Adults with spinal muscular atrophy (SMA) have the same career goals as other adults. Symptoms of SMA can sometimes get in the way of working. However, people with SMA still have successful careers doing many of the same jobs as adults without SMA.
Under the Americans with Disabilities Act (ADA), employers must provide accommodations for people with SMA in the workplace. This can include changing the physical workspace to help people with SMA to do their job. Talk to your employer early about what you will need to succeed.
What types of careers do adults with SMA have?
Adults with SMA can have many of the same careers as other adults. Many people with SMA have very successful and fulfilling careers. Even if you have low physical mobility or other limitations, there are many suitable jobs.1
However, having a chronic illness like SMA can make working harder. You may have to spend a lot of time at doctor’s appointments, taking care of your symptoms, and performing other daily activities related to SMA. This can limit your working hours or working conditions.2
Things you may want to consider when looking for a job include:2
- Where you will work every day (such as at home or in an office)
- How you will commute to work every day
- The flexibility of the work schedule
- Whether your employer is covered by the ADA
What is the ADA?
The ADA makes it illegal for employers to discriminate against people with disabilities. Employers cannot consider your disability during the hiring process, promotion, payment, or other parts of the job. The law applies to employers with 15 or more employees.3
The ADA also requires employers to provide “reasonable accommodations” to help people with disabilities perform their job. These accommodations include:3
- Making the workplace more accessible
- Modifying work schedules
- Getting special equipment or devices
ADA rules also apply to public transportation. This means public transportation systems must have accessible features, such as lifts, ramps, and priority seating. These are especially helpful for people using public transportation to commute to work.4
Certain laws encourage employers to accommodate people with disabilities. For example, tax incentives provide credit to small businesses for the cost of reasonable accommodations.3
An employer does not have to provide a reasonable accommodation if it imposes an “undue hardship.” This refers to an action that is too hard or expensive for the employer’s resources. Talk to your employer, a social worker, or an SMA advocacy group if you are unsure if an accommodation you need is reasonable.3
What are possible workplace accommodations for people with SMA?
Accommodations vary depending on the needs of each person. Not all people with SMA need the same accommodations. As your needs change over time, your job accommodations may also change. Talk to an occupational therapist or a social worker about what workplace accommodations are right for you.2,5
Examples of workplace accommodations that may help people with SMA include:2,5
- More flexibility in working from home or switching workdays
- Having frequent stretching breaks
- Altered desk heights or computer setup to accommodate wheelchair access
- Having a speech-to-text program to reduce typing fatigue
- Having a personal care assistant to help with daily tasks
- Making sure you have an accessible bathroom
- Ensuring you have easy access to meeting rooms, break rooms, and other amenities
It can sometimes be intimidating to ask your employer for accommodations. But remember that your employer wants to help you do your job well. Communicate with them openly and often about what will help you succeed at work.
You can either talk directly to your supervisor or boss, or through a human resources office. Some employers have an “employee assistance program” or an “accessibility team” that helps address issues affecting job performance. If your employer does not have these, there are other resources where you can find help. They include:2,6
- U.S. Department of Labor’s Office of Disability
- Job Accommodation Network
- Your state government’s rehabilitation commission
- SMA advocacy groups