MPS I and the Workplace

For Working Parents of an MPS I Child

If your child has MPS I, you may find yourself struggling to meet the demands of the workplace while still giving your child the care and attention he or she may need. You may need time off to take your child for medical appointments or treatment. You may also need to send them to a special daycare or school. Fortunately, there are programs to help working parents cope.

In the US, for example, the Family and Medical Leave Act (FMLA) offers eligible employees of a covered employer up to 12 weeks of unpaid leave per year to care for an immediate family member (a child, parent, or spouse) who has a serious health condition. Generally when you return from family leave, your employer must give you back your job, or an equivalent job with the same pay and benefits. Your employer cannot fire you or take away your benefits just because you took family leave. To learn more about the FMLA please visit the US Department of Labor website.

Contact your country’s MPS society (see Support Groups in the Resources and Support section) to find out about family medical leave laws in your area.

You should also consult with your company’s human resources department to review any employee assistance programs and services that may be offered. These programs may offer counseling, childcare, or other insurance plan support that could offer additional help and information for you.

For Individuals with MPS I

Some individuals with less severe forms of MPS I may be performing a variety of different jobs. Many countries have laws that protect the rights of people with disabilities and make it illegal for employers to discriminate against qualified workers who have a disability. These laws may also provide guidance on accommodations that an employer might make in order to allow you to perform your job. Contact your country’s MPS society (see Support Groups in the Resources and Support section) to find out about disability and employment laws in your area.

If you are considering work, a career counselor, family, and friends can help you explore ideas for jobs that you might enjoy and that fit your strengths and interests.