Washington Update, November 13, 2019

Open enrollment in ACA Marketplaces and TRICARE has begun, and numerous resources to help consumers enroll are provided at the end of this Update. In Congress, work goes on behind the scenes to address prescription drug prices and surprise medical billing. The administration has released the 2019 Medicaid and CHIP Scorecard, which provides information about the programs’ administration and outcomes. The Georgetown Center for Children and Families has released its annual report on children’s health insurance coverage. Read about these issues and more in this week’s Update.

Supports for Families of CYSHCN: A Quick Reference Guide to Family-Led Organizations

With a few exceptions, the four national, family-led organizations described in this document have affiliates in each state. In many states, one or more of these organizations are co-located at the same agency. In other states, the organizations are located in different agencies. Each project has a specific area of expertise: health care, emotional support, mental health supports, and special education. The family members who staff these organizations are parents/guardians of children and youth with disabilities/special health care needs (CYSHCN); some are siblings to CYSHCN. They understand families’ concerns about their children and can connect them with the organization that can best advise them. Staff at these organizations come from diverse backgrounds and are able to connect with families of like backgrounds in their own native languages. In other instances, staff can connect families from diverse backgrounds to cultural brokers.

Leadership in Family and Professional Partnerships (LFPP): What It Is and How You Can Benefit

Learn about the work of the Family Voices Leadership in Family and Professional Partnerships (LFPP) program and how to access its resources and offerings!

The LFPP is funded by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) as a cooperative agreement from June 2019 to May 2022. This webinar shares details on the LFPP focus areas of:

    • Assistance and Training on Family Engagement to Family-to-Family Health Information Centers (F2Fs), Title V programs, and other CYSHCN stakeholders on family engagement at all levels of health care, with an emphasis on underserved communities. F2Fs will receive assistance and training to support their organizational capacity, overall program goals, and reporting.
    • Partnership and Collaboration with organizations serving CYSHCN and diverse, medically underserved communities to identify best practices, materials and resources related to family engagement and to identify opportunities for collaboration.
    • National Dissemination to CYSHCN stakeholders on family engagement resources, best practices, and emerging state and federal policy trends impacting CYSHCN and their families.

Washington Update, October 9, 2019

Congress is still in recess, and will return on October 15. Outstanding issues to tackle when they get back include appropriations to keep the government funded past November 21, and legislation to address surprise medical bills and prescription drug costs. It is not clear whether a consensus can be reached on those contentious issues. On the judicial front, the US Circuit Court of Appeals for the 5th Circuit is expected to issue its decision soon in Texas v. United States, about whether the Affordable Care Act is constitutional. In other news, the Title V NOM/NPM data from the Combined 2017-2018 National Survey of Children’s Health are now available at www.childhealthdata.org! (See “Special Announcements,” in the link below.)

IT’S RECESS! Members of Congress are home on a recess through October 14, which provides an opportunity for you to see them in their local offices or at town halls or other public events. It’s a great chance to educate them about CYSHCN and their families, and about your Family-to-Family Health Information Center. To get contact information for your Members of Congress, see www.contactingcongress.org, or www.senate.gov and www.house.gov. For a list of public events in your area, see the Town Hall Project.


To read back issues of the Washington Update, click here.

Protected: Serving on Groups Resources


House and Senate Pass Bill to Extend F2F Funding

UPDATE (July 31, 2019):  The House and Senate have both passed a bill to fund Family-to-Family Health Information Centers (F2Fs) for FIVE more years – through FY 2024 – at the current funding level of $6 million per year!  The legislation also makes permanent the provision that requires the establishment of F2Fs for territories and tribes.  Within the next few weeks, the president is expected to sign the bill into law.

The F2F provision was included in a bill, the Sustaining Excellence in Medicaid Act of 2019  (formerly the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019) (H.R. 3253), that extends several programs, including the Money-Follows-the-Person demonstration program, and the Certified Community Behavioral Health Clinic demonstration program.

The extension of this funding for five years will help F2Fs more effectively and efficiently plan ahead, retain experienced staff, and expand partnerships in the community.

We are very grateful for the bipartisan support of Congress, particularly those Members who made this happen – Senate Finance Committee Chairman Charles Grassley (R-IA) and Senator Robert Menendez (D-NJ), sponsors of the Senate F2F bill; Representatives Mikie Sherrill (D-NJ) and Fred Upton (R-MI), sponsors of the House F2F bill; House Energy & Commerce Committee Chairman Frank Pallone (D-NJ); Ranking Members of the key committees, Senator Ron Wyden (D-OR) and Representative Greg Walden (R-OR); and Representative Deborah Dingell (D-MI), who sponsored the bill to which the F2F provision was added.

It takes a village to raise a child and so too to sustain the critical work of F2Fs!

For more information on the legislation and its path through Congress, please see “Congressional Action,” below.


Family-to-Family Health Information Centers (F2Fs) are family-led centers providing support to families of children and youth with special health care needs (CYSHCN) and helping them to navigate the health care system so their children can get the care they need.  The federal F2F grant program was created on a bipartisan basis in 2006 to provide funding for F2Fs. Since 2009, when the program was fully phased in, there has been one F2F in each state and the District of Columbia. Thanks to a 2018 amendment to the program, now there are also F2Fs in American Samoa, Guam, Puerto Rico, the Northern Mariana Islands, and the U.S. Virgin Islands, plus three F2Fs dedicated to serving American Indian and Alaska Native families.  The federal grant for each F2F is $96,750 per year. In 2017, the program was extended through federal FY 2019 (September 30, 2019).


The ultimate passage of the F2F funding extension and amendment took a long and winding road through Congress.

In May 2019, Representatives Mikie (Michelle) Sherrill (D-NJ) and Fred Upton (R-MI) introduced the Family-to-Family Reauthorization Act of 2019 (H.R. 2822), and Senators Chuck Grassley (R-IA) and Robert Menendez (D-NJ) introduced the Supporting Family-to-Family Health Information Centers Act (S.1647). Both bills would extend funding for the F2F program for an additional five years, through federal FY 2024, at the current funding level of $6 million per year. The Senate bill also included a provision to make permanent the establishment of F2Fs for territories and tribes. The bills were referred to the Health Subcommittee of the House Committee on Energy & Commerce (E&C), and to the Senate Finance Committee.

On June 4, 2019, the E&C Health Subcommittee held a hearing on a number of health bills, including the Family-to-Family Reauthorization Act of 2019 (H.R. 2822). Diana Autin, Executive Co-Director of the New Jersey F2F (the SPAN Parent Advocacy Center) testified on behalf of Family Voices.

You can read Diana’s oral testimony, as prepared for presentation to the subcommittee, and the written testimony of Family Voices and SPAN that was submitted for the hearing record.  You can watch a video of Diana’s 5-minute testimony before the subcommittee at minute:second 40:40 of the video.  You can also watch a question about the NJ F2F that was posed by Rep. Pallone, and Diana’s answer, at hour:min:sec 1:11:46, and a question posed by Rep. Upton, and Diana’s answer at 1:13:55. The latter question and answer were about the importance of extending the program for five years (longer than it has been extended in the past) – a longer extension makes it easier to plan, develop partnerships with other agencies and organizations, retain valuable employees, and secure funding from other sources.

Thirty-seven (37) national organizations expressed their support for the House bill in a June 3, 2019, letter to Representatives Sherrill and Upton.

July Update:

On July 11, the Health Subcommittee of the House Energy & Commerce Committee favorably reported out a bill, the Reauthorizing and Extending America’s Community Health (REACH) Act (H.R. 2328, committee print), which included (in Section 103) a 4-year extension of F2F funding at the current level of $6 million per year.  On July 17, the full Energy & Commerce Committee favorably reported out an amended version of the same legislation, which also included the 4-year extension of F2F funding.

On July 25, the Senate approved an amended version of a different bill that the House had passed in June – the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 (H.R. 3253), sponsored by Rep. Deborah Dingell (R-MI).  That bill extends several programs, including the Money-Follows-the-Person demonstration program and the Certified Community Behavioral Health Clinic demonstration program. The Senate renamed the bill the Sustaining Excellence in Medicaid Act of 2019, and sent it back the House with the 5-year extension of the F2F program included. The House approved the Senate version of bill on July 30.

House- and Senate-passed bill including the 5-year F2F funding extension:

The Sustaining Excellence in Medicaid Act of 2019 (H.R. 3253) (formerly titled the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019)

House bill (H.R. 2822):

Senate bill (S. 1647):

Information from House Hearing, June 4, 2019:

Family to Family Health Information Center (F2F) Brochure

Updated October 2019

  • Source: Family Voices

Model for Meaningful Family Engagement

Family Voices is a partner to the Genetic Alliance’s National Genetics Education and Family Support Center. This tip sheet was created in response to the Regional Genetics Networks (RGN) request for information to support and ensure meaningful family engagement in genetic services. This information was adapted from the Family Voices Framework for Assessing Family Engagement in Systems Change.

Resource eBlast

Resource eBlast: an emailed roundup of resources for families of children/youth with special health care needs.

Subscribe here to receive the Resource eBlast in your inbox!

Below are past editions of the newsletter.


2019 Family Voices Leadership Conference Presentation Slides and Materials

Below are slides and other materials from keynote and breakout session presentations at the 2019 Family Voices Leadership Conference. The conference schedule and presentation descriptions can be found in the conference program. Speaker bios are here.


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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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