PPMD’s Rachel Schrader and Mena Scavina recently moderated a fantastic Connect with the Experts: Navigating the College Campus with Duchenne webinar. They led a dynamic conversation around what the college experience may look like for people living with Duchenne and how to plan for success.

We want to thank the following panelists for their participation:

• Adith Thummalapalli, University of Maryland Graduate, PAAC Member
• Kevin Bors, Princeton University Graduate
• Gloria Bors, Parent
• Maria McDonnell, Parent, College Instructor

Webinar Recording:

New Personal Care Assistant (PCA) Interview Checklist

One of the main topics discussed on this webinar was finding and hiring Patient Care Assistants (PCAs) to assist students living with Duchenne while on campus. Often times families have difficulty ensuring they are hiring the right people. For this reason, PPMD has developed a customizable checklist for interviewing prospective caretakers.

Download Checklist >

Frequently Asked Questions (FAQs):

Q: Can you share your experiences navigating disability services on campus?

A: When I first toured University of Maryland, I had some concerns about the physical accessibility on campus. When I became a student, I realized there was no centralized accessibility or disability office. Instead, there are services under different campus departments such as resident life, academic accommodations, transportation, etc. I noticed this was really disjointed and segmented and I wondered why there was not a centralized office. I wrote a report outlining all of the concerns I have noticed and it caught the attention of the office of the president. There is a president’s commission of disability issues, which is a group of students, faculty, staff, and alumni, with an interest in disability right work. I got involved with that group, and through this we are pushing to create a centralized office that can direct anyone to services and support whether it be academic, housing, visitor services, etc. We are also working on hiring a full-time ADA coordinator as part of this office. – Adith Thummalapalli

A: I teach at a really small school, and we did not have a great system in place because there were so few students with disabilities. When my son started school in 2018, it was really difficult. My son had previously gone to school without a 1:1 PCA, and instead managed by asking for help of his peers when needed. When he was started college, we figured the experience would be similar, but I was shocked to find that the school felt it was not appropriate to rely on other students for his navigation around campus. I have noticed some improvements with time as we have more diversity with students with disabilities. I think parents whose child has not started school yet, I think a lot of bigger schools have better systems in place and smaller schools you may be “breaking the ground” for them. – Maria McDonnell

A: Both Princeton and Villanova had centralized offices of disability, which was helpful to have one centralized location. – Gloria Bors

Q: What sources of funding did you receive for services?

A: Princeton’s primary funding source, the office of vocational rehab (OVR) was great with funding for housing and facilities. Although they typically do not pay for assistance over the summer, when my son was doing a summer internship Princeton stepped up and covered it. Villanova had a very accessible campus and was easier to navigate than Princeton, which is a very old school. Villanova did not offer the same funding as Princeton, but they do have an organization called LEVEL that recruits students to help other students with disabilities such as taking notes and assisting on campus. – Gloria Bors 

A: The office of vocational rehab, which is called different things in different states, is a great resource. Here in Maryland it is called DORS and they helped assist with some of my tuition and room and board and I advise you tap into that resource as early as possible. – Adith Thummalapalli

Q: What was your college experience like – making friends, going to social events, getting to class, and how did you navigate hiring an aide or PCA?

A: I had a really great time going away to college. I think it gave me a chance to grow as a person. I lived in the dorms all four years and one of the accommodations that the University of Maryland was able to provide was a single room with an attached bathroom. They provided both a bed for myself and a PCA. I only had overnight care from around 8pm when they helped me with my nightly routine, and then stayed until the morning. During the day I was pretty self-reliant and I learned there was a lot of people out there willing to help. Classmates and friends helped complete tasks like opening doors, pressing elevator buttons, and carrying my dining tray to a table. I made friends just like how others do – I hung out with people in my dorm and went to social activities on campus. I made it a personal goal to talk to at least three people at each social event or in class, and it was a really easy way to find people with similar interests and meet friends. It was a challenge I set for myself and I accomplished this. – Adith Thummalapalli 

A: My kids did not have overnight PCAs, and instead they were with them throughout the day. – Gloria Bors

A: I had a single dorm with an attached bathroom that was new, so accessibility was good. I had a PCA with me throughout the day who would help me get to bed and then would come back in the morning. My PCAs would walk with me to class and open doors. I also got involved with the campus ministry and made a lot of friends through that. – Kevin Bors 

Q: How were you able to find and hire PCAs?

A: For my first two years of college, I had to find and hire PCAs on my own using services such as care.com. This was because I wasn’t yet eligible for state services such as Medicaid. Once Medicaid kicked in, I was able to hire through an agency which was much more helpful. This was helpful because they would find qualified people and would have backups. I suggest learning what services your state offers such as SSI, SSTI, Medicaid, and Medicare as early as possible. It is never too early to start researching these services, even in high school. – Adith Thummalapalli

A: We worked with an agency right away, and my husband and I served as a backup because we lived so close. – Gloria Bors

Q: How does the neuromuscular care team help support patients and families as they plan to go to college?

A: One size doesn’t fit all and all of this is individualized. Most clinics have a social worker, and I would ask them for their assistance. From my experience, we have a great transition clinic and they can outline things that may be helpful including finances, PCAs, HIPAA concerns at college, and other important tools. Visiting the school is so important; you may think you want to go to a certain school, but once you get there it may not be a good fit. It is important to investigate whether the disability services are helpful, what support is available, and what the campus layout looks like. It is also helpful to talk to others who have attended schools you may be interested in. – Dr. Mena Scavina 

Q: When did you start planning for college and what led to the decision to commute or live on campus?

A: My son living with Duchenne is my youngest, so I had college experience with my two older children. My son also looked at another school a little further away, but he decided he wanted to commute to college from home. We spoke about the importance of establishing independence, but respected that he was not comfortable living on campus. When he is on campus, he is completely autonomous and his friends help him throughout the day. High school was a little rough regarding the social aspect, but in college he blossomed. He made so many friends, and I think other students in college are more inclusive and go out of their way. He is in a fraternity, and college overall has been a great experience academically and socially and it is where he belongs. – Maria McDonnell

A: I thought it was valuable for them to live away from home, and none of my kids had the desire to commute from home. We started planning in the spring before the school year, even before they were admitted. We spoke to different schools and learned some campuses have amazing, accessible facilities. I am a firm believer that you are happiest where you fit. The most challenging part is working with a PCA agency and finding all the hours and putting all the pieces together. I suggest starting with this part in the summer. Once they were admitted, we met with the office of disability and they were really helpful to ensure emergency plans are in place. – Gloria Bors

Q: What does life post-college look like?

A: I graduated recently in 2020. Recently I was fortunate enough to receive a job offer with EPIC, the electronic medical record company. I am now preparing to move to Wisconsin to accept that job. With the pandemic, things were a little difficult in terms of finding a job. I applied to as many places as I could, and it did take longer than I would have liked, but I filled my time with volunteer work.

A: After graduating I worked in research for Princeton remotely for a few years. Then, I started working for my church remotely. I do work for their website. – Kevin Bors

Q: How can students with Duchenne partner with their professors to be as successful as possible?

A: As a parent, there were times when I wanted to reach out to his professors and explain things. I think for a lot of us parents who have been caregivers for our children, it is hard to “switch gears” and realize our sons are adults now. As a professor, I would never hear from any of my student’s parents. It was important for me to step back and allow my son to advocate for himself. If you have any type of disability, you will receive a list of accommodations you will present to professors. In our experience, whether he should have accommodations such as a note taker was a grey area. He did have access to a testing center if he needed additional time on tests. My son takes a slightly lower course load and occasionally asks for extensions on papers and projects. I suggest you do what is best for you and be open with your professors for any needs or support. – Maria McDonnell

Q: What are some alternatives to typing if difficult?

A: I tried to type as much as possible, but for longer papers and assignments I used Dragon Speech Recognition. – Adith Thummalapalli

Q: What are your final thoughts and advice for those thinking about going to college?

A: This process is just a matter of knowing yourself and what your own needs are. Everyone’s experience is going to be unique and different with some similarities when it comes to specific services. Sometimes colleges and universities will stand in our ways, but it us up to us and our families to advocate and figure out what we need to be successful. – Adith Thummalapalli

A: Some of the issues you may run into are bad weather, PCAs calling in sick, equipment malfunction, and be prepared for these. Get to know your campus public safety so they are there to help you in a pinch. My final advice is to make friends, because longtime friendships are what makes college worthwhile. – Gloria Bors

A: I have had some patients who have gone away to college and did not like the experience. In these situations, they chose to stop and pivot, and maybe take a semester off and look at another school that may be a better fit. Give yourself that leeway if you are not comfortable or feel it is not the best place for you to learn and thrive. – Dr. Mena Scavina

A: Last thoughts as an instructor, please reach out to your instructors. Most instructors are happy to talk to you and get to know you. As a parent, allow you kid to take the lead. My son had different thoughts about what his college experience should look like. As special needs parents we are used to caregiving and advocating, and when are kids are adults, it is hard to shut that off. Take that step back and let your adult children figure it out, and whatever they are comfortable with and what works for them is best. College is supposed to be fun – a time to make friends and get involved. I had a student this year with Duchenne who just completed his first year and he said he was so scared at first, but he is so glad he did it and he said that anyone can do it. – Maria McDonnell 

Additional Resources

• MDA Article: Caregiving: Choosing with Care
• PPMD’s Community Resource Center: College Resources