You are an advocate. Whether it’s talking to your doctor or educating your child’s school about bleeding disorders, advocacy can and does take place outside of state capitols and in your everyday life. Here are some tools and resources to help guide your advocacy in various “real life” situations:
- At School
- At Work
- For Insurance Coverage
- In the Emergency Room
School
Starting school is a milestone for any child, especially a child with a bleeding disorder. There are many concerns around your child’s safety and ability to treat a bleed should one occur while in school. It is important to be prepared to discuss your child’s situation with his/her school immediately. As a parent you have the right to be involved in the decision making process that affects your child’s education, which includes developing a process to address your child’s bleeding disorder.
Resources
U.S. Department of Education: Frequently Asked Questions About Section 504
US Department of Education: Individuals with Disabilities Education Act (IDEA)
National Hemophilia Foundation - Steps for Living
National Disability Rights Network
Council of Parent Attorneys and Advocates, Inc
Work
Improvements in the treatment of bleeding disorders have allowed the community the ability to remain in the workforce like any other American. However, it is still possible to encounter challenges in the workforce for various reasons. Federal Civil Rights law prohibits discrimination in employment based on a factors including age, disability, ethnic origin, gender, race, religion or veteran status. In addition, many states have adopted civil rights laws that provide additional protections against discrimination in hiring or employment, based on additional factors, such as marital status, gender identity, or mental disability. Below we have listed some resources that may help assist you in understanding your rights and protections under the law.
Resources
National Conference of State Legislatures (NCSL) , Labor and Employment
U.S. Department of Justice, Americans with Disabilities Act
U.S. Equal Employment Opportunity Commission -Employees and Job Applicants
Laws Enforced by the Equal Employment Opportunity Commission
U.S. Department of Labor, Equal Employment Opportunity
Insurance
It is critical to educate yourself about your health insurance coverage. The Affordable Care Act has added some consumer protections to your health insurance. However, it is important to note the type of policy you have and your levels of coverage. See below for additional resources.
Resources
National Association of Insurance Commissioners - Get Smart about insurance
National Hemophilia Foundation – Personal Health Insurance Toolkit
Healthcare.gov: Rights & Protections
Emergency Room
Appropriate care in the ER can be challenging for people with bleeding disorders. As a rare and highly specialized condition many health care providers are not experienced in treating a bleeding disorder. This can be compounded in an emergency situation. Below are some resources to help you navigate an emergency room situation.
Resources
Emergency Medical Treatment & Labor Act (EMTALA)
