Posted November 2, 2017

News, policy updates, resources, events, and advocacy opportunities

Quality Standards

Photo of Standards of CareNew Website Streamlines Use of Quality Standards

A new interactive website simplifies use of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0. Created by the Association of Maternal & Child Health Programs (AMCHP), in partnership with the National Academy for State Health Policy (NASHP), the Standards set the core components for the structure and process of effective systems of care for CSHCN. The Standards were created with funding from the Lucile Packard Foundation for Children's Health. See a short informational video about the website.

Webinar: Serving CYSHCN in Medicaid Managed Care: Contract Language and the Contracting Process

Thursday, November 16
10 a.m. to 11 a.m. Pacific Time
Sponsor: The Association of Maternal and Child Health Programs and the National Academy for State Health Policy
Details: Discussion of a new tool (PDF) that can be used alongside the National Standards for Systems of Care for CYSHCN.
Read more and register.

Webinar: Leveraging Medicaid Quality Metrics to Improve Care for Children with Special Health Care Needs

Monday, November 27
11 a.m. to 12 p.m. Pacific Time
Sponsor: The National Academy for State Health Policy and the Lucile Packard Foundation for Children's Health
Details: Quality measurement is a critical component of all state Medicaid programs. A variety of strategies are available to states to leverage quality metrics to improve health care and quality of life for CSHCN and their families. This webinar examines the current landscape, challenges, and key strategies for states conducting quality measurement for these children.
Read about the speakers and register.

California Children's Services

Wanted: Experts to Serve on Performance Measures Subcommittee for CSHCN Programs

The Department of Health Care Services (DHCS) is seeking volunteers interested in participating on a Performance Measures Subcommittee regarding its programs serving children with special health care needs. The subcommittee's purpose is to ensure that performance measures for all programs, including the CCS Whole-Child Model, are consistent across the state. Subcommittee members will include clinicians, county representatives, and individuals well versed in CCS data. Nominations are due to CCSRedesign [at] by 5 p.m. on Wednesday, November 15. See a summary (PDF) of the performance measures evaluation of the Whole-Child Model.


Actions States Can Take to Improve Systems of Care for Children with Special Needs

The National Conference of State Legislatures has published an overview of programs, funding and policy options, standards, and data that states have used, or may consider using, to improve systems of care for children and youth with special health care needs and their families. The report outlines a breadth of recommendations, including simplified insurance enrollment procedures, improved early screening, supporting home visiting, expanding the use of telehealth, and more. Read the report (PDF).

Milestones Matter! New App Makes It Easy to Track Developmental Milestones

Families and care providers can track a child's milestones from ages 2 months to 5 years with the Centers for Disease Control's free Milestone Tracker Mobile App. Interactive checklists with photos and videos make tracking milestones easy and fun. The app generates a personalized summary to share, offers tips for encouraging development, and information about what to do if concerns arise about a child's development.

In Brief

National Policy

It's Time to Enroll for Health Insurance

A shorter open enrollment period for the Health Insurance Marketplace this year means that families should act now to be covered for 2018. Enrollment closes December 15. See Covered California or for full information.

Also see: Confusion Abounds as Obamacare Open Enrollment Period Approaches.

Vote Pending on Children's Health Insurance Program

The House is expected to vote Friday on renewing funding for the Children's Health Insurance Program (CHIP), which expired September 30, putting nine million children at risk of losing health coverage. Many states, including California, will run out of funding in the next few months. Negotiations are ongoing, as Democrats are unwilling to support the current version, which cuts other child-serving programs to support CHIP.

Also see: What Are the Consequences of Congressional Delay on CHIP?

Supplemental Security Income (SSI) Benefits to Increase

The Social Security Administration has announced a 2 percent cost-of-living increase beginning on December 29, 2017. Read more.


Note: November has been designated National Family Caregivers Month by Presidential Proclamation since 1997. This recognition acknowledges the estimated 90 million Americans who care for individuals with chronic illnesses, disabilities, or the frailties of age.

Addressing Compassion Fatigue and Burnout

Caring for individuals with serious and complex needs can lead to burnout and compassion fatigue for care providers in the workforce. A new report discusses the symptoms of these conditions, such as stress, isolation, anger, and fatigue, and offers suggestions for addressing them. Family caregivers also may be interested in the information, which is provided by the SAMHSA-HRSA Center for Integrated Health Solutions. Read more.

Caregivers Sought to Participate in Survey

Researchers at the University of North Carolina, Chapel Hill, are seeking caregivers to complete a 10-minute survey that asks about what people in the general population say to them after learning that they are caregivers. The study aims to recruit 2,000 caregivers by March 2018. Learn more and participate here.


Mom with childDon't Know Any Young Moms With Special Needs Kids? They Probably Unfriended You

A mother talks about daily life raising a child with a rare genetic mutation, and how it can feel like living in an "alternative reality." Read her story.

Family Engagement

Tool Kit Offers Guide to Involving Families in Pediatric Practices

Improving family engagement in health care is the goal of a quality improvement project at the National Center for Medical Home Implementation. A fact sheet (PDF) that highlights lessons learned from the project is available now, along with a Family Engagement Quality Improvement Toolkit for use by clinicians, Title V staff, family organizations, and others interested in learning about family engagement and quality improvement methodology.


Privately Insured Children More Likely than Publicly Insured to Get Subspecialty Consults in ER

Pediatric patients who were transferred to a pediatric tertiary care emergency department were significantly more likely to be referred for subspecialty consults if they had private insurance compared to publicly insured children, according to a study in the American Journal of Emergency Medicine. The study also noted that privately insured pediatric patients were more likely to be recommended to consult with a surgical subspecialist. Read more (free registration may be required).

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email newsletter editor Eileen Walsh at eileen.walsh [at] with your news or updates.