Resources for you......
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!
Awareness:
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.
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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.
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.
We're on Pinterest! Follow us at http://pinterest.com/fvindiana/.
We just joined, so be sure to check back as we pin, pin, pin. If you’d like an
invitation to join, email us at info@fvindiana.org
and we’ll send you one!
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.
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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.
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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 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.
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