#099 Navigating College with Physical Disabilities and Health Conditions with Annie Tulkin Transcript


Lisa Marker Robbins  01:00

heading to college is thrilling yet daunting for any parent in their teen. But when your child faces the added complexity of physical disabilities or health conditions, this transition can feel even more challenging. In today’s episode, you’ll gain guidance and support and be empowered for your journey ahead. Joining us is Annie token. She’s a seasoned expert in the field of disability bringing a wealth of experience from her tenure at Georgetown University. There, she not only supported students with physical disabilities and health conditions, but also played a pivotal role in shaping academic support services for all students. Annie’s profound understanding and insights will illuminate the path for your college bound teen addressing the nuances of managing health and independence, comprehending necessary accommodations and fully embracing the college experience. So whether you’re a parent figuring out this new chapter, a caregiver looking for guidance, or someone passionate about inclusive education, this episode promises to be an invaluable resource. It’s filled with practical tips and inspiring stories. We’re here to ensure that your team’s journey to college moves them to a bright, empowering future. I’m Lisa Mark Robbins, and I want to welcome you to College and Career Clarity, a flourish coaching production. Let’s dive right in to a great conversation. Hi, Annie, welcome to the show.


Annie Tulkin  02:42

Thanks for having me on Lisa.


Lisa Marker Robbins  02:44

This is I’m excited because I think that this is going to be one of the podcast episodes that I learned the most on having been practiced as an IEC for years. And I’ve got my niche of college major and career expertise where I guide students, this is totally out of my wheelhouse. So I’m excited to learn because it’s one of my favorite things to do. So as I as I think about this journey of students with physical disabilities and health conditions, I know that they have to do all the things on the college bound journey that everybody else has to do. And they’ve got all these extra things. And so I even I’m not even in this spot with any of my kids. But I’m like that, even to me starts to feel like oh my gosh, it’s overwhelming. And there’s a lot to do. So. I mean, I guess just start and talk about how, how is the journey different, like what else needs to be done?


Annie Tulkin  03:42

Yeah, so Lisa, you’re absolutely right. There is like another layer of navigation for students with physical disabilities and health conditions. And maybe just for people who are listening, we should define those terms. Right? So physical disabilities, could be a mobility impairment. So a student who uses a wheelchair or a walker or sometimes uses a mobility device, it might also be a student with a hearing impairment or a visual impairment. And so physical disabilities is sort of a broad umbrella term. And then health conditions. I have a lot of clients who have things like pots, Ehlers Danlos Syndrome, autoimmune disorders, pain related disorders and chronic fatigue as well and other health conditions to basically anything any medical condition that might impact your ability to engage in college life, not just academics, but also like in your living space and the residential space and the dining space might qualify for accommodations in the college setting. And so as students are sort of investigating, navigating doing the typical college search things, if they have a physical disability or chronic health condition, it’s really important that they start to look at what sorts of accommodations and supports they might need on a college campus and then more broadly in the community, right, if they need a specific sort of sort of care provider or access to a pharmacy, or whatever those things are. And so I spend a lot of time with students and families sort of navigating those pieces and thinking them through so that it can be a part of their college search process, so that they’re prepared to successfully transition to college.


Lisa Marker Robbins  05:24

You know, it makes me think of my oldest, he’s 25. Currently, when he was in high school, he had a friend that had a severe case of Crohn’s disease, and he needed close access to more of a urban metropolitan area need to be on an urban campus. But, you know, he couldn’t be hours away from a major hospital. So that, you know, even though that’s not something that the college itself was servicing that impacted, like, where they could even begin to consider the options. Yeah,


Annie Tulkin  05:58

I mean, just like any other student, I’d say that students with these types of disabilities and conditions, probably start their search just like anybody else, right, looking at major school culture, maybe the the cost the financial piece. And then there’s this added layer of sort of complexity that they often have to navigate. People in the disability community call this the disability tax, right. So people with disabilities are having to go above and beyond and do extra research and things. And it can be really daunting. And there’s a lot that changes from high school to college. And sometimes that’s all new information to students and families in terms of thinking about the types of accommodations and support a student might have in the high school setting, and how that changes when they go to college because the laws changed. So colleges provide accommodations, under the Americans with Disabilities Act, the ADEA. And the ADEA, provides for reasonable accommodations, and what that looks like and feels like can really vary from school, college to college, you know, program to program. And so it’s important that students are sort of thinking about these things upfront. So you, you


Lisa Marker Robbins  07:09

would say to a student, and I like this, like in my head, as you were just saying that, you know, as an additional layer are this disability tax, which is probably a tax on time and money I would imagine for families that find themselves in these situations. In my head, I was picturing like a Venn diagram, right. So it I mean, this is true of even like student athletes like, even though that’s a very different need. And that’s more of a choice. This is you’ve got your circles where that good old Venn diagram is meeting the needs of your financial fit your campus fit your college major fit, and then that sweet spot, there’s in the middle, where we’ve narrowed it down. Is there, like, Are there any colleges that you would say to a student right away? Like, no, you know, you’ve got to start with this list? Or can they just start their search generally, like any other student would, would start it?


Annie Tulkin  08:09

So here’s my caveat. I’m not a college consultant. I often work adjacent to college consultants and high school counselors. But I would say that I think students just need to start their search like anybody else, right, with the navigating some of those pieces that are that are interest based, and sort of the typical things that students are looking for. The reason I say this is because I get this question a lot, where people say, is there a what’s the best school for someone who uses a wheelchair or who has Crohn’s disease, or whatever the situation is. And my sort of opinion on that is that it’s the one that the student chooses. So assuming they’ve done their research, and they know sort of what they’re getting into, and they know what sorts of accommodations they can expect. And they’ve thought through the pieces of how they’re going to have that continuity of care with health care providers or manage their medication. It should be their choice, right? And there are given takes kind of in those pieces, right. So in terms of physical accessibility. You’ve been on a lot of college campuses, and I’m sure some of your listeners maybe are going on tours now or thinking about starting that. But you’ve seen one college, you’ve seen one college right there. They’re all different, and some are more physically accessible than others. We know that. There’s about 440 500 colleges in the United States, United Spinal put out a guide and I’m happy to share this as a resource so people can check out check it out. It’s it’s a wheelchair friendly campuses guide and it has the top 20 wheelchair friendly schools and then a list of I think like 40 more schools, but of the schools that they surveyed only 16 One six, were 100% physically accessible, meaning that every building on that campus was accessible. So that means that, you know, all the other schools that they looked at that were a part of their review, did not have 100% accessibility. And this is where it’s important to understand that the ADEA does not require everything to be 100%, fully accessible, right, and this is where reasonable accommodations come in. Last,


Lisa Marker Robbins  10:26

and I was just gonna say, like, reasonable accommodations is a relative term. And as you were saying that about, like, out of that many universities, there were that few like 16, one six that were fully accessible. So the all of the other 1000s are reasonably accessible. But that looks really different. So I am guessing that you probably encourage families, like you gotta define reasonable for yourself, like was reasonable for you may not be with that colleges. Can you that example of like, okay, if students had a wheelchair, and you’ve only got the 16 that, so I’m assuming that means everything on campus would be accessible to them for the 16? What’s an example of like a college could say, well, this is reasonably accessible. But a student, I mean, because Give me a break, like students, all people just want to feel like they fit in and they’re not singled out. And they’re not I’m sure they don’t want to bring attention to themselves. So what’s an example of a building that might be considered reasonably accessible, but it might not feel aligned with what is reasonable to the student? Sure.


Annie Tulkin  11:41

And this comes up a lot because often what is technically compliant, so what is technically ADA compliant, is not usable for that student, right. So like, technical, here’s a good example that comes up a lot technical Ada, compliance is like a lever door, right? But the door has to be weighted a certain way. So that some, so it’s not too heavy, so somebody can easily open, you know, turn the knob open the door. Well, if you’re a person who uses a power wheelchair, and you have limited hand mobility, you might not be able to still open that door, right. So what that university might do if your class, if that was a classroom building, they might say, well, we can relocate that class for you so that it’s in a building that has a blue push button door, so you can access it that way. Right. So that would be the accommodation classroom relocation. But this actually comes up a lot. I have a student I’m working with now who was looking at a specific university, and she uses a wheelchair. And she was like, it’s great. I could have access to my, my first year dorm, but I won’t have access to any other first year dorms, because none of them are physically accessible. And so we had a conversation about the level of access that she wanted to have, to her friends, rooms and navigating that space and whether or not she wanted to still apply to that school, given what she knew about the inaccessibility of some of the buildings. So yes, her needs could be met in that residence hall that she would live in, but she wouldn’t be able to visit anybody else in the two other first year residence halls. And that is a really complicated thing to sort of navigate and parse out when your rights students are trying to, you know, fit in and have the experience that everybody else is having. And how do you do that? When you physically cannot access the spaces where your peers are congregating? Yeah,


Lisa Marker Robbins  13:35

well, and I, I sit here and I think about like, for teens, my experience having worked with nearly 4000 of them guiding them on college major and career, they often start building the college list with what you just described, which is that social fit, does it feel like my home away from home? Can I do the fun things that that the college that the college experience should be in? It should be we want it to be fun. And you know, parents are often starting with like, what do they have the right page? Or can we afford it? You know, how far from home things like that. So, I love the idea of like, I mean, how would you how do you advise your families to start talking about this? Do you have any, like conversation cues you give them or how to approach that at home?


Annie Tulkin  14:24

It’s I mean, it’s extremely complicated, especially since every student is sort of in their own place with what their feelings are about their condition, whether it’s visible or invisible, right so a lot of students I work with who have invisible disabilities, so chronic health conditions that other folks can’t see, you know, experience a lot maybe of fatigue and related to those conditions and related to the medicines they’re taking things like that. And often get a lot of questions maybe in their high school from their teachers are saying like you don’t look sick or nothing. seems wrong with you. And so they’re used to that sort of negative experience, right. And so they often don’t want it to dominate their college search. And I always tell them, like, it shouldn’t dominate your college search, but it is a factor, right. So like, we do have to make sure that students are prepared, and are thinking through these things, and leaning into the discomfort of those conversations. You know, I think a lot of times students aren’t really aware of the shadow work that their parents and guardians are doing behind the scenes. And so I’ll often work with a parent and a student to have a conversation, so that the student can better understand like, what is mom or dad doing to make the trains run on time, and it can be really illuminating, and it takes time. So getting started early is really essential for people. And I actually created a course called preparing students with physical disabilities and health conditions for college. And so parents can take that course, or ICS, people who work with students with physical disabilities or health conditions, because it gives you a good sort of insight of the things that you need to think through in terms of the Independent Living components, continuity of care pieces, the accommodation pieces, because those are the things that a lot of times families leave till the end, they think, Oh, well, I’ll have three months before college starts. And then my child will know how to manage their medication. But these things take time. And and you have to scaffold them, and you have to build them up. And the students have to build up the tools and the confidence, right? So I always tell folks that they should get started is as early as possible, right. And I think like, junior year of high school is an ideal time. That’s when everybody’s talking about college anyway. Because once you get to senior year, things are so busy, and it’s hard to sort of integrate this into the conversation, then you’re sort of drinking from a firehose? Well,


Lisa Marker Robbins  16:53

I think, you know, and they need time to become independent with that we I talk a lot when we’re, you know, inside my course, I’m encouraging students to connect with professionals to learn about their job, ask for job shadows, do the right extracurriculars, there’s a lot of like, adult adult engagement. And as they’re doing that, you know, that’s an adulting, skill, email, you know, and now I’m thinking like, I would put some of that stuff, managing their own medication making doctor’s appointments, which are, you know, special for your population. And there’s lots of kids who don’t necessarily have qualify for what you’re talking about who have to take medication daily. But this is the first time I’ve ever thought about, like managing your own medications, whether that’s an inhaler for asthma, or a vitamin supplement. As one of the adulting skills, we talk a lot about email management, and advocating and laundry. But this is a new one that I think we should add to the list. So yeah,


Annie Tulkin  18:03

for sure, I mean, you mentioned Job, Job stuff, and job search and sort of the job seeking skills. And I think it’s important for people who are listening to understand too, that the ADEA, the Americans with Disabilities Act also applies to the workplace. So when your student is seeking accommodations in college, that’s a that’s a good training ground for thinking about what their needs might be sort of later on once they hopefully graduate college and and go into the workplace. Right. So there might be some accommodations related to that. And there’s a great resource called the Job Accommodation Network, which is for employees and employer employers on navigating sort of job and workplace accommodations. So we’ll put that we’ll drop a link in Yeah, I


Lisa Marker Robbins  18:48

love all these, we’re gonna put all of them in the show notes, for sure. So as you’re talking about this, I start to think about just like a typical college bound journey without all of these extras that they need to navigate. There’s no way we can ever know everything about a campus or what that experience. I mean, I even crack up my daughter is a senior in college and getting ready to make my final tuition payment. And I’ve always loved she attends a university that had a tuition freeze for four years. So while that tuition has always been the same, I’ve watched her fees escalate. Well, that would be something like we couldn’t have known and it wasn’t so much that if you know we can’t navigate it, but if there’s always surprises, right? So what happens to a student who they’ve done as you advise what you teach in your course, and they have confidence that this feels reasonable to me, and they go ahead and they go on that campus and then there’s something that’s not working like how does that work on a college campus because obviously, as you mentioned, this is governed by by Roll law. But what’s your advice to them when those surprises do pop up?


Annie Tulkin  20:06

Yeah, I mean, surprises will pop up. So


Lisa Marker Robbins  20:11

first of all, like manage expectations, right?


Annie Tulkin  20:14

For every for every student, there will be something that is unexpected and surprising awaiting you at college. So I think that’s, you know, just grounding that expectation is important, right? Ideally, the student has already connected with the Disability Support Office. And we should note that disability support offices at different universities have different names, could be Student Accessibility Services, access services, Student Disability Services, academic resources, they all have different names. And so ideally, the student has connected with those people prior to applying and prior to committing. And I always say, like, students should do a Vive check with those people to understand not just what accommodations you may receive, because the Disability Support Office will not guarantee accommodations until they’ve actually read your documentation. And every university has their own documentation guidelines. So that’s important for students to know. But just understanding how they approach their job, right, so do they, you know, do they approach it? Is it is compliance based? Do they think about the holistic needs of the student? Have they had students with similar conditions or the same condition before? And how have they navigated and supported those students? So just thinking about those those pieces, and if they encounter an issue, hopefully going back to those people who they have developed a relationship with, to talk about the issues that they’re facing


Lisa Marker Robbins  21:43

of it. So I’m sure in all of the many students that you’ve supported, and you worked at Georgetown, professionally for nearly six years, and now you work privately with families. Because I, I’m not even a mom, and in this particular position, and I feel in my body a level of like stress, or like, wow, this is big, because it’s hard to send your kid off to college anyway. Can we leave our listeners with a little bit of success and inspiration about students who have found their fit and are having great experiences that might give parents hope that this is figure out double?


Annie Tulkin  22:23

Yeah, so I, I’ll say, I’ll say this, I’ll start with this one. So I have a partnership with the Christopher and Dana Reeve Foundation. So students with any type of paralysis can work with me for free. And, yeah, it’s exciting. And the reed foundation actually has a number of success stories on their website, so people can check those out. But one sort of success story related to that, I have a number of students who need personal care attendants. And that’s something that colleges do not provide colleges don’t provide one on one aides or care attendants. And that is an immensely daunting task to sort of navigate and think through. And I have one student in particular, who was just super stressed out about it. But he was able to work with his college to get a housing setup that would work for him. And for a personal care attendant, than to work with an agency and to hire some students from the school to support him throughout the day with daily living needs. And you know, he’s thriving. And there are a lot of stories that sort of mimic that. They’re not without their challenges. And there is a lot, there’s a lot of challenges, especially when you’re hiring other people to support you in a very personal way. But it can be done. And I think that’s a really important message. And then for students who have invisible disabilities and chronic health conditions, there’s one student I’m thinking of, in particular, who had faced a lot of adversity in her high school experience from teachers who told her she didn’t look sick, and were just sort of not super kind to her. And now in college, she’s sort of taking ownership of her disability identity, and networking and connecting with other students who have different types of health conditions and building coalition and partnership with them to advocate for better resources and things on campus. And so that’s a really important piece to there’s an identity aspect here that often gets overlooked. And, you know, disability is an identity and I think a lot of students who have disabilities and go to college, find that on college campuses and find other people who are advocating working together connecting, having fun. And I think that’s important for students to do. We’re all sort of looking for who we are over in that college age range. So yeah, it’s a really cool sort of byproduct for for that student I was talking about. I


Lisa Marker Robbins  24:47

love it. I love it. So great resources. You’ll send them over to me and we’ll get them in the show notes. I’m curious on that Christopher and Dana Reeve Foundation. How does a student become eligible for that? Do they just go to their website and apply? Like, what does that look like? Yeah,


Annie Tulkin  25:06

so I offer a free 30 minute consultation so people can connect with me on my website, which is accessible college.com. Or you can go directly through the reef foundation and go through their intake process with an information specialist. And there’s some other resources that I’ll share as well, I worked on a college readiness resource website for blind and visually impaired students through the Perkins School for the Blind. And I’ll make sure that we share that too. It has great content for any student with a disability who’s looking at college and specific resources for blind and visually impaired students. But there’s a ton of stuff on my blog and on my website, too, and people can follow me on Facebook, on Instagram, Twitter, you know, just find me all the social media ways and we can connect to because I always I do a lot of speaking events and engagements that are free for folks to check out.


Lisa Marker Robbins  26:00

Well, it sounds like even though it’s a daunting task, and is going to cost additional time and money, which I assume these families are used to, it is doable with a really positive outcome. So that’s the inspirational piece of it. Thanks, Annie. We’ll get all of your links in the show notes, and I appreciate you making time to help our families. Yeah,


Annie Tulkin  26:21

thanks for having me.


Lisa Marker Robbins  26:28

As we bring this insightful episode to a close, I extend a heartfelt thanks to Annie token. If you’re still with us till the end, it likely means you’re navigating the unique challenges of preparing a student with physical or medical needs for life after high school graduation. From my weekly college bound challenge, let’s take one of Andy’s concepts and transform it into a meaningful exercise for parents and students. I invite you to explore the idea of Shadow Work, a term and a use to describe the often unseen support and accommodations provided by parents and caregivers. Here’s your task for this week. Separately, have the parent and the student jot down instances where they perceive this shadow work happening. When you compare your notes. It’s an opportunity to gain a mutual understanding of the depth and breadth of support being offered and required. This exercise isn’t just enlightening. It’s crucial for effectively planning your college journey. Also, check the show notes for the wealth of resources we discussed today. If you found this episode, enlightening, remember these conversations with experts like Annie are rare yet necessary for those who share this walk. Share this with others who might be taking a similar path as you so they too can move forward with the confidence insight and hopeful hearts that you have. Thank you for being part of our journey. And don’t forget to tune in for our next episode. It’s our milestone 100th episode featuring a special panel that promises to be unforgettable