Monday, October 1, 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, here is the latest!

Awareness:
World Cerebral Palsy Awareness Day, September 4. Read what individuals with CP say will make their life more independent or rewarding.

Fetal Alcohol Spectrum Disorders Day, September 9. Learn more from the CDC.

National Get Ready Day, September 18.  Use these materials to prepare yourself.

Special Olympics’ Eunice Kennedy Shriver Day, September 22.

National Voter Registration Day, September 25. Register by the deadline, October 9.

Talk about Epilepsy Weekend. For information about this diagnosis, read here.

Invisible Illness Awareness Week. Read this woman’s testimony about living with an invisible illness.

Mitochondrial Awareness Week. Learn more about mitochondrial disease here.

Car Seat Safety Week. Learn more about conventional and adaptive car seats here.

Sickle Cell Awareness Month. The CDC shares information about sickle cell disease on their site.

National Infant Mortality Month. To learn more about this cause, visit Healthy from the Start.

Craniofacial Acceptance Month. There is a heart behind every face. Read more 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.
How did you deal with your child’s diagnosis? Read one mom’s story here.
In case you missed it, here’s the full transcript of Talk of the Naiton’s conversation about the challenges that siblings of children with intellectual disabilities face.
Read this mom’s take on why motherhood IS the most important job in the world when parenting a child with special needs.
This special educator uses his voice to advocate for responsive, inspired, and collaborative partnerships with parents. Read his promises here. We included lots of information about IEPs, special education, and related topics on September’s Facebook page.
 

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: http://www.fvindiana.org/trainingThis month, we shared the following on Facebook.
Learn more about effectively using assistive technology to communicate and watch Elle’s story.
Does your family need financial assistance in order to make adaptive driving devices a reality for your child with special health care needs? If so, check this out!
Children develop skills, or "milestones," at their own pace. How is your child doing? You only need 10-20 minutes to check with the Ages & Stages Questionnaires®. Your results will help you see if your child's developmental progress is on time and alert you to concerns that you can talk over with your health care provider. Let us know if you need help accessing screening and/or intervention.

Cooler weather is arriving. Energy Assistance Program (EAP) is an Indiana program designed to assist low-income customers with winter heating bills. Be sure to check to see what application dates are in your area.
Protect your family from the flu and be an informed consumer! Here’s information about vaccines.
The Indiana Secondary Transition Resource Center (INSTRC), at the Institute’s Center on Community Living and Careers, has created a new, web-based interactive curriculum for Indiana high school teens who are supporting students with disabilities as peer mentors or peer tutors.
 
 

Newsworthy:
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 September’s hot topics were:
Waivers! Waivers and more waivers! Check out our website and blog for the latest updates.
Check out DDRS Health Homes Initiative and other updates on our blog.
All of us have a role to play in preventing suicide. The National Action Alliance for Suicide Prevention along with the U.S. Surgeon General presented the 2012 National Strategy for Suicide Prevention in September. Do you know your role? Find out how you can help.
Indiana's newborn screening law requires that every baby born in Indiana be tested for 47 conditions (including sickle cell anemia, cystic fibrosis, hearing loss, and critical congenital heart disease). Newborn screening must be done before the baby leaves the hospital. Babies born at home must have newborn screening within one week of birth. Learn more about this and the newborn hearing screenings via multiple posts on September’s page.

 

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.
VOTE! Elections are Tuesday, November 6, and there is a lot at stake for all Americans this year.  To learn more about disability issues, visit the National Forum on Disability Issues.

Riley will be hosting a Focus Group to discuss ways to increase family involvement in the PICU. We are scheduling this group for Wednesday evening October 10, 2012 from 6:30 to 7:30 pm. For more information or to attend, visit our Facebook page or email dcohen@iuhealth.org.

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