Supplemental Security Income (SSI)

Applying for Supplemental Security Income when your child turns 18 is an important step to take. The Social Security Administration’s website has many forms you can download, print and fill out. Available forms include applications for disability benefits and child’s insurance benefits, enrolling in Medicare, appealing a medical decision and requesting a waiver on an overpayment. These forms are available at SSA Forms. Of course, you can also apply for benefits and take care of other Social Security business online. For more information, read the Guide to Disability Benefits or call 1-800-772-1213 (TTY: 1-800-325-0778) or your local Social Security office.

In addition we have learned how to better prepare SSI applications especially for people with PWS. The resources we developed are linked here for you to review and download. We encourage you to use these materials in preparing an initial application or appeal. If you need additional assistance with an application for appeal, please contact us.

Growth Hormone Therapy (GHT) Denials
Many children (and some adults) with PWS are experiencing beneficial results from taking Human Growth Hormone (HGH). However, insurance companies frequently deny GHT to people with PWS. If this happens, please contact us. We can provide you with a support letter and the latest scientific research on the benefits of GHT for people with PWS. We can provide a support letter for an appeal.

Other Insurance Denials
If an insurance company or Medicaid has denied a PWS related treatment or service essential to your loved one’s health and development, and you decide to appeal contact us. In many cases we can provide a support letter and other information to support your appeal.

Each state has its own Medicaid program. For general information on Medicaid please visit