Platforms like Zoom and asynchronous learning provided a quick fix for students during the pandemic. Jessica Campanile wonders if classroom modifications will stay in place even after Covid-19 restrictions are lifted. Because for people like her, a post-baccalaureate student with disabilities, those are accommodations she had sought for years.
She argues there was an aversion to virtual education because people wrote it off as ‘less than.’ But she says, that’s proven untrue:
“I think continuing to value these modes of communication just as much as in person education will lead to more accessible and inclusive educational practices.”
Plus, we talk to Leslie Margolis, Managing Attorney at Disability Rights Maryland. She describes the daunting task of recouping lost hours of special needs services during the pandemic, to help bring younger pupils up to speed.
SHEILAH KAST: Good morning. I'm Sheilah Kast. We're On The Record. In a few weeks, another school year will come to an end. It's been quite an academic year. Institutions and instructors moved quickly to provide accommodations aiming to maintain educational access for students of all ages. The upset frustrated many, but for some students, it was a blessing because suddenly they were provided classroom modifications that they'd been requesting for years.
In a few minutes, we'll talk to a lawyer from Disability Rights Maryland to hear about the battle for compensatory education, a way to make up for lost months of classroom time for students with special needs. Joining us first is Jessica Campanile. She wrote a commentary in the Baltimore Sun titled ‘Thanks to the Pandemic, the needs of people with disabilities are finally being met. But will it last?’ Campanile is a post baccalaureate student at Johns Hopkins University and a disability rights advocate. Welcome to the show, Jessica.
JESSICA CAMPANILE: Thank you so much for having me.
SHEILAH KAST: What are you studying at Hopkins?
JESSICA CAMPANILE: So I'm in the post baccalaureate premedical program. It's a career change program for people who decided a little bit later than during their undergrad that they wanted to apply to medical school and be a physician.
SHEILAH KAST: Oh, and you've also been involved with the Disability Health Research Center at Hopkins. What is that?
JESSICA CAMPANILE: Yes. And so the Disability Health Research Center is a really innovative center run by Dr. Bonnielin Swenor, who is just the most incredible research mentor. And mostly what our work has been focused on this year has been covid related. And so we recently published a study led by an undergraduate named Sabrina Epstein on the impact of covid-19 on people with disabilities, where we interviewed focus groups of people with different types of disabilities to understand their experiences during the pandemic. And working on disability centric research with teams of disabled researchers is a really special experience and kind of just an example of the most accessible educational or academic experience I've really had.
SHEILAH KAST: you identify as a student with disabilities. Tell us about that.
JESSICA CAMPANILE: Yes, and so I identify as disabled, I have a mobility disability and a chronic illness -- as a sort of policy, I don't share my diagnosis with other people, especially publicly, because I am going into medicine. And, you know, I find that when I do that, sometimes individuals will view me as a patient rather than a future colleague. And so that's sort of become my policy as I've moved into the world of medicine, is to focus mostly on identity because the medicalized definition of disability doesn't resonate a lot with me. What more resonates with me is the social model of disability in terms of understanding that the world around us is not built for people like me and figuring out how to navigate that through activism, advocacy.
SHEILAH KAST: What has been your experience all through your academic journey before the pandemic with regard to requesting special accommodations?
JESSICA CAMPANILE: Throughout my academic experience, requesting accommodations has always been, you know, it can it can be a burden on students and it can be a difficult experience for students, especially depending on where they are in terms of their identity or their relationship with their identity, whether they identify as disabled or not. And I do want to address the use of the word special accommodations in terms of requesting accommodations there. They're not necessarily special 20 percent or 19 percent of undergraduates have a disability and so might be eligible to receive disability services or accommodations. And I think that is and this was in no way punitive you, Sheilah, that that's just pointed at this idea that disability in collegiate education is largely an issue that's not talked about. And it's something that people don't realize affects a fifth of the students in the classroom, and I think that that issue of representation and issue of data, that's a big thing that my research mentor, Dr. Bonnielin Swenor, is very passionate about, is the fact that we it's very hard to advocate for the disabled community on on high levels with government officials and things because people ask for data and we don't talk about disability enough in this country. We don't collect data on disability enough in this country, which then hinders our ability to show people the true impact that inaccessibility enabling them has on disabled people in this country.
SHEILAH KAST: I'm not going to ask you for data, but I would like to hear an example or two of what you've had to go through to get accommodations.
JESSICA CAMPANILE: I think my biggest frustration, and this is not directed at any institution, but is rather a structural issue, is that of absence versus access. And so for me, when my health or my disability precludes me from attending class, I receive additional excused absences where it's OK if I have to miss something and. For me, that doesn't feel like access, that feels like an excuse that feels like, OK, I have to miss something, but now I have to get notes from another student or I've missed a class or I have to find out where the PowerPoint is posted online versus now during Zoom school, during the pandemic. If I need to miss a class, I can just watch it later that day or I can watch it the next day. It's something that we're now absence isn't an issue and there's access instead of just allowing disabled students to miss out on portions of their academic experience as an accommodation.
SHEILAH KAST: That's Jessica Campanile, Johns Hopkins Post Baccalaureate student and disability rights advocate on the record and. I'm Sheilah Kast. We're talking about a commentary she wrote in The Baltimore Sun called, ‘Thanks to the pandemic, the needs of people with disabilities are finally being met. But will it last?’
What motivated you to write the commentary for The Baltimore Sun?
JESSICA CAMPANILE: This weird mix of relief, but also frustration, I think I felt as the pandemic continued to rage on and I was sort of pleasantly surprised by how accessible some parts of my education had become, but also frustrated that this hadn't been an option during my entire undergraduate or high school experience. And again, I can't speak for everyone with every type of disability. And people with different types of disabilities will have found the switch to online schooling and working and being to be different levels of accessible. But for me, with a mobility disability, it's a lot easier to get over to my desk and be able to attend class than to walk across campus. However, the double edged sword to that is screen time is often detrimental to my health. And so now in a world where productivity is largely dependent on how much time you can spend on a screen, that's been a real challenge for me this year.
SHEILAH KAST: Where will you continue your studies in the fall.
JESSICA CAMPANILE: So in the fall I’m matriculating to the Perelman School of Medicine at the University of Pennsylvania, which I'm very excited about, I am very dedicated to the dream of becoming a physician and specifically becoming a disabled physician. Twenty five percent of the US population are disabled or have a disability, but only three percent of physicians. And I think that representation, especially in a field that we've seen this year, is so important to how we can continue to exist as a society and also relocate some sense of normalcy, I think is really important. And I'm very excited to get started on that journey.
SHEILAH KAST: You wrapped up your commentary in the Sun this way, quote, Make no mistake, this is not a win for accessibility activism. It is an acknowledgement that when our needs become the convenience of the majority, they are quickly accomplished. Real progress means meeting our needs fully because we are valued as learners, not merely by coincidence or legal requirement, close quote.
Our producer, Melissa Gerr reached out to the offices of Student Disability Services at Johns Hopkins University and the University of Maryland to ask about post pandemic plans. And they said they couldn't comment because those issues are under discussion right now.
What would real progress in education access look like?
JESSICA CAMPANILE: That's a great question. And I think as we relocate what normal can look like after this year, I think it's about trying to do that without recentering ableism or ablest structures. And for me, I think. I think the aversion initially to recording in class, putting it online and allowing students to tune in from wherever they might be via Zoom or some other technology, I think that aversion was because people had written off those experiences as less than. And because people have said that's not the educational experience we are going to provide, but now it's the educational experience everyone has been providing for a year. And many schools have been charging the same or only slightly lowered levels of tuition, so we know that they value it the same. And so my vision for what this looks like going forward is to hopefully allow ourselves to stop writing off disabled people's alternative's or disabled people's needs as inherently less than and remember the absolute lifelines that things like Zoom or asynchronous learning provided to students this year. I think continuing to value these modes of communication just as much as in-person communication will lead to more accessible and inclusive educational practices.
SHEILAH KAST: As an advocate for people with disabilities, what advice do you have for someone listening who's working to get adequate education access for themselves or for a family member?
JESSICA CAMPANILE: It's not something that I've figured out and it's something that I have to engage with and navigate every single day with professors, with other students who, you know, may not always be aware or as accommodating or as understanding that there are disabled classmates in their midst. And I think my advice to you would be, To seek out to find your allies at whatever institution you're at. So much of my success has come from finding mentors who really have believed in me and who have helped me navigate these systems. I'll talk again about Dr. Swenor. I mean, she's the first academic mentor that I've had that has openly identified as having a disability and that has made an absolute world of difference to me in terms of having someone who's not only an academic mentor to me, but also a personal one, who's navigated the system and all of its inaccessibility and bias and has, you know, made such an impact.
SHEILAH KAST: Jessica, thanks for talking with us.
JESSICA CAMPANILE: Yes, of course. Thank you so much for having me.
SHEILAH KAST: Jessica Campanile is a Johns Hopkins Post Baccalaureate student and disability rights advocate. Her commentary in The Baltimore Sun is titled, ‘Thanks to the Pandemic, the needs of people with disabilities are finally being met. But will it last?’ We have a link to it at the on the record page at wypr dot org. Short break on the record. Then we'll ask a lawyer from Disability Rights Maryland about reclaiming hundreds of lost learning hours for students with special needs. I'm Sheilah Kast. Stay with us.
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SHEILAH KAST: Welcome back to On the Record. I'm Sheilah Kast. We're talking today about education access for students with disabilities. We heard from a Johns Hopkins University student who hopes that modifications like virtual learning remain in place after the pandemic for those who want or need them. Now, we're focused on younger kids. Students with disabilities are guaranteed by law access to specialized education services. But many of those services were altered or interrupted when schools closed due to the pandemic. What happens to those lost hours? How can they be recouped or can they?
To answer those questions, Leslie Margolis is joining us. She's managing attorney at Disability Rights Maryland. For more than three decades, she's worked on policy and litigation with a focus on education. Welcome to On the Record, Leslie.
LESLIE MARGOLIS: Thank you. Thanks for having me.
SHEILAH KAST:Tell us more about what disability rights Maryland does and your role there.
LESLIE MARGOLIS: Sure. We are what's known as the Protection and Advocacy Agency for Maryland, and we were created in accordance with a federal statute. And there's an agency like ours in every state and territory. So we have the mandate to protect and advocate for the rights of people with disabilities. Our office represents adults and children who have legal issues related to their disabilities. And as you noted, I manage our education works. We represent children with disabilities who have questions or issues relating to to their education and children with disabilities are entitled to a free, appropriate public education under a federal and state laws. And unfortunately, that is not always something that happens automatically. So families have to work hard to make sure that their children's rights are protected. And they often turn to our office to to to get that protection.
SHEILAH KAST: Academic institutions had to act quickly when pandemic restrictions were mandated. You told the Baltimore Sun six months ago, quote, There is a chasm between what the administration at the state and local levels thinks should be happening and what families are actually experiencing, close quote. Now, we've almost completed the school year, paint us a picture of what the on the ground situation has been for students with special needs and their families.
LESLIE MARGOLIS: For many, many children, distance learning did not work for for many children, it's not possible to sit in front of the computer and get education delivered that way. They need hands on instruction. They need a teacher standing in front of the classroom or standing with them. They need one to one assistance to facilitate their participation in education and that just simply disappeared. The in-person therapist that so many children rely on in order to benefit from their education, physical therapy, occupational therapy, speech, language therapy, counseling services, and suddenly parents were expected to be their children's paraprofessionals. And that's just simply not possible. What we saw with a number of our clients was that children were unable to access their education. They were unable to participate in their education. I have clients and in my office, other attorneys in my office have clients who missed pretty much a year or more of services. They just simply could not accept. So some of it is is the devices having devices that even when when students had devices and school systems work, worked very hard to get devices into families hands. That wasn't enough because there were clients who couldn't independently turn on the device. They couldn't navigate the device. They needed somebody with them at all times and they just couldn't absorb the instruction. They couldn't. It wasn't meaningful to see somebody on a screen and you get education delivered that way in. Many of the school systems were really resistant to looking at ways of delivering in-person services, either by contracting with outside providers who were delivering services in people's homes or looking at other ways of making services available. So students simply went without education.
SHEILAH KAST: About how many students in Maryland require specialized education services?
LESLIE MARGOLIS: Ah roughly 11 or 12 percent
SHEILAH KAST: And tell us more about what the services are that we're talking about,
LESLIE MARGOLIS: so that can really vary under federal law, there are disability categories. So students who are and who have autism, students with intellectual disabilities, students who are deaf or blind or have orthopedic impairments. There are a range of of disabling conditions. But the kind of key eligibility criterion is that students have a disability that adversely affects their ability to benefit from education. And as a result, they need specialized instruction and potentially related services. The things I talked about a minute ago, like speech and language therapy or physical therapy, counseling services that will enable them to make meaningful educational progress. So it's individualized, specialized instruction and that can take a variety of forms and it needs to be delivered in the least restrictive environment. So there's a presumption that students will get those services in the general education classroom with whatever services they need to make that happen with the supports they need. And only if that can happen satisfactorily would they be removed to increasingly more restrictive programs such as separate special education classes or separate special education schools. But the presumption is that many of those services can be delivered in the general education classroom.
SHEILAH KAST: That's Leslie Margolis, managing attorney with Disability Rights, Maryland on the record on WYPR. I'm Sheilah Kast. We're talking about students with special needs, and lost hours of specialized education services during the pandemic.
And so we're talking about hundreds of hours of lost services for some students.
LESLIE MARGOLIS: We are. We're talking about hundreds and hundreds of hours of of services for students, for many, many students.
SHEILAH KAST: What is a family's recourse when a student has lost so many hours of special services?
LESLIE MARGOLIS: We know that the school systems all recognize that there are many students who have been harmed by this lack of appropriate services over the past year. They are all developing plans for the provision of compensatory education and recovery services. And I'll define those in a minute. And we know that they will be making offers to families or convening meetings. The State Department of Education has issued guidance and has told districts that they have to look at where students were in terms of their performance before the school building shut down, how students did during the school building closures and how they're doing once they return to a full, normal school attendance. So in looking at what harm students have sustained, then the school system will have to look at how do you make up for that? What kinds of services do you do you make up for? Compensatory education is a remedy under under law that is not pandemic specific. It exists as a remedy for students who have not received the free, appropriate public education that the law guarantees them. And some students may not need compensatory education. Some - we know that some students actually did OK during distance learning. And and some students may want to continue with distance learning. And we know that there are districts that are are looking at creating virtual schools. So that may be an option for some students. And there are other students who still may not be able to return to school because of their own health health conditions or those of family members. We also know the had students been in school in person, they likely would have made more progress than they made sitting at home, staring at computer screens. And so teams also will have to look at recovery services. And that's something that will apply to students with and without disabilities.
SHEILAH KAST: Well, if the settlement calls for one for one service matching hour for hour what was lost, is that even feasible?
LESLIE MARGOLIS: So we don't think that that there will be one for one services for a variety of reasons. And there may be students actually who may need more then than one for one hours because the harm that they sustained might warrant different or more hours. There are two ways you can look at compensatory education. One is that quantitative hour, and one is is more qualitative. How do you make up for the harm that students sustained? And it appears from the guidance the state has issued that they're leaning more towards the qualitative way. So I think given the number of students we're talking about here, given the length of the time period for which many of these students did not get their free, appropriate public education delivered to them, and one for one is is not going to be a feasible way of looking at this.
SHEILAH KAST: What would you say are the lessons learned from the past academic year with regard to students with special needs?
LESLIE MARGOLIS: I think we have learned that … Teachers really matter. That … When students go to school every day, there is a real benefit to people being in the classroom, that for students to be in the classroom. I think that we have learned that there is a place for some students for online instruction, but that you can't replace, that you can't replace the in-person experience, we have seen a lot of regression in a lot of students with disabilities and that in person delivery of services really matters. It really makes a difference. So I think that's one of the big lessons. I think we have certainly learned lessons about equity. We have learned a lot of lessons about digital access. We have learned a lot of lessons about barriers faced by people whose first language is not English. And there are a lot of lessons that we have learned. But at the heart of it, I think what we learned for students with disabilities, physical presence in a school with human beings, with teachers, with service providers really matters.
SHEILAH KAST: I really appreciate your giving us these insights. Thank you.
JESSICA CAMPANILE: Thank you.
SHEILAH KAST: Leslie Margolis is managing attorney at Disability Rights Maryland. She focuses on Education Policy and Litigation. We've been talking about the stark realities of the past school year for students with special needs and what's being done to make up for lost time. I'm Sheilah Kast. Glad you're with us on the record. Join us again tomorrow.
