Let us consider the proposed FY 2013 budget for newborn screening programs under the Maternal and Child Health Bureau (MCHB). The funding for Heritable Disorders programs would remain at the same level as FY 2012, which is $9,834,000. Funding for the Clearinghouse (Baby’s First Test) is authorized through the Newborn Screening Saves Lives Act (H.R. 3825, S. 1858 http://www.babysfirsttest.org/newborn-screening-legislation) The funding level is expected to remain the same. In justifying the costs to Congress, the Department of Health and Human Services identified three purposes of Baby’s First Test, the nation’s clearinghouse on newborn screening education (http://www.babysfirsttest.org/newborn-screening-legislation):

1.) Increases awareness, knowledge, and understanding of all stakeholders, including industry representatives and the broader public

2.) Increases awareness, knowledge, and understanding of NBS services and diseases that are screened, and

3.) Links the National Newborn Screening Information System’s public site, which contains newborn screening performance data based on quality indicators.

In addition, the budget also calls for the continual funding of the Secretary Advisory Committee on Heritable Disorders in Newborn and Children (SACHDNC). As noted within the budget proposal, a cut in the funding would have prevented the committee from fulfilling its legislative mandates. Recall that some of the mandates include establishing methods for measuring the quality of newborn screening programs as well as harmonizing newborn screening standards across all states. SACDHNC would not be able to accomplish these mandates with a reduction in its budget. The funding for both the Regional Genetic & Newborn Screening Services Collaborative and Critical Congenital Heart Disease (CCHD) programs would also continue. The continual funding of CCHD programs at state and local public health laboratories is especially crucial as these laboratories are seeking to incorporate or enhance CCHD screening. Agencies receiving funding would also be able to develop CCHD education material! s for parents and health professionals and establish a health IT system to coordinate CCHD treatment. Under the President’s budget, the number of grant awards would remain at 13, with the average award being $612,000.

The funding for the James T. Walsh Universal Newborn Hearing Screening program, which is also under MCHB, would be held at the same level as FY 2012 ($18,660,000). This funding request is certainly justifiable given the program’s proven track record. It was originally started in FY 2000. By 2005, 95% of newborns were screened prior to hospital discharge. In 2009, the rate was 97%. For FY 2013, the target goal is 98%, which is the same as FY 2012.

Overall, MCHB would receive an increase of $46,452,000 in its budget compared to FY 2012. The majority of the programs within this Bureau (i.e. Heritable Disorders) would remain at the same level, as mentioned above. The main contributor to the increase in MCHB funding is the Maternal, Infant and Early Childhood Visiting Program. In conclusion, the funding of newborn screening programs within MCHB will remain at their current levels. We are appreciative of the fact that administrators are committed to ensuring the continuation of these successful programs. Hopefully Congress will also come to the same conclusion when they vote for this proposed budget.

To read the proposed FY 2013 budget, please visit http://www.hrsa.gov/about/budget/index.html

For more information visit http://www.babysfirsttest.org/blog or email Natasah Bonhomme at nbonhomme@geneticalliance.org

One of the things I get most excited about is the AMCHP annual conference. Go Beyond’s relationship with AMCHP has become one of the most important aspects of our company foundation. I cannot think of any other resource or relationship that we have that contributes more to keeping us on point or that better helps us define our vision and mission to be an innovator of maternal child and family health information and technology.

It has been our honor for the last three years to sponsor the MacQueen award event. The celebration of the opening of the conference, the largeness, energy and anticipation, great entertainment and the prestige of the MacQueen award to an exceptional person of marked accomplishment is, at least to me, an awesome experience. This of course is enhanced by the enthusiasm of Mike and his great staff and the overall quality of the conference. And as usual, Mike gave great kudos to Go Beyond and asked me to stand up for recognition. When I stood up and looked back at the crowd of the finest MCH professionals in our society frankly I was a little intimidated. I asked myself “What am I doing here? I am not an MCH professional and what are we really doing to make a difference?”

I thought about this a lot through the night and into the next day. As the day went along I began to loose track of the “thank you’s, you’re doing a great job, you are on the right track.” And then it became very clear to me how all of this works and what it is all about. I reminded myself that Go Beyond came into AMCHP so that we could be close to the thought leaders in the MCH world. We needed to learn what was really happening from the source – the good, bad and the ugly – so that we would be able to better understand what contribution we may be able to make.

Going back to what I was feeling during the MacQueen shout out to Go Beyond there was also a great feeling of pride and belonging. It was clear to me that I am part of something really big and really important. I believe that when this happens and we are all connected to the thought of this and we understand that if we are all thinking about this together we are all in fact the thought leaders. When I then look at my organization and what we are doing today I am very happy that I can see the obvious influence of AMCHP and the input of all of the friends that we have made and how this has changed what we are now compared to what we were when we first became part of this thought process. We have learned so much and we are more focused than ever on the work we must do because of this experience.

Does any one else feel like there was a special energy and messsage at the 2012 conference? Are we getting more focused on what we all need to do together? Share your thoughts throughout the National MCH Conversation and as always, join us anytime in sharing best practices, accomplishments, events and more!

The scholarship was created by Realityworks and Go Beyond MCH to provide the opportunity for one graduate student to attend the AMCHP annual conference. The scholarship also provides funds towards tuition.

“We feel that education and connecting with existing leaders is key to the future success of any individual studying within the field of MCH. Housing this scholarship with AMCHP, the premier MCH association, provides the most opportunity for students,” said Allan Stamm, CEO of Go Beyond MCH. “Working with Realityworks was a natural step. Timm Boettcher and his entire team are dedicated to pursing the best outcomes in MCH through innovation and education.”

“We are proud to partner with AMCHP and Go Beyond to give this opportunity for an emerging leader in the maternal and child health arena,” said Timmothy Boettcher, President of Realityworks. “Ms. Eden is an ideal winner for the graduate scholarship as her works show she is a passionate and enthusiastic maternal and child health advocate.”

The scholarship will be presented to Aimee Eden at the 2012 AMCHP Annual Conference on Tuesday, February 14th, 2012 during the general session luncheon. The Association of Maternal and Child Health Programs (AMCHP) is a national resource, partner and advocate for state public health leaders and other working to improve the health of women, children, you and families, including those with special health care needs.

About Go Beyond MCH

Go Beyond MCH is an information and technology company that combines innovation and collaboration in order to develop solutions that strategically align the efforts and goals of maternal child and family health programs. Their most popular software solution, the Well Family System, WFS, is a next generation web-based maternal child and family health program and case management system. WFS is designed so that a single program can stand alone or coexist with other local and state programs as a collaborative enterprise. We understand, advocate and support the mission of our clients and the MCH industry as a whole. For additional information contact Brittany Love at Brittany@GoBeyondMCH.com. Learn more at http://www.GoBeyondMCH.com.

About Realityworks, Inc.

Realityworks, Inc. is the leader in experiential learning technology – providing life-changing, interactive educational products since 1994. Its award-winning programs provide students with realistic learning experiences, and are used by educators in Career and Technical Education, Family and Consumer Science and Health courses, as well as in other instructional settings worldwide. For more information, visitwww.realityworks.com, or call toll free at 1-800-830-1416.

Brittany Love

Go Beyond MCH

850-894-1754

Brittany@GoBeyondMCH.com

www.GoBeyondMCH.com

]]> http://www.gobeyondmch.com/realityworks-and-go-beyond-mch-team-up-with-amchp-sponsor-scholarship/feed/ 0 http://www.gobeyondmch.com/2012-amchp-annual-conference-bucket-list/ http://www.gobeyondmch.com/2012-amchp-annual-conference-bucket-list/#comments Wed, 08 Feb 2012 20:37:47 +0000 admin http://www.gobeyondmch.com/?p=803 Read More]]> We love attending the AMCHP Annual Conferences. It is four days of non-stop learning, advocacy and valuable networking. This is our fifth year attending so we thought we would make a 2012 AMCHP Annual Conference “bucket list” of our favorite things to do. Don’t worry, if you aren’t attending you can follow all the excitement on Twitter by searching for the hashtag #AMCHP12.

1. Download the 2012 AMCHP App

You can view the entire conference schedule right at your fingertips. No more paper to misplace, it is all on your smartphone, laptop or tablet! We really like that you can make your own schedule – that way you won’t forget a session you wanted to attend. If this is your first time using an app for a conference AMCHP has step by step instructions for you here on page 7. Download the App HERE. Hint: Look for the Go Beyond Logo!

2. Take Your MCH Program to the Next Level

Stop by our booth #48 to learn how you can take your MCH program to the next level using the Well Family Evidence Based System. We focus on collaboration, workflow automation and evaluation of outcomes to save your program precious resources and time. You can learn more about the Well Family Evidence Based System before you visit by checking it out here. We will also have a some neatgiveaways to keep the technology on your desk organized – you won’t want to miss out!

 3. Attend the John C. MacQueen Memorial Lecture

Get the conference started off on the right foot by attending this luncheon in memorial of the ever innovative John C. MacQueen. We are honored to sponsor this luncheonon Sunday, February 12th, 2012 for the third year in a row. This year’s MacQueen Award winner is Gail Christopher, DN, Vice President of Program Strategy at the W.K. Kellogg Foundation. You can learn more about the history of the award here on page 17 and make sure not miss her inspirational lecture!

 4. Meet the Realityworks and Go Beyond and MCH Scholarship Winner  

This year at the 2012 AMCHP Annual Conference Aimee Eden, a doctoral candidate at the University of South Florida and adjunct professor of anthropology at Eckerd College, will receive the new graduate student scholarship. We will have a meet up at our booth so you can stop by and introduce yourself to Aimee and learn more about her work. To find out meet up times follow @GoBeyondMCH, @Realityworks and@DC_AMCHP on Twitter. We will also be filming a Q&A session with Aimee Eden and CEO of AMCHP, Michael Frasier, PhD, CAE, so make sure to subscribe to us on YouTube!

5. Attend the Knowledge Cafes

This was new last year to the conference and it was such a great addition. Monday morning at 8:30am you can join like-minded individuals for creative and idea-generating discussions. There is an insert in your conference bag with details of the topics covered. We really enjoyed meeting new people and were able to gain new friendship within the MCH world from these morning chats!

Enjoy this 2012 AMCHP Conference Bucket List and we hope to see you there!

Federal Advocacy:

• Advocating for high-value policies, standards and legislative language that emphasize solutions for public health reporting of newborn-screened conditions in federal technology programs.

• Working with congressional members to protect and enhance funding for vital public health initiatives, including maternal and child health programs, newborn screenings (Newborn Screening Saves Lives Act), education, outreach, follow-up care, quality assurance and care coordination that improve outcomes and reduce disparities for infants.

• Continuing collaborating with HRSA and federal advisory committees on implementation of routine pulse oximetry screening for CCHD and additional critical newborn public health initiatives.

• Working directly with the Office of the National Coordinator (ONC) to accelerate Health IT standards development and provider adoption of technologies that impact newborn health and outcomes.

• Ongoing direct engagement with the provider, public health and vendor communities to support research, technologies, and programs that improve newborn access to quality care while reducing costs through the use of technologies.

• Reducing barriers to the development, market readiness and deployment of health technologies.

• Convening thought leaders and key decision makers on Capitol Hill and with the Administration to raise visibility and promote the use of technologies in newborn health.

State Advocacy:

• Working directly with states to tailor model-legislation that will create a solid foundation for CCHD screening and reporting, leveraging health IT as a key component of implementation.

• Working with state Departments of Health to assess existing technological capacity and help advocate for appropriate changes that will facilitate scalable results reporting and follow-up.

• Developing executing on health IT-centered pilot projects focused on the development and implementation of a newborn electronic health record; an open-source, online knowledge hub for newborn screening for heart defects; state-based vital statistics repositories; state-readiness implementation roadmaps; electronically integrated SSA newborn disability eligibility; and a newborn critical care and access mapping project.

Share your advocacy efforts and initiatives by submitting them to our blog!

Information and Picture Source: http://rushprnews.com/2012/01/27/newborn-coalition-announces-policy-priorities

While America is not the “best” statistically it is dramatically better than many other countries when it comes to the chances of a woman surviving childbirth. Every day 1,000 women die in childbirth. That is 358,000 women each year. In one segment Sawyer points out that $3 can save a mother in another country. A new father in the US instantly grabs his wallet and hands Sawyer all of the cash he has on hand. His wife gave birth to a healthy daughter without any complications.

The international non-profit organization that is featured is JHPEIGO. The organization is affiliated with The Johns Hopkins University. and has reached women in over 150 countries to prevent maternal mortality and protect families.

Visit the ABC website and view the full article and watch all the segments by Sawyer on Maternal Mortality.

Video and Picture Source: ABC 20/20

Baby’s First Test is the nation’s newborn screening education center for families and providers. This site provides information and resources about screening at the local, state, and national levels and serves as the clearinghouse for newborn screening information. This is an objective resource dedicated to educating parents, health professionals, and the public about the newborn screening system. This site also provides many ways for people to connect and share their viewpoints and questions about newborn screening.

By establishing a collection of educational information in a single place, BabysFirstTest.org is a one-stop shop that:

• Increases awareness and understanding of newborn screening for expectant and new parents, health professionals, industry representatives, and the public;
• Connects state and regional public health groups;
• Facilitates data and resource sharing; and
• Responds to emerging technologies and corresponding public health challenges.

On BabysFirstTest.org you can find:

• Basic facts about newborn screening and what to expect from the newborn screening process;
• State-specific newborn screening program information for parents and health professionals, including conditions on state panels, state program contacts, and support resources;
• Condition-specific information, including causes, treatment, and family experiences;
• Social media features, such as micro-blogging through Twitter and videos; and
• An interactive blog that provides an open space for users to learn from one another and explore opportunities in education and policy.

Learn more on their website and connect with them on Facebook and Twitter today!

The Art Gallery

“From sculpture to photography, drawing, and painting, artists around the world are using their creative talents to express their thoughts, feelings, experiences, and observations related to motherhood. Explore this inspiring, vibrant selection of artwork featured in the MAMA: Motherhood Around the Globe art gallery!”

The Story Gallery

Stories of childbirth, motherhood and more from women authors around the globe.  You can read 7 beautifully written stories directly from the website or you can purchase them for download to your favorite e-reader/tablet. When you chose that option you do get 3 bonus stories and all the accompanying illustrations.

Vote for the Community Choice Award

This is the hard part. Every story and every voice is so telling but ultimately there will be one story that resonates with you the most. The winner will receive $1000 – $500 to  keep and $500 to their non-profit of choice.

Sign the Pledge

“Every 90 seconds a woman dies from complications of pregnancy and childbirth. You can help reverse these shocking statistics. Sign the pledge to help reduce needless deaths and ensure healthy outcomes for women worldwide.”

Explore “Mama to Be?” Exhibition

“How many women in the world actually have an opportunity to decide if, how, and when to create a family? What are the reasons that women today are choosing – or refusing to choose – motherhood? Explore the Mama to Be? gallery and find out.

Read BIG IDEAS from thought leaders around the globe, meet HEROES working on behalf of women and mothers, experience creative work from our global community in YOUR VOICES, and more!”

Tell Us: Which part of this online exhibition did you find the most moving?

Photo and Quote Source: International Museum of Women

What was the most challenging step in moving towards the Community Café Model?

It was an entire paradigm shift. At all levels of staffing we interacted with families in a new way. We were often out of our comfort zones. More importantly, we learned and continue to learn from the instant feedback of the individuals in the cafes. We don’t wait for survey results, we are involved in the community on a more interactive level than I have ever thought possible.

What did your program model(s) look like before the Community Cafes?

The previous model was traditional. It was set up the way most communities are. Families would visit agencies based on the services they needed. The families were more like passive observers following a plan given to them from multiple agencies. From the perspective of the agency staff we were somewhat isolated from other agencies even though we were oftentimes working with the same families and towards the same goals. We didn’t have the resource capacity to get the job done in all instances because we were duplicating services within communities. Each program or agency was tracking their own data and their own outcomes. Very little collaboration or formation of partnerships. (Resource: Model of Previous Program)

What does your community café model look like?

Now, at the center of everything, is the community. Many services are available on site. If an individual or a family needs to be referred outside of the café we are still able to track them through the Well Family System. All of our partners are working within the same data system. We are able to track social connections, family members and most importantly the core of the café is aligned with local state and federal recommendations.

Families are now equal partners in their care plans – in creating them and following through their care. The families have a voice in their care – they know the café staff and interact with them on a very regular basis. They have direct access to support.

Agencies are now able to seek solutions with the families. There is the ability to get through all of the “to-do” lists of the day because we are not duplicating efforts. We are able to better follow up and evaluate the results of the café and the family care plans because the families are there with us. (Resource: Community Cafe Model, Concept and Program Outline)

Who staffs the community cafes?

Right now we have one site open – the PYRAMID Community Café – with plans to open two more cafes in the coming months. We have family counselors on staff. They are professionals with training in the Parents as Teachers curriculum, the Parenting Wisely curriculum and the Parents on a Mission Peer Advocate certification, on top of their Bachelor’s and/or Master’s.

Most importantly, though, are the Peer Advocates and Community Café Members. The Peer Advocates are individuals who came to the café for services and have proven themselves to be leaders among their peers. They receive training, fingerprinting, regular reviews and incentives for their work in the cafes. The community café members are asked to bring skills and talents to the table as well. They become an active member and contributor to the community café. They sign a “Partner Pledge” and that is part of what we monitor and use to measure outcomes.

How has family ownership changed the café?

There is a feeling of empowerment and pride among the peer advocates and café members. There is this idea that people want “handouts.” We have seen that that is not the case. People want to feel as though they are contributing to their community and to their family. Because we require people to share their skills and regularly help others in the program we see that it becomes second nature. We have more dads involved all the time. We even had one dad who was unemployed and helped the café by sharing his talent of cooking. He was recently hired by another community program and is now proud to work full time to provide for his family. And yes, he still works to help others, even though he no longer needs help, as a peer advocate.

What have been the favored outcomes thus far?

There is an energy that comes with working in the café. We are not duplicating services and we can see on a first-hand basis the improvements and bettering of lives within our community. It is rewarding on a new level and we are able to reach more and more people every day.

How are you measuring the outcomes?

Everything now is evidence based. We have a variety of measurements but most importantly are the outcomes driven by the families themselves. First we have the Protective Factors Survey. This measures the ability for parents to deal with day-to-day stressors and support the needs of their children. These surveys are filled out by all new members and re-administered in 6 month increments to measure effectiveness of interventions. We also measure peer advocates, individual family plans, demographics and stats from the Daily Log Sheet of each café and more.

Why did you choose Well Family System?

The Well Family System was already built with the idea of collaboration and sharing of data in mind. It was ready for evidence based data within a setting of multiple programs sharing one system. We were also able to – and still do – work to add more intuitive features to the program. And what really sealed the deal was the ability to build a component for the families to self refer themselves. We are going to have computers available to community café members so they can actively monitor their own care plans and adjust them as needed. There is also the component of the accounting abilities and work-flow management abilities of Well Family System that made this the obvious solution. (Resource Available by cssp.org: Strengthening Familes as Platform for Collaboration)

What is next for the Community Cafes?

We already are working on integrating in more programs. And we are taking everything to the level of community ownership. For example we have the Lifesong Project. This is a program that teaches health and empowers women and men to have knowledge about parenthood, infant mortality and health in general through positive interactions. The program is centered on song, dance and art and is driven by local churches and community organizations. Many people participate and are able to find out about services, including the community cafes, when otherwise they may not have been reached. Our overall goal is to incorporate these results into the Well Family System so we can add another layer of data to our outcomes. (Resource: LifeSong Model)

You can learn more about the Community Cafes on the Healthy Start of Flagler and Volusia Counties, Inc Website. You can also view video interviews with Dixie Morgese on our YouTube Channel!

Learn more about the Well Family System.