compiled by health information specialist, Emily McKinley (new mom to Adlai!)
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!
April played host to multiple awareness and commemorative days, including:
Autism Awareness Month. Here are “Ten Things Every Child with Autism Wants You to Know.”
Donate Life Month. This campaign raised awareness for organ donation. For more information, visit the national Organ Donation site.
Month of the Military Child. Military families of children with special health care needs struggle to get continuous care. Learn more about establishing routines for your child here. One of our Health Information Specialists has experienced the journey of a military spouse and base professional; please do not hesitate to contact us with your questions.
National Child Abuse Prevention Month. In Indiana, suspected child abuse or neglect should be reported to Child Protective Services (CPS). They operate a 24-hour, 7-day a week hotline: 1-800-800-5556. There is also a local number for every county listed at the CPS website.
National Minority Health Month. The Office of Minority Health’s primary responsibility is to improve health and healthcare outcomes for racial and ethnic minority communities by developing or advancing policies, programs, and practices that address health, social, economic, environmental and other factors which impact health.
National Public Health Week, April 2-8. Learn more about the initiative, “A Healthier America Begins Today,” by visiting here.
World Autism Awareness Day on April 2. Families of individuals with autism shared their stories on various media outlets as well as on our Facebook page. Many autism-related updates, trainings, and policies were also shared there. Please contact us for more information about autism resources in your area.
World Hemophilia Day on April 17. This year’s theme was “Close the Gap.” To learn more about hemophilia or to show your support, visit here.
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.
Readers enjoyed “Unraveling the Mystery of Touch in the Autistic Brain” featured by the Autism Science Foundation and found here. The author and mother of a son with autism commented, "Sometimes a virtual hug is all I can give my son, late at night and so far away. Our journey with autism is not at all an easy one. I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions."
What do you think about the term “special needs?” One mother expresses her opinion in a moving video.
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Our followers enjoyed this article in which a counselor and mother to a son with Down Syndrome shares her take on how the possibilities for our children are limitless.
"What if autism awareness began with listening to adult autists describing what their lives were like? What if those same autists were on the boards of every autism group? What if all of us, whether we had an autistic child or not, were aware of autistic adults living happy, fulfilled lives? How would that change our 'awareness'?" Read more here and share your thoughts on our 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.
We have a NEW training: Filling the Funding Gaps. Raising a child with special health care needs or disabilities brings unexpected and added expenses. This training explores the variety of grant, philanthropic and creative options available to help you meet your family’s needs. Be prepared to learn about the hidden options you need to know! You can find it, and the webquest, on our website.
To view a PowerPoint and video regarding the proposed changes to the Support Services Waiver, please visit our website.
Learn more about financial and medication resources by visiting the National Organization for Rare Disorders resource page.
In this issue of Family Voices, the Family Center on Technology and Disability looks at the role of assistive technology (AT) in inclusive education. With the proliferation and popularity of assistive technology devices today, Dr. Paula Kluth asks readers to step back and first ask, “what problem are we trying to solve?” to help families and schools choose effective assistive technology.
Here you will find resources presented in English to help you find information in Spanish to share with Spanish-speaking families. Find resources on disability conditions and concerns, locate NICHCY publications in Spanish, and direct your Spanish-speaking families to this Spanish website! We also have bilingual specialists at Family Voices Indiana.
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 April’s hot topics were:
Indiana’s Division of Disability and Rehabilitative Services (DDRS) announced proposed changes to the current Support Services Waiver. For more information about these changes, please visit our blog to read a summary of the changes or visit our website to view a video.
DDRS also released a policy statement regarding eligibility for the DD/Autism/Support Services waiver. Learn more at our blog.
The Social Security Administration has added 52 new Compassionate Allowances conditions, primarily involving neurological disorders, cancers and rare diseases. The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years. Other eligibility requirements still have to be met. Visit the Social Security Administration’s site for more information.
In a landmark case, a federal judge in Florida issued an order requiring Florida’s Medicaid program to cover behavioral therapy for children with autism. Learn more about this case here.
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:
Share your voice at upcoming Powerful Parents meetings hosted around the state by DDRS. This is your opportunity to share concerns and comments regarding the Medicaid Waiver system and other programs. More information is available on our blog.
Use your voice to comment on the Home and Community Based Waiver System. The public comment period ends May 4.