Family Voices Indiana: Resources for you......

by Emily McKinley, health information specialist

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!

Awareness:

March hosted multiple awareness and commemorative days, including:

Disability Awareness Month. More than 19% of all Hoosiers have a disability. To learn more about raising awareness in your community, visit http://www.indianadisabilityawareness.org/.

Trisomy Awareness Month. For more information about and support for families of individuals with trisomsy 18, 13, and other related disorders, visit http://www.cdc.gov/ncbddd/actearly/.

Brain Injury Awareness Month. To learn more about brain injury, treatments, and support, please visit http://www.biausa.org/AnnouncementRetrieve.aspx?ID=82897#.T05OYGlc7Do.facebook.

Poison Prevention Week , March 18-24. Program the Poison Help number 1-800-222-1222 into your home and cell phones. More information is available here www.poisonhelp.hrsa.gov.

Purple Day, March 26, to raise epilepsy awareness. Learn more here: http://www.purpleday.org/.

Celebrate Cerebral Palsy Day, March 25. Read this blog post, http://www.lovethatmax.com/2011/03/my-child-with-cerebral-palsy-is-not.html?spref=fb, by a mother of a child with cerebral palsy.

Parents of Preemies Day on March 23. For more information about support, visit http://parentsofpreemiesday.org/.

The Affordable Care Act?s 2^nd Anniversary. Please visit our Facebook page (https://www.facebook.com/fvindiana) for multiple links to stories, websites, and family testimonials.

World Down Syndrome Day on March 21. Connect with Hoosier families here http://www.dsindiana.org/.

World Kidney Day on March 8. For more information about kidney diseases in childhood, visit http://kidshealth.org/parent/medical/kidney/kidney_diseases_childhood.html.

Spread the Word to End the Word Day on March 7. This day is designed to raise awareness about using the word ?retarded? and to promote respectful use of language. For more information, visit: https://www.facebook.com/EndtheWord.

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.

?7 Things You Don?t Know About a Special Needs Parent,? available here: http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=fb&src=sp&comm_ref=false, is a great article written by a special needs parent and featured by Huffington Post.

We really enjoy blogs written by families and members of the special needs community. This blog post, ?Dear Friend Hesitant to Interact with My Special Needs Child,? reminds us all that our children are first and foremost children: http://flappinessis.com/2012/03/23/dear-friend-hesitant-to-interact-with-my-special-needs-child/.

?From Raising Awareness to Respect? is a blog post focusing on promoting acceptance and respect rather than raising awareness of special needs. Read more here: http://usodep.blogs.govdelivery.com/2012/03/26/from-awareness-to-respect/.

This parent gives tips to others by offering ?What Not to Say,? http://www.lifewithjack.com/2011/01/what-not-to-say.html.

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.

Pacer Center?s Teens Against Bullying provides resources to those wishing to learn more about bullying prevention. View their site at http://www.pacerteensagainstbullying.org/#/home.

The Indiana Institute on Disability and Community?s Indiana Secondary Transition Resource Center offers webinars promoting successful transition. To view the archived webinars, visit http://www.iidc.indiana.edu/index.php?pageId=3283.

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 March?s hot topics were:

The US Supreme Court heard oral arguments regarding the constitutionality of the Affordable Care Act (ACA) during the latter part of the month (March 26-28). Oral arguments and their transcripts are available at http://www.supremecourt.gov/oral_arguments/argument_audio.aspx.

The Association of Maternal and Child Health Programs testified before congress to maintain funding for Maternal and Child Health programs under Title V. For more information about the testimony, please visit: http://www.amchp.org/Policy-Advocacy/Leg-Alerts/Documents/AMCHP%20Testifies%20Before%20Congress%20on%20Maintaining%20a%20Federal%20Commitment%20to%20Mothers%20and%20Children.pdf.

The Department of Health and Human Services released its new rules regulating health insurance exchanges in accordance with provisions of the ACA. For more information, please visit: http://www.kaiserhealthnews.org/Daily-Reports/2012/March/12/health-exchange-rule.aspx?utm_source=khn&utm_medium=internal&utm_campaign=breaking.

The CDC announced that now 1 in 88 children have autism. If you are concerned about your child?s development, learn more about developmental milestones by visiting: http://www.cdc.gov/ncbddd/actearly/. Recognizing developmental delays and symptoms of neurological disorders early can greatly improve outcomes. The American Academy of Pediatrics also addresses the report here: http://www.healthychildren.org/English/News/pages/Prevalence-of-Autism-Spectrum-Disorders.aspx?nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token.

Recipients of government funded benefits, such as Social Security, SSI, SSDI, VA and other benefits are required to set up direct deposit by March 1, 2013. Visit http://www.godirect.org/ for more information and to set up your direct deposit.

Recent tornadoes in Southern Indiana reminded us all to have an emergency plan. Plans are often more complicated when special needs must be accommodated. For more information on designing an emergency action plan for your family, please visit, http://www.scribd.com/doc/83702367/fema-476-1#source:facebook.

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.

We have been asked to locate families who have had experience with video EEG monitoring, also called EMU, Epilepsy Monitoring Unit, vEEG, or LTM. These would be patients who were actually admitted to the hospital for overnight stays for video EEG monitoring for one or more days at Riley Hospital. If you have experience that you are willing to share, please contact Darla Cohen, Coordinator Patient- and Family-Centered Care, Hospital Administration, Riley Hospital for Children at Indiana University Health, 705 Riley Hospital Drive Indianapolis, IN 46202, P: 317.948.1613 F: 317.948.1646 dcohen@iuhealth.org.

All parents of Indiana?s 164,000 students receiving special education services should receive a paper survey sometime during the second week of April 2012. This survey contains 31 questions designed to measure parent satisfaction with their experience in working with education staff at their children?s school and the special education services their children are receiving during the current 2011-12 school year.

Parents will receive the survey in a white business-sized envelope from their children?s school. Parents with more than one child receiving special education services should complete one survey per child. Additional paper surveys are available to parents from their children's school. Even though parents will receive a paper copy of the survey, parents with Internet access are encouraged to complete the survey on-line by going to http://surveys.wested.org/s3/inps/.

During the first week of April, 2012, each Special Education Planning District Director in Indiana will receive a shipment of surveys to be distributed to parents by mail or in person from school personnel. Some surveys may also be sent home with the children receiving special education services. If parents do not receive a survey by April 16, 2012, they should complete the survey on-line or request a paper survey by contacting the person at their children?s school responsible for overseeing the special education services their children receive.

The survey will take about five minutes to complete and all individual responses will be kept confidential. Completed surveys must be completed on-line or mailed by April 30, 2012. It is important for all parents to complete this survey so that the Indiana Department of Education and Indiana?s School Districts can improve the quality of special education services provided to Hoosier children and their families. The results of this survey will be sent by the Indiana Department of Education to the U.S. Department of Education to fulfill federal legal requirements under Indicator 8 of the Individuals with Disabilities Education Improvement Act.

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