December 2010

January 06, 2011

December 22, 2010: Download a Printable Version here.

Firday's Child Logo


Feature Story: Healthcare for CYSHCN & The Affordable Care Act

Family Leadership in the States:

Legislative Corner: Update from Washington

What's New with Family Voices:

From Our Partners:

News You Can Use

Feature Story: Healthcare for CYSHCN & The Affordable Care Act 

Happy Holidays from Family VoicesIn the traditional holiday favorite, The Christmas Carol, Charles Dickens provides a glimpse into 19th century England to convey his story of redemption and personal transformation that comes with giving to others.  In the backdrop of an industrialized London, replete with poverty, crime, filth, and disease, survival for the common man in this dichotomous class system was an everyday struggle.  But the happy ending of this story shows Ebenezer Scrooge, once a miserly, cantankerous, overbearing curmudgeon finding joy in giving food, presents, and care to the Cratchit family, especially Tiny Tim.

Though enormous strides have been made in so many aspects of society over the last 150 years, in this holiday season, there will be some children who, like Tiny Tim, will not able to get the healthcare services they desperately need.  According to the National Survey of CYSHCN, 33.1% of families of CYSHCN say their insurance coverage is inadequate to pay for the services their child needs.  And when families are the payer of last resort, the family as a whole is affected – fewer funds for food, clothing, housing, etc.

The Patient Protection and Affordable Care Act (ACA) of 2010 clearly is a step in the right direction.  Key provisions that will help families of CYSHCN include:
- Insurance companies not being able to deny coverage to children on a pre-existing condition;
- Insurance companies not being able to impose a lifetime benefit cap ;
- Individual and small group plans being

required to include “essential benefits”; (effective 2014)
- Young adults up to age 26 being covered by parents’ plan; and
- Medicaid eligibility being extended to anyone whose income is under 133% of the FPL.
However, the work isn’t finished as regulations for many provisions are still being written and amendments are possible;  pushback is taking place in some states. “Although the law is a federal statute, it leaves states to administer many of its most important provisions and grants them considerable leeway” notes the Washington Post, November 9, 2010.

Family leaders must continue to be diligent in their fight for needed health care for their own children and others.  Here at Family Voices, our Policy Team monitors progress with ACA implementation across the country and provides timely, critical updates to Family-to-Family Health Information Centers and Family Voices State Affiliate Organizations.  Most of all, the Policy Team wants to learn what families are experiencing.  Please take a moment to contact Brooke Lehmann ( or Janis Guerney ( if you have a family story to share, or other information related to health care reform implementation.  Together we can make a difference!

Happy Holidays from Family Voices!

“And God bless us, everyone!”

Family Leadership in the States

Family Leadership in the States


Providing Family-to-Family Support in Pediatric Practices and Hospitals
Family Connection of South Carolina - Celebrating 20 YearsFamily Connection of South Carolina , the Family-to-Family (F2F) Health Information Center, partners with providers across their state to offer support for families directly in the healthcare setting. A system of experienced parents, supported at an F2F through multiple funding sources, works closely with professionals to help families receive needed information and services.

Family Connection “Parent Partners” work within hospital pediatric clinics, outpatient practices, NICUs, and a Down syndrome clinic to provide direct family-to-family support. In each of these settings, experienced parents of children with special healthcare needs partner with doctors, nurses and other specialists as members of a medical team. A parent who has “been there” provides emotional support, shares resources, helps a family to navigate complex healthcare systems, and links them to family support groups. A Family Connection “Parent Partner” working in a pediatric office setting speaks directly with the family, sharing information about the help available through the F2F center. Specifically, trained parents in early intervention do home visits with families, assist them with the Individual Family Service Plan (IFSP) process, and help them find services for their child with special needs.

“Parent Partners” start where the family is—helping with basic needs for shelter, food or transportation or with issues related to insurance/Medicaid, therapy or school issues or parenting concerns. Family Connection “Parent Partners” encourage families to partner with their child’s medical team and to advocate for their child when needed. For more information about “Parent Partners” in South Carolina, contact Jackie Richards at
Congratulations to Mary Jo Paladino!

Mary Jo Paladino Receives AwardFamily Voices Indiana is thrilled to share that FV IN founding board member and Family Voices Regional Field Coordinator, Mary Jo Paladino, has received the Indiana Governor’s Council for People with Disabilities’ Distinguished Leadership Award Partners. As both a professional in the field and a parent, Mary Jo has been a tireless, and passionate advocate in helping families of children with disabilities access services and resources to maximize their potential. She has been an instrumental partner in establishing Family Voices Indiana as a non-profit organization. Mary Jo has also been involved in First Steps, Sunny Start, and the Indiana Perinatal Network. She served a Governor appointment to the Indiana’s Children’s Health Insurance Program Special Needs
Panel from 1999 to 2003.

Legislative Corner

Legislative Corner

Washington Update
Family Voices Policy Team provides these latest updates from Washington:

  • Current information and news on  health reform implementation can be found on the National Association of County and City Health Officials (NACCHO) website.  This site includes new resources and funding available to local health departments, and upcoming opportunities for health departments to provide input into the regulatory process.  Access the page at
  • Child Nutrition bill was signed into law, expanding free school meals for the needy and giving the government power to decide what kinds of foods may be sold in schools.   This law is an important step in President Obama’s administration-wide effort to combat childhood obesity.  Learn more at
  • Senators Dodd (CT) and Casey (PA) introduced the Children’s Act - which creates a National Council on Children, following the fourth and final hearing of the Subcommittee on Children and Families on the State of the American Child. The hearings held by the subcommittee highlighted the challenges faced today by children and families. Senator Dodd views this bill as a much needed response, and hopes that the Council will closely examine the needs of children and identify solutions to improve their lives. Senators Dodd and Casey are hopeful that this proposal will be well-received and supported broadly by the children’s community. If you are interested in learning more the about the bill, visit 

If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

News from Family Voices

Whats New with Family Voices

Searching for a Special Gift?
Make a contribution to the Polly Arango Memorial Fund.  Funds will be used to support an effort Polly modeled – a mentoring program for emerging family leaders – to help ensure the continuity of the family movement.   See

FV Launches New Website:
Check out our new website featuring easy navigation, attractive page layouts, new features, brighter colors, and more. At You can also now follow Family Voices on Facebook!  Join us!

FV’s Newest Family Member— Mateo Rodriguez!
Congratulations to Julio and Rachel Rodriguez, Deputy Director of Family Voices, on the birth of their son, Mateo, on December 10., 2010.ebruary 13-15, 2011 Omni Shoreham Hotel, Washington, DC
Click here for more information or to register.

From Our National Partners

Catalyst Center: As an MCHB National Center, the Catalyst Center is dedicated to improving health care coverage and financing for CYSHCN and, on their website, you will find a variety of information to help families, providers and policy makers, including:
- Family Stories
- State Data/Chartbook
- Presentations on Health Care Reform, such as Essential Elements of Health Care Reform for CYSHCN

National Center for Medical Home Implementation: Check out this National Center’s new Facebook page at, designed to increase public awareness and to link people to the main website, You’ll also find a YouTube tab and a Twitter tab.

AMCHP: State Public Health Autism Resource Center  (SPHARC)
SPHARC is a comprehensive resource center for state Title V agencies and others interested in improving systems for children, youth and families with autism spectrum disorders.
In addition, SPHARC offers technical assistance calls on subjects such as financing of care, care coordination, cultural competency, family-centered care, medical home, health information technology, and transition. Each technical assistance call is recorded and made available on the SPHARC  website.

HHS: Healthy People 2020
The U.S. Department of Health and Human Services (HHS) recently unveiled Healthy People 2020, the nation’s new 10-year goals and objectives for health promotion and disease prevention.
The Healthy People initiative is grounded in the principle that setting national objectives and monitoring progress can motivate action. Preliminary analyses of data from the last decade indicate that the country has either progressed toward or met 71 percent of its Healthy People targets. 
Healthy People is also issuing a special challenge to encourage developers to create easy-to-use applications for professionals to help communities track their progress using Healthy People objectives and targets as well as develop an agenda for health improvement.

Learn more about Healthy People 2020 at

For more information about the special challenge go to

News You Can Use 

News You Can Use

Flu Season is Here -  Be Prepared!
Getting the flu vaccine is the best way to prevent flu. For children younger than 5 years of age and those with chronic health conditions, such as asthma and neuro-developmental disorders, getting the flu vaccine is especially important to avoid serious flu complications like pneumonia, which can lead to hospitalization and even death. Please join us in encouraging everyone to get vaccinated. Remember the flu ends with you!  For more information, check out these resources:

  • CDC Poster - Shots Aren't Just for A comprehensive government-wide information source for the general public on seasonal, H1N1 (swine), H5N1 (bird) and pandemic influenza, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities.
  • CDC's Flu site: information from the Centers for Disease Control and Prevention, including tips and resources for specific populations, a flu surveillance map, and vaccine descriptions and availability.
  • AAP’s Flu site: Flu recommendations for health care workers and quick facts on influenza disease and the flu vaccine.
  • The National Association of Pediatric Nurse Practitioners (NAPNAP):  A new educational video that addresses questions about immunization, designed for use by both parents and healthcare providers.  The video consists of several 60-90 second video clips between parents and healthcare providers addressing a variety of topics including an overview on vaccines, combination vaccines, immunization schedules, parent/child anxiety, and common misconceptions about immunizations.

Annual Report on the Quality of Care for Children in Medicaid and CHIP
The Centers for Medicare & Medicaid Services (CMS) recently released its Annual Report on the Quality of Care for Children in Medicaid and CHIP. Based on a review of previously published reports, CMS made several important conclusions about the quality of care that children with public insurance receive:

  • Children enrolled in CHIP experience improved access to preventive services.
  • Access to specialty services, including dental and mental health, is still a key unmet need.
  • Racial and ethnic disparities continue to exist among children covered by Medicaid and CHIP.

Download this 29-page report at

Family Information Guide to Assistive Technology & Transition Planning
This 50 page guide from the Family Center on Technology and Disability is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives. Individuals may order one free copy of the guide. Additional print copies are available for $10. A discount is available for bulk orders. To request one or more print copies, visit and click on the link to fill out an order form.

HRSA’s Women’s Health USA 2010 and Child Health USA 2010 data books
These data books highlight emerging issues and trends in women’s and child health, and reflect the ever-changing, increasingly diverse population and its characteristics. The books include current and historical data on some of the most pressing health challenges facing women, their families and their communities, and report on the health status and service needs of America’s children. 
Visit to download or order copies.

Addressing Language and Culture in Health Care Practices
Two videos are now available on enhancing culturally responsive care globally, with a specific focus on the role of medical assistants. Sponsored by the California Academy of Family Physicians and CAFP Foundation.


Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit Should you have any questions about this newsletter, please email Peggy Curran