Your Input Sought

Nominations Sought for Federal Family Caregiving Advisory Council – due Dec. 3
The Secretary of Health & Human Services (HHS) has posted a Notice requesting nominations for individuals to serve on the Family Caregiving Advisory Council, which was created by the RAISE Family Caregivers Act. Pursuant to the law, the Council’s 15 members will include at least one person from each of the following categories: family caregivers; older adults who need long-term services and supports; individuals with disabilities; health care and social service providers; providers of long-term services and supports; employers; paraprofessional workers; state and local officials; accreditation bodies; veterans; and as appropriate, other experts and advocacy organizations engaged in family caregiving. Nominations must be submitted by Monday, December 3, 2018. A description of the Council, member responsibilities, and procedures for submitting nominations can be found in the 10/12/18 Federal Register.

Comments on the “Public Charge” Rule – due Dec. 10
Since this is such a far-reaching proposal, it is important that as many individuals as possible submit comments for the record about how it would impact them or the populations they work with. Comments will be accepted on this page of through December 10 at 11:59 pm EST.

 Comments on New Standards for ACA Innovation Waivers (§1332 waivers)– due Dec. 24
On October 22, the Centers for Medicare & Medicaid Services (CMS) and the U.S. Department of the Treasury (collectively, the Departments) released new guidance (press release; fact sheet) on waivers authorized by section 1332 of the Affordable Care Act (ACA), which was intended to let states design innovative ways to insure their residents. The newly termed “State Relief and Empowerment Waivers” will let states allow the sale of insurance policies that do not meet all of the ACA’s standards, using criteria that are more flexible than those established by the Obama administration. These alternative plans may provide less robust coverage than would be allowed under the previous guidance, and would not necessarily have to cover pre-existing conditions. The new standards became effective on October 22, but the administration is accepting comments on them through December 24. See the article above and the October 31 Update for background materials.

Comments to FDA about Sesame Allergies – Due Dec. 31
The Food and Drug Administration (FDA) has issued a “Request for Information” requesting input from the public about whether it should require that sesame be listed as an ingredient on food labels to help protect those with sesame allergies. Comments can be submitted here.


MCHB Grand Challenges – deadline extended to Nov. 9 for CYSHCN Challenge

As reported earlier, the Maternal and Child Health Bureau will award four prizes in a Grand Challenges competition to develop innovative, low-cost, and scalable solutions to improve the health of mothers and children across the U.S. The Care Coordination for CSHCN Challenge deadline has been extended until Nov. 9 at 8:00 pm ET (5:00 pm PT). This challenge supports the creation of technology innovations to meet the needs of children with special health care needs and their families. You only need a 5-page description that meets the Submission Requirements and Review Criteria for the CSHCN challenge. Submissions for the challenge relating to Remote Pregnancy Monitoring are due on Nov. 27 (5:00 pm ET) [sic] and submissions for the challenge relating to Opioid Use Disorder in Pregnant Women and New Moms are due Nov. 19 (5:00 pm ET) [sic]. The Childhood Obesity Challenge is no longer accepting applications.

American Academy of Pediatrics Reaffirms Care Coordination Policy Statement and Offers Implementation Resource for Pediatric Clinicians
The American Academy of Pediatrics (AAP) recently reaffirmed its policy statement on care coordination. For pediatric clinicians, care coordination is an important component of the medical home model and has been shown to improve family and provider satisfaction, facilitate a child’s access to services, and improve health care outcomes. The Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems (AAP Policy Statement) has laid the foundation for various care coordination tools and resources developed collaboratively by the National Center for Care Coordination Technical Assistance (NCCCTA) and the National Center for Medical Home Implementation. These free resources include:

These tools and resources are available in the public domain to assist clinicians and other practice staff with care coordination activities. Additional care coordination tools and resources can be found on the NCCCTA Web site. For technical assistance and support, contact

Of Possible Interest

Facility Would House Aging Parents Alongside Adult Kids With Disabilities
(Disability Scoop, 10/31/18) – If you’ve reached your limit for free Disability Scoop articles you can find related content at

Quick: What’s The Difference Between Medicare-For-All and Single-Payer? (Kaiser Health News, 11/5/18)

Study: It’s still too easy to make mistakes in pediatric electronic health records
(FierceHealthcare, 11/5/18)

Learning from Patients’ Experiences Related to Diagnostic Errors Is Essential for Progress in Patient Safety (Health Affairs, Nov. 2018)
When researchers interviewed patients and families about diagnostic errors, the interviewees thought that problems related to patient-physician interactions were a significant factor in causing the errors. From the abstract: “Patients’ perspectives can lead to a more comprehensive understanding of why diagnostic errors occur and help develop strategies for mitigation. Health systems should develop and implement formal programs to collect patients’ experiences with the diagnostic process and use these data to promote an organizational culture that strives to reduce harm from diagnostic error.”

AAP Says Spanking Harms Children (press release, 11/5/18)
In a new policy statement, Effective Discipline to Raise Healthy Children, the American Academy of Pediatrics (AAP) recommends that: “Parents, other caregivers, and adults interacting with children and adolescents should not use corporal punishment (including hitting and spanking), either in anger or as a punishment for or consequence of misbehavior, nor should they use any disciplinary strategy, including verbal abuse, that causes shame or humiliation.” The statement also provides recommendations about how pediatricians can guide parents on questions about child behavior. In addition, the AAP recommends that “Agencies that offer family support, such as state- or community-supported family resource centers, schools, or other public health agencies, are strongly encouraged to provide information about effective alternatives to corporal punishment to parents and families, including links to materials offered by the AAP.” The statement will be published in the December issue of the journal Pediatrics.

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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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