Posted December 15, 2016

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

Network News

Family Stories

Evan Gates and his father, James; photo by Deanne Fitzmaurice

Photo Project Captures the Real Lives of "Super Parents"
Earlier this year, ten California families with medically complex children allowed Pulitzer Prize-winning photographer Deanne Fitzmaurice into their lives for a day. The result, produced by the Lucile Packard Foundation for Children's Health, is a photographic journey through the constant demands and joyful moments of family life. View individual photo essays for each family, and share your own story to help build the collective voice of the millions of families who are caring for children with special health care needs.

Also see CNN coverage: An Intimate View of the "Super Parents" of Chronically Ill Children

Care Coordination

Shared Plan of Care: A Tool to Support CSHCN and Their Families
Content and process are equally important in developing a shared plan of care for children with special health care needs, according to a new fact sheet published by the National Center for Medical Home Implementation and the National Academy for State Health Policy. The fact sheet recommends content to include in a plan, and provides examples of templates and tools for use by clinicians, families, and others involved in care. It also provides examples of how state programs and agencies are implementing and using shared plans of care for children and youth with special health care needs. Read the fact sheet.

Also see: Webinar Describes Care Planning Process for Children with Special Health Care Needs

California Children's Services

Next CCS Advisory Group Stakeholder Meeting
Wednesday, January 11
10 a.m. to 3 p.m. Pacific Time
Sacramento Convention Center, 1400 J Street, Room 204
(888) 989-6488; Passcode (listen only): 1945234
More information.

Family Engagement

A Voice for Youth at Family Voices Sacramento Summit
For the first time, youth who attend the Family Voices of California Health Summit in Sacramento will have the opportunity to participate in a track dedicated to, and led by, youth and young adults. The goal is to educate those in attendance on the aspects of health care that are critical to consider as young people with special needs transition from pediatric to adult care. Register for the summit.

California Policy

Developmental Disabilities: Outside the Safety Net
An estimated 400,000 Californians with developmental disabilities (more than half of those in the state) do not meet the criteria to qualify for services from the state's Regional Center system, according to a new policy note from the UCLA Center for Health Policy Research. Although some of those individuals may qualify for health insurance under the Affordable Care Act, they would not receive the wider range of benefits offered to Regional Center clients. The policy note also reports on persistent racial and ethnic disparities in expenditures at Regional Centers. Read the policy note.

See also: Marked Racial Disparities in Money Spent to Help Disabled (Regional Center clients), California Health Report, 12/12/16

National Policy

Opinion: Pre-Existing Conditions and Republican Plans to Replace Obamacare
In a Wall Street Journal Think Tank column, Drew Altman, president and chief executive officer of the Kaiser Family Foundation, discusses new data highlighting why pre-existing conditions could be a flashpoint issue in the Affordable Care Act repeal and replace debate. Although details of the Republicans' plans are not yet known, a recent Kaiser poll found that 53 percent of Americans said they or a family member had a pre-existing condition and could be affected by a policy change.

See also:


Affordable Care Act

Deadline: Sign Up for Health Insurance
The Covered California deadline to enroll in a health insurance plan for coverage to begin on January 1 has been extended until midnight on December 17. For consumers in most other states, today, December 15, is the last day to choose plans on

Archived Webinar


Coalition for Compassionate Care of California 9th Annual Palliative Care Summit
March 13-14, 2017
One breakout session includes three young adults who will talk candidly about growing up and living with a life-threatening illness.
Early-bird registration by January 13. Fee.


In the News

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