Skip to main content


Showing posts from July 17, 2011

Please Share Your Experience and Advocacy Stories with the Genetic Alliance

This week, Genetic Alliance, in partnership with Family Voices and The Arc launched an online questionnaire that allows experienced family advocates to share their advocacy journey, including how they developed certain skills and created the opportunities to influence systems. We will turn those experiences into stories that will inspire and encourage others to take action to improve lives and enrich communities. By collecting these stories into a publication and identifying the common themes, readers, who will be family members or individuals recently diagnosed with a genetic condition, chronic disease, disability and/or special health need, will begin to understand how to influence their own path in advocacy. This online questionnaire will close on Friday, August 19 .Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can

Medicaid Waivers Indiana (Study Committee Public Meeting)

Many FV Indiana members were very involved during the legislative session in sharing their perspective on proposed changes and limits to Medicaid Waivers in Indiana. As you recall the legislature directed a Summer Study Committee to consider the issue. The legislative committee calender, , has posted that the Committee charged with this issues will meet on Tuesday August 23, 2011 at 10:00 AM in the Indiana Senate Chambers. We know many of you are interested in attending. Please let us know if you are able to attend this public meeting, by sending an email to

Medicaid and Children with Special Health Care Needs: White House Meeting

Our friends and partners at the Catalyst Center created this video about the White House meeting FV Indiana board member, Rylin Rodgers and her daughter Laura were able to participate in last week. Please continue to share your thoughts about the importance of Medicaid with your Senators and Representative. You can find their contact information online using the Senate Directory and the House Directory . All members can be reached by calling the switch board, 202-224-312.