Posted December 15, 2016
News, policy updates, resources, events, and advocacy opportunities
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
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.
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
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.
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
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.
- Patients with Preexisting Conditions Rally for the ACA with #The27Percent
Stat News, 12/15/16
- Trump and the GOP Are Charging Forward with Obamacare Repeal, But Few Are Eager to Follow
LA Times, 12/14/16
- Opinion: Trump Picks for Health and Human Services Signal Radical Restructuring of Medicaid Contemplated, with Coverage for Millions of Children and Families at Risk
Georgetown Center for Children and Families, 11/29/16
- How Accountable Care Organizations Are Improving Patients' Health by Meeting Their Nonmedical Needs – The Commonwealth Fund
- Shining a Light on Teen Mental Health (PDF) – Packard Children's News
- The Complex Child December issue: Behavioral Issues
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 HealthCare.gov.
- A Comprehensive Approach to Managed Long-Term Services and Supports (MLTSS): Assessing Health Plan Partnerships with Community-Based Organizations to Serve Members Who Qualify for MLTSS – Health Management Associates
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
- Feds Target Disparities in Special Education
Disability Scoop, 12/13/16
- Caring for a Loved One at Home Can Have a Steep Learning Curve
Kaiser Health News, 12/12/16
- 'Silas Project' Update: Fragile Child Back in School; Father Seeks Marijuana Medicine for Other Kids
Sacramento Bee, 12/10/16
- Grab Bag of Goodies in 21st Century Cures Act
Kaiser Health News, 12/7/16
- Inclusion Gains Traction Outside the Classroom
Disability Scoop, 12/7/16
- Millions of Workers in Limbo after Rule Expanding Overtime Pay Eligibility Is Put on Hold
Washington Post, 12/1/16
We'd like to hear from you
Let us know what's happening with your organization or family. Email Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Or contact newsletter editor: Eileen Walsh at Eileen.Walsh@lpfch.org.