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Know Your Rights: Balancing Work And Health

A challenging aspect of living with sickle cell disease (SCD) can be finding and keeping a job. People with SCD often miss work because of complications or medical appointments. Recurring pain and fatigue often interfere with work.1

When employers do not understand the impact SCD has on daily life, they may make incorrect and unfair assumptions. However, laws protect job applicants and employees with SCD. Programs offer benefits when symptoms become too severe to work.1

What laws protect employees with sickle cell disease?

A few different laws give you rights when mental or physical disabilities affect your daily activities. By law, SCD is not automatically a disability. However, most people with SCD satisfy the legal requirements for disability rights because normal activities often cause pain or fatigue.2

Even if your symptoms are controlled by medicine or treatment, these laws apply. Very small companies (less than 15 employees) may not have to comply. There are 2 laws that protect employees with SCD, the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA).

Americans with Disabilities Act (ADA)

The ADA prohibits discrimination against people with disabilities in many areas, including employment. It protects employees during application, hiring, promotion, compensation, and training. The law requires employers to provide “reasonable accommodations” for applicants and employees with disabilities. The specific accommodations fall into 3 categories:3-5

  • Changes to the application process
  • Modification of the physical work environment or how a job is performed
  • Enabling equal access to benefits of employment (cafeterias, lounges, etc.)

The ADA also makes it illegal for employers to ask applicants about whether they have a disability or how severe it is. Also, employers must keep any medical information confidential, including requests for reasonable accommodations.3-5

Family and Medical Leave Act (FMLA)

The FMLA allows eligible employees to take up to 12 weeks off per year for family or medical reasons. One qualifying reason to use this is for a serious health condition that makes you unable to work. The time can be taken off:6-9

  • All at once, like for maternity leave or after a major surgery
  • In separate blocks of time for a single reason
  • In a way that reduces your weekly or daily schedule

Serious health conditions most commonly require time off through FMLA when:6-9

  • You need an overnight stay in a hospital
  • You are unable to work for more than 3 days
  • You have periods of disability and treatment

How can I stay healthy while working?

You are not required to tell an employer you have SCD when you apply. It is difficult to know when to inform them of your diagnosis. An informed employer can provide reasonable accommodations during the interview process. However, many people with SCD find that a good time to ask for reasonable accommodations is once you receive a written job offer.10

It may then help to create a personalized support plan with your employer. The plan should cover:

  • Preventive measures to keep you healthy at work
  • Reasonable accommodations to your work environment and schedule
  • When to get emergency help
  • Key contacts

Some accommodations you may want to discuss with your employer include:10

  • A guaranteed parking space near the building
  • Avoiding rush hour by working flexible hours
  • Ensuring access to water and bathroom breaks
  • Permitting hospital and medical appointments as paid time off
  • Adjusting policies for sickness absences
  • Allowing working from home
  • Modifying uniforms to enable warm and comfortable clothing
  • Making sure deadlines are flexible to minimize stress
  • Ensuring the workplace is warm by adjusting the temperature, providing heaters, or placing your workstation in the warmest area

What if I cannot work anymore?

If SCD prevents you from working, you may be eligible to receive Social Security Disability Insurance (SSDI). This program pays monthly benefits if specific requirements are met. Having SCD does not automatically make you eligible.11

During the SSDI application process, you will provide documentation of your SCD diagnosis. They will look at your medical records to determine if you are eligible. Some factors that may make you eligible include:2,12

  • Painful crises requiring injected or IV opioids at least 6 times within the last year
  • Complications of anemia requiring at least 3 hospital stays within the last year
  • Low hemoglobin measurements at least 3 times within the last year

Even if you do not meet these requirements, you may still qualify for disability benefits. Talk to your doctor for help putting together your application. It is important to regularly visit your doctor and undergo treatments. Without regular visits, they may not consider your condition severe enough for SSDI benefits.

What are some additional resources?

Many initiatives help people with disabilities connect to potential employers. These are often agencies within the U.S. Department of Labor. Some of these include:3

  • Workforce Recruitment Program for College Students with Disabilities (WRP)
  • Job Accommodation Network
  • Office of Disability Employment Policy
  • Campaign for Disability Employment

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