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Share Your Story:

Help Expand Disability Services for PWS

Calling All PWS Families!

We need your voice to help make a difference! Currently, only 14 states recognize PWS as an intellectual/developmental disability (IDD), which limits access to crucial services and supports for individuals with PWS.

Your personal story could help change that.

We invite you to take part in an important advocacy effort by sharing your experience with qualifying for Medicaid waiver programs and other state-funded IDD services. By filling out the form below, you’ll contribute to our collective efforts to improve access to critical services for individuals with PWS across the country.

Your story has the power to make an impact! Together, we can push for change for the PWS community in your state and beyond.

Thank you for your support!

Share Your Experiences Accessing Disability Services to Help Advocate for PWS Community

This story-gathering tool will help inform advocacy efforts to increase access to care and services for the PWS community in your state. Thank you for sharing your story!

I am a(n):*
Name of individual with PWS:*
Name of caregiver filling out the form (if applicable):
What is your email address?*
What state do you live in?*
Age of individual with PWS:*
About the individual with PWS (hobbies, interests, personality, etc.):*
Have you ever been denied access to Medicaid waiver programs or told not to apply because you would not qualify?*
- Yes
- No
If yes, please describe your experience being denied or told not to apply in further detail.
Have you faced difficulties accessing/qualifying for disability benefits through Medicaid waiver programs due to IQ requirements?*
- Yes
- No
If yes, please describe your experience with IQ requirements.
Please describe your journey and experience in accessing or qualifying for disability benefits in your state (please write at least one paragraph).*
Are you interested in participating in advocacy efforts in your state?*
- Yes
- No
Do you consent to the use of the information and photos you provided on this form as part of advocacy efforts in your state?*
- I consent to the use of the information and photos provided in this form as part of advocacy efforts in my state.
- I do not consent.
Photo Submission Opportunity
Media Consent
I Agree to PWSA | USA's Media Consent Policy
By clicking here, I hereby authorize and grant my full permission to Prader-Willi Syndrome Association | USA (PWSA | USA) to collect, use and store any of my personal information, including, without limitation, my likeness, image, voice, and/or statements (“the personal information”) for posting on the PWSA | USA website or social media pages, to use for printed publications or for other purposes that may convey my identity (names may be used unless otherwise specified), diagnosis and other information.

I acknowledge that:

1. I have the authority to grant this authorization and I hereby waive any rights of privacy and other cognizable claims which I may have in connection with the use of the personal information on the PWSA | USA website or social media pages, in printed or other publications, or for other purposes. I understand that this consent is intended to release from liability all personnel of PWSA | USA and is valid unless and until revoked as described below.
2. I understand that the personal information provided to PWSA | USA may reveal sensitive health information about me, including health conditions, diagnosis, and treatment.
3. I understand that any personal information I share with PWSA | USA may be included in various media, including, without limitation, print and digital media, audio and video recordings, photographs, and written statements.
4. I agree that PWSA | USA shall own worldwide copyright and other intellectual property rights in any work product incorporating the personal information. Under this authorization, I assign and transfer to PWSA | USA full worldwide right, title, interest in and ownership of all copyright and other intellectual property rights in such work product without payment of any fees, royalties or other compensation.
5. I understand that I may revoke this authorization at any time by sending an email to PWSA | USA at events@pwsausa.org which identifies the information covered by the revocation. Upon receipt of this notice, PWSA | USA will endeavor to stop using this information within a reasonable time after receipt of such notice.
6. I acknowledge that I am signing this authorization voluntarily and that I am not required to sign this authorization as a condition of eligibility to receive any benefits or services from PWSA | USA. I understand that I may refuse to sign this form.
7. If I have any questions about my privacy rights under this authorization, I understand I may contact PWSA | USA by sending an email to: events@pwsausa.org . The terms of this authorization are not linked to any other agreement, nor to the term of any other agreement, and the terms of this authorization will survive until a request for revocation is submitted as described above.