#137 Navigating Physical Disabilities and College

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Welcome to the College Parent Central podcast.
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Whether your child is just beginning the college admission process or is already in college, this podcast is for you.
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You'll find food for thought and information about college and about navigating that delicate balance of guidance, involvement and knowing when to get out of the way.
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Join your hosts, vicki Nelson and Lynn Abrahams, as they share support and a celebration of the amazing child in college.
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Welcome to the College Parent Central podcast.
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This is the place where we talk about all things connected to parenting our students as they think about going to college, as they transition to college, as they survive college.
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My name is Lynn Abrahams and I am a learning disability specialist.
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I've worked with college students my whole career.
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In fact, I just retired from 27 years at a small liberal arts college working with students and their families, but I also have two sons that have gone through college and I've lived to tell that tale as well.
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I'm here with my colleague and friend, Vicki Nelson.
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Vicki, yes, hi, and then I'll introduce and then, yes, we have a guest, and that's the important thing.
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So I'll try to speed this up because you don't want to hear from me.
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I am a professor of communication at a small liberal arts college and I have Lynn Beat in terms of the number of years that I have spent but I'm not going to put a number on it and in addition to working with my students every day and seeing what I, you know learning from them, I also have three daughters who have gone to college and who have come out the other side, and so, like Lynn, I come to this topic as a professional who works with students and also as a parent, and so that's who we are, but, more importantly, we're here with someone.
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So I know Lynn is going to introduce our guest.
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Our guest is Annie Tulkin and we are thrilled to have her here.
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She is going to be doing some talking about physical disabilities and health conditions in the college world.
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Annie is the CEO and founder of Accessible College and founder of Accessible College, as well as an educator, author and public speaker.
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She's an expert in the area of college preparation and transition, particularly for students with physical disabilities and health conditions.
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Annie was the associate director of the Academic Resource Center at Georgetown University for nearly six years.
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In that position, she supported undergraduate, graduate and medical students with physical disabilities and health conditions and oversaw academic support services for the entire student body.
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Annie's worked with the disability field for her entire professional career, including positions as a regional disability coordinator for Humanitas Inc and worked on the Job Corps Disability Support Contract for the Department of Labor, and as a specialist with National Service Inclusion Project and University Centers of Excellence in Developmental Disabilities technical assistance projects.
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Annie has worked a lot and in a lot of places and she's got a lot of information to share with us, and I want to welcome you to coming to our podcast.
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Thanks, Lynn and Vicki.
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I'm super excited to be here.
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Super.
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You know, I think that we'd like to start by asking you a little bit about your own personal story.
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And how did you get to do this work?
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Why are you doing this work?
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Yeah, so in my long bio.
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You mentioned that I was the associate director of the disability support office at Georgetown and the academic resource center.
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There is the disability support office and as we're going into this conversation, we should probably tell people that there will be some language shifts that we're making and some things that we're talking about.
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So universities all have disability support offices.
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They all have different names accessibility services, student disability services, access services it's all over the place.
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So Georgetown's is called the Academic Resource Center and my background is in education.
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My undergraduate degree is in secondary ed and my master's is in special ed and I, when I was working at Georgetown, one of the things that really kept emerging in my work with students with disabilities was that so many students were coming in and they didn't really know what sorts of accommodations they could request.
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They hadn't really thought about independent living and their needs.
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They hadn't thought about continuity, independent living and their needs.
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They hadn't thought about continuity of care, medication management, and as an educator, I was surprised, right, and I decided then that there was more support needed specifically for students with physical disabilities, so wheelchair users, mobility device users, students with sensory impairments, so hearing impairments, visual impairments, and students with chronic health conditions like diabetes, epilepsy, crohn's disease, pots, ehlers-danlos syndrome, because a lot of times those students didn't get the targeted support that they needed in high school to actually think through all of the types of accommodations they might need in the college setting, and they weren't familiar with the process for requesting accommodations and the self-advocacy skills that were needed.
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So that's what sort of brought me to this work.
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But more personally, I was diagnosed with a learning disability as a kid.
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So my parents were both counselors, school counselors, and they recognized that I was not doing great at math and science and things like that, and so I was diagnosed with a processing disorder when I was in fifth grade and then as an adult I was also.
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I've been diagnosed with chronic health conditions too, I think.
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Like a lot of people, sometimes things emerge later on in life, and so I bring that personal experience as well into the work that I do with students and families.
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And I work with students and families across the country and I have partnerships with the Christopher and Dana Reeve Foundation, the Muscular Dystrophy Association, other foundations as well, and I've done some work with the Perkins School for the Blind on creating a college readiness resource for blind and visually impaired students too, so we can share those resources in the notes.
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I'm sure, yes, we will.
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So you primarily do you work with parents, with students?
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How do you split that?
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The student has to self-disclose and they have to be able to connect with the disability support office professionals and have conversations about their needs and what accommodations they're requesting.
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So it's a really great idea for students to start working on that before they get to college, right, so that they have the skills and the language and are prepared to have those conversations skills and the language and are prepared to have those conversations.
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I also work with parents, and sometimes parents accompany students to some of the initial meetings, because parents, you know, they also have concerns and things that they're maybe not so savvy on too and need to learn a little bit about specifically around that transition, because many of the parents that I've worked with have been really strong advocates for their students for their whole life, right, and so it's hard sometimes as a parent and I'm also a parent to step away and to let your student navigate some of these things independently.
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So there is a transition for both sets the student and the parent, and we have to acknowledge that in this work too, because it's that is a challenge for people, and so, yeah, so I work with with both parents and students, and I also have an online course that's called Preparing Students with Physical Disabilities and Health Conditions for College and parents that that I made that course specifically with parents in mind.
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It's also for educators and healthcare providers and counselors, too, and it has CEU credits attached for the American Occupational Therapy Association and the Association of Social Work Boards too, because I figured like a lot of people who are connecting with students could really use this information and thinking specifically about how do students start to think about their accommodation needs, how do they start to plan for independent living?
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And since there are fewer students who have physical disabilities and chronic health conditions, you know a lot of support people educators, parents, guardians don't have this information, and so I wanted to sort of demystify this process for people, so I created an online course to do that, in addition to the one-on-one work that I do as well.
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And we're going to put some information in our show notes about how to find you.
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Okay, there will be lots there in the show notes.
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And you know you mentioned the idea of students having to, with some of these disabilities, having to learn how to navigate on their own and, you know, let parents step back just a little bit and do that.
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So I guess I have a when and a what question, because I bunch my questions.
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One of my questions can really be five questions, but I'll stick it to two, and it's what should students with these disabilities be looking for when they're looking at a college, and when should they start the process?
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Is there a different timeline for these students than the normal sort of junior year kind of thing?
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So, what are they looking for and when should they start that process?
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Yeah, so two-part answer to a two-part question.
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Fair, that's fair enough, so I always say that students with disabilities should start their college search just like any other student, right?
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What are their interests?
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What are they looking for, what sort of school culture, you know?
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Do they want a big school, small school, urban, rural, price-wise, like looking at all the typical pieces that every other student is looking at?
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For many of the students that I work with, they also might want to consider their healthcare needs, right.
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So it could be thinking about, like proximity to health care providers or if they need, you know, specific medications or transfusions or infusions or care needs that they might have.
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They might have to sort of factor that in as well.
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And then for students with physical disabilities, if you're a wheelchair user, a mobility device user, you might be looking at the physical accessibility of the campus too.
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But I think that the most important thing that a student can do is sort of look at the culture of the campus.
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Is the culture inclusive?
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Are the people on the campus willing to work with you, to support you, to meet your needs?
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Because college accommodations are governed under the Americans with Disabilities Act, the ADA provides for reasonable accommodations.
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So what is reasonable really varies based on the campus, the physical space, the program that the student is in, and so it's really important that students are having upfront conversations with disability support offices to sort of begin to understand what types of accommodations they may get if they choose to go to that school, and so I often encourage students to do that.
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In terms of timing, I think you know most students tend to tune into this stuff about junior year because that's when the high school folks start talking about it more right, like.
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So that's when everybody starts to think about it a little bit more critically and that is a great time.
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The earlier you can start, the better.
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Right.
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So like if a student in a family wanted to start looking at schools or exploring options, you know, freshman, sophomore year of high school, that's totally fine, that's good, that's even better.
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But junior year at least right, and I typically start working with students junior year.
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That is when everybody's sort of turning on their brains and thinking about these things.
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But in terms of sort of like my process and how I support students and thinking about it, you know we start looking at, like what accommodations they might need on campus, holistically so academic, but also residential, so in the dormitory dining accommodations.
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A lot of students I support have different sorts of food needs or food allergies, transportation accommodations, recreation accommodations.
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So we're thinking about things more holistically, right, and then also identifying the independent living needs, because a lot of the students that I work with might need support with some things like support with activities of daily living, like bathing, dressing, um, you know, getting eating, um, toileting.
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So that could be a need that a student has and there's a whole process to think through on how that looks and how it works on a college campus.
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And then also thinking about, just like medication management, continuity of care.
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If you need to see doctors, how are you still seeing them?
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Can you see them remotely?
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Do you have to go in person?
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How will you do that?
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So there's a lot of sort of considerations that students might have to think about, sort of based on their conditions that they have.
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I hope that answered your question.
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Lots of good information there.
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I want to ask a question about I want to go back to talking about an inclusive environment, like how do you tell and I know that that's sort of a vague question, but how do you tell it's going to be?
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You know, how do you compare colleges in terms of inclusivity?
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One question, and then I actually have another too, and that's who calls the disability office to ask those questions?
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Does the student do that?
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Will they talk to students?
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Do parents do that?
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How do you do that?
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I'll start with the second question first.
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So when I'm working with students, we create a list, a customized list of accommodations.
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Then we also create a list of questions that the student can ask the disability support office.
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I usually target those questions with the student to figure out how do we get beyond, yes or no.
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Because I've been on the other side of the desk in a disability support office, I know that most families want the assurance that the student will absolutely get the accommodation that they are requesting.
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And I'll say this straight up right here for everybody to hear.
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You probably won't get an assurance before you commit to the school, sign the dotted line and submit your documentation, because the disability support office does not have to guarantee that they will provide a specific accommodation to a student who has not matriculated, who has not signed the dotted line and gone through the interactive process, and so that can be concerning for a lot of the families that I work with.
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But, um, I like to use sort of um, open ended questions or like scenario based questions so you can see how the person on the other side of the desk is processing the information.
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I also encourage students to ask like are there other students who use wheelchairs on this campus.
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Can you connect me with those students too, because that's another great way to see, like, what has somebody else's experience been here?
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How are they?
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You know, how is the school meeting their needs or not?
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And just to have a chit-chat In terms of the inclusive?
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Oh wait, I should say the students need to reach out to the Disability Support Office.
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Disability Support Offices don't really want to hear from parents.
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Sorry, parents, I know this is a parent-focused podcast, but part of this is gearing up your students so that they are ready to have these conversations right, and so a huge piece of that is handing that over to your student.
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So usually what I recommend is that, like, the student can script it out, and this is something that I do with students either have the student you know create an email and send that to the disability support office to set up a time to talk, or to script something out so that the student calls.
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I found that for most students I work with, actually writing an email is a good starting point In most disability support offices once they see that the student has a specific type of condition, like POTS or Ehlers-Danlos, or if they say I have cerebral palsy and I use a wheelchair or I have a spinal cord injury.
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That is different than most of the outreach that comes to the disability support office, and so people are quite receptive to that and they can understand why someone would want to ask more questions, right.
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And so you know, I think that having that student do the outreach is really important because in the end, those are the people that the student is going to have to work with.
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You know, for the next four probably four plus years, at least once a semester they will see those people, probably more, and so it's really important that the student is vetting the people in the disability support office to make sure that the student feels comfortable with those people and feels seen.
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The student feels comfortable with those people and feels seen the inclusivity piece.
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There are some like general ways that you can sort of vet universities.
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First, there's about 21 colleges now that have disability cultural centers which are separate from disability support offices, support offices.
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So disability cultural centers are identity spaces, much like a women's center or an LGBTQIA plus center or a black student center or minority student center.
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All have different names at different places, but those identity spaces can be an indicator that there's at least conversations about disability, disability rights, disability history and a space for students to convene, right, that could be a potential indicator of a, you know, an inclusive environment.
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There are 4,500 colleges in the US about and I said, what did I say 20, 21 disability cultural centers, so that's not a lot.
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The other way that I often encourage people to sort of look at universities is to look at the student newspaper and do keyword searches Good idea.
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Yeah, there's a lot of stuff in the student newspaper, it turns out.
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So you know key terms disability, accessibility, you know diversity, inclusivity, even wheelchair, you know like, just look up some key terms.
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Look for student clubs and organizations.
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That's another kind of indicator too.
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There are often health condition specific organizations, or even, you know, like mental health specific student organizations or disability specific clubs or organizations on campus, so that those can be helpful too.
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And then like the physical spaces, right.
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So some universities actually require accommodation statements on flyers and outreach, right?
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So if someone needs an accommodation, so when you're walking around a campus you're checking out the place, like see if you see a flyer, does it have an accommodation statement?
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Look at the admissions pages.
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Do you see yourself reflected in these admissions pages, in the pictures, in the information?
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Is there a section on the admissions page about disability?
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Look at the mission and values of the disability support office too.
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That's another great indicator.
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Are they just about technical compliance?
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Or is there mention of, you know, inclusivity, holistic care, that kind of stuff?
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So those can be indicators, fabulous.
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Great stuff.
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So I'd like to follow that up, kind of back up to the first question or the first part of your multi-part question, that conversation with the disability office not having matriculated yet.
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You know, as part of their selection process, as part of their finding out about the college do do disability offices and admissions, how much do they communicate?
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I could imagine some students who might say I don't want to disclose a whole lot about my disability until I've been accepted because I don't want it to hurt my acceptance.
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Is that something students should be thinking about?
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The short answer is no Good, they shouldn't, because there's a firewall between admissions offices and disability support offices.
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The admissions process is distinctly separate from the disability support office process and never the two shall meet, and so students can connect with disability support offices and have conversations totally separate from the admissions process.
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People often get concerned about that, but you know, you guys have worked in higher ed.
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Higher ed departments are very siloed, sometimes to a detriment.
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I can assure folks that the admissions department is not calling up the disability support office and the disability support office is not calling up the admissions department to share information like that.
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That is, that is illegal.
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So also, like, students aren't asked to disclose a disability in the admissions process, so it's really up to the student if they want to disclose a disability, maybe in a personal essay or sometimes if they have gaps in education.
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Many of the students that I work with have had flare-ups in their conditions or maybe they've had surgeries so they've missed school, missed high school, so there are gaps in their transcript and there's a place in the Common App where you can an additional information section where students can sort of explain what happened.
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So that's a choice that the student can make in the admissions process.
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But talking to the Disability Support Office doesn't impact the admissions process at all.
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I think it's important that students understand that and be reassured and not be afraid to have those important conversations.
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Yeah, I mean this is here's the other thing, just like to sort of blow everybody's mind for a second 21% of college students report having a disability at any institution.
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It's at least between 10 and 20% of the students who are receiving accommodations.
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So that's the largest marginalized group on any college campus period, and people with disabilities are one in four adults in the United States.
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So there's a lot of us, and I think that it's a fascinating space to be in, because it's also a space where we just don't talk about it enough and so it seems like quiet and stigmatized, but in fact the numbers tell us a different story.
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So I need to ask you this question, you this question what do you think, how do you think the current state right now of talking about disabilities and inclusion and on college campuses, how do you think that's going to impact students?
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Do you know what I'm asking?
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Yeah, like current state of where things are.
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Yeah, so that are happening.
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Yeah, so you know it's it.
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This is.
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This is highly it's complicated, but, but I think for most of us, like we believe as educators, that disability is an aspect of diversity, right, and so some universities actually had disability initiatives included in their DEI statements.
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But I think there's sort of two pieces here.
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First, the legal component right, so the ADA, the Americans with Disabilities Act, still exists.
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Section 504 of the Rehabilitation Act still exists.
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That's the law that is anti-discrimination.
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You can't discriminate against a person because they have a disability.
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They need to have access to education, hospitals and whatnot, and so we have those things.
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So the accommodations component is still vibrant and solid and is there, and every student can still request reasonable accommodations.
00:26:55.425 --> 00:27:28.811
The separation of sort of the identity spaces around initiatives on diversity and inclusion I think it's a challenging space right now, but there are colleges that do have disability cultural centers and are still working hard to make sure that students with disabilities are included in initiatives and are looking for students with disabilities to help bring, you know, bring a robust conversation into their university classrooms.
00:27:28.811 --> 00:27:39.460
Right, because people with disabilities have lived experiences just like everybody else, and so I think that you know that is it's.
00:27:39.460 --> 00:27:51.439
We're going to see less visibility around different tight aspects of diversity because of the sort of political climate right now, but that doesn't make it go away.
00:27:51.439 --> 00:28:15.521
So I mean, when you think about the stats that I shared, right, it's like, well, we're all still here, so so it's really up to to students to, too, to sort of activate some of these pieces on campus and to be engaged and to be talking about themselves and their needs and their hopes and the things that they'd like to see in the future.
00:28:16.526 --> 00:28:19.915
And I would think that different colleges and universities will be different.
00:28:19.915 --> 00:28:27.513
I mean, you know, that's all the more reason to really check out sort of the atmosphere at different colleges.
00:28:27.874 --> 00:28:28.095
Yep.
00:28:28.734 --> 00:28:38.953
Yeah, so okay, Vicki, your turn, yeah my turn and I'm thinking how to frame a question I'm curious about.
00:28:38.953 --> 00:28:48.393
I mean, we know well, I'm a professor, so I like to think that academics are the most important part of a student's college life.
00:28:48.393 --> 00:29:07.094
After many, many, many years, I am coming to the conclusion that that's not true, because students have a life beyond the classroom and for most students that's more important than what happens in the classroom and it's not inappropriate.
00:29:07.094 --> 00:29:20.877
So I'm thinking of things like housing and extracurricular activities, and how might some of these disabilities affect housing?
00:29:20.877 --> 00:29:26.486
I mean certainly access if you're in a wheelchair or something like that.
00:29:26.486 --> 00:29:34.140
But single rooms, service animals, you know those sorts of things.
00:29:34.140 --> 00:29:41.011
You know students who can't hear a fire alarm or some of those sorts of things.
00:29:41.011 --> 00:29:49.490
How might that affect housing or a student being able to fully participate in the life at college?
00:29:50.452 --> 00:29:57.736
Yeah, so those are all spaces where students would be able to request accommodations, right?
00:29:57.736 --> 00:30:03.388
So every college, typically through the disability support office, has a housing accommodation process.
00:30:03.388 --> 00:30:26.107
So if a student needs a specific type of housing accommodation, like an ADA-accessible room or a room with an en suite bathroom or a walk-in shower or, let's say, visible fire alarms if they are deaf or hearing impaired, then they would make that request as a part of the housing accommodation process.
00:30:26.107 --> 00:30:38.267
Housing accommodations having been the person who processed all of these housing accommodations on the disability support office side at one point in my life are granted based on demonstrated need.
00:30:38.267 --> 00:30:39.230
So, like, what is the student's need?
00:30:39.230 --> 00:30:40.252
Why do they need what they're asking for?
00:30:40.252 --> 00:30:41.035
What's their condition?
00:30:41.035 --> 00:30:42.058
How does the student's need?
00:30:42.058 --> 00:30:43.683
Why do they need what they're asking for?
00:30:43.683 --> 00:30:44.526
What's their condition?
00:30:44.526 --> 00:30:46.391
How does the condition impact them?
00:30:46.391 --> 00:30:50.448
Why are they asking for what they've asked for, and is that reasonable?
00:30:51.069 --> 00:31:00.478
And then availability, which is the trickier one, because, you know, I worked at an institution that was initially built in 1789.
00:31:00.478 --> 00:31:04.452
The housing has been updated since 1789.
00:31:04.452 --> 00:31:09.691
But, you know, physical accessibility, especially on historic campuses, can be challenging.
00:31:09.691 --> 00:31:26.787
And even if housing has been updated after the passage of the ADA, which was in 1991, you know there are a finite number of spaces that may have been brought up to technical ADA compliance.
00:31:26.787 --> 00:31:35.836
And then there's this other piece that we don't often talk about is like what is technically compliant may not actually work for that specific student right.
00:31:35.836 --> 00:31:58.010
So, like I work with a lot of students who have neuromuscular disorders, muscular dystrophy, spinal cord injuries, and the needs of one student with one type of wheelchair are different from the needs of so, like a manual wheelchair user who has use of their hands different from a student who uses a power wheelchair and maybe uses a joystick or doesn't have the same hand mobility right.
00:31:58.010 --> 00:32:04.092
So like entrances and technical compliance and push buttons and things can look different for different people.
00:32:04.092 --> 00:32:20.770
And this is where a student would really want to engage that disability support office to have conversations about what could potentially what their room could look like or what sorts of housing might that university have.
00:32:21.731 --> 00:32:58.945
I've encountered a lot of places recently where the first year residence halls don't have any en suite bathrooms and you know I have students who have gastrointestinal conditions or they also might have, like you know, toileting situations where they're, they have like tubes and they're changing things out and colostomy bags and I navigate all of these things with people and so thinking about, okay, like how would that work in a community bathroom setting or what other options might there be?
00:32:58.945 --> 00:33:14.835
And so sometimes students might ask to live in an upper class placement so that they can have access to those other things, and that could be a reasonable accommodation if there's a room available, because upper class students choose their rooms, you know the year ahead.
00:33:14.835 --> 00:33:18.478
So then there's that question about like, well, what's available and how does this work.
00:33:18.478 --> 00:33:23.596
But, yeah, students can ask for accommodations around all of those pieces.
00:33:23.596 --> 00:33:33.672
Um, and it's really important and this is where I I can be really helpful too in working with students and families and thinking through what are the specific things that we're requesting.
00:33:33.672 --> 00:33:49.378
Um, because a lot of times students haven't lived independently before, maybe they've been to a camp or something like that, but, um, they're not thinking about sort of all of the pieces, and so I spend a lot of time with families thinking about all of the moving parts.
00:33:49.378 --> 00:33:53.391
With recreation, you can still request accommodations too.
00:33:53.391 --> 00:34:05.659
So, for you know, to attend a, you know, a speaker event or a concert on campus or a sporting event, all of those fall under reasonable accommodations.
00:34:05.659 --> 00:34:10.626
The way that clubs and things are handled can be a little bit different from school to school, right?
00:34:10.626 --> 00:34:25.887
If someone needs a sign language interpreter or something that costs money, you know they are going to have to talk to the disability support office and figure out how can we get an interpreter for that club or how can we make that space accessible, can we move it to a more accessible space.
00:34:25.887 --> 00:34:32.547
So that is, you know that's something that students will have to think about.
00:34:32.547 --> 00:34:46.313
As they're, you know, engaging with these schools and looking at them Specifically for students with physical disabilities too, I often encourage students, when they're going on tours A, to look for an accessible campus map.
00:34:46.655 --> 00:34:52.936
Does the college have a map that shows you all of the accessible entrances, the accessible routes, the accessible bathrooms?
00:34:52.936 --> 00:34:54.681
I mean, it's 2025.
00:34:54.681 --> 00:35:03.592
There's no reason that we can't have these things and have it on a map so that people can actually access it, because it's good for everybody, right?
00:35:03.592 --> 00:35:14.103
If you know, if an older person's on that tour, if a parent in a stroller is walking around the campus, like great information for people to have Universally designed, right?
00:35:14.103 --> 00:35:15.869
So we're thinking about everybody's needs.
00:35:15.869 --> 00:35:20.766
So that's something I usually tell students to look for If they're signing up for a tour.
00:35:20.766 --> 00:35:23.891
Is there a way to request accommodations for?
00:35:23.931 --> 00:35:24.351
that tour.
00:35:25.393 --> 00:35:37.688
You guys would be surprised how many universities do not have a place where a student can request an accommodation and then the students having to call, the parents having to call a lot of hullabaloo ensues.
00:35:37.688 --> 00:35:40.012
So I would look for that too.
00:35:40.012 --> 00:35:52.650
It tells you something about the space and the place, and also, where are the accessible entrances located?
00:35:52.650 --> 00:35:54.076
The student has to live there nine months out of the year, right?
00:35:54.076 --> 00:35:59.650
So it's like do you want to be entering every building around the back by the dumpsters every single day or not?
00:36:00.172 --> 00:36:09.413
You know, and like you know and like that you know, people make decisions on where they want to go to school, you know, based on a lot of different priorities and criteria.
00:36:09.413 --> 00:36:19.992
So the student really has to feel comfortable in that environment, right, and they might choose to go to a place that, on the face of it, looks less physically accessible.
00:36:19.992 --> 00:36:29.739
But maybe the people or the environment you know, the accommodations and the supports that they're getting, outweigh some of the physical.
00:36:29.739 --> 00:36:55.907
You know, navigational pieces, and it's a personal question for each individual student on what you know, what they want their priorities to be and what they envision their experience in college being priorities to be and what they envision their experience in college being Wow, it's complicated, there's so many layers, so many extra layers for these students.
00:36:55.927 --> 00:37:22.844
But you know, it strikes me, as you're talking about that and pointing out that you know they have to weigh their priorities and all that, perhaps sometimes these students have given more thought to their experience on a college campus than other students who've just sort of coast along and haven't really thought about how is it going to feel for me on this campus, and so they may have a bit of an advantage.
00:37:22.925 --> 00:37:28.717
I would just interject to say like sometimes I mean, these are also typical teenagers in many ways, right?
00:37:28.717 --> 00:38:03.193
So it's like sometimes they're just like I want to go to a Big Ten school and whatever you know like, and go to the sports games and everything in between, right so I encounter families where people have been like, really diligent and are thinking about accessibility up front or thinking about their healthcare providers, and then I encounter the other thing where they've put no thought into anything related to their condition or disability, but lots of thought into the sports or the academics or the program, right so, and it just it's unique to each individual and how they're thinking about the process.
00:38:03.405 --> 00:38:04.068
Yeah, with or without disabilities.
00:38:04.068 --> 00:38:05.759
Yeah, yeah, it's pretty to each individual and how they're thinking about the process.
00:38:05.778 --> 00:38:11.416
Yeah, with or without disabilities, Every, every, every every one of them is different.
00:38:14.246 --> 00:39:30.704
So I just in doing, in getting ready to talk to you and doing a little bit of of poking around to see some things I don't want to get into I mean we talked about this a little bit before we started recording that we could have nerdy conversations and dig deep into all of this, and most parents don't need or want to hear that, but some of the statistics that I saw were really interesting in that the number of things like ADHD and learning differences and autism and some of those things, the percentage of students with those kinds of learning disabilities far outweighs the percentage I mean of of students with physical disabilities mobility issues, chronic issues, brain injury, those sorts of things and so the fact that that this population of physical disabilities is so small, um, and I'm not sure where my question is but how does that impact students' experience?
00:39:31.190 --> 00:39:33.016
What should they be ready for?
00:39:33.016 --> 00:39:43.485
The fact that I mean you mentioned the percentage, you know, 20% and that feels like wow, 20%, that's a lot, but it really isn't.
00:39:43.485 --> 00:39:50.344
And so what can they anticipate about their experience when they're in such a small minority?
00:39:51.994 --> 00:40:01.639
Yeah, I think the fact is, like you said, that most of the students who are requesting accommodations in college have learning disabilities.
00:40:01.818 --> 00:40:09.121
Add, autism, mental health conditions is like the next highest request for accommodations.
00:40:11.110 --> 00:40:35.047
You're totally right in saying that students with physical disabilities are a smaller part of the population I think it's six or seven percent and so I would say that sometimes that means that people on the university side, on the disability support office side, may have less experience sort of helping a student navigate the accommodations request process.
00:40:35.487 --> 00:40:59.106
Most students that I talk to think that there's like a menu of accommodations or something that they'll get to choose from or, like you know, they expect that the people in the university will sort of know what that they're going to need, when in fact the university is oftentimes relying on the student to say this is what I need and these are the accommodations that I'm requesting.
00:40:59.106 --> 00:41:18.152
My preparation with students who have physical disabilities and chronic health conditions is help them think through what those accommodation requests are going to be, so that they have a list sort of prepared, so that when they're going into those conversations it goes a little bit easier.
00:41:18.152 --> 00:41:36.806
I would also say that sometimes it means too that, like that, many professors might sort of lump students together because as a professor, vicki, you've been on the other side of that desk or in front of that chalkboard.
00:41:38.389 --> 00:41:38.931
Chalkboard.
00:41:38.931 --> 00:41:40.317
You just dated yourself.
00:41:40.317 --> 00:41:41.199
I am an old lady.
00:41:42.710 --> 00:41:52.193
Whiteboard, promethean board or whatever whiteboard, a Promethean board or whatever.
00:41:52.193 --> 00:41:55.304
So you know, professors get an accommodation letter that states what accommodations the student has been approved for.
00:41:55.304 --> 00:42:00.918
It doesn't tell the professor what the student's condition or conditions are right.
00:42:00.918 --> 00:42:09.460
And so I think sometimes professors get a lot of accommodation letters, especially if you're in a larger state school where you might have, you know, 200 students in your class.
00:42:09.460 --> 00:42:14.159
If you're figuring, 20% of those have accommodations or needing them.
00:42:14.159 --> 00:42:16.911
So you're getting a bunch of accommodation letters coming in.
00:42:17.492 --> 00:42:20.659
You're thinking most of those students likely have learning disabilities.
00:42:20.659 --> 00:42:22.449
That's just how it kind of.
00:42:22.449 --> 00:42:41.603
You're just like, oh it's a wash of this, right, when in fact someone might have Ehlers-Danlos Syndrome or a condition that has unpredictable flares, right, so they might have you know anything really epilepsy, diabetes, something that needs to be monitored.
00:42:41.603 --> 00:43:23.019
So you know it's really important that they've actually had a conversation with the professor about what that's going to look like in that class, right, and what the expectations are, so everybody's on the same page.
00:43:23.019 --> 00:43:26.719
So for a lot of students that's like a little bit of extra work.
00:43:28.387 --> 00:43:46.235
In the disability community we often talk about like fatigue, of having to just keep talking about your needs and keep requesting things, but it is a reality, especially in the college context, for students who have to constantly remind people.
00:43:46.235 --> 00:43:54.153
This is my accommodation, this is what I need, these are the things that I have, and that's just.
00:43:54.153 --> 00:43:55.396
It's something that I help students sort of prepare for.
00:43:55.396 --> 00:44:03.036
You know, oftentimes we will make canned emails so that they have them ready to go, so that they can just hit, send, copy, cut and send.
00:44:03.036 --> 00:44:08.003
But that's something that students really need to be prepared for.
00:44:08.003 --> 00:44:08.623
Yeah.
00:44:11.471 --> 00:44:12.974
So it really strikes me.
00:44:12.974 --> 00:44:43.853
I mean, you talk a lot about, you know, this is what I work with students to do and for students who may not be working with you, for parents to what I'm hearing as you're describing all of that is the ability to self-advocate, and so parents can really work with their students on identifying that list and then understanding how to self-advocate, because I think sometimes that's hard for students.
00:44:43.853 --> 00:44:50.514
They feel as though they're you know they're being a pain or they're you know they don't know how to express.
00:44:50.514 --> 00:44:54.563
This is this is what I need and this is why I need it.
00:44:54.563 --> 00:44:57.195
So, yeah, and shameless plug.
00:44:57.755 --> 00:44:58.717
Yeah, shameless plug.
00:44:58.998 --> 00:45:08.016
I do have an online course preparing students with physical disabilities and health conditions for college, and a lot of times I'll have parents and students take it together.
00:45:08.016 --> 00:45:20.478
So it's like they get the understanding of the laws, they get the understanding of how to create their list of accommodations, questions to ask, thinking about independent living, continuity of care, preparing for medication management all of that is in there.
00:45:20.478 --> 00:45:27.215
But more generally, it's like students can start to work on that and parents can start to lengthen the leash a little bit, right?
00:45:27.215 --> 00:45:35.625
So, like during a 504 plan meeting in high school, having conversations there, letting the student lead, letting the student read their IEP.
00:45:35.625 --> 00:45:38.775
If they have an IEP, the student has a neuropsych evaluation.
00:45:38.775 --> 00:45:39.559
Have they read it?
00:45:39.559 --> 00:45:40.875
Do they know what's in there?
00:45:40.875 --> 00:45:43.518
Like, do they know what their doctors are writing about them?
00:45:48.769 --> 00:45:57.094
Because, whether or not parents like it, like the student is going to have to be well-versed on their, on their condition, and like part of that, I think, is actually knowing, like what the quote unquote professionals have said about us.
00:45:57.094 --> 00:45:58.599
Right, like so.
00:45:58.599 --> 00:46:11.583
So if we don't know what's in those things like, it's hard when the person on the other side of the desk has already read all this information about you, very personal information you should know what information that you've submitted right.
00:46:11.583 --> 00:46:18.103
So, like those are like little things that students can start to do and start to digest, really too.
00:46:18.103 --> 00:46:30.815
Because you know, I'm all I remember sitting, you know, at Georgetown in the disability support office there reading documentation, and then asking the student and they're like, wait, it says what in there?
00:46:30.815 --> 00:46:33.530
And I'm like I don't, didn't you read it?
00:46:33.530 --> 00:46:34.251
It's about you.
00:46:34.251 --> 00:46:57.041
Here you go, Read what this person said about you, you know, and they're like, oh well, yeah, I guess it is kind of like that and so, yeah, so I would say that that, like you know, parents can start working with students on thinking about these things early on, starting to boost those independent living skills too.
00:46:57.061 --> 00:46:58.405
So, like, medication management is a classic one.
00:46:58.405 --> 00:47:03.822
Whether you have ADD or epilepsy, you know the student's going to need to figure out how are they getting their medication.
00:47:03.822 --> 00:47:05.311
You know how are they?
00:47:05.311 --> 00:47:07.960
Are they putting it in in pill packs?
00:47:07.960 --> 00:47:10.474
Are they using a reminder system?
00:47:10.474 --> 00:47:11.817
How are they doing that?
00:47:11.817 --> 00:47:17.034
And the best time to start is before they get to school or they go to college.
00:47:17.034 --> 00:47:42.235
You know, start today, um, in high school, where they're still in a supported environment, so that you know if, if the, if the wheels come off, they're still at home and it's not all going to fall apart, but we need to start working on those skills because I've always blown away at how many students really have no idea, have never refilled a prescription, don't even know their doctor's name or how to make that phone call?
00:47:42.335 --> 00:47:43.059
Yeah, no idea.
00:47:43.059 --> 00:47:48.461
So those are like the adulting skills that people can work on.
00:47:48.690 --> 00:47:50.695
And that's true for all students.
00:47:50.695 --> 00:47:54.503
Disabilities are not those daily living things.
00:47:54.869 --> 00:47:55.130
Yeah.
00:47:55.130 --> 00:48:11.570
So, annie, we could talk all day, okay, because there's lots of good stuff here and I think you've given parents quite a bit to think about, which is fabulous, and I think you've given parents quite a bit to think about which is fabulous.
00:48:11.570 --> 00:48:19.565
One of the questions we always ask folks that we interview at the end is if you we're asking if you have any books you could recommend.
00:48:19.565 --> 00:48:23.231
We're, vicki and I are both readers and you know.
00:48:23.231 --> 00:48:27.282
Are there any things you could recommend for either parents or students?
00:48:27.610 --> 00:48:27.751
Mm-hmm.
00:48:27.751 --> 00:48:28.371
Are there any?
00:48:28.411 --> 00:48:29.954
things you could recommend for either parents or students.
00:48:29.954 --> 00:48:37.605
I have lots of books that I am reading, but one right now, and some are academic and some aren't.
00:48:40.909 --> 00:48:43.751
I read some romance novels as well personally, I like mysteries.
00:48:43.851 --> 00:48:45.253
We can talk about those later.
00:48:46.213 --> 00:48:51.759
But the one book that I think is like really, really important is being Human.
00:48:51.759 --> 00:49:00.224
It's called being Human an Unrepentant Memoir of a Disability Rights Activist, and it's by Judy Heumann.
00:49:00.224 --> 00:49:25.402
And Judy Heumann passed away about two years ago and Judy Heumann was a disability rights activist in the United States who was pivotal in passing Section 504 and passing the ADA, and she had polio as a kid and was a wheelchair user and she was also an international disability rights activist as well, and it's a great book.
00:49:25.402 --> 00:49:38.331
And if you're not into reading books because some people aren't I would recommend the documentary Crip Camp.
00:49:38.331 --> 00:49:39.454
It's C-R-I-P-C-A-M-P Crip Camp and you can watch it on Netflix.
00:49:39.474 --> 00:50:02.652
It was a documentary that came out a few years ago and was nominated for a bunch of awards and it was on Judy Heumannann is featured in it and it was on a camp that was in upstate New York for young adults with disabilities and how they used that camp as a catalyst for passing section 504 and then passing subsequently the Americans with Disabilities Act, and it's just.
00:50:02.652 --> 00:50:11.860
It has like old footage from the camp and all these people who went to the camp and how this camp impacted them, and it's an amazing documentary.
00:50:11.860 --> 00:50:14.038
So Netflix you can also find it on YouTube too.
00:50:14.038 --> 00:50:15.255
You can watch it there as well.
00:50:15.255 --> 00:50:17.556
So those are my recommendations.
00:50:17.876 --> 00:50:18.498
Fabulous.
00:50:18.498 --> 00:50:19.422
I'm thrilled.
00:50:19.422 --> 00:50:21.295
I can't wait to find both of those.
00:50:21.295 --> 00:50:23.882
I haven't, so thank you, thank you.
00:50:24.931 --> 00:50:31.072
So you're going to give us all kinds of information to put into the show notes, but very quickly.
00:50:31.072 --> 00:50:39.958
If parents wanted to learn more, wanted to reach out, what would be the best way for them to follow this up?
00:50:40.460 --> 00:50:44.800
Sure, they can find me on my website, which is accessiblecollegecom.
00:50:44.800 --> 00:50:48.302
I'm also on Instagram at Accessible College.
00:50:48.302 --> 00:50:50.831
I'm on Facebook at Accessible College.
00:50:50.831 --> 00:50:55.621
I also have a Facebook group with two independent college consultants.
00:50:55.621 --> 00:51:02.974
The group is called College Success Physical Disabilities, chronic Health and Mental Health, and we'll put a link in the show notes.
00:51:02.974 --> 00:51:04.318
It's a great group.
00:51:04.318 --> 00:51:12.061
It's open for anybody who's interested in learning more about students with physical disabilities, health conditions, mental health conditions and going to college.
00:51:12.061 --> 00:51:16.989
Yeah, so we'll put all of that, those contacts, in the show notes.
00:51:16.989 --> 00:51:18.431
Yep, great.
00:51:20.195 --> 00:51:49.206
Thank you so much for spending time with us and sharing so much information with us and sharing so much information and as we have these conversations about disabilities, we've had quite a few about learning disabilities, and so this is really nice to look at this, but I'm always struck, as someone who's not in that world, how much of the advice holds for any parent, any student.
00:51:49.206 --> 00:51:54.922
If you just listen, there's so much that everybody can pull from this.
00:51:54.922 --> 00:52:00.543
So thank you so much for taking us into the physical disability world.
00:52:01.210 --> 00:52:02.635
Yeah, thank you both for having me.
00:52:03.010 --> 00:52:07.474
And thank you to everyone for joining us and we'll see you next time.