Wednesday, February 29, 2012

Resources for you.....



Each month, Family Voices Indiana will provide 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! If you'd like more resources like this, please "like" us on FB!

Awareness:

February hosted multiple awareness and commemorative days, including:

President’s Day. We shared an article featuring presidents with disabilities, ranging from hearing to mobility impairments, which is available here: http://www.blazesports.org/2012/02/disability-wasnt-inability-for-these-presidents/.

Rare Disease Day. Approximately 1 in 10 people are affected by rare diseases. Please browse our Facebook page to learn more about some of the rare diseases and disorders featured by Family Voices in February.

Heart Truth National Wear Red Day. For more information about heart health, be sure to visit http://www.nhlbi.nih.gov/educational/hearttruth/events/wear-red.htm

Feeding Tube Awareness Week. To learn practical information about tube feeding, please visit www.feedingtubeawareness.org.

Burn Awareness Week. For more information on how to keep your children safe and minimize the risk of childhood injuries, please visit www.safekids.org.

National Children’s Dental Health Month. For more information about oral health and to find a low-cost dental clinic in your area, please visit http://www.hrsa.gov/publichealth/clinical/oralhealth/findoralhealth.html.

Turner Syndrome Awareness Month. Turner syndrome is a chromosomal condition that affects females and may be the cause of 10% of all miscarriages. For more information about this syndrome, visit www.turnersyndrome.org.

We also used February to garner support and asking Facebook followers to “Open Your Heart to Family Voices.” See our causes.com site at http://www.causes.com/causes/652510-open-your-heart-to-family-voices-indiana/actions to support Family Voices Indiana.


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.

My Special Needs Classroom: A blog that shares resources and strategies for children with multiple disabilities, Special Needs PreK and Autism Spectrum Disorder from the perspective of a special education professional. We liked “Discipline 101 for Parents of Children with Special Needs.” Read this entry and others at www.myspecialneedsclassroom.com.

Posts from www.articles.complexchild.com including “How to Bathe Your Kid with Medical Issues” and “Creating an ER Protocol for Your Child” were shared with others.

Adventures in Extreme Parenthood, a blog in which a mother raising two sons with autism tells her tales while injecting a bit of humor, was a hit this month, especially with her inclusion of Ryan Gosling postcards. For an honest laugh, we suggest visiting www.extremeparenthood.com.


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/training. This month, we shared the following on Facebook.
Navigating the Funding Maze as part of our partnership with FUSE to provide “To Your Health: A training series on financing special health care needs. This learning resource is available here: funding maze2.wmv and is accompanied by a webquest, available here: http://www.fvindiana.org/Trainings/Funding_Maze_webquest.pdf. Both items are also housed on our website, http://www.fvindiana.org/training.
“Public Insurance Programs and Children with Special Health Care Needs” is a tutorial reviewing CHIP and Medicaid and the changes they are undergoing. It also encourages families to collaborate with policy makers to affect change in positive ways. http://hdwg.org/catalyst/medicaid-tutorial .
The 4th Annual Indiana Special Education Law Working for You! A Toolkit for Success conference will be held at Riley Child Development Center on March 22 and is free to parents of CYSHCN. For more information, visit: http://pediatrics.iu.edu/sections-and-faculty/child-development/4th-annual-indiana-special-education-law .
Family Voices’ Rylin Rodgers teamed with INSource to bring families a podcast discussing Medicaid Waivers. This and other podcasts are available at insource.podbean.com.
In 2008, the Organization for Autism Research (OAR) introduced the Schwallie Family Scholarship Program to support qualified individuals with autism or Asperger Syndrome residing in the United States pursuing post-secondary education. OAR will present awards of $3,000 each across three categories. For more information about the scholarship, please visit: www.researchautism.org.
Through the Looking Glass and its National Center for Parents with Disabilities and their Families are announced new scholarships specifically for high school seniors or college students who have parents with disabilities. A total of fifteen $1000 scholarships will be awarded. For more information about the scholarships, please visit www.lookingglass.org

Newsworthy:

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

“How Changes to Autism’s Definition Could Affect Millions in School Funding,” available here: http://stateimpact.npr.org/indiana/2012/02/23/how-changes-to-autisms-definition-could-affect-millions-in-school-funding/

Marion County Division of Family Resources office relocations. For more information, please visit http://t.co/kQkDVl8h.
The Department of Health and Human Services released new poverty guidelines for the US. These guidelines are available here: http://aspe.hhs.gov/poverty/12poverty.shtml.


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.

Family Voices wants to know how the Affordable Care Act has affected your family. Share your stories via comment on our Facebook site or by emailing info@fvindiana.org or leaving a voice mail at 317 944 8982

Families have the opportunity to express their opinions regarding the current state of services, programs, and supports for people with disabilities in their communities by completing the 2012 Indiana Disability Poll Livable Communities survey, available here: http://www.iidc.indiana.edu/cpps/survey/.

President Obama spoke at a briefing with The Arc. He said, ““I want you all to know that I’m going to keep fighting everyday for an America which lives up to our most basic values, not just for some, but for us all. But I need your help.” Your voice matters. Keep sharing your stories. Hear more at http://www.youtube.com/watch?v=cA4Okhk_SqA&feature=youtu.be.

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