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