June 07, 2013

June 7 Washington Update

This week's Update reports on the White House's National Conference on Mental Health and a new government website, www.mentalhealth.gov. Also included is information on some new ACA implementation resources. But first, see the cool new "handicapped" icon for New York City...

June 04, 2013

Family Voices Announces the Winners of the 2013 Mother’s Day Contest!

Family Voices Announces the winners of the 2013 Mother’s Day Contest. Winners were chosen anonymously by the general public, with 15 people casting their votes.

June 01, 2013

May 31 Washington Update

Greetings from Washington, DC! Congress has been on recess this week, and the flow of regulations has slowed a bit, but this update includes information on some interesting webinars coming up and the launch of an unusual website through which the public can communicate with key tax policymakers in Congress.

May 31, 2013

Family Voices Celebrates Graduation of Youth with Special Health Care Needs And/Or Disabilities

At this time of the year, Family Voices honors youths with special health care needs and/or disabilities, and their parents, who are celebrating graduation – including graduation from middle school, high school, and college. Read the inspiring story of Zach Friedland's accomplishments in college.

May 31, 2013

Father’s Day Contest: Family Voices Asks You to Share What ‘F-A-T-H-E-R’ Means to You

Sunday, June 16 is Father’s Day this year in the United States. Family Voices is honoring fathers by offering a special, free contest asking families to share the meaning of the word ‘F-A-T-H-E-R’. To enter, please go to https://www.surveymonkey.com/s/FVFathersDay .

May 24, 2013

May 24 Washington Update

Greetings from Washington, DC! This update includes some information on upcoming webinars and other information on a variety of topics, including immigration reform, Medicaid managed-long-term-care standards, and Exchange plans proposed by insurers.

May 21, 2013

Vote to Choose the Winners of the Family Voices Mother’s Day Contest!

In early May we asked the Family Voices community to enter a Mother’s Day Contest. Entrants shared what the letters of the word ‘MOTHER’ represent for each of them. To vote on the entries, go to https://www.surveymonkey.com/s/FVMothersDayVoting

May 12, 2013

May 17 Washington Update

Greetings from Washington, DC, where the House of Representatives voted to repeal the ACA for the 37th time while the Senate approved the appointment of a CMS Administrator for the first time in nine years. This week's update provides information about a variety of issues, including an upcoming virtual conference sponsored by several federal agencies about the transition from school to work for young people with disabilities.

May 03, 2013

May 3 Washington Update

Congress has been on recess this week, but the administration has been somewhat busy. It issued a revised model application for health care insurance in the Exchanges, which was shortened and simplified from the application released earlier. In addition, HHS has issued some new FAQs regarding ACA implementation issues. Comments on the proposed regulation regarding Navigator standards are due on Monday, and we urge you to submit comments.

May 02, 2013

Mother’s Day Contest: Family Voices Asks You to Share What ‘M-O-T-H-E-R’ Means to You

2013 is the 100th Anniversary of Mother’s Day. This Mother’s Day, Sunday, May 12, Family Voices is honoring mothers by offering a special, free contest asking families to share the meaning of the word ‘M-O-T-H-E-R’.

April 26, 2013

Announcing the Winners of the "My, How You've Grown!" Raffle

Congratulations to the three winners, and thank you to everyone who participated in this raffle. Your entries are all very inspiring and we appreciate you!

April 26, 2013

April 26 Washington Update

Since it's been a quiet week for health policy news, this update will focus again on the proposed regulations and Funding Opportunity Announcement about federal Navigator grants for states not running their own exchanges.

April 26, 2013

In the Traumatic Aftermath of the Boston Bombing, Family Voices Underscores Family Resilience

Even as Washington lawmakers grapple with the polarization of the post Sandy Hook gun control debate, parents across America are dealing with the emotional wake of yet another human disaster, the Boston Marathon bombing. Family Voices provides some suggestions from the experts about how parents can deal with these emotional challenges in the most healthy ways possible.

April 19, 2013

April 19 Washington Update

This week's update will focus again on the proposed regulations and Funding Opportunity Announcement about federal Navigator grants for states not running their own exchanges. Optional letters of intent are due on May 1. Applications are due on June 7. Registration to be a federal grantee is required and takes some time, so it is important to act now if your organization might want to apply for a Navigator grant.

April 12, 2013

April 12 Washington Update

In this update: the latest information about federal Navigator grants, for which guidance was released this week. These grants could be a source of money for your organization to help families of CYSHCN navigate the new health insurance system. Applications are due on June 7.

April 01, 2013

Family Voices Celebrates Autism Awareness Month

As April begins, Family Voices would like to acknowledge and honor all of the people who are working to create greater awareness of the needs of children and youth living with autism, and their special families and caregivers.

March 25, 2013

Healthy People 2020 Report is Now Available

This downloadable document examines Healthy People 2020 objectives and serves as a companion to Envision 2020, the 10-year strategic plan for the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB).

March 23, 2013

March 23 Washington Update

In the wee hours of Saturday morning, the Senate passed its budget resolution. Also in this update - a repeat of important information about how your organization can prepare to apply funding to be a "navigator" under the Affordable Care Act (ACA) if your state is not running its own Exchange. A federal "Funding Opportunity Announcement" (FOA) for navigator funding is expected soon.

March 20, 2013

Family Voices Announces a Free, "My, How You've Grown!" Raffle

As Spring begins, Family Voices is launching a free “My, How You’ve Grown!” Raffle for Families of Children and Youth with Special Health Care Needs and/or Disabilities. In this season of new life and new growth, we want to celebrate with you how your children grow. Find out how to enter.

March 15, 2013

March 15 Washington Update

Greetings from Washington. Good news about legislation to extend funding for Family-to-Family Health Information Centers - a Senate companion bill was introduced! Also in this update: VERY IMPORTANT information about how your organization might be able to get funding to be a "navigator" if you live in a state that is not running its own Exchange; a rough explanation of the federal budget process and news on budget-related legislation; and announcements of informational sessions about the Affordable Care Act (ACA) to be held early next week -- a conference call on health care "marketplaces," and a webinar on assisting consumers in applying for public and private insurance under the ACA.

March 14, 2013

Read Heart-Warming Entries from Family Voices February "I Love You" Raffle

We’ve had a request to create a document of the February “I Love You” Raffle Facebook postings so the Family Voices community can share them with their friends. Follow the link to download this love-filled document.

March 08, 2013

March 8 Washington Update

Greetings from Washington. This week's update includes some more federal budget-related news (sequester effects, appropriations) and a few miscellaneous pieces of information.

March 03, 2013

March 3 Washington Update

This report will focus on the big news of the week -- the sequestration that will impose across-the-board cuts in FY 2013 spending for many federal programs, including special education, medical research, child care, housing, mental health treatment and Family-to-Family Health Information Centers (F2Fs).

February 26, 2013

Job Opening: Development Specialist

Family Voices is still seeking a Development Specialist. This position involves working closely with the Executive Director, Family Voices Committees, and Family Voices Staff to create and carry out fundraising and membership development strategies.

February 25, 2013

February 22 Washington Update

Although Congress has been on recess this week, the administration is still working hard on regulations to implement the Affordable Care Act (ACA). Please consider providing feedback on its proposed "single streamlined application" for public and private insurance and premium tax credits that will be used when the ACA is implemented in 2014. The consumer voice is needed to improve this application! Details about how to comment are below.

February 18, 2013

Family Voices Calls for Maintenance of Children’s Programs after President Obama's State of the Union Address

As the President works with Congress to balance competing and sometimes conflicting financial and social service agendas, Family Voices calls for the maintenance of Medicaid and other essential health programs that make basic, quality care possible for many Children and Youth with Special Health Care Needs and/or Disabilities (CYSHCND).

February 15, 2013

February 15 Washington Update

Two weeks until the sequester kicks in and everything is still up in the air. HHS announced the suspension of enrollment in Pre-existing Condition Insurance Plans, and there is still time to comment on the "single streamlined application" for public and private insurance and premium tax credits that will be used when the ACA is implemented in 2014. The consumer voice is needed to improve this application!

February 13, 2013

Family Voices announces a Free “I Love You” Raffle for Families of Children and Youth with Special Health Care Needs and/or Disabilities

Entries in three age categories will be accepted until February 28, 2013 and all entrants will receive a one-year membership to Family Voices. One winner of a beautiful heart-shaped gift box of chocolates will be randomly drawn on March 1 from each of three age categories, and winners will be announced by March 6.

February 08, 2013

February 8 Washington Update

Good news! Representative Frank Pallone (D-NJ) has introduced a bill to extend funding for Family-to-Family Health Information Centers (F2Fs) through FY 2016! Details on this and more are in this week's update.

February 05, 2013

Read Inspiring Entries to Family Voices Winter "New Year, New Healthy Choices" Raffle Winners

These quotes provided by parents on ways their children stay healthy and active reminded us on different ways on keeping ourselves healthy.

February 01, 2013

February 1 Washington Update

This week's update focuses on some regulations implementing health care reform, but includes the usual legislative information as well. At the end of the update are links to announcements of two SAMHSA grants that may be of interest.

January 25, 2013

Family Voices Supports Efforts To Enhance Safety for Kids by Improving the Mental Health System

This past week President Obama proposed a set of reforms intended to curb gun violence and enhance the mental health system in support of safety for children. Family Voices stands behind these efforts, particularly with respect to increasing family access to mental health services, and providing training for mental health professionals in violence prevention.

January 25, 2013

Family Voices’ Superstorm Sandy Relief Dollars are Being Put to Good Use & More Funds are Still Available

This story profiles how funds were used to help Kimberly Holley of Norwalk, CT and her family. Local Family-to-Family Health Information Centers (F2F HICs) and Family Voices State Affiliate Organizations (SAOs) can apply for remaining funds on behalf of families of children and youth with special health care needs and/or disabilities who were affected by Hurricane Sandy.

January 25, 2013

January 25 Washington Update

This week's update discusses the federal budget situation, Congress' interest in mental health policy, proposed regulations relating to Medicaid and CHIP, the rights of students with disabilities to participate in school sports, the future of F2F funding, and upcoming webinars on topics of interest.

January 18, 2013

Birth Defects Info for Parents & Providers: CDC/Family Voices Twitter Chat January 23, 2 PM EST

National Family Voices will partner with the Centers for Disease Control and Prevention, the American Academy of Pediatrics, and additional partners including state departments of health for a Twitter chat (#1in33chat) January 23 at 2 PM EST about birth defects.

January 18, 2013

January 18 Washington Update

Among other things, this week's update will provide information about the President's proposal for addressing gun violence, a new Medicaid regulation, and the availability of new tools for helping people prepare for the implementation of health care reform.

January 11, 2013

January 11 Washington Update

Greetings from Washington! This update provides more information on the F2F funding extension, as well as other news.

January 08, 2013

Family Voices Calls for Families of Color & Hispanic Origin to Participate in the Review of a Family-Centered Care Assessment Tool

Family Voices is asking for families of color and/or Hispanic origin who read English to help complete the review process for the new version of the Family-Centered Care Assessment Tool by January 11, 2013. The goal is to make sure this tool will meet the needs of diverse families across the United States.

January 04, 2013

January 4 Washington Update

Greetings from Washington and happy New Year! This will be a short update, to announce only one item of news - funding for Family-to-Family Health Information Centers (F2Fs) was extended for one more year!

December 29, 2012

Family Voices announces a Free “New Year, New Healthy Choices” Raffle for Families of Children and Youth with Special Health Care Needs and/or Disabilities

Entries in three age categories will be accepted until January 31, 2013 and all entrants will receive a one-year membership to Family Voices. One winner of a $50 Target Gift Card will be randomly drawn from each of these three categories on February 1 and winners will be announced by February 4.

December 22, 2012

December 21 Washington Update

It's been a somber but busy week in DC, with much conversation about how to prevent tragedies such as the Newtown shootings; fiscal cliff offers and counter-offers back and forth between the Speaker of the House and the White House; and child health advocates responding to several proposed regulations on implementation of the Affordable Care Act (ACA).

December 21, 2012

Family Voices Calls for More Support for Youth with Mental Illness in the Wake of the Newtown Shooting

As a family-led organization that works to support the mental, emotional and physical health of all children – and particularly those with special needs – Family Voices feels it’s essential for our nation to learn the most important lessons of last week’s shooting at Sandy Hook Elementary School in Newtown, Connecticut.

December 14, 2012

December 14 Washington Update

Although Congress has been fairly quiet this week, the administration has been quite busy. Among other things, it announced conditional approval of state-based Exchanges in nine states, and issued FAQs which clarify that states will not be allowed to get federal matching for partial adoption of ACA's Medicaid expansion.

December 12, 2012

Thursday, December 13 at 2:30 PM Eastern Time Family Voices will be hosting a webinar on the proposed EHB rule.

This webinar will help you understand several proposed rule changes by the Department of Health and Human Services (HHS) regarding the Essential Health Benefits Rule (EHB), so that you may submit comments to HHS.

December 11, 2012

Read Inspiring Entries to Family Voices Fall "Giving Thanks" Raffle

These quotes from parents about what they appreciate about living with their special children were truly inspiring for us. So, we wanted to share them. See photos of the families as well.

December 10, 2012

December 7 Washington Update

Most of the city is just waiting impatiently for a deal to avert the "fiscal cliff" - the tax increases and spending cuts that will automatically kick in after the new year unless current law is amended. Meanwhile, the Senate considered ratification of the UN Convention on the Rights of Persons with Disabilities and advocates continue to analyze proposed rules to implement the ACA.

November 30, 2012

November 30 Washington Update

This update will focus on the funding of Family-to-Family Health Information Centers (F2Fs) and some significant proposed regulations to implement the Affordable Care Act (ACA), including a proposed rule about "Essential Health Benefits."

November 20, 2012

Families: Help Improve Family-centered Care by Assisting Family Voices with Testing a Questionnaire on this Subject

We need your help with a very special project - testing the REVISED Family Voices Family-Centered Care Assessment for Families (FCCA) questionnaire. This questionnaire allows families to evaluate the quality of the family-centered care they receive from their health care providers.

November 16, 2012

November 16 Washington Update

This update will focus on the funding of Family-to-Family Health Information Centers (F2Fs) and implementation of the Affordable Care Act (ACA).

November 13, 2012

Family Voices announces a Free Fall “Giving Thanks” Raffle for Families of Children and Youth with Special Health Care Needs and/or Disabilities

Many cultures include giving thanks as part of a harvest festival at the end of the growing season. Family Voices would like to honor this tradition by giving families of children and youth with special health care needs and/or disabilities the opportunity to share what they are grateful for in having their children. Many, if not most, families see their children as their greatest harvest. For this raffle, families will share gratitudes about their experiences with their special children and be entered in drawings for a $100 Target gift card.

November 12, 2012

The Results of the Family Voices Fall Costume Contest are in!

The contest has been great fun. Winners were tabulated in each of three age categories: 0 – 7, 8 – 14, and 15 – 21. The winner in each age category will be receiving a $100 gift card from Target.

November 06, 2012

In the Wake of Hurricane Sandy, Family Voices Mobilizes to Provide Support through its Network of Affiliates and Partners

As agencies along the eastern seaboard work to help families of children and youth with special health care needs and disabilities affected by Hurricane Sandy, Family Voices State Affiliate Organization (SAOs) and partners from around the country provide support based on experience in similar situations.

November 02, 2012

Families Helping Families - Superstorm Sandy Relief Fund

There are over 660 thousand children with special health care needs in New York and almost 300 thousand children with special health care needs in New Jersey. What challenges are these families facing under the dangerous conditions presented by Superstorm Sandy? What can we, safe in our own homes far from the disaster, do to help?

October 15, 2012

Fall Costume Contest Announced with Prizes

Family Voices announces a Free Fall Costume Contest for families of children and youth with special health care needs and/or disabilities.

October 12, 2012

October 12 Washington Update

Greetings from Washington! Congress is still on recess until after the election, so it’s quiet on Capitol Hill. All eyes and ears are focused on the election campaign. This update includes some links to comparisons of the major candidates’ health care proposals, and repeats information about how you can take advantage of the congressional recess to talk to Members of Congress back home about the need to ensure continued funding for Family-to-Family Health Information Centers.

October 05, 2012

Family Voices Board Seeks Nominiations

The Family Voices Board Nominations Committee is seeking applicants for the 2013- 2016 Board of Directors. This is a volunteer position. Priority is being given to Family Leaders and people with a financial and accounting background.

October 05, 2012

October 5 Washington Update

This week's update includes information about how the presidential race might affect Medicaid, how states are progressing in developing their Essential Health Benefits packages, and how to take advantage of the congressional recess by talking to your Members of Congress about Family-to-Family Health Information Centers.

October 01, 2012

As National Work & Family Month Begins, National Family Voices Celebrates the Work of Special Parent Heroes

October is National Work and Family Month. Family Voices celebrates National Work and Family Month by honoring the many parents who care for a child or children with special health care needs and/or disabilities, and still manage to balance the exceptional demands of their home life with work outside the home supporting other families who have similar challenges.

September 28, 2012

September 28 Washington Update

This week’s update includes several items about implementation of the Affordable Care Act, including information about the new Summary of Benefits and Coverage and Uniform Glossary that will help consumers select a health insurance plan. But first the legislative news …

September 21, 2012

September 21 Washington Update

There are two new cosponsors on the bill to extend funding for Family-to-Family Information Centers!

September 17, 2012

Flu Prevention for Children: Twitter Chat September 18, Coordinated by the CDC with Family Voices

National Family Voices will partner with the Centers for Disease Control, the American Academy of Pediatrics, Families Fighting Flu, and the Administration on Intellectual and Developmental Disability for a Twitter chat Tuesday, September 18, 1 PM EST on helping caregivers prevent flu for children.

September 14, 2012

September 14 Washington Update

Congress is back in session, but not too ambitious about legislating before the election.

September 07, 2012

National Family Voices Announces the Release of the Bright Futures Family Pocket Guide

National Family Voices announces the release of the Bright Futures Family Pocket Guide: Raising Healthy Infants, Children, and Adolescents, 2nd Edition. This small, fun, easy-to-use book is designed to help families support health and wellness for their children at every age.

August 22, 2012

Family Voices Welcomes New Executive Director Lynn Pedraza

Family Voices is pleased to announce Lynn Pedraza, Ph.D. of Albuquerque as the organization’s new Executive Director, beginning the week of August 20. As Lynn joins the staff, the Family Voices Board would like to take this opportunity to thank Dr. Sophie Arao-Nguyen for her dedicated work with Family Voices over the last five and a half years, including as interim Executive Director from July 1 to the present following her notice of resignation.

August 16, 2012

Announcement about Family Voices Conference

Family Voices' Board has released an update on plans for a Family Voices conference.

July 27, 2012

July 27 Washington Update

This week, the White House and disabilities advocates celebrated the 22nd birthday of the Americans with Disabilities Act on July 26. On the same day, the Senate Foreign Relations Committee recommended approval of the UN Convention on the Rights of Persons with Disabilities.

July 20, 2012

July 20 Washington Update

This update provides information about several issues of interest, including the F2F funding bill, ACA implementation and Medicaid expansion, the UN Convention on the Rights of Persons with Disabilities, newly announced initiatives to increase employment among people with disabilities, and new dates for ACA implementation forums.

July 13, 2012

July 13 Washington Update

This update will focus on the legislation to extend federal funding for F2Fs, a new Family Voices effort to help F2Fs use social media (which will help to support the legislation), and implementation of health care reform after the Supreme Court decision.

July 09, 2012

Learn How to Translate the Family Voices Website into Spanish

Set up "Traducelo Ahora" on Your Computer so you can translate the Family Voices website, and anything else, into Spanish.

July 06, 2012

July 6 Washington Update

Congress has been in recess this week, so the health policy community has been intensely focused on analyzing last week’s Supreme Court decision about the Affordable Care Act (ACA).

July 05, 2012

Remembering Katie Beckett's Dedication to Independence & Freedom for Children with Special Health Care Needs

As we celebrate the 4th of July holiday week in 2012, Family Voices invites you to consider what independence means to children with special health care needs and disabilities - and how Katie Beckett was a champion for freedom.

June 29, 2012

June 29 Washington Update

The health care reform law was upheld!!! (But the Medicaid expansion was weakened.)

June 28, 2012

Family Voices Joins Children’s Health Advocates to React to Affordable Care Act Ruling

Family Voices joined seven of the nation’s leading child health and advocacy organizations to react to the U.S. Supreme Court’s 5-4 ruling today to uphold the Affordable Care Act (ACA).

June 26, 2012

National Family Voices Honors Co-Founder Polly Arango on the Second Anniversary of Her Passing

Two years ago today National Family Voices Co-Founder, Polly Arango, passed away, but the systems changes she helped set in motion 20 years ago continue.

June 22, 2012

June 22 Washington Update

It’s been a fairly quiet week in DC as far as health issues are concerned, but our world will be abuzz next week, when the Supreme Court announces its decision on the health care reform law.

June 15, 2012

June 15 Washington Update

This week the Senate Appropriations Committee approved the Senate version of the FY 2013 bill to fund “discretionary” health (and education and labor) programs, including the Maternal and Child Health Block Grant.

June 14, 2012

Family Voices Celebrates the Unsung Heroes of Father’s Day: Dads of Kids with Special Health Care Needs and Disabilities

As Father’s Day approaches, National Family Voices would like to honor and celebrate the roughly 15% of all fathers in the United States who have children with special health care needs and disabilities.

June 12, 2012

Family Voices Interim Leadership Team (ILT) Appointed for July-December, 2012

The Family Voices Interim Leadership Team (ILT) for July - December, 2012 will include Sophie Arao-Nguyen, working part-time as Interim Executive Director, as well as former Deputy Director Rachel Rodriguez, and former Co-Director of the National Center for Family and Professional Partnership, Karen Anzola, both working 10 hours per week as consultants.

June 08, 2012

June 8 Washington Update

This week has been relatively slow with respect to health policy in DC, although there is some good news relating to the F2F funding bill and a federal development of special interest to the autism community.

June 07, 2012

Bev Baker Announced as the New NCFPP Co-Director

It is with excitement that Family Voices announces the hiring of Bev Baker as the NCFPP Co-Director effective June 18, 2012 at 75% time.

June 01, 2012

June 1 Washington Update

Greetings from Washington. This week has been relatively slow with respect to health policy in DC. Although we usually cover only federal news in this update, today we are providing some information about an endangered Katie Beckett waiver in Illinois.

May 31, 2012

As the World Remembers Katie Beckett, Advocates Fight to Keep the “Katie Beckett” Waiver Intact in Illinois

During the week after Katie Beckett’s Memorial Service, the state legislature in Illinois has sent proposed legislation to Governor Quinn that will gut Illinois’ version of the Medicaid provision known as the “Katie Beckett Waiver.”

May 25, 2012

May 25 Washington Update

This week the Department of Health and Human Services announced the Family-to-Family Health Information Center grants for this coming year, the Senate approved a bill that should speed FDA approval of drugs to treat life-threatening conditions, the President asked the Senate to ratify the UN Convention on the Rights of Persons with Disabilities, and government officials mourned the loss of Katie Beckett.

May 24, 2012

Family Voices, Inc. Seeks Executive Director - deadline June 30

FV continues its search for exceptionally qualified candidates to lead the organization. Deadline for applications is June 30.

May 22, 2012

Memorial Service for Katie Beckett, Contact Info, Scholarship Fund, Obituary, HHS & AAP Announcements, & NPR Story

Services for Katie Beckett will be held Thursday, May 24 at Teahan Funeral Home in Cedar Rapids, Iowa from 4-8 pm with a vigil at 4. Her funeral will be Friday, May 25 in Cedar Rapids at St. Matthew’s Catholic Church at 10 am. More information is provided through this link.

May 21, 2012

National Family Voices Announces Preliminary Plan for Interim Leadership Team

Family Voices Board of Directors has asked Dr. Sophie Arao-Nguyen to stay on as Interim Executive Director beginning in July, 2012 and to form an Interim Leadership Team.

May 20, 2012

Family-to-Family Health Information Centers Grantee Meeting

The April, 2012 Family-to-Family Health Information Centers (F2F HICs) Grantee Meeting brought together over 120 individuals from the F2F HICs, the Family Voices National Center for Family and Professional Partnerships (NCFPP), the Maternal Child Health Bureau, and other partners for the purpose of sharing information to help families of CYSHCN.

May 18, 2012

Family Voices Extends Condolences on the Occasion of the Passing of Katie Beckett

Family Voices would like to extend our deepest sympathy to Julie Beckett and Mark Beckett on the occasion of their daughter Katie Beckett’s passing this morning, as well as to Katie’s family, friends, colleagues, and loved ones.

May 18, 2012

May 18 Washington Update

With great sorrow, we report that Katie Beckett, daughter of Family Voices founder Julie Beckett, passed away this morning. From Washington this week, there is some news to report from the Department of Health and Human Services.

May 11, 2012

May 11 Washington Update

This week, another Senator has joined as a cosponsor of the F2F funding bill, HHS released proposed regulations on Medicaid payments for primary care services, and the House passed a bill that would jeopardize Medicaid and CHIP eligibility for children. This update also provides information about two interesting webinars next week.

May 04, 2012

May 4 Washington Update

Congress has been on recess this week, and no new health care reform regulations were issued, so today’s update will be brief. Note, however, a funding opportunity from SAMHSA and an addition to the list of cosponsors for the F2F funding bill.

April 27, 2012

April 27 Washington Update

Greetings from Washington. There are several things to report this week about goings-on in Congress and the Administration.

April 20, 2012

April 20 Washington Update

This update will, once again, review the status of the F2F funding legislation and the implementation of health care reform.

April 13, 2012

April 13 Washington Update

Greetings from Washington. Congress in recess this week, but we have some news from the administration, announcements of an interesting webinar and conference call, and, of course, a status report on the legislation concerning funding of F2F HICs.

April 06, 2012

Family Voices Celebrates World Health Day April 7 With Release of Health & Wellness 1-Pagers for Families

As the World Health Organization celebrates “World Health Day” April 7, 2012 with the theme “Good health adds life to years,” Family Voices is releasing a new series of 1-page fact sheets designed to help families get kids off to a healthy start in life.

March 30, 2012

March 30 Washington Update

As you can imagine, all health-policy eyes in Washington were turned on the Supreme Court this week.

March 30, 2012

New Book: Parents and Professionals Partnering for Children with Disabilities: A Dance that Matters

Written from both the parent’s and the professional’s points of view, this book draws upon the metaphor of dance to highlight the essential partnerships that must be created among teachers, administrators, support staff, and parents of children with disabilities.

March 30, 2012  ·  Karen Weintraub, USA Today

New Research: 1 in 88 U.S. Children Have Autism Spectrum Disorder

Figures released Thursday, March 29 by the Centers for Disease Control and Prevention show a 23% increase in autism spectrum cases from 2006 to 2008, and 78% increase since 2002.

March 28, 2012

Anat Baniel's New Book "Kids Beyond Limits" Presents Ground-breaking, Scientifically-Proven Work about Healing for Children with Special Needs

If you could help a child who cannot walk, walk, or a child that has no friends make friends, would you? Of course you would, and now you can. Anat Baniel’s groundbreaking, scientifically based work with children with special needs demonstrates that these kids can become brilliant learners.

March 21, 2012

Family Voices State Affiliate Organizations Learning from each Other: Experiences from Statewide Parent Advocacy Network of NJ (SPAN NJ)

With this story about SPAN NJ, Family Voices launches a series of State Affiliate Organization “success” stories designed to share and cross-pollinate information.

March 16, 2012

March 16 Washington Update

There are several things to report this week, particularly related to regulations implementing the Affordable Care Act (ACA). But first, an update on the F2F funding legislation.

March 14, 2012

Deadline Extended to March 23 for FV Executive Director Application

Family Voices, Inc. seeks exceptionally qualified candidates to submit applications for the position of Executive Director. Only candidates with required qualifications will be considered. Application deadline has been extended to March 23, 2012. NO CALLS, PLEASE.

March 09, 2012

March 9 Washington Update

This week’s update will once again focus on the F2F funding legislation, and cover a few other items of interest.

March 06, 2012

Family Voices Annual Report Now Available!

Read Family Voices Annual Report for Fiscal Year 2010 - 2011.

March 06, 2012  ·  CharityHowTo.com

Great Resource on Fundraising/Donor Retention for Non-Profits

This webinar called "How to Report Back to Donors: From Newsletters to Annual Reports" presented by CharityHowTo.com is a wonderful resource for any non-profit. The insights it provides are helpful for every aspect of a non-profit's fundraising/development program. The webinar is available for free download.

March 05, 2012

Become a Family Voices Member online today!

Visit our new membership page to get involved!

March 02, 2012

March 2 Washington Update

This week’s update will again focus on the F2F funding legislation, and cover a few other items of interest.

February 24, 2012

February 24 Washington Update & Press Release

Read a press release about this story from the office of Senator Robert Menendez: Congress is on recess this week so it’s been relatively quiet, but we still have news to report. For one thing, we now have bill numbers for the House and Senate bills to extend F2F funding!

February 20, 2012

Family Voices Seeks Executive Director

Applications are now being accepted through March 19 from exceptionally qualified candidates for the position of Executive Director of Family Voices, Inc. NO CALLS, PLEASE.

February 17, 2012

February 17 Washington Update

There have been several developments – both good and bad (but not too bad) -- in our efforts to get funding extended for F2Fs.

February 10, 2012

Executive Director Sophie Arao-Nguyen Announces June Resignation

On January 31, 2012 National Family Voices Executive Director, Sophie Arao-Nguyen, announced her plan to resign effective June 29, 2012. The Family Voices Executive Search Committee has begun a search for a new Executive Director. Read a letter from the Chairman of the Board, and Dr. Arao-Nguyen's resignation letter.

February 10, 2012

February 10 Washington Update

This week we report on the latest developments regarding the F2F HIC legislation and a new rule to help consumers compare health insurance plans.

February 03, 2012

February 3 Washington Update

Once again, this report will focus on legislation to get Family-to-Family Health Information Centers funded beyond FY 2012.

January 27, 2012

January 27 Washington Update

As explained previously, Senator Robert Menendez (D-NJ) and Rep. Frank Pallone (D-NJ) plan to introduce legislation to extend funding for F2Fs through FY 2015 at the current level of $5 million per year.

January 27, 2012

New Family Voices Strategic Plan 2012-2015

Read our new Family Voices Strategic Plan 2012-2015.

January 25, 2012

January 20 Washington Update

As Congress is out of session, this update will be focused entirely on the Menendez-Pallone legislation to extend federal funding for Family-to-Family Health Information Centers (F2Fs).

January 23, 2012

GET THE WORD OUT ON FACEBOOK!

Get the word out about important information.

January 13, 2012  ·  Maternal and Child Health Bureau

Maternal and Child Health-Public Health Leadership Institute

The Maternal and Child Health-Public Health Leadership Institute (MCH PHLI) applications are currently being accepted through February 1st, 2012. All tuition and lodging charges for this program are grant-supported. In addition to no onsite charges, partial travel scholarships will be available for Cohort III.

January 13, 2012  ·  National School Boards Association

Release of a Comprehensive Policy Guide for Protecting Students with Food Allergies

The National School Boards Association (NSBA) is pleased to announce the release of “Safe at School and Ready to Learn: a Comprehensive Policy Guide for Protecting Students with Life-Threatening Food Allergies.”

January 13, 2012  ·  Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB)

Upcoming Conference: "Findings from the 2009-2010 National Survey of Children with Special Health Care Needs."

The Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB) is pleased to announce the next DataSpeak web conference titled "Findings from the 2009-2010 National Survey of Children with Special Health Care Needs." This program will take place on Thursday, January 19, 2012, Time: 2:30-3:30pm, ET (1:30-2:30pm CT; 12:30-1:30pm MT; 11:30am-12:30pm PT).

November 30, 2011  ·  Family Voices, American Academy of Pediatrics

November 29 Congressional Briefings Highlight the Role of Medicaid in Health Coverage for Children from Diverse Populations

"This is a story of Medicaid working. For us, Medicaid covered services that our private insurance didn't, and that are essential for Carissa's health." Dianne Malley with her daughter Carissa whose special health care needs are cared for by Medicaid, presenting at a Congressional briefing on the role of Medicaid in children’s health care, Nov 29, 2011

November 22, 2011

We have moved, but not far.

The only change in our office address is the suite number which will be Suite 103.

November 15, 2011

Awarded Funding for Innovative Evidence-Based Practices

Three family organizations, all of which are either Family Voices State Affiliates and/or Family to Family Health Information Centers, have been awarded funding.

November 12, 2011

Medical Home Setting Lowers Out-of-Pocket Costs

October 17, 2011 — Parents of children with special healthcare needs pay less in out-of-pocket expenses if the children are cared for in a medical home setting, according to a report published online October 17 in Pediatrics.

November 04, 2011

Dr. Michael Lu Appointed new MCHB Director

The U.S. Health Resources and Services Administration (HRSA) announced Thursday, November 3 that they have selected Dr. Michael Lu as the new Associate Administrator for Maternal and Child Health (MCH Bureau Director).

November 04, 2011

Family Voices Friend Allen Crocker Passes Away

What a loss, even though we knew Allen Crocker's death would happen. . .He's left us a a lifetime of memories, wonderful warm good times, and amazing accomplishments....

November 04, 2011

Family Voices Staff Retreat October 24 - 26, 2011

The Family Voices staff retreat took place on October 24 – 26, 2011 at the Hotel Santa Fe in Santa Fe, New Mexico.

November 04, 2011

HRSA issues 2011 report on the health status, health behaviors and use of health care by U.S. women

The Health Resources and Services Administration’s (HRSA) announces Women’s Health USA 2011, the tenth edition of an annual data book identifying priorities, trends and disparities in women’s health, is now available.

October 18, 2011

Family Survey for Centers for Disease Control – Deadline extended: Still Time to Participate

Family Voices is partnering with CDC to collect information from families about their knowledge/attitudes toward flu prevention and treatment - If you are a parent of a child with special needs, please complete a brief survey. Survey will be open until midnight, Sunday, October 23rd.

September 14, 2011

New Survey Released By Centers For Disease Control - Please Plan to Participate

Family Voices is partnering with CDC to collect information from families about their knowledge/attitudes toward flu prevention and treatment - If you are a parent of a child with special needs, please complete a brief survey.

September 08, 2011

New Website Launched For Guiding Young Adults With Autism and Their Families

September 06, 2011

Dr. Judy Palfrey Named as Head of Let's Move Campaign Initiated by Michelle Obama

Leading pediatrician understands the challenges parents face to combat childhood obesity.

September 01, 2011

Lowcost Internet Provided By Comcast to Low Income Families

August 31, 2011

Powerful Documentary Chronicles the History of America's Disability Rights Movement

Tune into PBS to be inspired by pioneers of the movement. Check local listings for time and dates coming this October

August 04, 2011

Family Voices Congratulates Molly Cole as Director of Connecticut's Council on Developmental Disabilities

Molly Cole serves on the Board of Directors for Family Voices and is a long-time champion of children with special health care needs.

July 27, 2011

First Focus Campaign to Hold Children Harmless

Read a compelling letter written to the President and Congressional Leaders asking them to preserve services for children including those using Medicaid. Use this example to write your own letter urging policymakers to protect children with special health care needs.

July 20, 2011

Inspire Hope For Flood Victims in North Dakota

Get creative and let your friends in North Dakota know that YOU care!

July 20, 2011

Please Share Your Experience and Advocacy Stories With the Genetic Alliance

Take a few minutes to inspire and assist other families for the process of becoming an advocate for your child and others

July 18, 2011

The Arc's Excellent Suggestions to Help Preserve Medicaid - Things You Can Do Right Now!

Spend just a few minutes and make a difference in the lives of children with special health care needs that rely on Medicaid.

July 18, 2011

YouTube presentation of Family Voices at White House Event

See and hear the perspectives of families that visited the White House on July 7th, 2011

July 15, 2011

Join the Policy Briefing on Health Insurance Exchange Development on July 27th

July 15, 2011

Social Security Announces New Compassionate Allowance Conditions

July 14, 2011

Georgetown Researchers Release Paper on Importance of Medicaid Featuring FV Families

Researchers provide excellent data on why children and youth with special health care needs must have continued access to Medicaid

July 08, 2011

Family Voices and FV Visitors Featured in White House Blog

The Family Voices contingent that visited the White House on July 7th made quite an impression. To read the full blog go to: Medicaid: More than Just Numbers http://www.whitehouse.gov/blog/2011/07/08/medicaid-more-just-numbers

July 08, 2011

Sweet Tweet for Dianne Malley of SPAN From Senator Mendendez's Office During DC Visit

Check out this tweet that was generated yesterday while FV families visited with their legislators while in Washington DC: http://deck.ly/~wFqIY <http://deck.ly/%7EwFqIY>.

July 07, 2011

White House Visit Today Stirs Passionate Responses to Save Medicaid

A group of parents representing Family Voices met with White House officials today to provide a united and powerful voice on behalf of all children with special health care needs that currently utilize Medicaid programming.

June 30, 2011

FAMILY VOICES GOES TO THE WHITE HOUSE JULY 7TH

June 23, 2011

Celebrating and Remembering the Legacy of Polly Arango - The Power of a Voice

June 20, 2011

The ARC Finds Needs of the Developmentally Disabled Community Often Go Unmet

June 09, 2011  ·  The Catalyst Center

HHS to reduce premiums

Will make it easier for Americans with pre-existing conditions to get health insurance.

June 09, 2011  ·  washingtonpost.com

Report: 15 percent of world population is disabled

Includes about 5 percent of children, according to a new report prepared jointly by the World Health Organization and the World Bank.

June 02, 2011  ·  Genetic Alliance

Congratulations to Betsy Anderson!

Betsy, Family Voices' outgoing IMPACT Project Director, has been named the 2011 Founder’s Service Award winner from the Genetic Alliance.

May 31, 2011  ·  AHRQ via HHS

AHRQ and the Ad Council releases Conoce las Preguntas (Know the Questions)

A new, multimedia Spanish-language campaign to encourage Hispanics to get more involved in their health care and to talk with their doctors about their medical concerns.

May 31, 2011  ·  Pediatrics

New study shows one in six children have a developmental disability

The CDC and HRSA study indicates an increase of 17% during the past 10 years that will require more health and education services.

May 26, 2011  ·  Federal Interagency Forum on Child and Family Statistics via Catalyst Center

America's Children: Key National Indicators of Well-Being report released

Federal data on children and families available to policymakers and the public in a nontechnical, easy-to-use format.

May 26, 2011  ·  HHS via Catalyst Center

Report released on the health status and service needs of America's children

HRSA releases the 20th annual report, Child Health USA 2010

May 26, 2011  ·  The Arc

The Arc to Release Landmark Survey Findings

RSVP now for June 14th release of survey findings from the landmark Family and Individual Needs for Disability Supports study revealing new data showing that individuals with intellectual and developmental disabilities are still living in the shadows.

May 19, 2011  ·  Health Resources and Services Administration

Feds issue Language Access Assessment and Planning Tool for Federally Conducted and Federally Assisted Programs

Tool assists entities to receive federal financial assistance and federal agencies to comply with the language access requirements.

May 17, 2011  ·  AAP Community Pediatrics

AAP Community Access to Child Health (CATCH) Planning Funds and Resident Funds grant opportunities

Includes a special call for projects that benefit American Indian/Alaska Native children and projects to improve access to immunizations.

May 17, 2011  ·  US Dept of Health and Human Services

HHS awards $4.9 million to support families of children with special health care needs

HHS Secretary Kathleen Sebelius today announced $4.9 million in new and continuing grants to support the Family-to-Family Health Information Centers.

May 16, 2011  ·  The Washington Post

States grapple with health insurance exchanges

The ACA describes in some detail how the exchanges are to be set up, but leaves states considerable leeway in how to structure them.

May 10, 2011  ·  Vote Kids

Ad campaign in IA & NY contrasts choice between cuts to children's programs vs. tax breaks

Vote Kids message is clear: invest in, not cut, programs that benefit America’s children and families.

May 10, 2011  ·  The Catalyst Center

Q & A: Finding (and using) data on the importance of programs that improve financing and coverage of care for CYSHCN

Excellent resources available from The Catalyst Center.

May 06, 2011  ·  Kaiser Health News (via the Catalyst Center)

Insurance Options for Uninsured CYSHCN with Pre-existing Conditions

A question & answer session with Michelle Andrews.

May 05, 2011  ·  Kaiser Health News

Legislation Advanced To Repeal Medicaid Maintenance-Of-Effort Provisions

Supporters say it would lead to savings for the federal government of nearly $3 billion over the next five years.

April 29, 2011  ·  Kaiser Family Foundation/FierceHealthcare

More Data Needed On Health Status of Children

The Institute of Medicine and the National Research Council find current practices in the measurement of child and adolescent health and quality of care lacking.

April 28, 2011  ·  Pulse

Military Kids Covered Too

Military dependents under 26 can enroll in the Tricare Young Adult program, the DOD announced yesterday.

April 28, 2011  ·  Family Voices of Alabama

Request for help for families of CYSHCN in Alabama

Help families in Alabama with children or youth with special health care needs who have been impacted by the recent storms.

April 28, 2011  ·  Consortium for Citizens with Disabilities (CCD) Social Security Task Force

Save the Date: Social Security Under Threat! Webinars

The Social Security Task Force is sponsoring a series of webinars to help educate on the topics of the Social Security programs, their importance for people with disabilities, and the potential impact of reforms on people with disabilities.

April 27, 2011  ·  Family Voices

Family Voices responds to Rick Santorum statements

FV: the Affordable Care Act includes several provisions that will alter the health insurance and health care delivery system for children with special health care needs in a way that will fundamentally IMPROVE their lives.

April 26, 2011

Now Available: Webinar on the Culturally Effective Care Toolkit

An online resource of The Healthy Tomorrows Partnership for Children Program.

April 25, 2011  ·  Disability Scoop

Feds propose greater flexibility for community-based services

Proposal would implement new rules that are designed to allow states more flexibility when providing home and community-based waiver services to people with disabilities.

April 21, 2011  ·  Families USA

New Reports and Resources on Health Care Reform, Medicare Available

A plethora of useful resources available online gathered by Families USA.

April 21, 2011  ·  AHRQ

Partnership for Patients to Improve Care and Lower Costs for Americans

A new public-private partnership to make hospital care safer, more reliable, and less costly.

April 19, 2011  ·  Families USA

Resources to help in exchange implementation work

Families USA has developed the issue brief "Implementing Health Insurance Exchanges: Options for Governance and Oversight."

April 19, 2011  ·  Philanthropy News Digest

U.S. Health Care 'Average at Best,' Poll Finds

Harvard School of Public Health poll finds a majority of Americans believe the quality of health care in the United States is average at best.

April 14, 2011  ·  US Government Accounting Office (GAO)

Medicaid and CHIP

Reports for monitoring children's health care services needs improvement released.

April 14, 2011  ·  Family Voices/Kids as Self Advocates (KASA)

The 411 on National Kids As Self Advocates (KASA)

Join this webinar on Wed, April 27 to learn about KASA and its resources.

April 11, 2011  ·  BUILD Initiative

Achieving Cultural and Linguistic Competence: Implications for Systems Supporting the Health and Mental Health of Young Children

Join the online conversation with Tawara Goode this week (April 11-15).

April 11, 2011  ·  The Hill

GOP budget bill slashes CHIP program

Proposal slashes funding for a popular children’s healthcare program, leaving children’s welfare advocates wondering where millions of low-income enrollees would turn for care.

April 07, 2011  ·  American Academy of Pediatrics

10 Tips for Child Advocates

From the American Academy of Pediatrics

April 07, 2011

HHS Action Plan to Reduce Racial and Ethnic Health Disparities and the National Stakeholder Strategy for Achieving Health Equity

The Plan will be released on April 8th, 2011 at 10 a.m. EST. These two documents form a roadmap for reducing health and health care disparities in a comprehensive effort to address differences in health for racial, ethnic, and other underserved communities.

April 01, 2011  ·  American Academy of Pediatrics

April is Autism Awareness Month

AAP autism resources for health care professionals and parents.

March 29, 2011  ·  PBS Newshour

Health Care Reform: You Asked, We Found Answers!

PBS Newshour took questions on the ACA and posed them to four analysts.

March 29, 2011  ·  Cincinnati.com

Mom Advocates for Disabled

An Ohio mom is learning how to be a more effective advocate for all children with disabilities through the LEND training program.

March 25, 2011  ·  Family Voices

Happy Birthday, Affordable Care Act!

This week marks an important birthday – the Affordable Care Act (ACA) was signed by President Obama one year ago, on March 23.

March 17, 2011  ·  Dewey Square Group

Congressional Briefing about Bullying of Special Needs Children

An estimated 60% of children with special needs will be target of bullying while on average, 25% of US students will be a victim of bullying.

March 17, 2011

New report just released by MACPAC (Medicaid and CHIP Payment and Access Commission - a commission established through the ACA)

This report serves as a very good reference document on these two critical programs.

March 14, 2011  ·  The Commonwealth Fund

Blocking Health Care Overhaul Funds Would Add $5.7 Billion to Deficit, CBO Says

Short-term gains are predicted but a block would add $5.7 billion to the deficit over a decade.

March 14, 2011

National Center for Project Access at the Epilepsy Foundation launches new website

The website provides resources and tools to increase awareness and improve access to care for children and youth with epilepsy.

March 11, 2011

$75 million in cuts to State Health Access Grants proposed

The House Appropriations Committee today released another short-term Continuing Resolution (CR) to fund the government until April 8.

March 10, 2011

Call for Outstanding Pediatricians (by Community Pediatrics)

Nominate a pediatrician you believe is doing outstanding work.

March 10, 2011  ·  www.gottransition.org

The National Health Care Transition Center launches website

Check out the "Got Transition?" - opening doors to a healthy future - website here: www.gottransition.org

March 04, 2011

Technology assists teenager to attend school

A teenage boy with a severe chronic health issue attends school with the assistance of a personal robot.

March 03, 2011  ·  The Washington Post

Judge clears way for implementation of health-care law in states that are challenging it

A federal judge in Florida who had previously ruled against the new health-care law has announced a stay of his ruling with two conditions that would fast-track the challenge to the Supreme Court.

February 10, 2011

New Report on CSHCN and the ACA

The Catalyst Center and the National Academy for State Health Policy have released a new report to help state policymakers understand how the Affordable Care Act (ACA) impacts children with special health care needs.

January 12, 2011  ·  www.healthypeople.gov.

Healthy People 2020

Information regarding the U.S. Department of Health and Human Services (HHS) unveiling of the Nation’s new 10-year goals and objectives for health promotion and disease prevention.

January 12, 2011  ·  Huffington Post

Huffington Post: 10 Reasons Why Repealing Health Reform Would Harm Children

An excellent article that gives ten reasons why repealing health reform would be devastating for millions of children and families who already are or soon will benefit from this historic legislation.

January 12, 2011  ·  Kaiser Family Foundation

New 50-State Survey Finds Some States Make Targeted Expansions to Strengthen Coverage

The Kaiser Family Foundation released its findings of a 50-State survey. Results include the fact that some states have made targeted expansions to strengthen coverage and achieve efficiencies as they prepare for health reform.

December 09, 2010

Flu Season is Here

Getting the flu vaccine is the best way to prevent flu.

November 26, 2010

New Funding Cycle for F2F HICs

The new funding cycle is now available for Family-to-Family Health Information Centers.

November 16, 2010

CuidadodeSalud.gov - Consumer Healthcare website in Spanish

The first website in Spanish to help consumers take control of their health care by connecting them to new information and resources.

November 09, 2010  ·  National Public Radio

Families Fight To Care For Disabled Kids At Home

A story about a family who is taking care of their adult daughter who is going to age out of her Katie Beckett waiver.

November 09, 2010  ·  National Public Radio

Katie Beckett: Patient Turned Home-Care Advocate

October 13, 2010  ·  Kansas City Star

Sebelius Leads Efforts to Improve Access to Coverage

Focuses on children with pre-existing conditions; urges states to take action

October 08, 2010  ·  New York Times

Government Helps to Insure Children, Even Above the Poverty Line

October 08, 2010  ·  The Commonwealth Fund

How Will The Affordable Care Act Affect 15 Million Uninsured Young Adults?

October 07, 2010  ·  USA Today

U.S. unprepared to care for kids in major disaster

October 05, 2010  ·  The White House

Statement from the Whitehouse re: HR 1517