MD Advocates Offer Advice for Students With Neuromuscular Disorders Amid COVID-19

The importance of communication and self-care for people with muscular dystrophy and other neuromuscular diseases who are pursuing their education during the COVID-19 pandemic was highlighted in a Facebook Live event hosted by the Muscular Dystrophy Association (MDA).

The event featured Christopher Rosa, PhD, former MDA board member and current assistant vice chancellor for student inclusion initiatives at The City University of New York (CUNY), and Justin Moy, an alumnus MDA National Ambassador currently studying at Worcester Polytechnic Institute (WPI).

Rosa and Moy discussed the challenges that the pandemic has placed on people with disabilities, and on their families and caretakers, specifically with regard to higher education.

“I don’t want to sugarcoat it,” Rosa said. “Parents and caregivers in particular have been thrust in a situation where they have to serve as kids’ academic coaches, as their occupational therapist, as their physical therapist, as their assistive technology specialist, as their paraprofessionals — all the resources that they would have gotten by virtue of being physically present at their schools. So, it’s been very hard on the kids themselves, on the people who support their opportunities, and it’s been hard on teachers too.”

To handle such difficulties, he stressed the importance of self-care for the patients and for those around them. Strategies include everything from professional counseling and other mental health services to giving people space to rest and recuperate, which is especially important when the demands of the pandemic often force people into close proximity for a long time.

Moy said that having a shared calendar — marking who is doing what and when — can also help to ease interpersonal conflict in a household.

With the ongoing pandemic, some institutions, including CUNY, have elected to have classes fully online, while others, such as WPI, are having some in-person instruction. For people with disabilities, who may be at greatest risk of serious complications from COVID-19 infection, deciding how to pursue their education requires weighing out the relative risks and benefits.

“The good news is that, as people with neuromuscular disabilities, each and every day we have a great deal of experience of assessing and managing risk,” Rosa said. “The key is just getting the most information you can about your campus reopening plans.”

Moy, who has chosen to be on campus this fall, added: “An important part [informing the decision] for me was the communication from the university and knowing that their intent was sincere and that they were working their hardest to ensure that guidelines were followed and safety protocols were put into place.”

Regardless of the plan a student decides to pursue, Rosa and Moy stressed the importance of communication to make sure that appropriate accommodations are made and needs are being met.

“Working with your accessibility office, working with residential services, getting that plan down as soon as possible was so important,” said Moy, who recommended an acronym, A.C.T., to help in making these plans: A — ask for help from disability services or similar on-campus support; C — communicate directly with professors; T — talk with an academic advisor.

Moy added that a fourth letter — F, for following up — is also important, even though it does not fit the acronym.

“The key is being proactive about reaching out,” Rosa said. “Now more than ever before, it’s important to schedule regular opportunities to interact with faculty and key student resources. It’s a little old school, but I know faculty very often just appreciate a phone call.”

Rosa also stressed the importance of leveraging individualized education plans (IEPs) and similar programs to ensure that people with disabilities get the accommodations they need.

“The context has changed, but the goals [of the IEP] have not,” he said. “Parents have every right, on behalf of their kids, to leverage [IEPs] to make sure that they get access and opportunity to the services they need.”

In addition, Rosa said that schools are required to make accommodations for people who require personal assistance while on-campus. However, the practicalities of getting such help on campus may be particularly complicated during the COVID-19 outbreak. As such, again, communication with the school in question is important.

“It’s readily achievable, but it does take a lot of advanced planning,” Rosa said, noting the importance of a backup plan should help become suddenly unavailable (e.g., an exposure necessitating quarantine). 

Overall, the pandemic will undoubtedly pose new obstacles for education — for everyone, but especially for people who already experience high barriers to accessibility, Rosa added. Yet, communication, cooperation, and self-care can help overcome such challenges.

“From my experience working with students and faculty this past spring,” Rosa said, “there was a pervasive sense that we’re all in this together and that it might be a bumpy ride, but, one way or the other, we’re all gonna put our heads together and devise solutions that allow students to continue learning.”