January 2014

January 23, 2014

January 2014: Download a Printable Version here.

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Feature Story: Family Voices: Growing Stronger in 2014

Public Policy Update

Family Leadership in the States: Family TIES of Nevada: Helping Families and the Professional Who Serve Them

From Our Partners:

News You Can Use

What's New with Family Voices:

Family Voices Resources

Family Voices: Growing Stronger in 2014

Flying Heart

Cristy Marchand, Executive Director, and Lynda Honberg, Director of Strategic Planning, have brought an exciting new energy to Family Voices.  With the following priorities, this experienced leadership team recommits Family Voices to its grassroots foundation of families helping families.

Family Leadership: At the heart of Family Voices are families of children with special health care needs. Families founded the organization and lead the organization at the national and state levels in board governance and staff leadership roles.  Family Voices will continue a strong focus on developing family leadership, and this spring will kick off the Polly Arango Mentoring Project to develop a new generation of leaders representing families of cultural diversity.

State Affiliate Organizations (SAOs): Family Voices will strengthen our relationships with SAOs in their roles as nonprofit organizations and catalysts for systems change in states.  We’ve initiated monthly SAO calls with topics such as Medical Home, Generating Income for Advocacy, and other contemporary issues. Through the monthly calls, SAOs dialogue with their colleagues while sharing critical information valuable to all states’ efforts.

Membership Organization: Family Voices was founded as a membership organization; yet our outreach and renewal systems need to be strengthened. We will engage our membership in developing our policy positions and keeping members informed and educated about contemporary issues.  We will be applying for new grants to benefit the SAOs and families they serve.

Policy and Grassroots Engagement: Over the last few months, we have been focused on the reauthorization of the F2F HICs.  The response to our action alerts and the great teamwork between state family leaders and our policy team in Washington, D.C. was a success — the Senate approved $2.5 million for funding of F2F HICs in FY 2014 and recommended total funding of $6 million that would include opportunities to develop F2Fs in the territories.  More work still needs to be done for final approval, and we will continue to engage our grassroots network on key policy and legislative issues, such as revisions to the Maternal and Child Health Block Grant and implementation of the  Affordable Care Act.

FV Capacity: reauthorization of the F2F HICs.  The response to our action alerts and the great teamwork between state family leaders and our policy team in Washington, D.C. was a success — the Senate approved $2.5 million for funding of F2F HICs in FY 2014 and recommended total funding of $6 million that would include opportunities to develop F2Fs in the territories.  More work still needs to be done for final approval, and we will continue to engage our grassroots network on key policy and legislative issues, such as revisions to the Maternal and Child Health Block Grant and implementation of the  Affordable Care Act.

We welcome opportunities to work together for families of CYSHCN.  Contact us at cmarchand@familyvoices.org and lhonberg@familyvoices.org. Thank you for your support!

Cristy and Lynda

Public Policy Update

by FV Policy Team: Brooke Lehmann and Janis Guerney

Legislative Corner

Although people talk about the stalemate in Washington, recent legislative and regulatory activity has been productive.

Family-toFamily Health Information Centers (F2Fs): Family Voices has been working hard to ensure continued funding of F2Fs beyond federal FY 2013.  One significant victory was the inclusion of $2.5 million for F2Fs in the budget deal that became law in December.  This amount represents half of FY 2014 funding at the current level of $5 million per year.  Another victory was the approval by the Senate Finance Committee of F2F funding for an additional five years (through FY 2018) at six million dollars per year, and the extension of grants to US territories.  This funding extension/expansion still needs to be agreed to by the full Senate and House in order to become law.  It is expected that the legislation (as part of the Medicare physician payment bill) will progress during the next two months.

Maternal and Child Health Block Grant (MCH Block Grant): Family Voices will be working with the Association of Maternal and Child Health Programs (AMCHP) to try to maintain a funding level of at least $640 million for the MCH Block Grant in the final FY 2014 appropriations law.  The 2014 fiscal year began on October 1, but Congress is still negotiating final appropriations levels for the MCH Block Grant and most other federal programs.  It is expected that an agreement will be reached in mid-January.

Medicaid Home and Community-Based Services: On January 10, the administration announced a new final rule regarding Medicaid home and community-based services (HCBS) provided through waivers and state plan options.  Under the rule, all HCBS settings must:  be integrated in and support full access to the greater community; be selected by the individual from among setting options; ensure individual rights of privacy, dignity and respect, and freedom from coercion and restraint; and optimize autonomy and independence in making life choices.  The final rule also requires that service planning for participants in Medicaid HCBS programs must be developed through a person-centered process that is directed by the individual receiving services and reflects his/her preferences and goals, and may include a representative and others freely chosen by the individual.  

Affordable Care Act: Important consumer protections for health policies and plans become effective on or after January 1, 2014.  Except as noted below, insurers may not:

  • Deny, charge more for, or limit coverage for anyone based on a pre-existing condition.  (This prohibition became effective for children in 2010.) 
  • Impose annual dollar limits on benefits defined in the ACA as “essential health care benefits.”  Insurers are still allowed to put yearly and lifetime dollar limits on non-essential health benefits, and may still place limits on the number of visits for services.

Note:  Exceptions to both of these protections are provided for grandfathered health plans purchased in the individual market.

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

Family Leadership in the States

Family Leadership in the States

A Collaborative Journey to Support Nevada Families

Strengthening and sustaining systems of support to Nevada’s families of children and youth with special health care needs is an amazing journey.  Family TIES of Nevada Director Melanie Kauffman speaks with pride about the accomplishments of Nevada’s F2F/SAO, which include being an integral part of the 100+ member NV Statewide Maternal and Child Health Coalition. Kauffman served on the Coalition’s Leadership Team through 2013 to help guide the start-up coalition with a mission that specifically targets improving the

Family TIES of Nevada:
Helping Families and the Professional
Who Serve Them

In the past year, Family TIES provided
information assistance and training to over
4,000 families of children with special
health needs and 2,700 professionals. The
most frequently provided topics of
infromation were:

  • Family Support
  • Care Coordination
  • Medicaid
  • Disability Awareness
  • Cultural Competence

"Through Family TIES, I can help the
families of children with special health
care needs navigate the system while
getting support from other parents who
have 'been there.' They are an outstanding

-Johanna S. Fricke, M.D., Neurologist
The Lovaas Center for Autism
Las Vegas, NV 


 “physical and mental health, safety, and well-being” of children with special health care needs.

Their history of strong partnerships has enabled Family TIES to take a leadership role in Nevada.  Working with Title V they have helped improve the state’s infrastructure for information, outreach, and support:

  • Hosting a statewide toll-free Parent Support Information/Referral Line for CYSHCN.
  • Providing a health transition checklist for youth to support their transition to adulthooddistributed statewide.
  • Partnering with Nevada’s AAP physician network to deliver family-centered care within a medical home for CYSHCN and their families.

Working with the NV Governor’s Council on Developmental Disabilities, Family TIES has helped improve services that support a healthy lifestyle for individuals with disabilities:

  • Developing “A Statewide Guide to Health Resources” for people with disabilities.
  • Planning the Nevada Disabilities Conference 2015.

Family TIES efforts have not gone unnoticed. On December 5, 2013, the Southern Nevada Immunization & Health Coalition (SNIHC) presented Family TIES and NV Early Intervention Services with the Silver Syringe Award for the 2013 Collaboration of the Year. This award honors individuals and organizations who are working to protect their community by promoting immunizations, to improve access to preventive healthcare services, and to demonstrate a commitment to the success of the coalition.

Family TIES Nevada

Contact Family TIES of Nevada:
Executive Director: Melanie Kauffman, mkauffman@familytiesnv.org, (775) 823-9500
Website: http://www.familytiesnv.org/
Facebook: https://www.facebook.com/pages/Family-TIES-of-Nevada-Authorized-Page/140528919361353
Phone: (866) 326-8437

From Our National Partners

 US Dept of Health and Human Services
This biennial report summarizes the programs, policies, and initiatives of agencies across HHS that address minority health and health disparities.

 MCHB - Video -MCH Transformation 3.0
Since May of last year, the Maternal and Child Health Bureau has been working in partnership with the leadership in the State Title V Maternal and Child Health (MCH) programs as well as with other national MCH leaders and stakeholders to develop and refine a vision (titled MCH 3.0) for transforming the Maternal and Child Health (MCH) Block Grant to better meet current and future challenges facing our Nation’s mothers and children, including children with special health care needs.  In this video Dr. Michael Lu, Associate Administrator has synthesized  the work to date and is now seeking comments-MCHTransformation@hrsa.gov.

 AMCHP - Listening Session Recordings - MCH Transformaion 3.0 
These sessions were an opportunity for dialogue with Dr. Michael Lu, Associate Administrator of the MCHB/HRSA, on the agency's plans for transformation of the Title V MCH Services Block Grant. http://www.youtube.com/watch?v=KHnxmlqrZ84

 CityMatCH - 2014 Abstract Submission Now Open
Abtracts are now being accepted for the 2014 CityMatCH Leadership and MCH Epidemiology Conference.  Presentations may be submitted for two separate tracks: Program and Policy and Scientific Research/Data.  The conference will be held September 17-19 in Phoenix, AZ. http://www.citymatch.org/conference/citymatch-conference/2014/abstract-submission

News  You Can Use

News You Can Use

Early Essential Health Benefits: Issues to Watch 
Essential Health Benefits (EHB) refer to a package of health services of ten benefit areas that must be included in all individual and small group health insurance plans. Because a number of these benefits are newly offered as part of individual and small group plans, challenges may emerge in this first year of the ACA. Consumer advocates can use this opportunity to review and monitor health benefits to ensure compliance with consumer protections. While the ACA lays out opportunities to ensure equitable coverage and access, advocates can ensure these benefits are implemented and work to identify gaps for future advocacy to fill in. This issue brief highlights key areas that advocates may want to monitor regarding EHB.http://www.communitycatalyst.org/resources/publications/document/EHB-Issues-to-Watch-Final-12-17-13-pdf.pdf

Fact Sheet: Summary of Key Provisions HCBS Settings Final Rule
The final Home and Community-Based Services regulations set forth new requirements for several Medicaid authorities under which states may provide home and community-based long-term services and supports.  Download the fact sheet and look for webinar information for public comments questions to be held on January 23 and 30. http://bit.ly/1axtKe3 

Why I Participate
Be inspired by this family story written by an advocate and mother of a child with hemophilia working with a team from Cambridge Pediatrics in Massachusetts. This story describes the importance of a medical home and how a family partnering with healthcare professionals helped a practice achieve improvements. http://www.nichq.org/stories/ParentStory-ZivaMann.html

What's New with Family Voices

Family-Centered Care Assessment Tool 
Family Voices is excited to announce the availability of a 24-question tool to measure family centeredness of provider care based on ideas created by families themselves. The development of the tool began through in-person meetings, conference calls, and interviews with expert family leaders and health-care providers . The tool has been tested and revised through a research process of focus groups with diverse families across the nation and a national survey of 796 family respondents from across every state.  The resulting questions in the FCCA tool have been found to be psychometrically sound with evidence of high reliability and empirical validity. Analysis of the FCCA validation data revealed excellent properties for assessing the family experience in healthcare. The FCCA will be valuable to families, healthcare settings, health plans and policy makers at the community, state, and federal levels to measure family perceptions of the family-centeredness of healthcare from a provider. Learn more about the FCCA and how to apply to use it at:  http://www.fv-ncfpp.org/activities/fcc-tool-validation/fcca-usage-request/.

Barbara Popper
Family Voices is deeply saddened by the passing of Barbara Popper on November 3, 2013. During a five-year heroic battle with cancer, Barbara never lost a chance to relish time with her loving family.  Right up until the very end of her illness, she continued to contribute her passion and expertise to her work of improving health care for children with special needs and their families. Barbara Popper

Barbara became a family leader with innovative ideas about family/professional partnerships long before such ideas were even discussed. In the 1970’s when her baby daughter was hospitalized for eye surgery, Barbara was astounded to learn that hospital policy didn’t approve of her staying with her nursing baby. As a result of her experience, she formed a parent group, Children in Hospitals, surveyed hospitals and published information on their policies and eventually succeeded changing such “hospital visiting” policies to allow “rooming in.”

Barbara was among the families who helped found Family Voices and worked on many FV projects around SCHIP, Families in Program and Policy, Bright Futures, and as a Regional Coordinator. Barbara loved supporting families, encouraging them to speak up about their needs in order to get what they deserved and to improve services for others. A passionate advocate for children and families, devoted wife, mother of four and grandmother of nine, mentor and friend to families all across the nation, Barbara will be greatly missed and long remembered. We are grateful for the lasting legacy that she leaves upon our work.

In lieu of flowers, remembrances may be made to the Federation for Children with Special Needs, 529 Main Street, Suite 1M3, Boston, MA 02129.

Family Resources
Friday's Child Resources

Project IMPACT Website
This new website promotes health and wellness knowledge for all families, including culturally diverse families and families with children and youth who have special needs and disabilites. http://www.fv-impact.org

Bright Futures Pocket Guide - SPANISH
This popular resource on child development will soon be avilable in Spanish. Watch our website for updates! http://www.fv-impact.org
BFPG Spanish 2nd Edition





Partnering Tip Sheets
These re-released publications have been updated to provide helpful tips for families: Partnering with Your Child's Provider and Partnering with Your Child's Health Plan. http://www.fv-ncfpp.org 

Partnering Tip Sheet








Alphabet Soup
Confused by new health care terms? Check out this newly updated glossary and list of acronyms. http://www.fv-ncfpp.org

Alphabet Soup