UCP Releases “What Matters to You?” Focused on the Healthcare Outcomes of People with Disabilities

The conversation surrounding healthcare has been on everyone’s radar this week. As part of a two-year grant, UCP asked self-advocates in the disability community to share what mattered most to them when it came to their health, and what they would like doctors and health researchers to know about the disability experience, as part of our “Speak for Yourself” initiative.

As we seek to engage more self-advocates in the conversations surrounding health, encourage individuals to take charge of their health, and become more informed about the Patient-Centered Research (PCOR) approach, UCP has been asking the question “What Matters to You [when it comes to your health as an individual with a disability]?” We’ve hosted a webinar, a twitter chat, a photo contest and now we are soon to release a short video.

UCP hopes that this video will serve as tool for those in your communities to take charge of their health outcomes, as well as help spark conversations on self-advocacy and health, and encourage your community to learn more about PCOR.

**Please note that the video is embargoed until May 10th 11:00 am EST.**

Below you will find sample Facebook posts, Tweets, and newsletter blurb/copy to share the video on your social media channels and your networks​.

The video can be viewed here.

Social Media Toolkit

Please feel free to use these sample social media post to share on your channels and with your networks.

Sample Facebook Posts: https://youtu.be/AgSM-aK9nsw

  1. What do you wish doctors and health researchers knew about living with a disability? #UCP has released a new video sharing the perspectives of individuals living with disabilities and sharing what matters to them when it comes to their health. Want to add your voice or share your experience? Comment below! Share this video and encourage your friends and community to get involved and learn more about the PCOR approach! More info: http://bit.ly/2jvyZ5Q  #WhatMattersUCP #UCPSFY http://bit.ly/2qnMcFe
  2. Hear what these advocates want the health community to know about living with a disability. Want to add your voice to the conversation? Tell us what matters to you! Find out more. #WhatMattersUCPhttp://bit.ly/2qnMcFe

Sample Tweets:

  1. #Disability advocates share what matters about their health. Watch now: http://bit.ly/2qnMcFe #UCPSFY #WhatMattersUCP
  2. What do you want #health professional to know about being a #PwD? New video explores the #PCOR approach. Watch: http://bit.ly/2qnMcFe
  3. Watch what matters to some #disability advocates when it comes to healthcare & share your thoughts using #WhatMattersUCP http://bit.ly/2qnMcFe
  4. What matters to you when it comes to your health? Check out what advocates have to say in #UCP’s new video #UCPSFY http://bit.ly/2qnMcFe

New Data from Pilot Project Looking At Younger Children with ASD

A new CDC report, published in the Journal of Developmental and Behavioral Pediatrics, suggests that progress has been made in identifying children with autism spectrum disorder (ASD) at younger ages.  The earlier children are identified as having ASD, the sooner they can get the services they need to help them reach their full potential. Although progress has been made in identifying children with ASD earlier, more tracking and research is needed to understand why certain groups of children are not being identified as early as others. Health professionals, childcare providers, and educators who work with preschool-aged children in the five communities where this pilot project was conducted and in communities across the country can use this new information to help ensure that all children with ASD are identified and connected to services as soon as possible.

We invite you to read a summary of the key findings from this paper here or to view the article’s abstract here.


CDC is committed to continuing to provide essential data on ASD, search for factors that put children at risk for ASD and possible causes, and develop resources that help identify children with ASD as early as possible. To learn more, please visit www.cdc.gov/autism

What Can You Do

You can help spread the word about this new data and about Early ADDM! We encourage you to:

  • Share these links with your colleagues and friends.
  • Post them on your own home page as well.
  • Share on your social media channels or share/retweet/favorite from @CDC_NCBDDD.
  • Join the tele-briefing (more details below).

Families, health professionals, childcare providers, and educators: we encourage you to visit www.cdc.gov/ActEarly to download free milestone checklists and other resources to help you track a child’s development.

The Friends of NCBDDD invite you to a special tele-briefing to discuss key findings with the report’s authors and hear remarks from NCBDDD leadership and the Friends.

 Date: Thursday, December 10, 2015

Time: 3:00 PM (EST)

 Toll-Free Number: 888-795-0855

Passcode: CDC Media

Committing to a Happier, Healthier and More Inclusive Tomorrow

Committing to a Happier, Healthier and More Inclusive TomorrowAll people have the right to conditions and resources that ensure optimal health. Yet, inaccessible facilities, lack of transportation to recreation venues, absence of knowledgeable staff who know how to adapt programs and a general attitude among providers that people with disability need specialized vs. integrated services, feeds into a culture of isolation and separation.

These circumstances further expose an already vulnerable population to higher rates of obesity and health disparities.

Facing facts

With rates of obesity 2 to 4 times higher in children and adults with disability compared to the general population, there is an urgent need to establish new models of health promotion that focus on the integration of people with disability. Working at the community level to promote healthy living and prevent chronic disease brings the greatest health benefits to the greatest number of people in need.

“The experience of entering into a society where inclusion and acceptance are the norm is a powerful shift.”

Community Health Inclusion encompasses a culture where all people have equal access and opportunities to participate in healthy living where they live, work, learn and play by implementing policy, system and environmental changes that increase access to physical activity, healthful food and healthy weight management initiatives. Please review the entire article here.

Let’s share! Participate in the Assistive Tech campaign!

Thank you for participating in Mediaplanet’s Assistive Tech campaign! To make spreading the news easier, we’ve compiled some recommended verbiage to simply copy and paste to your social media platforms, as well as to your company blog, newsletter, or website. Please feel free to use verbatim, or adjust as you see fit. Thanks for spreading the news!


We’re featured in the @MediaplanetUSA “Assistive Tech” campaign! Visit the campaign to see how assistive technology is bringing a brighter future to everyone:


We’re in @MediaplanetUSA #AssistiveTech campaign! Read to learn about the technologies changing the industry:


We are included in the @MediaplanetUSA #AssistiveTech campaign! Visit http://www.futureofpersonalhealth.com for more on the ways technology is helping individuals have more freedom.


Find us in the MediaplanetUSA new “Assistive Tech” campaign, out today! Pick up a copy within the centerfold of USA Today and visit www.futureofpersonalhealth.com to see the innovation happening in the industry and raise awareness about the possibilities to those in need of assistive technology:

Company blog, website, or newsletter:

We recently participated in MediaplanetUSA’s “Assistive Tech” campaign where industry professionals and associations came together to raise awareness and spread knowledge on the possibilities available to those in need of assistive technology, while highlighting the innovations happening in the industry. The campaign was distributed within the centerfold of USA Today on September 25, 2015 and is published on a Mediaplanet original site. Visit the site to learn more: www.futureofpersonalhealth.com?utm_campaign=assistivetech&utm_medium=social

World Thrombosis Day 2015

World Thrombosis Day LogoBlood clots affect up to 900,000 people in the United States each year. World Thrombosis Day (WTD), observed on October 13, places a global spotlight on thrombosis (the medical term for blood clots) as an urgent and growing health problem.

This year’s WTD focused on healthcare-associated blood clots, which is a leading cause of preventable hospital death in the United States, and costs up to $5 billion per year. In honor of WTD, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) created new web pages focused on blood clots and healthcare-associated blood clots, full of new free resources including fact sheets, infographics, eCards, and more. In addition, on October 13, 2015, @CDC_NCBDDD participated in a WTD Twitter chat hosted by the International Society on Thrombosis and Haemostasis (ISTH). Following at 2pm that same day, NCBDDD and ISTH cohosted a webinar featuring Dr. Andra James on the prevention and treatment of blood clots during pregnancy.

We have also been tweeting about blood clots via @CDC_NCBDDD throughout the month of October. Sign into Twitter and join the conversation about blood clots and how to prevent them!

CDC’s Learn the Signs. Act Early. Announces New Promising Practices Collection

CDCs Learn the Signs

CDC’s Learn the Signs. Act Early. team proudly announces the launch of its Promising Practices collection. The collection showcases how partners across the country have promoted Learn the Signs. Act Early. messages and materials among families with young children and the organizations, health care professionals, and early care and education providers who serve them. The Promising Practices collection includes activities that show great promise in promoting awareness of the importance of tracking a child’s developmental milestones and acting early on concerns.

It was designed to inspire others to adopt and adapt activities into their own programs and communities. Visit the innovative, searchable Promising Practices collection to learn more, and share the link with others in your organization and community. Bookmark the site and visit it regularly—as partners continue to do outstanding work, the collection will continue to grow!

Reassessing the approach of the Learn the Signs. Act Early. campaign. Key findings.

Reassessing the approach of the Learn the Signs. Act Early. campaign. Key findings.The Journal of Developmental and Behavioral Pediatrics has published a research study looking at the approach of the Learn the Signs. Act Early. campaign, which encourages parents of young children to track their child’s developmental milestones and to act early if they have concerns about their child’s development.

Results affirmed the campaign’s approach of educating parents about child development:

  • Parents who had a child with a developmental delay or disability said they were usually the first to be concerned about their child’s development and that information on what to expect at different ages, such as the campaign’s milestone checklist, would have been helpful for them to have as they sought help.
  • Other parents who had typically developing children reviewed Learn the Signs. Act Early. materials and understood their purpose and found them appealing and useful.

This study provides important information for healthcare providers. Pediatricians and others who provide primary care for young children can help by taking a central role in the early identification of developmental delays and disabilities. This provider role would ideally include using developmental screening tools, monitoring young children’s developmental milestones, providing parents with tools to facilitate monitoring, initiating conversations about child development, and making referrals when needed.

Sickle Cell Trait Toolkit Update: New Educational Resources on Sickle Cell Trait Available, More Coming Soon!

What is the sickle cell trait (SCT) toolkit?

The sickle cell trait (SCT) toolkit is an online compilation of user friendly health education materials related to SCT. We are happy to have the opportunity to provide you or your organization with necessary tools and resources to educate yourself or the communities you serve about SCT. We hope that the information provided is both helpful and informative and empowers you or those you serve to take action.

 Who developed the toolkit?

CDC together with the American Society of Hematology (ASH) (http://www.hematology.org/) and the Sickle Cell Disease Association of America (SCDAA) (http://www.sicklecelldisease.org/) developed the SCT toolkit.


Who is the intended audience for the toolkit?

The SCT toolkit is designed to contain materials targeted to multiple audiences.  Resources included in the toolkit are specifically intended for:

  • the general public that may be carriers of SCT but are unaware of their trait status,
  • people who already know they have SCT, and
  • healthcare providers who can educate their patients about SCT.

In addition, the toolkit provides helpful information and resources for athletes who may be affected by SCT as well as their trainers, team doctors, and coaches.

What informational tools or resources are available now through the toolkit?

We are excited to share six new fact sheets related to sickle cell trait and sports, diabetes testing, and blood and organ donation! These materials are available to download and share today! They include:

In addition, the following resources are also available! They include:

Will additional tools or resources be added in the future?

Yes! More materials are currently under construction and will soon be added to the toolkit.  Some of the topics to be addressed include:

  • Glaucoma Post Hyphema
  • Hematuria
  • Splenic Infarct

We encourage you to check back often!

What You Can Do

Spread the word! We encourage you to share these links with your colleagues and friends.  Feel free to post them on your own home page as well.  We are tweeting at https://twitter.com/CDC_NCBDDD. We invite you to comment, re-post, re-tweet, and follow @CDC_NCBDDD! For more information about SCT or sickle cell disease, please visit http://www.cdc.gov/ncbddd/sicklecell/index.html.  Thank you for your continued support and for your interest in learning more about SCT.

If you would like to unsubscribe from this ListServ LIST, please send an email to LIST@cdc.gov, leave the email Subject blank, and include the following “one” line in the Body of the email:


September 9 — International Fetal Alcohol Spectrum Disorders Awareness Day

Alcohol use during pregnancy can cause a range of lifelong physical, behavioral, and intellectual disabilities known as fetal alcohol spectrum disorders (FASDs). Alcohol use during pregnancy can also cause miscarriage, stillbirth, prematurity, and sudden infant death syndrome. During pregnancy, there is no known safe amount of alcohol use as well as no safe time and no safe type of alcohol to drink.

Each year, the ninth day of the ninth month (September 9) marks FASD Awareness Day. This day was chosen to commemorate the 9 months of pregnancy and to serve as a reminder that the best advice is to avoid any alcohol use during pregnancy. The first awareness day was recognized on 9/9/1999.

CDC is working with FASD Practice and Implementation Centers and national partners to promote systems-level practice changes among providers through training and implementation of evidence-based approaches in the prevention, identification, and management of FASDs. Healthcare professionals can use alcohol screening and brief counseling to help people who are drinking too much to reduce their alcohol use and advise women not to drink at all if there is any chance they could be pregnant.


What You Can Do:twitter chat

  • Use the FASD Awareness Day Packet for 2015 to promote consistent messaging about the risks of alcohol use during pregnancy and the effects of FASDs. The packet includes social media messages designed to be used widely.
  • Please share our CDC.gov Web feature with colleagues and partners – Living with FASDs: In Taylor’s Own Words. The feature tells the story of a young man, Taylor Allen, his FASD journey, and how he became empowered to tell his story and educate others. The feature also highlights two new fact sheets available from CDC. Thank you to the Allen family and the National Organization on Fetal Alcohol Syndrome (NOFAS) for sharing their story!
  • Join the National Institute on Alcohol Abuse and Alcoholism @NIAAAnews and the National Organization on Fetal Alcohol Syndrome @NOFAS_USA and others for a Twitter chat on September 9 at 1:00pm Eastern. Please use the hashtag #NIAAAchat
  • Help us spread the word….

FASDs are completely preventable if a woman does not drink alcohol during pregnancy. More information about FASDs and alcohol use during pregnancy is available at www.cdc.gov/fasd.



If you would like to unsubscribe from this ListServ LIST, please send an email to LIST@cdc.gov, leave the email Subject blank, and include the following “one” line in the Body of the email:


Friends Webinar: Health Insurance Marketplaces

Health Insurance Marketplaces: Preparing to Assist People with Disabilities
What do you know? What do you need to know?

PowerPoint Slides: Health Insurance MarketPlaces Slides
Webinar Recording:

Webinar Description:
No doubt you’ve heard about the new Health Insurance Marketplaces that will launch in all states this fall. But you probably still have questions about how these new Marketplaces will work and what they will mean for people living with disabilities. Q

This webinar included a panel presentation and moderated discussion on the launch, what it means to you and how to be ready to help. Members of the Friends of NCBDDD who have been closely following the implementation of the Affordable Care Act (ACA) answered some of the most frequently asked questions regarding Insurance Marketplaces and their impact on coverage and access to care for people with disabilities.

Barbara Kornblau, JD, OTR, FAOTA, Coalition for Disability Health Equity
Rachel Patterson, MPA, Association of University Centers on Disabilities
Niketa Sheth, MPA, Christopher & Dana Reeve Foundation
Read Speaker Bios Here!

Spring Webinars Held by the Friends of NCBDDD

Real-World Social Media Stories to Strengthen Your Efforts
During this webinar, presentations were heard from Friends thought leaders who have successfully implemented social media strategies to enhance communications.

NCBDDD President’s Budget Review
During this recently held webinar, NCBDDD leadership reviewed the President’s recently released FY2014 budget and answered questions.