Government Affairs & Legal Aid

US Capitol Building
[photo credit: Wikipedia]

debra of America’s Government Affairs program seeks to educate legislators on Capitol Hill and in state capitals around the country about the importance of how laws, regulations, and policies impact those living with EB.  Through meeting with legislators, engaging legislative staff, and sharing information with other rare disease groups that share similar policy goals, progress is being made in promoting EB awareness and support for EB families.

Through our Legal Aid program, we want to help you, and your families best advocate for yourself when any challenging issues arise.  For example, has your health insurance denied you coverage, or your local education system not provided your child the assistance he/she needs to experience an appropriate education? See below for information to help develop strategies that will allow you to get the services your family needs and deserves.

Common Issues of Importance

Educational Rights

It is important for EB families to understand what educational rights they can rely upon for their betterment of their children’s formal education. debra of America describes the right for each child with EB to receive a free and appropriate public education. Click here for more information on your child’s educational rights.

Insurance Reimbursement

If you experience a denial of health insurance claim for medical services or wound care supplies from your private insurance policy, the following information can help address steps on how to appeal such a denial. Click here for more information on insurance reimbursement.

Government-sponsored Health Insurance: Medicaid

Medicaid is a federal and state government partnership health insurance program for certain eligible individuals based on health conditions or income thresholds.  Participants receive Medicaid as either their primary or secondary health insurance in conjunction with a private primary policy, and each state administers its own unique eligibility and benefits standards.  Some states offer Medicaid to eligible participants through Waivers sometimes named the Katie Beckett Waivers and the Section 1915 (or Section 1115) Waivers. To review your state’s waiver program, check out the State Resources website through the Centers for Medicare and Medicaid Services.

Social Security and Social Security Disability Income

The Social Security Administration provides information about Social Security Disability Income (SSDI) such as:

  • How to start and,
  • The Disability Planner explains how to qualify for SSDI and the benefits you will receive
  • Help you find your local Social Security Office

To find out more information about Social Security go to

To find out more information about Social Security Disability Income go to

Family and Medical Leave Act (FMLA)

Federal law entitles eligible employees of certain employers to take unpaid leave to care for a serious health condition (like EB) of a family member without interruption of health insurance coverage. Specific details and guidelines are explained at the U.S. Department of Labor’s website.

For more information, please contact Joe Murray, Director of Government Affairs & Legal Aid, at joe [at] debra [dot] org or 212 868-1573 X125


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