October 2012

October 29, 2012

October 29, 2012: Download a Printable Version here.

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Feature Story: Family Voices Partners in a Twitter Chat on Flu Prevention

Family Leadership in the States:

Legislative Corner: Washington Update

From Our Partners:

News You Can Use

What's New with Family Voices:

Family Voices Partners in a Twitter Chat on Flu Prevention

Teaching Children About the Flu & Other Family Resources from CDCFamily Voices participated in a recent twitter chat with CDC, American Academy of Pediatrics, and Families Fighting Flu. This activity, focused on flu prevention for children with high risk conditions, reached an estimated 1.6 million people. A twitter chat on flu prevention for children with high risk conditions reached an estimated 1.6 million people. Dr. Georgina Peacock, of CDC’s National Center on Birth Defects and Developmental Disorders, stated, “The American Academy of Pediatrics, Families Fighting Flu, and Family Voices were all natural partners when we thought about how to reach as many key people as possible with this message [on increasing awareness about flu prevention and treatment in children with neurologic disorders]. The collaboration and energy around this effort has been fabulous.”

What is a “Twitter chat”? The way a Twitter chat works is that a collection of organizations and people with Twitter accounts get together for a virtual conversation on a particular topic. The chat is publicized through each of the organizations’ networks. Information is “tweeted” and “retweeted” by the co-presenters during the chat. Questions from participants are also answered, and those answers are retweeted by presenters and participants as well.Because each presenter has his or her own set of followers, and those followers can retweet the information to their followers, the information can potentially be distributed very widely through the virtual network.

Such was the case with this Twitter Chat. Joined by representatives of governmental agencies, health departments, and others, presenters and participants tweeted a total of 814 Tweets, including 553 retweets (posts retweeted in the conversation), and 261 Mentions (not retweets). CDC provided analysis of the chat, noting that the potential reach (those potentially exposed to the twitter content) of this particular chat was an astounding 12,276,004! Even adjusting for people receiving multiple tweets, the potential reach was estimated at over 1.6 million.

CDC’s Director, Dr. Thomas R. Frieden, added, “Partnering with the American Academy of Pediatrics, influenza advocacy groups, and family-led organizations CAN help prevent influenza in children at highest risk.”

Lynn Pedraza, Executive Director of Family Voices and a parent of children with special needs said, “It’s frightening to think that flu can potentially lead to so many complications or even death. We are pleased to join with the Centers for Disease Control and others in efforts to educate families and providers about the importance of prevention and treatment.”

Read more about this partnership and Twitter chat. Read more about the 2012-2013 Flu Season.

Family Leadership in the States

Family Leadership in the States

Fostering Family and Professional Partnerships: Family Voices Serves on Expert Panel

This past summer, Family Voices sent a family representative to serve as an expert on a DELPHI Panel charged with developing new quality care measures and enhancing other measures for children’s health care across the age spectrum. A DELPHI Panel is a structured review of subject matter followed by discussion designed to reach consensus.

This panel, sponsored by the Center for Child Health, Behavior, and Development at Seattle Children’s Hospital Research Institute, is part of the Center of Excellence on Quality Care Measures for Children with Complex Needs (COE4CCN). The panel included 12 multi-disciplinary experts from various medical fields, including Jennifer Bolden Pitre, from New Jersey’s Statewide Parent Advocacy Network (SPAN).

Jennifer said, “Family Voices continues to seek and facilitate the contribution of the ‘parent voice’ to activities like the evidence-based DELPHI panel, which is an excellent example of reciprocal learning and partnership.”

Read more of Jennifer’s story about this DELPHI Panel.

Work and Family: Special Parent Heroes

Angeles LeonAndrea Leon is dedicated to providing care for her child, Angeles, diagnosed with spinal muscular atrophy (SMA). Through her state’s F2F, Parents Reaching Out (PRO), Andrea connected with and received help from another parent of a child with SMA. Andrea reflects on her experience: “Children like Angeles are typically expected to live a year and a half. Angeles is now nine and she’s doing great. I believe that Angeles would not be where she is and doing as well as she is today if we hadn’t received the information we did from the F2F HIC around resources that were available.”

As a result of the support she received from PRO, Andrea herself became a support parent at PRO and now coordinates the F2F at PRO. This willingness to “pay forward” the help received to assist other families is a frequent outcome when parents are provided with support and resources that empower them to balance work and home life, including the daily care of children with special health care needs.

Read more of Andrea’s story, as well as the story of another dedicated parent, Deepa Srinivasavaradan, from New Jersey.

Legislative Corner


Legislative Corner


Washington Update
When Congress returns for its “lame duck” session after the election, what will be on its agenda that affects health care? Of greatest urgency is the matter of “sequestration,” or automatic cuts in federal spending that will take effect in the new year unless the law is changed. Some in Congress are anxious to avoid the cuts in defense spending, while others are more concerned about cuts to “domestic discretionary” programs, including the Maternal and Child Health Block Grant and other health programs. (Medicaid, CHIP, Food Stamps, and Social Security are among the programs exempted from sequestration.)

It is possible that the lame duck Congress will simply pass legislation to delay the sequester, which the President would be expected to sign. Ultimately Congress plans to reduce federal spending (and thereby the deficit) through a “grand bargain” – a deal that involves changes to tax law, entitlements (of which Medicare, Medicaid, and Social Security are the biggest) and discretionary spending (all non-entitlement spending).

Medicaid: The Medicaid program will no doubt be the target of some budget-cutting proposals, most likely proposals to institute “per capita caps,” under which the federal government would give states a capped amount per Medicaid beneficiary, rather than an amount based on actual state expenditures. If used as a mechanism to decrease federal spending, the per capita caps will necessarily shift a greater portion of Medicaid costs to states. As the years go by, federal payment increases are not likely to keep pace with rising health care costs, and will not account for factors that disproportionally increase a state’s Medicaid expenditures, such as an aging population, higher unemployment, or a disease or addiction outbreak. As costs shift to states, they are likely to cut Medicaid benefits or payment rates, reducing access to care.

Family-to-Family Health Information Centers (F2Fs): Federal funding for F2Fs expired at the end of FY 2012 (September 30), although grantees have access to funds through May of 2013. Bills have been introduced in both the House and Senate (H.R. 4083 and S. 2123) that would extend funding for F2Fs at the current level of $5 million per year through FY 2015. Family Voices is working toward enactment of this legislation. It is possible that a large deficit reduction bill could serve as “vehicle” in which to include the F2F funding extension.

Contact Brooke Lehmann (Blehmann@familyvoices.org) or Janis Guerney (Jguerney@familyvoices.org) if you have any questions.

From Our National Partners

AMCHP: New Brief on Maternal and Child Oral Health Policy
The brief provides a review of research and evidence on perinatal dental care and is the product of a new collaboration between AMCHP, the Association of State and Territorial Dental Directors, March of Dimes, and Washington Dental Service Foundation: Improving the Oral Health of Pregnant Women and Young Children: Opportunities for Policymakers.

AMCHP: Health Reform: What is in it to Promote Breastfeeding?
his fact sheet summarizes the provisions of the Affordable Care Act that support breastfeeding

AAP: New Free e-Magazine for Parents!
HealthyChildren.org has launched a new e-magazine, Healthy Children, available online as a pdf or as an app for Apple and Android smartphones and tablets. The first issue highlightsback-to-school topics.

Genetic Alliance: 2013 Consumer Task Force on Newborn Screening
Genetic Alliance is looking for parents of children who have been affected by newborn screening, to join the 2013 Consumer Task Force on Newborn Screening. The 2013 program includes training and project implementation components. Task Force members will receive a $1500 stipend to apply towards the implementation of their projects as part of the Baby’s First Test national resource center. No previous newborn screening experience is required, only a desire to learn and improve the screening system. Applications are due November 2, 2012, at 6 PM EST

News  You Can Use

News You Can Use

New MCH Library Knowledge Path on Child and Adolescent Nutrition
A new listing of high quality resources that present evidence-based nutrition guidelines

First Lady Michelle Obama’s Let’s Move
Michelle Obama’s anti-obesity campaign is being expanded to encourage local elected officials to focus on improving the health of their communities.

National Report Card on Protecting Children during Disasters
A report from Save the Children outlining disaster preparedness and safety standards for children.

What's New with Family Voices

The second IMPACT webinar held recently provided fascinating insights from families into the thoughts, concerns, and creative solutions to improving the health and wellness of their children, including those with special health care needs. Using the framework and scripts provided by IMPACT staff and consultants, including trained focus group facilitator Barbara Popper, North Carolina and Utah Family Voices held family focus groups around six Bright Futures health and wellness themes: Physical Activity, Healthy Nutrition (conducted in Spanish), and Oral Health in North Carolina; Emotional Health and Wellness, Child Development, and Healthy Sexuality in Utah.

Marlyn Wells, Program Director of North Carolina Family Voices, and Gina Pola Money, Director of Utah Family Voices, described the sometimes poignant stories and ideas that the families shared, including:

  • Food, diet, and nutrition were recurring themes in all of the focus groups, regardless of the topic.
  • One family suggested raising vegetables and chickens as a way of encouraging their children to eat healthier foods by increasing their awareness of where food really comes from.
  • Talking about sexuality is a challenge for parents. Following the focus group, participants expressed interest in seeking additional information and resources from the other parents in the group.
  • A young man with cerebral palsy shared during the Healthy Sexuality focus group, “I wished my parents would have said something, anything about sexuality, because then that would have meant they thought it was possible.”

Access webinar recording & handouts

New Resources from the National Center for Family/Professional Partnerships 2012 Activities and Accomplishments of Family-to-Family Health Information Centers2012 Activities and Accomplishments of Family-to-Family Health Information Centers
A 76-page report summarizing the activities and accomplishments of F2F HICs from June 2010 through May 2011. Aggregated data on assistance and training provided by F2F HICs as well as other broader-scoped activities is included in this report along with descriptions of an exemplary activity from each F2F. State-by-state charts list the involvement of each F2F with specific initiatives and partners.





About the National Center for Family/Professional Partnerships2012 About the National Center for Family/Professional Partnerships
Learn more about how the NCFPP helps families of CYSHCN in this re-released short video.

Impact of the NCFPP on Programs and Services for Families of CYSHCNImpact of the NCFPP on Programs and Services for Families of CYSHCN
A 1-page handout of Examples of the work of the NCFPP with Family-to-Family Health Information Centers and other family leaders that impact components of systems of care for CYSHCN: Access, Equity, Quality, Integration, and Accountability.







October is National Family Caregivers Month.

October is National Family Caregivers Month Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.


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