Thursday, August 2, 2012

Resources for you......

Each month, Family Voices Indiana provides the families we serve with a summary of the month’s hottest items. If you missed us on Facebook, fear not, here is the latest!

July was named:
National Cleft and Craniofacial Awareness Month. For more information, visit this CDC site.
National Minority Health Awareness Month.
Juvenile Arthritis Awareness Month. The Arthritis Foundation provides information here.

Family Voices:
We rely heavily on the voices of self-advocates and families of individuals with special health care needs to affect change. Additionally professional opinions and expert advice and analyses often further advocacy efforts. Here we recap some of the most commented on and shared blogs and articles posted to our Facebook site.

Visit theAtlantic to learn what this author has learned from her 12-year old son who has multiple disabilities. Then, return to our Facebook page to share what your children have taught you.

Many readers “liked” this blog entry, entitled, “I see you.” We are all guilty of seeing only the outside. It’s a nice reminder that most are doing their best to see us and our children in their entirety. This entry and several others from Special Education Advisor were featured on our page this month.

"Just as Yelp has saved us from many a bad meal, the new Medicaid “Idea Factory” has the potential to protect us from bad health policy decisions. The idea behind the “Idea Factory” is to infuse more transparency into the process and elicit greater public input into important health policy decisions. In my view, nowhere is greater public scrutiny needed more than in the secret lives of Medicaid waivers." Learn how your voice can make a difference here.

Facebook page visitors frequently commented on the many graphics, comics, catch phrases and other quick updates posted in July. Visit the page for a good laugh and for a community of individuals who may be able to identify with you.

Followers enjoyed our posting of The Starfish Story by Loren Eisley. We want to remind you to use your voice—it matters. We encourage families to call on Family Voices to help make a difference for your children.

Training and Learning Opportunities:
Family Voices works to fulfill our mission of empowering families by providing you with educational opportunities and resources. Check our website frequently for learning resources by visiting: month, we shared the following on Facebook.
Many families who might benefit from Medicaid coverage don’t even know their child is eligible, let alone which type of Medicaid is the right type for their situation. Once families begin using Medicaid, they often have lots of questions about how the coverage works, but finding answers can be a major challenge. Attend the All Kinds of Medicaid session, Saturday, August 18, 2012, in Greenfield, IN to get your Medicaid questions answered. Register here. If you can’t attend, look for the online training which will debut after the event.

Do you work with Spanish-speaking families? Let them know about @nichcyespañol for disability resources in Spanish. ¿Ud. trabaja con familias que hablan español? Avíseles de @nichcyespañol para recursos sobre discapacidades en español.

Blossom-Indy provides a framework for young women ages 16-25 with disabilities to promote personal achievement. The Blossom-Indy program matches mentees with young female professionals in the community for this free, two-month program that includes weekly mentoring, social/educational gatherings and a conference in October. More information is available here.

Family Voices also uses our blog and Facebook page to keep Indiana families updated on legislation as well as public and private policies affecting families of children and youth with special health care needs. Some of July’s hot topics were:

“MyVaxIndiana,” an online tool from the Indiana State Department of Health to provide state residents direct access to their immunization records, launched July 23. Users can access their immunization record on the secure website using their date of birth and a personal identification number which must be requested from their healthcare provider or local health department in advance. All records can be downloaded, printed or faxed from the site.

Children and youth with special health care needs often see many different health care providers. This portal is designed to help parents become an active part of their child's Medical Home team. Effective communication, accurate record-keeping, and preparing for medical emergencies are some of the topics covered here.
Family Voices Indiana shared the quarterly report from DDRS.

Requests for Collaboration:
Family Voices always encourages followers to use their voice to affect positive change to our systems, public and private policies. Here’s how you can use your voice.

Are you the female primary caregiver of a child with Down syndrome who has transitioned from school-based to adult-based services within the last 6 months? Would you enjoy contributing to scientific knowledge about the stressfulness of this transition by completing an anonymous 40-minute survey? For questions, please contact Deborah Wimer at 3174467931 or

This survey, which takes just a few minutes to complete, gathers information about actual incidents of abuse as well as attitudes regarding the adequacy and effectiveness, or not, of official responses to such victimization. The results will be shared with those who shape public policy and fund abuse-response programs (legislators), those who investigate and prosecute complaints of abuse (law enforcement), those who promote more effective protection and response systems (nonprofit advocacy groups), and most importantly, people with disabilities and their families.

If you live in Indiana and are a parent of a child on the autism spectrum, please complete this survey. IRCA uses this information to help guide legislation. The information they have gathered through the years has helped with IN's insurance mandate, state definition, first responder training, and medicaid waivers. Your voice is important!

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