The Whole is Greater than the Parts- Friends Together.

The Whole is Greater than the Parts-Friends Together

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The Whole is Greater than the Parts - Friends Together

Champions: Making a Difference Across the Lifespan


Service Recognition


Overview of the Center Thematic Areas: Accomplishments and Future Directions

Coleen Boyle, Director, National Center on Birth Defects and Developmental Disabilities


Centers for Disease Control and Prevention

National Center on Birth Defects and Developmental Disabilities

National Center on Birth Defects and

Developmental Disabilities

From beginning to end, a better life for all.

Coleen A. Boyle, PhD, MSHygDirector

NCBDDDFrom beginning to end, a better

life for all

Established by the Children’s Health Act of 2000 Our mission is to promote the health of babies,

children and adults and to enhance the potential for full, productive living. Everyday, we work toward that mission:

Our efforts impact millions of our nation’s

most vulnerable

1 in 33 babies is born with a birth defect

1 in 5 Americans has a disability

Approximately 13% of children younger than 18 are affected by a developmental disability

People with sickle cell disease have a life expectancy 30 years shorter than average

Public Health System

Source: Public Health Practice Program Office, Centers for Disease Control and Prevention, National Public Health Performance Standards Program, User Guide (first edition), 2002. (Current version available at www.cdc.gov/nphsp)

THE PUBLIC HEALTH APPROACH

SurveillanceWhat’s the problem?

Risk Factor IdentificationWhat’s the

cause?

Intervention Evaluation

What works?

Implementation

How is it done?

THEMATIC FOCUS AREAS

NCBDDD ACCOMPLISHMENTS

BD-STEPS: Funded six research centers across the United States to collaborate and collect data, starting with children born in 2014.

Treating for Two: Collaborated with federal and external partners to develop a national strategy to improve the health of mothers and babies through better research, reliable guidance, and informed decisions related to safer medication use in pregnancy. • Launched new Treating for Two website

Advanced global neural tube defects prevention efforts through Birth Defects COUNT.

Released unique data and created new tools to prevent risky alcohol use for all adults, including pregnant women.

Select Accomplishments by Area

Select Accomplishments by Area Released new prevalence estimates from the Autism and Developmental

Disabilities Monitoring (ADDM) Network indicating that about 1 in 68 eight-year-old children living in multiple communities in 2010 were identified with ASD.

Promoted developmental monitoring and screening to help children with developmental delays be identified as early as possible.• Learn the Signs. Act Early.• Birth to 5: Watch Me Thrive!• Watch Me! Celebrating Milestones and Sharing Concerns

Supported champions in communities across the United States to raise awareness of ASD and take action to help children• ADDM Network Community Report

Launched a “Webinar Series on Bleeding and Clotting Disorders” Launched website on Vitamin K Deficiency Bleeding to increase parent and

provider understanding of the importance of vitamin K shots for newborns. Published new surveillance report to disseminate information collected by

the Universal Data Collection system (2005 – 2009).• report contains information about the demographic characteristics of

the participants, their blood and factor product use, and the occurrence and treatment of joint and infectious diseases.

Published the results of a six-year study, called the Hemophilia Inhibitor Research Study (HIRS)

Published an article describing efforts of states participating in Registry and Surveillance System for Hemoglobinopathies (RuSH) and federal agencies to design the project and the methods used to collect data for the system.


Launched a nationwide report on adults with disabilities and physical activity. CDC’s Vital Signs™ : “Adults with Disabilities – Physical Activity is for Everybody”

Updated Disability and Health Data System (DHDS) to include the latest data on key health indicators and provide new ways to see data.

Increased public health capacity in 18 states using the Disability and Health Network to plan, prepare and include people with disabilities in health-protecting programs and services.

Published an important scientific article, which documented for the first time that adults with specific types of disabilities are more likely to have measured high blood pressure compared with adults without disabilities.


FUTURE DIRECTIONS

NCBDDD’s Strategic Health Initiatives

NCBDDD has launched three Strategic Health Initiatives (SHIs) in order to accelerate our Center’s impact around three key public health topics: • Treating for Two - to prevent birth defects through safer

use of medication during pregnancy• Prevention of Healthcare Associated Venous

Thromboembolism - to prevent a serious blood clot • Aligning practice with best science for the treatment of

Attention-Deficit/Hyperactivity Disorder (ADHD) in Young Children - to reduce the number of preschoolers who get medication before behavioral therapy

Treating for Two:Safer Medication Use in Pregnancy

The Problem: we know that many doctors and women face uncertainty about using medication during pregnancy.

But, we know safer medication use in pregnancy will lead to healthier pregnancies and healthier babies through better research, reliable guidance, and informed decisions.

Healthcare-Associated Venous Thromboembolism (VTE)

The Problem: Patients who are currently or recently hospitalized, recovering from surgery, being treated for cancer, or on bed rest, have an increased risk of developing serious and potentially deadly blood clots in the form of venous thromboembolism (VTE).

But, we know that 70% of health care associated VTEs are preventable and that evidence based interventions will reduce the number of post-surgical patients who die from blood clots.

Attention-Deficit/Hyperactivity Disorder (ADHD)

The Problem: Research suggests that current medical guidelines are not being followed for treating very young children diagnosed with ADHD

But, we know that behavioral therapy treatment for ADHD is a first-line treatment that can safely and effectively treat ADHD symptoms in young children.

Action in Progress We are building strong coalitions of support around our SHIs

with medical and professional organizations, health care systems, federal agencies, and public and private sector.

Together we are taking action-- and our work is only just beginning.

There is much work to be done and we can’t stop here. With your help we can improve the health of those we serve.

Questions?

National Center on Birth Defects and Developmental Disabilities

Strategic Health Initiatives: Your Feedback

Betsy Mitchell, Associate Director for Communication Science


Friends Strategy Update Panel

Communication Committee – Beverly Robertson, March of Dimes

Advocacy Coalition, Annie Acosta, The ARCFamily Outreach, Lynda Honberg, Family Voices



Communication Committee – Beverly Robertson,

March of Dimes


Review of Communications Committee Charge

This is a standing subcommittee of the Friends of NCBDDD Specific charges for the committee include:-highlight existing resources-create a communication strategy plan-encourage self-promotion of Friends members to foster collaboration


Review of Communications Committee Charge

Existing Friends communication efforts include: monthly e-newsletter, website, national listserv, twitter hash tag #FriendsNCBDDD, and tweets through Chair’s account (@adrianegriffen)


2015 Communications Strategy Goals:

1. Increase awareness of NCBDDD at CDC and public health agencies2. Increase awareness of how your organization plays a role in public health3. Increase communication with others beyond members of the Friends


2015 Communications Strategy Audiences:

1. Policy Makers2. Families and people with a disability3. NGOs



Advocacy Coalition, Annie Acosta, The ARC


Nov 12, 2014

• History & Membership• Looking ahead• 2015 activities• Challenges & opportunities• Messaging• Information sharing

History & Membership

• Advocacy Coalition created in 2011• Coalesced in 2012 around proposed

consolidation of funding lines• Participation is open to any organization

that shares our mission to support the NCBDDD

• See membership directory

https://docs.google.com/spreadsheet/ccc?key=0AtsF6m1qD5FldFMxc1lHRUlyNURHb0tTZzlHaDZUUnc&usp=drive_web#gid=0

I Child Health & Development * Birth Defects * Craniofacial malformations (non-add) * Fetal Death (non-add) * Fetal Alcohol Syndrome * Folic Acid * Infant Health * AutismII Health and Development with Disability * Disability and Health (includes Child Dev studies) * Limb Loss * Tourette's Syndrome * Early Hearing Detection and Intervention (EHDI) * Muscular Dystrophy * Paralysis Resource Center * Attention Deficit Hyperactivity Resource Center * Fragile X * Spina Bifida * Congenital Heart FailureIII Public Health Approaches to Blood Disorders * Hemophilia CDC activities (non-add) * Hemophelia Treatment Centers * Thalassemia (non-add)

NCB

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2015 ActivitiesGOAL: Restore lost fundingObjective: Cultivate champions• Personal interest in PH and/or BD/disability• NCBDDD funded programs in district/state• Connection to other priorities (e.g. ACA)

Tactics: • OMB meeting• Congressional Briefing (TBD)• Member meetings• Appropriations Committee staff meetings

Recent Feedback from Hill & OMB

• What is the ROI? • More specific program examples &

outcomes are needed.• What is likelihood of programs/

interventions being taken up by public health delivery system?• i.e How are we changing practice?

Challenges• Sequestration

relief ends in FY 2016• Disproportionate

reliance of PPHF• Deficit reduction

• Increased interest/visibility of public health• New members/

Committee members

Opportunities

“Elevator Talking Points” for The NCBDDD:

• is the only place in the federal government that takes a public health approach to birth defects & disability• It does not duplicate the work of other agencies.• Public health is the science and art of preventing disease, prolonging

life and promoting health and efficiency through organized community effort.

• addresses a wide range of disabilities and conditions that affect over 50 million Americans • It is not condition specific.• Americans living with a disability are the largest minority in the U.S.

• conducts surveillance, prevention, and intervention activities such as:• counting the number of children with autism• educating health medical professionals about blood clots• screening people with intellectual disabilities for health problems

• The funding for the Center is small - $122 M. It has been cut by 15% since 2010.

Targeted Messages

NCBDDD is vital to the ACA

Specialized knowledge of people with greatest health care needs & usage

Role in complementing and providing “wrap around” public health services

Surveillance Provider education Linkages to clinical trials Policy changes (e.g., accessibility)

NCBDDD works extensively through private sector network:

• Leverages funding by supporting non-profit organizations that are primarily privately funded (individual donations/dues/ membership/)

We Must Work Together1) Share information:

a) on what we do in common. E.g.:# providers trained# materials developed# information & referral requests handled# of clinical trials/research projects recruited for

b) champions/supporters in Congress c) opportunities to educate members collectively

2) Contributea) help sponsor, organize Hill briefing

3) Participatea) in other advocacy coalition activities


Family Outreach, Lynda Honberg, Family Voices


Work Groups by Thematic Area:Working meeting with Champions and Center leadership 1. Saving babies through birth defects prevention and research 2. Helping children live to the fullest by understanding autism and other developmental disabilities 3. Protecting people and preventing complications of blood disorders 4. Improving the health of people with disabilities


Appreciative UnderstandingEvery idea or possible solution has both

positives and drawbacks. With appreciative understanding, we identify both.


Appreciative UnderstandingStep 1) Identify Positives:

I appreciate that because…I like that because…

I echo that because…


Appreciative UnderstandingStep 2) Identify Drawbacks

I disagree with that because…I don’t like that because…

I think we might need to work on…


Appreciative UnderstandingRemember to take notes from your colleagues on

1) Positives2) Drawbacks


Work Groups by Thematic Area:Step 1: Select Your Thematic Focus AreaStep 2: AudiencesStep 3: Goal areaStep 4: Target areas under selected goalStep 5: Define a short term win: Something that Friends can achieve together in the next 6 monthsStep 6: Define action plan of how Friends might work on this together


Work Groups by Thematic Area:Working meeting with Champions and Center leadership 1. Saving babies through birth defects prevention and research 2. Helping children live to the fullest by understanding autism and other developmental disabilities 3. Protecting people and preventing complications of blood disorders 4. Improving the health of people with disabilities


Appreciative UnderstandingRemember to take notes from your colleagues on

1) Positives2) Drawbacks


Next Steps


The Whole is Greater than the Parts- Friends Together.

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Transcript of The Whole is Greater than the Parts- Friends Together.