June 2013

June 03, 2013

June 3, 2013: Download a Printable Version here.

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Feature Story: Keeping Families at the Center of the Medical Home

From the Kitchen Table: Americans Help Americans by Lynn Pedraza, Family Voices Executive Director

Legislative Corner: Washington Update

From Our Partners:

News You Can Use

What's New with Family Voices:

Keeping Families at the Center of the Medical Home
Nurse with toddler Family Partners across the country are helping pediatric practices implement medical home.  A Family Partner (who may be called a Family Resource Specialist, Parent Consultant or other names) is typically an experienced parent of a CYSHCN who provides family-to-family support to other families of children with special health care needs in the practice and who serves as an advisor to the practice regarding family-centered policies and approaches, community resources, and quality improvement.  Family Partners are in a unique position to contribute to the health care team because 1) they offer the consumer perspective on how practices work and where there might be opportunities for improvement; 2) they contribute a fresh, outside, practical view; and 3) they bring a wealth of relevant knowledge and experiences in navigating services and coordinating care, and are typically connected to networks of other family leaders and families. We recently asked two family leaders, Gina Pola-Money (Utah Family Voices Health Information Center) and Carolyn Allshouse (Family Voices of Minnesota) to share lessons learned from their experiences in working with Family Partners in pediatric practices:

  • Seek full physician and office buy-in for Family Partners. According to Gina, “If we don’t have everyone on board there isn’t a clear directive on what family partners can do.” Carolyn noted that “You can’t legislate attitudes!"
  • Training and orientation are key for both Family Partners and health care providers. FV Minnesota has held successful training conferences and have created a handout, Patients and Families Serving as Advisors.
  • Family Partners are most effective if they are available to other families and patients in the clinic setting. Families and patients are more likely to share concerns with a peer regarding challenges that may interfere with their ability to comply with treatment recommendations from the health care provider.
  • Family Partners who have significant medical experience often make the best partners - they understand the complexities of the health care system and the struggles that families may encounter. A transition plan that includes mentoring future family partners, especially in pediatric settings, is essential.
  • The Family Partner role in a practice should go beyond support to families and include participation in ongoing quality improvement discussions with the provider and office staff.

Contact Gina at Utah Family Voices or Carolyn at Family Voices of Minnesota to learn more about Family Partners.


From the Kitchen Table: Americans Help Americans
by Lynn Pedraza

Lynn Pedraza, Family Voices Executive Director

Recent events have cruelly reminded us of the adversity and tragedy that can unexpectedly jolt our lives. Whether it is nature that wreaks havoc on us, as it did in Oklahoma recently, or whether it is the nature of man that brings destruction, as happened at the Boston Marathon last month, for many individuals the cliché that “you’re not going to live your life unscathed” is neither warning nor consolation. What makes tragedy bearable is the help of others. Millions of dollars from strangers across the country have poured in to support these victims; communities have united to pool resources; neighbors shared meals; family members allow family members to grieve in their own ways. As New Jersey Gov. Chris Christy said recently while touring the areas destroyed by Hurricane Sandy, “Americans help Americans – that’s what we do.”

I personally experienced this recently when my husband suffered a serious heart attack. The friends and family members that comforted me gave me strength; the nurses and other professionals who provided guidance gave me confidence. I couldn’t help but reflect on the tragedy and adversity I know and have experienced along with other families of CSHCN. Every day across our nation, families are struggling to find a diagnosis, learning of a child’s prognosis, finding and paying for medical care, coordinating care, dealing with school, helping a child become an adolescent, striving to help a young adult reach independence – and, more sadly for others, facing the death of a child. These are not public tragedies, but help from others is critical for families of CSHCN. As Americans, we have the resources to provide this help through our Family Voices Network of State Affiliate Organizations and Family-to-Family Health Information Centers.

My promise to you is that I will do all that I can do to keep such programs funded. Please stay strong in this effort with me. We are all grateful for the work you do every day to help families in need.

Legislative Corner


Legislative Corner


Washington Update
Navigators, In-Person Assisters, Certified Application Counselors -- These are the entities conceptualized by the Centers for Medicare and Medicaid Services (CMS) for helping consumers navigate the Affordable Care Act (ACA). What are the respective roles do these play? If you are confused, you are not alone!

Health Care Insurance - Where do I go?The distinctions among these entities lie in the type of Exchange in which they operate (federally-run, state-run, or a state-federal partnership), their sources of funding, and training requirements. While the basic services offered will be similar, the distinctions may not be obvious to the consumer.

Under the ACA, “Navigators” are funded from Exchange revenues, but, since Exchanges will not be operational until after the Fall 2013 enrollment period, CMS created In-Person Assisters that can be funded earlier through Exchange Establishment grants. In states where the federal government will be operating the Exchange alone or in partnership with the state, Navigators will be funded directly by the federal government. These Navigator grantees will be trained and certified by October 1, when health plan enrollment under the ACA begins.

The term “Certified Application Counselor” (CAC) refers to individuals certified by their Exchange to perform many of the same functions performed by Navigators and In-Person Assisters, but they are funded by other sources, including Medicaid. CMS recently announced that it will provide grants to Community Health Centers so they can expand their consumer-assistance capacity. In some states, insurance agents and brokers may also provide navigator-type services after undergoing training and certification.

While questions still remain about how all of this will work, the federal government, states, and various private organizations are trying to ensure that qualified consumer assistance is widely available.

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



From Our National Partners

MCHB: Children and Youth with Special Healthcare Needs in Healthy People 2020: A CONSUMER PERSPECTIVE
A collaboration of the Genetic Alliance, Family Voices and MCHB, this document provides family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families.  It underscores the role of individuals, families, communities, government agencies such as MCHB, and other stakeholders in monitoring and implementing HP2020, including developmental objectives for CYSHCN.

National Center for Cultural Competence: Toolkit for Community Health Providers: Engaging Ethnic Media to Inform Communities about Safe Infant Sleep
This new toolkit is designed to help community health providers work with ethnic media to get information out about safe infant sleep. The information on approaches to media is important and relevant for more than just safe sleep campaigns.

AAP: New Guidance on Improving Oral Health in Children with Developmental Disabilities
This clinical report looks at the effect of poor oral health on children with developmental disabilities, as well as advocating for and coordinating care for these children.

AMCHP: The Power of Prevention for Mothers and Children
This new document from AMCHP presents peer-reviewed evidence on the cost effectiveness of common MCH public health interventions. Many of these are funded through the Title V Maternal and Child Health Services Block Grant.

HHS - FDA: New FDA Patient Network Website
This new website is designed to give “patients and advocates a bigger voice in medical product regulation, which includes drugs, devices, and biologics.” In addition to providing education about FDA regulatory and policy issues, it also includes information on how patient advocates can serve on FDA working groups, become Patient Representatives, and help ensure the voice of the patient and family is a part of the work FDA does.

News  You Can Use

News You Can Use

“Stop Bullying” Resources in Spanish
The U.S. Department of Education has a new Spanish-language website with bullying prevention resources for teachers, parents, and community leaders.

National Sibling Leadership Network Conference: June 6th, Pittsburgh, PA
An opportunity to network with siblings of people with disabilities and others, and to learn about new resources, research, and advocacy efforts.

Family Voices Mourns Loss of Former Surgeon General C. Everett Koop
A long-time friend to children and youth with special health care needs, and to Family Voices, passed away on February 25, 2013. Dr. Koop was known for his leadership and commitment to CYSHCN and will be missed. He worked closely with MCHB and families to create new systems of care for CYSHCN. In his words: “These major steps in building family coalitions, improving services for children and families within our States, and redirecting health care dollars in cost-effective ways will provide a tremendous force in accomplishing our goal of quality care for all children with special health care needs.”

Congratulations to the Family Leaders Selected for the New Cohort of MCH Public Health Leadership Institute Fellows!
Five family leaders will participate in the NEW MCH PHLI Cohort: Gina Pola Money, Kim Weimer, Donene Feist, Lauriann King, and Michele Juda.

Newly Designed Health System Data Center from the Commonwealth Fund
An interactive Data Center for state, local, and child health system performance scorecards.

What's New with Family Voices

In February 2013 several Family Voices staff and consultants attended the MCH Life Course Research Agenda Setting meeting in Washington, DC., to discuss development of a new research agenda for MCHB. Researchers from around the country attended, representing diverse fields of life course study.

Family Voices presented on “Translating Life Course Health Development Research and Theory in Partnership with Families.” We gave our presentation to an audience of life course researchers who provided formal review of our draft journal article, which was submitted last December. Through formal and informal discussions, the perspective of families was persuasively presented throughout the meeting.

By the closing session, attendees were asked to give their “aha’s” - important ideas that had come out of the meeting—and one of the researchers we met with announced that “Families live life course!” This was an exciting and inspirational moment. Before the meeting, we found that the phrase “Families live life course” intuitively made sense to us – but did not necessarily translate meaningfully to our reviewers. By the end of the meeting, we had found effective ways to translate this idea, which we will now work to transfer into our revised journal article draft.

We are beginning the revision process with an eye toward meeting the Life Course Research Network goals of 1) making our article theoretically consistent and connected with the other papers, 2) making it as a relevant as possible to the research agenda-setting process, and 3) preparing it for publication. We gratefully acknowledge the incredibly helpful feedback we received from family leaders and professional life course researchers who reviewed the first draft.

KASA Update by Carrie Piaggi, KASA Board member
My name is Carrie Piaggi, and I am from Clarksburg, Massachusetts. I perform clerical duties for Berkshire Family and Individual Resources. I served as a KASA Task Force member for about two years before joining the KASA Board in August. I am a co-chair for the KASA Board, as well as the Task Force. On March 9, 2013 I went to a conference sponsored by the Federation for Children with Special Needs in Boston Massachusetts and attended various workshops throughout the day.  The workshops that I attended were: “From IDEA to ADA: Transitioning to Adult Rights,” “Real Lives—Human Aspirations Common to All Americans,” and “Telling Your Story.” There were 900 people at the conference this year.  Before the workshops, there were two keynote speakers.  One keynote speaker was a professor and the second keynote speaker was a self-advocate speaking of his experiences and how he became a self-advocate. The workshops were very useful and provided a lot of information.

June is Home Safety Month
June is Home Safety Month.


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