September 2013

September 19, 2013

September, 2013: Download a Printable Version here.

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Feature Story: FLU & CYSHCN: A Warning

Public Policy Update

Family Leadership in the States: Family Voices of Colorado - a Navigator for families

From Our Partners:

News You Can Use

What's New with Family Voices:

FLU & CYSHCN: A Warning
Doctor with young adult on examining table With flu season officially beginning October 1, families should take steps now to ensure that everyone in the household is as protected as possible, especially children/youth with special health care needs/disabilities.

A recent study from the Centers for Disease Control and Prevention (CDC), based in part on a survey of families developed in partnership with Family Voices which was distributed through Family-to-Family Health Information and FV State Affiliate Organization networks, reveals these key findings relevant to CYSHCN:

  • Only half of children with neurologic and neurodevelopmental conditions are vaccinated against the flu each year.
  • Families view their child’s doctor as the main source of information about the flu.
  • Many pediatricians do not recognize intellectual disability as a high-risk condition for the flu.

These findings are significant because in a report published last year, CDC documented that 64% of children with underlying health conditions who died from the flu had a neurologic disorder or neurodevelopmental condition.

If children with intellectual disabilities are vulnerable to flu complications, and families depend on their pediatrician for advice, yet doctors are not aware of the risk, are we inadvertently placing children with neurologic disorders at risk? What can we do?br />

Resources Available on NCFPP website
  • Fact Sheet for Families of CYSHCN
  • Letter from HHS to Providers on FLU Complications
  • Posters to print & display in clinics or at events
  • Web buttons to link families/providers to more information about CYSHCN & FLU
  • Sample Twitter messages
  • Sample Newsletter article
Join Family Voices and CDC for a free webinar on September 26.

Family Voices urges a “call to action.” Families and providers must learn about the complications of the flu for CYSHCN and take steps to prevent avoidable illness. Families can share information and concerns with their child’s provider, including risks of flu complications for children with neurologic and neurodevelopmental conditions. Families should follow CDC guidelines that any individual over 6 months of age receive the flu shot; children under the age of 6 months cannot get the flu vaccine and so it is very important that all other family members get vaccinated and take precautions to keep germs from spreading.

Family Voices, in collaboration with the CDC, has posted resources to help families:


Public Policy Update


Legislative Corner


Public Policy Update
The health policy world is anxiously counting down to the beginning of the ACA health-plan six-month open-enrollment period on October 1. On that day, “Health Care Marketplaces” (a.k.a. Exchanges) will accept applications for coverage beginning January 1, 2014, or later. Applications and the first premium payment must be made by December 15th for coverage to begin on January 1. Thereafter, if a person enrolls and makes a premium payment between the 1st and 15th of the month, coverage begins the following month. If someone enrolls and makes a premium payment later in the month, coverage will begin the first day of the second following month.

*ACA Terms

Qualifying Life Event: change in your life that can make you eligible for a Special Enrollment Period to enroll in health coverage. Examples of qualifying life events are moving to a new state, certain changes in your income, and changes in your family size (for example, if you marry, divorce, or have a baby).

Pre-existing Condition: Starting in 2014, health insurance plans can't refuse to cover you or charge you more just because you have a pre-existing health condition. The only exception is for grandfathered individual health insurance plans--the kind you buy yourself, not through an employer. They do not have to cover pre-existing conditions.

Annual Caps: Insurance companies can still set a yearly dollar limit of $2 million on what they spend for your coverage for plan years or policy years starting before January 1, 2014. No yearly dollar limits on essential health benefits are allowed for plan years starting January 1, 2014.

It should be noted that coverage under the federal Pre-existing Condition Insurance Plan (PCIP) will cease as of January 1, so it is important for anyone currently in the PCIP to enroll for new coverage by December 15.

Open enrollment for 2014 health insurance coverage closes on March 31, 2014. After that, people can get new private health insurance for 2014 through the Exchanges only if they have a qualifying life event*, like a job loss, birth, or divorce.

There is no need for consumers to wait until October 1 to get information about their insurance options and potential subsidies. They can go now to, which has general information about the ACA and can direct people to the Exchange in their state. The website also offers online “chat.” In addition, help is available through a 24/7, toll-free number (1-800-318-2596; TTY: 1-855-889-4325).

January 1, 2014, is also the date on which key consumer protections of the ACA become effective for plans beginning on or after that date. These protections include the ban on denying or charging more for coverage due to a pre-existing condition*, and the prohibition of annual caps* on essential health benefits. Many readers of Friday’s Child will be assisting consumers to navigate the new terrain of the nation’s health care system. The administration and various organizations have been conducting numerous webinars and conference calls to help the helpers. Visit the CMS website and the NCFPP ACA Web Section for more information.


Contact Brooke Lehmann ( or Janis Guerney ( if you have any questions.


Family Leadership in the States


Family Leadership in the States


Family Voices Colorado, a Navigator for Families of CYSHCN
Navigating health insuranceLast month, Health and Human Services Secretary Kathleen Sebelius announced $67 million in grant awards to 105 Navigator grant applicants in both Federally-facilitated and Federal-State Partnership Marketplaces. Several of our F2Fs/FV State Affiliated Organizations (SAOs) were named in these grants, charged with providing assistance to people looking for plans in the Health Insurance Marketplace. Other F2Fs/FV SAOs received state navigator funding.

Applying for these grants, as is typically the case, involves not only presenting a solid case for how the money will be used, but also demonstrating a sound track record of providing related services. Such is the case for Family Voices Colorado, one of the State Partnership awardees. Suzette Elledge, recently appointed Health Coverage Program Manager in charge of this newly-funded service, brought personal and professional experience working with families, public or Medicaid and private insurance to the table. “I knew from the system what works for families, as well as barriers to understanding the issues.”

The Navigator grant is an extension of what FV Colorado already does, and they were able to describe how what they have been doing with families could easily be expanded across the state. “We’ll be the go-to place for families with children with special health care needs,” Suzette explained. A Colorado exchange call center will triage calls that come in, deciding which site most closely fits the need of the caller. “The first time they mention multiple insurances or special needs they will be sent to us.”

Suzette will be providing training for community partners who serve these families, helping them learn how to be most effective in reaching the families. Eliana Perez, another FV Colorado staffer, has a similar public and private insurance experience working with families will be providing services in Spanish. “This grant is a great fit for what we already do! We have the database, and will just require the training on the program itself.”

Congratulations to FV Colorado and the other SAOs who will be a part of this important Navigator system!

Family Voices Colorado

Contact FV Colorado:
Executive Director: Tom Rose,, 303-733-3000 x101
Phone: 303-733-3000

From Our National Partners

Genetic Alliance:
A user-friendly resource about all the ways genetics is a part of life. This site includes information on how genetics affects you and your family, why you should talk to your healthcare providers about genetics, how to get involved in genetics research, and much more!.

Center for Health Care Transition Improvement
The National Alliance to Advance Adolescent Health has been awarded a 5-year federal grant from MCHB to operate a new national resource center on transition from pediatric to adult health care focusing on quality improvement, education and training of health professionals, youth and family engagement, policy development, and information and dissemination.

National Center for Medical Home Implementation: Fostering Partnership and Teamwork in the Pediatric Medical Home: A "How To" Video Series
These free videos show pediatric practices and their teams how to create efficiency through team huddles, how to build a stronger medical home through family advisory groups, and how to enhance collaboration with families through care partnership support. Each video describes the strategy, reviews the benefits, and provides guidance on implementation in a practice setting.

AMCHP: PULSE Newsletter - Family Involvement
In this issue of PULSE the success of family leadership is celebrated and the commitment of AMCHP to family leadership is reinforced.  This issue highlights the experiences and perspectives of many Family Voices and Family-to-Family Health Information Centers leaders.  Articles include Innovation Station Highlight: Practices in Family Leadership Development, Data and Trends, View from Washington, Real Life Stories, Success Stories, Member to Member, and more.

News  You Can Use

News You Can Use

Early Signs of Autism Video
Six video clips comparing toddlers who show no signs of ASD to toddlers who show early signs of ASD with voice-over explaining how the specific behaviors exhibited by the child, as they occur on screen, are either indicative of ASD or typical child development.

Connecting Kids to Coverage Back-to-School Toolkit
Toolkit to spread the word that two-thirds of kids uninsured today are already eligible for CHIP or Medicaid

ACA & Native Americans
Indian Health Service ACA Implementation press release
Blog - ACA benefits American Indians and Alaska Natives
Fact Sheet: ACA and American Indian and Alaska Native People

Keeping Students with Disabilities Safe from Bullying
Blog on US Dept of Education’s Office of Special Education and Rehabilitative Services (OSERS) guidance to educators and stakeholders on the matter of bullying of students with disabilities.

Undocumented and Uninsured: Barriers to Affordable Care for Immigrant Populations
A report from the Commonwealth Fund and the UCLA Center for Health Policy Research that addresses the ACA’s exclusion of approximately 11 million undocumented immigrants from the ACA’s affordable health care with strategies for improving coverage and access.

What's New with Family Voices

Family Voices Needs YOU! 
Did you know that Family Voices has a three-tiered membership program?  Family Voices offers three types of membership:  individual, organizational, and State Affiliate Organization.  All members are a significant part in our collective effort to keep families at the center of children's health care.  Members receive benefits such as discounts, early notification of events, and inclusion in a members-only listserv.  Your membership provides much-needed support for education, advocacy, and technical assistance on children and youth with special health care needs/disabilities across the country.  We hope to welcome you as a member of Family Voices soon.  For more information about Family Voices and how you can join and be part of our work, please visit

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.  We do this through our state affiliates and our programs:  Bright Futures, Kids as Self Advocates, and the National Center on Family and Professional Partnerships.  Family Voices is a national nonprofit organization led by families of children with special health care needs at the board and staff leadership level nationally and in most states.

National Center for Family/Professional Partnerships
NCFPP BrochureFamily Voices has been awarded a new three-year cooperative agreement by the Maternal and Child Health Bureau as the National Center for Family/Professional Partnerships (NCFPP).  The new NCFPP will focus on:

  • Increasing the capacity of families, Title V and other providers to partner around full implementation of ACA,
  • Strengthening the primary care workforce through family professional learning opportunities,
  • Improving access to quality care and innovation in the areas of family-centered care, cultural and linguistic competence and shared decision making.


September is National Childhood Obesity Awareness Month.


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