Living with RRP
RESOURCES FOR STUDENTS WITH RARE DISEASES AT SCHOOL
Rare Disease Day School Toolkit: This toolkit offers lesson plans, stories, and activities to help explain rare diseases to children and teenagers. It includes resources for different age groups and is available in multiple languages.
Global Genes Educational Advocacy Toolkit: This guide provides tips and strategies for advocating for children with rare diseases in educational settings. It covers specialized education support and ways to work with school staff.
NORD Students for Rare: This program by the National Organization for Rare Disorders unites high school and college students to spread awareness of rare diseases. It offers networking opportunities, educational resources, and leadership experiences.
PARENT RESOURCES FOR RARE DISEASE PATIENTS IN SCHOOL
Center for Parent Information & Resource: Supports, Modifications, and Accommodations: This resource provides detailed information on different types of supports and accommodations that can be made in the classroom. It includes practical tips for parents and educators to ensure that students receive the necessary adaptations.
Selective Mutism Association: Toolkit for Educators: Although focused on selective mutism, this toolkit offers comprehensive strategies for communicating with school personnel, developing 504/IEP plans, and implementing school interventions. It can be adapted for other conditions.
Understood: Common Classroom Accommodations and Modifications: This resource lists common accommodations and modifications that can be discussed with schools. It provides examples and practical advice for implementing these changes.
Inclusive Schools Network: Accommodations in the Classroom – A Guide to Making Them Real: This guide breaks down typical accommodations and provides tools for practical implementation. It’s a valuable resource for teachers and parents working together to support students.
AAP: Supporting Students with ADHD: While focused on ADHD, this resource offers insights into creating effective communication logs and behavior report cards, which can be adapted for other conditions.
There are several tools that schools offer to support students with unique learning needs. Below we have listed a few resources to help you navigate what can be offered.
- Individualized Education Plans (IEPs): Work with school staff to develop an IEP tailored to the student’s specific needs. This plan can include accommodations, modifications, and support services.
- 504 plans: For students who do not qualify for an IEP, a 504 Plan can provide accommodations to ensure they have equal access to education.
- Health care plans: Develop a health care plan with the school nurse to manage the student’s medical needs during school hours.
- Support groups: Connect with local or online support groups for families dealing with rare diseases. These groups can provide emotional support and practical advice.
- Educational workshops: Attend workshops and conferences focused on rare diseases and educational advocacy. These events can offer valuable insights and resources.
- Regular meetings: Schedule regular meetings with teachers, school counselors, and healthcare providers to discuss the student’s progress and any necessary adjustments.
- Awareness campaigns: Organize awareness campaigns at school to educate peers and staff about rare diseases, promoting empathy and understanding.
RESOURCES FOR ADULTS IN THE WORKPLACE
Requesting accommodations for rare diseases at work involves understanding your rights and effectively communicating your needs to your employer. Here’s a step-by-step guide to help you through the process:
- Americans with Disabilities Act: The ADA protects employees with disabilities, including those with rare diseases, from discrimination and ensures they have the right to reasonable accommodations.
- Reasonable accommodations: These are adjustments or modifications that enable you to perform your job duties. They must be feasible and not cause undue hardship to the employer.
- Assess your condition: Understand how your rare disease affects your ability to work. Identify specific tasks or aspects of your job that are challenging.
- Consult your doctor: Get a detailed medical report from your healthcare provider outlining your condition and the accommodations that would help you perform your job effectively.
- Document your needs: Write down the accommodations you need. Be specific about how these adjustments will help you perform your job.
- Use plain language: You don’t need to use legal jargon. Simply explain that you need an adjustment or change at work due to a medical condition.
- Follow company procedures: Check your company’s policy on requesting accommodations. This information is often available through the Human Resources department.
- Submit in writing: While verbal requests are valid, submitting a written request can provide a clear record. Include your medical documentation and a detailed explanation of your needs.
- Collaborate with your employer: Engage in an open dialogue with your employer to discuss your request. Be prepared to discuss alternative accommodations if your initial request is not feasible.
- Be flexible: Understand that the process may involve some negotiation to find a mutually acceptable solution.
- Monitor implementation: Once accommodations are granted, ensure they are implemented correctly and effectively.
- Provide feedback: If the accommodations are not working as expected, communicate with your employer to make necessary adjustments.
- Job Accommodation Network: Offers guidance on requesting and negotiating accommodations.
- Family and Medical Leave Act (FMLA): Provides eligible employees with up to 12 weeks of unpaid leave for serious health conditions.
By understanding your rights and effectively communicating your needs, you can create a supportive work environment that accommodates your rare disease. If you need further assistance, organizations like JAN and the EEOC provide valuable resources and support.
Resources
- Workplace accommodations for the immunocompromised as pandemic wanes
- Chronic Disease and Work: How to Get the Workplace Accommodations You Need
- Employees’ Practical Guide to Requesting and Negotiating Reasonable Accommodation Under the Americans with Disabilities Act
- What you need to know about workplace accommodations
- Family and Medical Leave Act
- Working Rare: Employment Considerations for People Living with Rare Diseases
- Navigating SSDI for Rare Diseases: Your Guide to Benefits
- Work participation in adults with rare genetic diseases – a scoping review
