Insurance & Social Security

Local, Regional and National Financial Aid as well as Personal Care may be available. Please check:

          - County Board of Developmental Disabilities

          - State Board of Developmental Disabilities

          - National Social Security Disability 

Important information for Lesch-Nyhan Families regarding Social Security:

         - LNS is on the list of diseases for Compassionate Allowances, this means that you will be eligible for immediate approval rather than waiting for typical response times. (for example, this might mean 3 weeks rather than the normal 6 months)

         - Until the child reaches the age of 18, income is based on family rather than individual.

Insurance Issues & Social Security

Medicaid Waivers are state-run programs that use federal and state funds to pay for health care for individuals with certain health conditions. Each state has different Waivers with different eligibility requirements or services. Two Medicaid statutes are currently waivered: 1915 and 1115.

To find out your state’s Waiver programs go to

Social Security and Social Security Disability Income

The official website of the Social Security Administration can provide you with a wealth of information relations to 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

Insurance Reimbursement

If your insurance company has denied your claim for certain treatment, including wound care coverage, the following sample letter can be used and edited and sent to an insurance company or your state insurance commissioner. These letters are only intended as an example. They were originally developed for children affected with a different disease, so please read and change the information as needed.

Sample Letters

Family and Medical Leave Act (FMLA)

The following information is presented as a guideline. Individual state laws may affect your eligibility and rights. Please consult the Department of Labor in your state for more information.


You are entitled to take up to 12 weeks of unpaid leave for three reasons:

  • The birth or adoption of a child

  • To care for a child, spouse or parent with a serious health condition, and

  • If you have a serious health condition

A serious health condition may include chronic conditions that require periodic and continuing treatments, such as Lesch-Nyhan Syndrome.

While on leave, your employer must maintain your benefits, but you must continue to pay your portion.

You retain the right to return to the same or equivalent position, pay and benefits upon returning from leave.


You are “eligible” to take FMLA leave if:

  • You have worked for the same employer for at least 12 months and have worked at least 1,250 hours in the past year, and

  • Your employer employs 50 or more employees within 75 miles of your worksite, and

  • You provide 30 day advance notice to your employer for foreseeable events.

For more information about the Family and Medical Leave Act go to