NEW Survey to Improve Caregiver Hospital Experience
The Massachusetts Institute of Technology (MIT) is analyzing the hospital visitor experience. If you are someone in the United States that has either visited a loved one in a hospital OR identifies as a primary caregiver for someone with a condition, you are eligible to participate in this research study. The 3-minute survey is intended to help improve caregiver hospital stays. To take the survey, click HERE.

FEMA National Advisory Council – Due March 15, 2019
The Federal Emergency Management Agency (FEMA) is accepting applications until March 15, 2019, for 12 open positions on its National Advisory Council. They are seeking one person to fill the slot called “Disabilities, Access and Functional Needs.” This person must be in a position to represent one or more of these groups: individuals with disabilities, older adults, and individuals with limited English proficiency, access to transportation, and/or access to financial resources to prepare for, respond to, and recover from an emergency. For more information see the Membership Application Information and Instructions (also in PDF).

Pain Management Task Force Draft Report – Due April 1, 2019
The Comprehensive Addiction and Recovery Act of 2016 (CARA), requires that the public be given at least ninety (90) days to submit comments on any proposed updates and recommendations developed by the Pain Management Best Practices Inter-Agency Task Force (Task Force). The Task Force is requesting comments on its Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations (PDF), which includes sections on Unique Issues Related to Pediatric Pain Management; Sickle Cell Disease; and Health Disparities in Racial and Ethnic Populations, Including African-Americans, Latinos, American Indians, and Alaska Natives. Submit comments.

SNAP Work Requirements – Due April 2, 2019
Earlier this month, the U.S. Department of Agriculture announced a proposed rule that would enforce time limits on SNAP (food stamp) benefits for individuals who do not document sufficient weekly work hours. Comments are due April 2, 2019.

Electronic Health Information – May 3, 2019
On Monday, February 11, 2019, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule intended to facilitate the use of electronic health information and promote patient access to and control over their health information. See the CMS Fact Sheet CMS will accept comments on the major provisions in this proposed rule until early April (exact date will be updated upon posting at the Federal Register).


Family Navigation Story Wall –On this website, family navigators for families of CYSHCN tell their first-person stories about how they became navigators and discuss the challenges, benefits, and rewards of their role.

Child Enrollment in Public Health Programs Fell by 600K Last Year
(Pew Stateline, 3/8/19)

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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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