Preparing for College Life with a Disability

Natalie Sika focused on her physical health to prepare for college.

Since she was very young, 19-year-old Natalie Sika wanted to go to college. That interest deepened in high school when she became passionate about pursuing a career that involved helping others like her with a neuromuscular disease — she has a type of muscular dystrophy.

However, as the time to choose a school approached, Natalie worried about whether she was prepared for college with its sprawling campus life and academic pressures.

“I have very tight muscles, and that affects my ability to walk,” she says.

Paying attention to her physical health helped her prepare for her long-awaited role as a college student.

“Staying consistent with weekly visits to physical therapy helped me maintain my mobility,” she says. “I also began incorporating a two-hour daily workout into my schedule in preparation for going to school with as much strength as possible.”

5 tips to be ready for college with a neuromuscular disease

The prospect of heading off to college can feel stressful for any high school student, but there are additional factors for those with neuromuscular diseases and disabilities.

Those variables range from connecting with the disability services office at a college or university to navigating the emotional shifts that come with a new phase in life. Fortunately, your healthcare team can play a significant role in helping to ease concerns — for students and their families — while fostering a sense of independence.

Depending on their neuromuscular disease, your child’s care team probably consists of a primary care provider, neurologist, and other specialists. In addition to providing treatment, these medical professionals can help individuals take charge of their healthcare by understanding treatment options and daily symptom management. Here are some ways young adults and their families can prepare for what’s next from a health perspective.

1. Tap into the skills of your social worker.

Marie Ritzo recommends connecting with a social worker.

The emotional and mental health effects of such a large change can have a ripple effect across an entire family, says Marie Ritzo, a social worker at Children’s National in Washington, DC. She works with many patients living with neuromuscular disease, as well as their families and caregivers. She’s helped several teens and young adults prepare for college.

“Even though independence is something most young people want desperately, including those with neuromuscular diseases, it can be hard to manage once they get it,” she says. “That’s true for family members as well. Talking through all your feelings can be incredibly helpful during this transition.”

Social workers are trained in active listening, self-care, cultural competence, organization, communication, and empathy. Those skills go a long way toward helping clients with neuromuscular diseases and their families find their way through major transitions, such as preparing for college. Connect with a social worker through your local MDA Care Center or ask for a referral from your primary care provider.

2. Encourage more autonomy.

Many families and kids with neuromuscular diseases build independence over a period of years, starting with age-appropriate tasks that help create a sense of autonomy.

As college time comes closer, it’s a good opportunity for parents and family members to step away even more. That includes allowing teens to take charge of their health by speaking up in medical appointments, having a voice in treatment options, and learning daily living skills.

“Getting prepared the year before college by learning to cook on my own and focusing on working out regularly was very important for me,” Natalie says. “I also used more of the independent skills I acquired through occupational and physical therapy.” For example, she worked on adapting a kitchen setup to make her own meals.

3. Scout the school.

Gather as many details as you can before your child accepts a school offer. Ask your social worker to help develop a list of questions about the school’s environment and resources. These questions might include: What accommodations do classrooms have? What assistance is available for daily activities and attending classes? What is the layout of the dorm room? If the school has a large campus, can they grant additional time to travel between classes? The more information you have, the more prepared you’ll feel, suggests Marie.

You’ll also need to ask about the student health center’s capabilities, including urgent or emergency care facilities and policies, available medical equipment, and what information they might need on file about a student’s special medical needs.

4. Know the area.

If your child will be living on campus, make sure you’re familiar with the emergency medical services or urgent care options in the area.

In addition, look for the state office of vocational rehabilitation. These agencies generally provide supports for education and could be an extra resource or supplement what the college provides.

5. Make medical appointments ahead of time.

Before the first day of classes, schedule your child’s upcoming healthcare appointments. That may include telehealth appointments and in-person visits during school breaks, suggests Kathryn Mosher, MD, a physiatrist at Akron Children’s Hospital in Ohio.

“I don’t recommend switching your care team, even when a young person is attending school in another state,” she says. “Instead, it’s better to have a plan in place where their usual healthcare providers can see them at regular intervals.”

Dr. Mosher advises asking your healthcare providers if telehealth is an option if a non-emergency issue comes up well before a scheduled appointment. She notes that young adults could also schedule telehealth visits in advance if it feels like too long between in-person appointments.

Knowing they will continue to see their regular care team even if they’re living away from home may be reassuring for students, Dr. Mosher notes. It’s also a good idea for students with neuromuscular diseases to have regular follow-ups with their social worker to talk about challenges with adjustments and plans for overcoming those difficulties, adds Marie.

Everybody has a different path

While these tips are geared toward preparing for higher education, many of them are applicable for any post-school transition, whether that means attending a vocational program or simply moving away from home to live independently. Any life transition brings challenges and new emotions. It helps to be prepared with information, resources, and a supportive healthcare team.