June 2013

In this Issue

NCBDDD Quarterly Report

Parent Corner

News from NCBDDD
Dr. Timothy Shriver
Honored by CDC

News from our Partners
New Resource Showcases
Provider and Patient/
Family Partnerships

New Online Toolbox:
Improving the Receipt of
Clinical Preventive
Services Among Women
with Disabilities

PCFSN Launches Phase
2 of Inclusion Program

New Clinical Report,
Algorithm & Video
Vignettes: Motor Delays

The Arc’s HealthMeet
Project Meeting
Holds First Annual
Project Meeting

Overcoming Obstacles
to Oral Health Trainings 

News from AFB

Health and Well-Being
Surveillance Survey


2013 International Research
Conference on TSC and
Related Disorders:
Molecules to Medicines

June 20-23
Washington, DC

Amputee Coalition
National Conference

June 27-29
Orlando, FL

July 10-12
Dallas, TX

The Arc’s National
Conference: Achieving

August 3-5
Bellevue, WA

2013 Southwest
Conference on Disability

October 8-11
Albuquerque, NM

6th International Conference
on Birth Defects and Disabilities

in the Developing World
November 10-13
Cebu, Philippines

2014 AFB
Leadership Conference

February 27-March 1
New York City, NY

Upcoming Webinars
& Webcasts

Public Health Grand Rounds
Lyme Disease
May 21, 1 pm ET
Watch via Webcast

How State Health
Agencies Can Support
the Physical Activity
Guidelines by Ensuring
Accessibility within the
Built Environment

June 26, 2pm ET

Click here to register

Know, Grow and
Eat your Vegetables

June 19, 2pm ET

Click here to register

Wellness for EveryBody
 June 25, 2pm ET

Click here to register


2013 APHA Disability
Section Scholarships
Contact Dot Nary with
questions or for more

Deadline: September 2

Deadline: October 22

Calling for News from
NCBDDD Partners

Send in updates on conferences,
meetings, special awards
and journal or research
announcements for the next
edition of the Friends of
NCBDDD E-Newsletter! Submit
program highlights with a short
summary of 150-200 words to
Tory Christensen by July 12.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (twitter.com/adrianegriffen)
Craig Mason,
Vice Chair
Jeff Cohen,
Judit Ungar,
Member at Large
Cindy Brownstein,
Member at Large
Carolyn Mullen,
Member at Large
Alan Brownstein,
Member at Large
Mary Andrus,
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Melissa Putman,
Advocacy Coalition Co-Chair
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
in the Division of
Blood Disorders:

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:

Dr. Georgina Peacock,
Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities:

Susanna Visser,
in the Division on Human
Development and Disability:



Join the Friends of
NCBDDD Listserv

NCBDDD Quarterly Report

Coleen A. Boyle, PhD, MS Hyg Director, NCBDDDDear Friends, of NCBDDD:

It has been an eventful quarter at NCBDDD as we continue to work through sequestration, drive our focus areas forward and connect with all of you.

Between March and June we have been conducting our Spring/Summer series of meetings with partners with the goal of engaging on program planning around our focus areas. We also have a fall series in the works which will focus more on budget issues. In April, our Division of Human Development and Disability hosted the first meeting in the series in Washington, DC. Discussions focused on the topics of health indicators and data collection/framing as well as examining implications of the Affordable Care Act related to people with disabilities. The Division has begun hosting recurring regular calls on both topics. In May, given travel constraints, the Division of Birth Defects and Developmental Disabilities held their partner meeting as a webinar and used an innovative approach to engagement – employing the use of polling technology to assess the communication needs and outreach efforts of our partners around Division focus areas. This webinar gave us a great look at how you are using our data and how we can best collaborate to spread our health messages. The Division of Blood Disorders has a partner meeting slated for June 27th – also using the webinar format. The Division has invited new and potential partners to the call and will provide an overview of their work, introduce their new Division Director, Dr. Lisa Richardson, and share a vision for the Division’s growth.

Dr. Frieden and Rosalynn Carter

Dr. Frieden and Rosalynn Carter

In addition to the partner outreach, May was a particularly busy month as we released the first comprehensive report on children’s mental health in the United States.  This Morbidity and Mortality Weekly Report (MMWR) supplement, Mental Health Surveillance among Children in the United States, 2005-2011, describes federal activities to monitor U.S. children’s mental disorders and presents estimates of the number of children ages 3 to 17 years who have specific mental disorders. NCBDDD scientists were the lead authors on this report that is an important step to Americans better understanding children’s mental disorders and the impact they have on children’s mental health. The report found that millions of American children live with depression, anxiety, ADHD, autism spectrum disorders, Tourette syndrome or a number of other mental health issues. We were pleased to see that the launch of the report was mentioned at Substance Abuse and Mental Health Services Administration (SAMHSA)’s National Children’s Mental Health Awareness Day by CDC Principal Deputy Director Dr. Ileana Arias. Dr. Arias was also featured in an American Psychological Association blog on children’s mental health. The report itself was launched at the Georgia Mental Health Forum by former First Lady Rosalynn Carter, Secretary Kathleen Sebelius of the Department of Health and Human Services and CDC Director Dr. Tom Frieden. Following the release, Dr. Frieden and SAMHSA Administrator Pam Hyde, JD, co-authored a Huffington Post Healthy Living Blog describing the commitment of both our agencies to this important public health issue. Public health includes mental health. And, mental health is an essential part of a child’s overall health. Childhood mental disorders can be prevented, as well as treated and managed, and NCBDDD has been working with CDC programs and several Federal agencies to help children reach their full potential in life. I personally feel that it is important to put a spotlight on these issues and to develop a public health response to help families. While we can all agree that children should have the best opportunity to lead healthy and productive lives and deserve access to effective care to prevent or treat any mental health problems that they may develop, we know that there are significant health disparities that must be addressed. This report is an important first step. The goal is now to build on the strengths of these partnering agencies to develop better ways to document how many children have mental disorders, better understand the impacts of mental disorders, inform needs for treatment and intervention strategies and promote the mental health of children. If you’d like to join us in highlighting this issue, more information and resources are available here, and key action-oriented messages specific to different groups of people are available here.

Coleen Boyle signature

Coleen Boyle, PhD, MS Hyg
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Parent Corner

beckettThe American Academy of Pediatrics has made great strides in creating partnerships between families and pediatricians. They have included the concept in their ten Megatrends, which identify the Academy’s interest over the next decade. Besides their work on developing family-centered medical homes, they also do extensive work on Bright Futures for all children. In addition, through their Section on Home Care, they have developed a Parent Advisory Group (PAG). This group has been funded through the Section since 2004. They have also contracted with a parent consultant, Denise Callerman, since before that date.

Currently, Betsy Anderson and I serve as co-chairs working on numerous projects with requests coming from many sectors of the Academy. Our plans for the next few months are to develop and distribute a survey through the various committees and Sections staffed by Academy personnel. Denise and I worked with Eileen Forlenza, a parent and consultant from Colorado, to initiate the concept of involving families in all levels of  the Academy.

Our Parent Survey will be distributed shortly, but we are also interested in families who work within clinical practice by serving as a family consultant, a parent supporter or on a family advisory group for an individual practice. We will reach out to national family organizations to assure their voices are heard. If you are aware of families who may have served in focus groups or advisory groups for the Academy or its members, please let us know by contacting waivermom@earthlink.net.

The PAG has applied for additional funding to help expanded family involvement within the Academy and will be looking for families who work well with their pediatricians. We hope to develop a training session for family involvement to further strengthen these partnerships.

Looking forward to keeping you informed of our progress.

Julie Beckett

News from NCBDDD

Dr. Timothy Shriver Honored by CDC

t.shriverDr. Timothy Shriver, Chairman and CEO of Special Olympics, has been honored by CDC as a Health Equity Champion. CDC’s Office of Minority Health and Health Equity recognized Dr. Shriver in their most recent e-newsletter for his work to promote a policy and culture that understands, supports and integrates people with disabilities in the workings of all aspects of society. Under Dr. Shriver’s leadership, Special Olympics serves more than 4 million Special Olympics athletes and their families in 180 countries. NCBDDD’s Division of Human Development and Disability supports Special Olympics’ Healthy Athletes program, which has provided more than 1.3 million health screenings and engaged more than 120,000 health professionals worldwide. Through partnerships such as the one with NCBDDD, Healthy Athletes has provided life-altering interventions for people with intellectual disabilities and have changed the attitudes and practices of health professionals who care for people with intellectual disabilities.

News from our Partners

New Resource Showcases Provider and Patient/Family Partnerships

AAP NCMHI logoA new monograph, Positioning the Family and Patient at the Center: A Guide to Family and Patient Partnership in the Medical Home, about family-centered care for pediatric patients, is now available from the National Center for Medical Home Implementation and the American Academy of Pediatrics. The monograph features family-centered medical home strategies from 17 pediatric primary care practices from across the country. Click here to access the monograph!

New Online Toolbox: Improving the Receipt of Clinical Preventive Services Among Women with Disabilities

AMCHP-logoThe Association of Maternal and Child Health Programs (AMCHP) and the CDC’s Division of Human Development and Disability/NCBDDD are pleased to announce the release of a new online toolbox for Improving the Receipt of Clinical Preventive Services among Women with Disabilities. The toolbox was created for maternal and child health program staff that work with women with disabilities, offers a centralized resource of health information and links to existing tools specifically designed to increase the use of clinical preventive services among women with disabilities. The tools in this resource address the needs to increase knowledge and use of recommended services, identify service gaps and monitor progress, create or map accessible facilities and transportation in communities and empower clinicians and women with disabilities to interact effectively. Click here to access the toolbox!

AUCD’s State Health Reform Workshop

AUCD logoDecisions for several Health Care Reform issues of significance to people with disabilities have landed at the state level. Now is the time to act and collaborate with partners in your state so you can
participate as these policies get underway, and make sure policies are developed that will be beneficial to people with disabilities. The Association of University Centers on Disabilities’ (AUCD) State Health Reform Workgroup provides a forum for conversation,
information-sharing and collaboration regarding what is happening in your state. Join the Health Reform Hub’s listserv, SharePoint site and monthly conference calls. The next Health Reform Workgroup
Conference call will take place on June 25 at 4 pm ET. Use the following number to call in: 1-866-682-4676. Click here to learn more about AUCD’s Health Reform Hub!

PCFSN Launches Phase 2 of Inclusion Program

The President’s Council on Fitness, Sports & Nutrition’s (PCFSN) Executive Director, Shellie Pfohl, recently joined Miami-Dade Public Schools officials to present 1,200 Presidential Active Lifestyle Awards (PALA+) awards to students with disabilities. These PCFSN logostudents participated in I Can Do It, You Can Do It! (ICDI), a Council program that encourages regular physical activity and good nutrition, regardless of ability. At the awards ceremony, PCFSN announced the revitalization and expansion of ICDI. The program previously focused on youth participation and was implemented in nine sites across the U.S. Now, ICDI will include children AND adults—which could impact 56 million Americans with disabilities. The Council’s goal is to expand and implement the program in at least 100 sites nationwide over the next five years.

New Clinical Report, Algorithm & Video Vignettes: Motor Delays

AAP logoPediatricians often encounter children with delays of motor development. Earlier identification of motor delays allows for timely referral for developmental interventions as well as diagnostic evaluations and treatment planning. Motor Delays: Early Identification and Evaluation and its accompanying clinical decision algorithm, were published in the June issue of Pediatrics. This report includes suggestions for formal developmental screening at the 9-, 18-, 30-, and 48-month well-child visits; approaches to the neurologic examination, with emphasis on the assessment of muscle tone; and initial diagnostic approaches for medical home providers. Use of diagnostic tests to evaluate children with motor delays is described and the importance of pursuing diagnostic tests while concurrently referring patients to early intervention programs is emphasized. Video vignettes were developed to discuss ways in which primary care pediatricians can use the clinical report and algorithm to enhance developmental surveillance and screening for neuromotor impairment.

Development of this clinical report was funded by the AAP through the Public Health Program to Enhance the Health and Development of Infants and Children, a cooperative agreement with the CDC/NCBDDD

The Arc’s HealthMeet Project Holds First Annual Project Meeting

HealthMeet LogoThe Arc’s HealthMeet project held the first Annual Project Meeting on May 16-17 in Rosslyn, VA. It brought together representatives from the projects’ partner organizations as well as the 5 pilot sites implementing free health assessments for individuals with ID.
Health assessments are progressing in North Carolina, Massachusetts, New Jersey, Pittsburgh and the San Francisco region. In addition to the assessments, several trainings have been developed in year one for health professionals, LEND trainees, families and self-advocates to increase awareness of common disparities. Over 1,000 participants have attended bi-monthly health webinars featuring expert guest speakers and 10 Chapters of The Arc will be trained with the HealthMatters curriculum by the end of the summer to create health/fitness plans for individuals with ID. In year two, The Arc looks to continue to expand and
improve the health assessments and find new, innovative approaches to help create a systems change in healthcare resulting in better treatment for individuals with ID.

Overcoming Obstacles to Oral Health Trainings

Oral Health: Boy Brushing TeethThe Center for Disabilities and the Delaware Division of Public Health will be holding five trainings for caregivers of people with disabilities throughout Delaware this June.  Direct support professionals, group home staff, family members of individuals with disabilities and dental hygenists are invited to attend.
Caregivers will learn about the causes of oral health problems, daily mouth care, creating conditions for oral health success and maintaining a healthy mouth in people with disabilities. The trainings will take place on June 20, June 21, June 25, June 27 and June 29. There is no fee for this training, but pre-registration is required. Click here to register and click here for more information.

News from AFB

AFB Announces New, Enhanced eLearning Center for Vision Loss Professionals
Busy professionals in the blindness and low vision fields now have a familiar resource with a new look and even more robust offerings: the American Foundation for the Blind (AFB) eLearning Center. The eLearning Center was established to help vision loss professionals remain at the forefront of the latest research and trends, while earning continuing education credits on their own time. Webinars on cutting-edge topics from some of the most reputable names in the field are offered. Specialists new to the field and veterans seeking to expand their knowledge will benefit from the content. Click here to explore AFB’s collection of eLearning offerings or email eLearning@afb.net.

New App Helps People with Vision Loss Easily Take Notes on iPhone®, iPad®, and iPod touch®
For the millions of Americans with vision loss who are looking for a simple, convenient way to take notes at work, at school, or at home, AFB has created AccessNote™, a specialized notetaker appAFB Logo for the iPhone, iPad, and iPod touch. This is the first notetaking app developed and designed specifically for users with vision loss. The AccessNote app is unique in that if offers seamless navigation, automatic saving, cursor tracking, unparalleled simplicity, DropBox integration and compatibility with Bluetooth keyboards. AFB’s AccessNote app is available for $19.99 and was developed in conjunction with FloCo Apps and the App Store℠.

Finding Described TV Just Got Much Easier
AFB recently launched Described TV Listings, a new, web-based search tool that helps people with vision loss quickly find described TV programming in their area. It helps people who are blind or visually impaired more easily follow what’s happening on the screen by providing a verbal description of the action and visual elements of a TV show. To use AFB’s described TV listings, visit AFB.org/TV, select “Described TV Listings” and enter your zip code, cable provider, a date and time. Visit AFB.org/TV to learn which programs are being described and when they will air. Thank you to the Rovi Corporation and Comcast for helping AFB to make this much-needed tool a reality.

Health and Well-Being Surveillance Survey

The University of South Carolina School of Medicine is
looking for 15- to 24-year-olds who have Spina Bifida, Muscular Dystrophy or Fragile X Syndrome who are willing to tell about their school, work, family and community life in an online survey.  Send this survey link (http://svy.mk/16i4693) to your organization’s membership network! Contact Margaret Holland with questions.

Upcoming Webinars

ASTHO Webinar on Increasing Physical Activity in the Built Environment

ASTHO LogoOn June 25 at 2pm ET, the Association of State and Territorial Health Officials (ASTHO), with support from the HHS Office of Disease Prevention and Health Promotion, will host the third webinar of the Physical Activity Guidelines Webinar Series. This webinar will provide an overview of intervention strategies that have been shown to be effective in the built environment and community setting from the Physical Activity Guidelines for Americans Midcourse Report. Access the webinar series archive and other related resources here. Click here to register.

Upcoming NACCHO Webinars

Know, Grow, and Eat Your Vegetables: Increasing Access to Healthier Foods Among Individuals with Intellectual and Developmental Disabilities
The Know, Grow, and Eat Your Vegetables program in Schenectady County, New York, was developed to address obesity and other related health burdens disproportionately faced by people with intellectual and developmental disabilities. Join this webinaNACCHO Logor on June 19 at 2:00 pm ET to learn about this collaboration between Schenectady County Public Health Services and Schenectady ARC, which was recognized as a Model Practice by the National Association of County and City Health Officials (NACCHO) in 2012. Click here to register!

Wellness for Every Body: Training for Staff Who Support Individuals with Intellectual and Developmental Disabilities
Obesity is a public health epidemic, and the crisis is worse for people with disabilities, who are 58% more likely to be obese than people without disabilities. To address this problem, Hennepin County Human Services and Public Health Department developed Wellness for Every Body (WFEB), an online training program for direct service providers. Join NACCHO and Hennepin County Public Health on June 25, 2 pm ET, to learn about this program and how you can use it in your jurisdiction. Click here to register!

The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD)in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. For any questions regarding this edition or previous editions please contact Tory Christensen

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