to do. And once I started going to middle school, my difficulties started growing. Well, I'm gonna fast forward a little bit. So I got to middle school and in eighth grade I had a really,
really bad, I would say, episode, temper tantrum, to where it got me to crisis. And I was diagnosed with autism, on the autism spectrum. And, basically, in Puerto Rico, it happens a lot everywhere,
where you're initially diagnosed with an intellectual disability before you're diagnosed with a developmental disability. And when I was diagnosed with the autism, my world changed drastically from
one night to another, literally. I started getting the supports I was supposed to get, the services I was supposed to get. And I started getting much, much better, I would say. So at that point, I
left middle school, I went to high school. I actually started at Frankford High School. And I was having real difficulties in high school. I spent 2 years trying to fight to get out of my
neighborhood high school with the help of Philadelphia HUNE of course, Tanya Regli, at that point. The real difficulties I was having in high school were the same thing. But another thing that I was
having was that I was not able to learn at all. I was stuck. I was afraid all the time. It was a big high school. There were over 1,600 students there. I was real secluded from everybody at the same
time. Even though I was included in regular classroom settings. And at that point, I did not have an IEP. They were fighting for a 504. I was really afraid at that point. So with the help of Tanya, I
was able to get out Frankford and get a 504 and went to one of the best high schools in the city of Philadelphia, which is Lankenau High School where I really succeeded. That's where everything about
myself really came out. And I ended up experiencing things that I thought I'd never experience once I got there. They got me the support I needed. I had a GPA of 1.0 when I got Lankenau. And at my
11th grade year, at the end of the semester, my GPA was already 2.9, which is a big grow from Frankford. I got the experience to come down to Penn State, join the upward bound math and science
program. I got the experience of actually being one of the first Jews at the Philadelphia HUNE, to where they really also helped me spread out. I started college kinda difficult. I had a difficult
time in college. I actually started, a lot of people don't know this, but I'm just gonna put it out there. I actually started college at Millersville University. And I did the one semester. My
services were not really set up at Millersville University. I got really secluded to the point where I wasn't even going to classes or nothing. So I had to come back to Philadelphia back to my old
services. And when I got back to Philadelphia, thank God my services were still set up at Philadelphia. I ended up going to community college where I got my associates in biology. After I finished my
associate of biology, I really believed that I was going to go into the medical field. But then I ended up joining the #IWantToWork campaign, which really changed my life up. It made me change my
perspective. I cannot believe how in 1 year it made me change what I wanted to do. So with the IWantToWork campaign, I ended up changing to Temple University for pre-law. This is going to be my third
semester now. I could tell you this. If it wasn't for the help from the Office of Financial Disability, I would not be in college right now also. But basically transitioning out of high school to
college, it was difficult. It was not easy. And I don't think it's easy for anybody at any point. It's still hard for a lot of people to transition out of high school into college. And it will
probably never be easy. But, well, we have to have supports that we need. We get to where we need to get to.
>> Thanks William.
>> Hello, my name's Tanya Regli. I'm the executive director of The Arc of Philadelphia. But I met William when I was an advocate at HUNE, [foreign] Hispanos Unidos para Ninos Excepcionales, Hispanics
United for Exceptional Children. And I worked very closely with him and his mother throughout this process. He was misdiagnosed. He actually had about 10 diagnosis, including ID, at the time that I
was working with him, initially. And we worked to gradually say, "Well, all of these diagnosis add up to one, which is autism, specifically Asperger's." And we knew that if we couldn't get the
transition process working. And this is really before secondary transition was something we were talking a lot about in our state and in our schools. And we started to work on making sure that he
went to a college-bound high school because one thing was for sure, that if William didn't have that social connection to college and to employment, he wasn't going to connect and have that network
that we're talking about, that we need in life, that social capital. William, however, was extraordinarily good at connecting with all the different services and creating his own social capital
despite everything. William's always been a phenomenal self advocate, just naturally. He did it. That's what he did. And he always managed to get all of us working together, which was a lot of fun.
So we worked a lot with St. Chris and with all the other people that were around him to help him get through this. Getting to Lankenau was life changing. And the transition out of Lankenau wasn't the
easiest. But, fundamentally, one of the other things William needed was employment. And he had actually been told, when he was at Frankford, that he couldn't work, that he was on Social Security and
he would lose his Social Security. So those summer programs were not for him. So we worked against that. And when the opportunity to refer William to the work opportunity with IWantToWork, it really
was a wonderful fit. I think it's been a lot of fun, right, William? And gave William the initial experience that all our youth need to actually do a job, to learn. And all of us, as employers, those
of us who are employers, to have an opportunity to mentor, to support, to help do those e-mails, to figure out how to manage those conference calls, all the things we all learn, really, on the job.
And he's grown tremendously. It's awesome to watch. And, actually, we just hired him, part-time, at The Arc of Philadelphia as our new youth leadership abilities coordinator. And while he's here
sitting calmly, he helped a lot with the youth leadership forum the last 2 years that we've coordinated with our coordinating counsel in Philadelphia. But he's also up to his ears right now in the
stuff at the DNC, Democratic National Convention, because we have 70 youth with development disabilities volunteering at the DNC on Monday, this whole week. And he's helping to coordinate that.
>> Thank you.
>> I'm gonna have to head out ...
>> Because I have to present at another presentation. But thank you for having us.
>> Thank you, Tanya. Sure, absolutely. Are you staying? You're gonna stay with us, William? Okay. So we do have an additional series of questions to ask our panelists. But I'm just curious to know ...
I think some of you might have some questions. So we can actually open it up to the floor right now, if you have some questions. Lynn, we have a question in the back. Thanks. So feel free to ask
questions of a specific panelist or if you just want to ask a general question that any of them can answer, that's fine as well.
>> Hi, Dana Picanti from OVR. I have more comments and compliments to the panel than anything. I want to just applaud those of you who acknowledged your mental health diagnosis. And I think that
that's so important. I often share with people that I've been treated for anxiety for many, many years. And it certainly has helped to shape who I am. But it doesn't define who I am as a
professional, as a person. So I just applaud you for sharing that because I really think that more of us need to do that in order to reduce the stigma associated with mental health issues. But what
strikes me about the entire panel and all of the experiences that you shared was that the whole concept of service to others and how that has helped to shape your lives and to give you purpose. And I
think that as community members in general, that we have to look to be of service to others, no matter what it is. And I think that's how community inclusion is achieved if you will, when we're in
service to one another. So I just want to say that I hear that theme running through a lot of the panelist's comments. And just that there wasn't any one system or one professional that helped any
one of you, that you guys all had different stories, different paths, different supports and that it was really your determination and your self-advocacy that really shaped and determined the path
that your lives took. And so you're all to be applauded and commended. And I just appreciate you being here and sharing of yourself with others. So thank you.
>> Thanks, Dana.
>> Hi, I'm Carl Marshall. And today I'm representing The Sierra Group Academy out in Philadelphia. First of all, great presentations, very articulate, wonderful. But as you have learned of your
disability and learned the scope of your disability and maybe acquired the label of a disability and that helps you evolve into your community activities, your school activities, work and so forth,
do you feel that your disability now defines you more as a person or do you believe that as you've broadened your life scope, it maybe lessened your definition of a person? How do you think that
labeling impacts you now as a complete person?
>> Is it okay if I take this one? Yeah?
>> Yeah. Just feel free to jump in whoever wants to take it.
>> So I've always felt that that's a complicated thing, your disability does not define you by any way. And I think that in some ways, it kinda hindered, from my experience, I think it hindered some
things like, particularly this disability, I was not ever allowed to be in the pool, as a kid, alone. There was different things I can't ... I'm not allowed to drive. And I'm 19. So that kind of
hinders on some things. But I think that if it weren't for me having the disability that I have, I think that my life would have been very different. And I wouldn't have ever found the Epilepsy
Foundation of Eastern Pennsylvania. I would've never probably known what epilepsy was. I might've not been such an advocate for the disability community. And there are so many good things that have
come out of it that I kind of struggle to say ... And sometimes, so I think there's a sense of pride, almost, in kind of ... I wouldn't change how it happens. But, yeah, I think your disability
affects your life. And whether that's good or bad I think is ... I think a lot of it is attitude. And I don't know. I guess I'm good from there.
>> Anyone else wanna take that question? William?
>> Well, for me, I don't like labels. I don't believe on labels. It does not define me. I just think, in a unique way, I'm more logical, probably, than other people. That's what I believe. That's what
I think. And for other people to define us is difficult because it restricts us. It's true. It limits us to the things that we want to do but we can't do because people say, "No. You can't do it
because of this, this and this," which actually has been the experience of half my life.
>> I was just gonna make a comment on that. Yeah. When I was in ninth grade ... A lot of things happened in ninth grade. So I wanted to join a sports team. And at the time I was having a lot of
medical problems and it was all because of my epilepsy. And they're thinking, "Well ..." And they said, "Oh, I don't think it's the best idea. I think that you're having so many medical problems.
What if something were to happen?" And I think they truly were worried but because of their worriedness and I think at the time, I wish I would've stepped up more. But I didn't. And I wasn't able to
join the softball team. However, a teacher, she was a really good teacher, she suggested that I be a manager of the team. And so that was the way to kind of be there.
>> And also, I just wanted to say, I haven't heard nobody say this. But it also limits us to the point where our parents think that we can't do things because of this, x, y and z. And in my personal
experience, my mother said, "Oh, because he has autism, he can't do this, this and this." And a lot of the time, it's not the agencies, the educators or none of that. It's actually the parents. And
75 percent it is the parents who are afraid to let people with disabilities go do their own thing and let them experience the good, the bad, the worst. At the end of the day, everybody needs that
experience and do their mistakes as they are because it does not matter if you have a disability or not. You're gonna make those mistakes to learn.
>> Absolutely. The education field has termed that presuming competence and we've been talking about that more and more for all students.
>> It's always to blame towards the educators, the agencies but everybody keeps forgetting that it's almost the parents as well.
>> Yeah. Yeah. And that's exactly my point, that we should all, that anybody involved with a student or a youth with a disability, we need to start off presuming competence. And a lot of this
conference we've been talking about WIOA. And I think that that's the focus of WIOA, too is presuming competence, saying that students and youth can transition into competitive employment. That's
where we're going to start and then only move back from there as opposed to setting the bar much lower like we've typically often done in the past. So presuming competence, great point, guys. Any
>> I wanted to just congratulate the panel on their presentations. My name is Dexel Tolliver. I work with the Office of Vocational Rehabilitation. And I work with students and adults with
disabilities. My primary focus was with students with disabilities. And I like what you all have had to say. The young lady in the middle, I like the fact ... Yes.
>> That you talked about your doctors talking to your parents and how you realized, as early as 14, that you had a responsibility there too. And you wanted your doctors to focus on you. Oftentimes,
when I work with students, that is the one thing that I focus on, is having a conversation directly with the individual whom I'm responsible for working with. And, like you said, William, oftentimes
it's difficult for parents to let go and to allow their son or daughter to experience failure, short-term it might be, whatever, in order for them to grow. But I think it's so important that the
individual with the disability, regardless to what age you are, that you embrace that you own whatever your condition might be described as or diagnosed as. And the earlier you advocate for yourself,
the better your long-term outcome will be. Thank you.
>> Great point. There was another question.
>> Hi. I had a great time being able to sit here and listen to all of you. While I may not know any of you personally, there's a couple of individuals up there that I have a very strong connection
with. I am a graduate of Penn State, volunteered at Strawberry Fields. And the WINGS program, thats great. I miss the disability services discussion but being able to have a group such as the one
that you've created is phenomenal. It may be a scary thing to advocate, I think even as an individual without a disability, it's very hard to advocate, communicate and speak up for yourself. And the
students at the school will really appreciate and find great success in what you started. So congratulations. I was actually assigned to Frankford High School in the Philadelphia OVR office. And my
question to William is, it's not easy to kinda hear what someone has not done well. And the school district in Philadelphia is not exactly the best. But we are trying to move in the right direction.
And I just kinda wanted to know from you, William, if you have any suggestions for how we can help schools like Frankford kind of connect the dots or be stronger or assist in a better way so that the
journey and your transition period could have been more successful had they had the skills, the resources and knowledge that would've helped you be more successful instead of having to go on to a
>> That's a loaded question. Is there anything they could've done better?
>> It's a good question. But it's loaded.
>> Loaded. So I really don't want to say nothing wrong about anything. I'm honest.
>> You can always tell me afterwards if that makes you feel more comfortable.
>> It don't really bother me. So I can speak for the past. OVR was not really involved with Frankford ...
>> Before I left Frankford or even after I graduated Lankenau. OVR was not involved at all. So even though there was an OVR counselor, it was very difficult to get that OVR counselor to even join with
a student at that point. So, basically, I can tell you from my experience at Frankford, my experience was a really bad experience. But I would not have gone through it also for the supports inside
Frankford. I actually had a really good, she was a special ed teacher, even though I was not in special education, Megan Lassiter. And she actually became the SEL for Frankford High School. And I can
say that Frankford special education program has changed drastically since she took SE office. So she's been trying to get OVR to join Frankford High School for a while now. It's difficult, of
course, when y'all have limited resources of OVR counselors to go up to the schools. But I believe that large schools should get assigned one counseler per school, just that school, especially when
it's a high school of 1,600 students and that the OVR counselor should only focus on that school. That's my thing because it's very difficult for an OVR counselor, and I understand this, for them to
handle five schools of so many students and for them to split themselves in five. And I think that was also the problem in the past, where you had one counselor and five schools. So for my personal
experience with OVR, I was at Lankenau at that point. But OVR didn't present themselves until 2 weeks before I graduated high school. And we want to see OVR to be involved at least by the 11th grade
year if they want to do things for college and all that. But I would love to see them involved now in ninth grade. They do have the funding for that now. But, basically, that's been my experience.
Did I answer your question?
>> You did. I really appreciate the feedback. It's helpful.
>> And I think, I don't work for OVR but Lynn does and there's been, obviously, a lot of changes over the last couple years with the early reach coordinators. So we know that they are getting into the
>> Thank you.
>> Yes. That's why I'm saying in the past. And that was a big change.
>> And I think that was a great thing.
>> It has been a big shift ...
>> Towards OVR now ...
>> Actually going to the schools and meeting the students beforehand. I wish it was there for me. But it wasn't. But it's better late than never.
>> Thank you.
>> Good point.
>> Yeah. I'm from OVR. I'm in Lancaster County. So it's a little different than Philadelphia. That is something that we are trying to do is get in ... I try to get into [Indistinct] sophomore year so
I have at least 3 years with the student before they graduate. And that's something that we have to advocate too, to get a room, like an assigned room that we can get, so on a consistent basis to
have one person. And that's been helpful to have one person, whether that's guidance counselor or special ed consultant or something like that, that all the referrals come through that person. And we
tell them our schedules for the week and that kind of thing. So we're trying to make that liaison point. And the school knows we are [Indistinct] to have one room at a specific time and then we kinda
can help coordinate who has that referrals list, [Indistinct], who's overseeing and everything. But it's taking time.
>> Yeah. I'm gonna repeat because I'm not sure the microphone is working. And, actually, we had a preconference before the transition conference started yesterday. On Tuesday we had school districts
and OVR and agencies come together to talk about some of the positives that are happening but also some of the barriers. And I think what you were talking about are some of the barriers. So OVR isn't
always getting the best information from the schools that they need, whether it's who's high priority, low priority. They don't even know who to contact in the school. Who's that person that they
need to contact? Is there a place for them to meet? So we had a lot of those discussions that addressed some of those barriers and how to break down those barriers to better meet students needs. So I
know we're all working on it both from the education and OVR's perspective.
>> Actually, I was just in a session with Dana Picanti who was talking about getting that information across, getting the system set up between education and OVR to communicate those needed bases and
those referrals and get them over to OVR as soon as possible.
>> Absolutely. Thanks. I think we have time for one or two more questions.
>> Hi. I have two questions. And one is for Maria. And I'm wondering whether or not having nonhelicopter parents ultimately helped you?
>> Short answer: Yes. I mean, my mom is phenomenal. I mean, I could not ask for a better parent. She's also a single mom. So it makes her just even better. But the way she raised me was, "It's your
life." If you want to screw it up, that's your decision. But if you want to make it great, then props to you. So while she did help me a lot in accessing resources, she never forced me to do
anything. So I was never forced to go to doctors. I was never forced to do counseling for my depression. Even still, she'll support the decisions I make. But she'll never tell me what to do. And I
think that's definitely the way that I want to raise my kids because it makes you accountable. And it makes you realize that your life is really what you decide it's going to be. And I think that
that initiative that she instilled in me is what makes me proactive. I think I wouldn't have had the skills or the maturity or the capabilities to start WINGS if I didn't have that sense of being a
go-getter, being independent. So I could not ask for a better way to be raised by my mom.
>> Thank you. And my other question was for Luke. Since transportation is a major issue where I live, I live in a very rural county, Wayne County, we have ... Sorry, is that better? We live in a very
rural county. And transportation is a major issue. We don't have public transportation. I'm wondering whether or not Uber ... How that helps you? How you're able to fund that? How much does that
cost? How does that work for you?
>> Well, I've only taken Uber once. But my brother, George, is an Uber driver, which is how I got into it. And I think it's like, from what I saw, it's like $1.50 just to call the ride. And I think
it's essentially like a taxi. And it charges you per mile. So I'm not sure how much the Uber ride is. I think it's different depending on the distance. But I'm guessing if you're taking a 10-minute
drive it's between $7 or $8 a ride. And I also pay for it myself.
>> Very nice. Very nice. Okay. One more question. And this will be our last question.
>> Paula, I think William would like to say something.
>> Oh, I'm sorry.
>> There was something said yesterday during the peers and the IEP session for transitions and for those rural areas where there's no transportation. And it was something funny. Unless the deer has
signed up for Uber, there's not a lot of Uber drivers out there. I don't know who said it. But I think it was funny. And that's actually a good one where, even though you're in a rural area, you
don't have those Uber drivers around like you do in the city.
>> Good point. If you do have questions and you haven't had the opportunity to have them answered or ask them, I'm sure our panel members will spend a few minutes afterwards. We might have to walk
outside of the room, though, to let the next presenter come in. But feel free to ask our panelists privately after the session.
>> This question is for anyone on the panel. We talk about self-advocacy and how important that is. For a lot of people though, when they are not in that realm and haven't been doing that for a while,
it's hard to start. What would be the key thing for you to help you start learning how to self advocate.
>> My advice would just be, as silly as it sounds, just to do some research and jump in because what I did, actually, I think the first advocacy thing that I can remember would be, I did a small,
small fund-raiser in my school. And when I say small, I mean I literally, out of nowhere, just went to the principal's office and said ... I don't think I'd ever been there before. I was like, "Can I
talk to you?" I literally just said that. He's like, "Well, I have some meetings now." And I made an appointment with him. I came back. I looked up the Epilepsy Foundation's Eastern Pennsylvania site
and everything. I e-mailed the woman I met at the conference to do a fund-raiser. And I'd order bracelets that were from their website to sell and make money. And so I literally went around the
school saying, "Hey, do you wanna buy this bracelet." That was my fund-raiser. So I think the best thing you can do ... I handed out fliers too. I think the best thing you can do is just stick out
and jump in.
>> And actually, to answer the first question, you can say to advocate yourself, "I need help. Can you help me, please?"