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Benefits Crisis

Supplemental Security Income (SSI)

Applying for Supplemental Security Income when your child turns 18 can be a difficult and tedious process especially because Prader-Willi syndrome is not on the Social Security Administration’s (SSA) recognized list of impairments. In our effort to gain SSA recognition, 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 HGH 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 HGH for people with PWS. In addition, in check our “links” section for other HGH related resources.

Other Insurance Denials

If your insurance company or Medicaid has denied a PWS related treatment or service essential to your loved one’s health and development, and you would like to appeal the denial, we have posted in the “Links and Resources” section an excellent resource created by the Health Assistance Partnership (a project of Families USA) which explains the basics of pursuing an appeal.

Medicaid

Each state has its own Medicaid program. For general information on Medicaid please visit our “Links and Resources Page”.

Links and Resources [Click here]

 edited: 04/09/2014

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