Posted August 17, 2017

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

California Policy

State Sued over Transfer of Patients from Medi-Cal Fee-for-Service to Managed Care
Two Los Angeles-based consumer advocacy organizations have filed suit against the Department of Health Care Services to prevent some patients from being transferred from Medi-Cal fee-for-service coverage into managed care plans. Patients with complex needs who are scheduled for transfer have the right to file a "Medical Exemption Request" with the goal of maintaining their current health providers. If their request is denied they can appeal to a judge. The suit claims that the Department is contradicting doctors’ opinions and illegally reversing decisions by judges allowing fragile patients to remain in fee-for-service. Read the California Healthline article.

Mental and Behavioral Health

Advisory Panel Urges Improvement in Child Mental Health Services
California's current services for children with mental health or substance use disorders are fragmented, complicated to understand, and difficult to navigate for families and providers. That's the conclusion after a review by the Medi-Cal Children's Health Advisory Panel, an independent board that advises the Department of Health Care Services. The panel has sent recommendations to the Department aimed at improving care, noting that the need for integrated and easily accessible prevention and treatment services is significant. Read the panel's letter to the Department and its recommendations (PDF).

Also see: Nowhere to Turn: California Children with Mental Illness Often End Up in ERs that Aren’t Equipped to Treat Them

National Policy

Children’s Health Insurance Program (CHIP) at Risk
CHIP—the health insurance program that covers children from low- and moderate-income families who are not eligible for Medicaid—is authorized through fiscal year 2019, but its current funding expires September 30. Nearly three-quarters of children with special health care needs live in low- or moderate-income families. CHIP funding renewal is particularly vulnerable now because some members of Congress may try to add amendments related to repealing the Affordable Care Act to the CHIP funding bill. Congress is expected to take up CHIP in September. Read Medicaid Restructuring and Children with Special Health Care Needs from the Kaiser Family Foundation.

Also see: Will Congress Pass CHIP Renewal? (may require free registration)

Health Care Bill Could Be Revived in September
Congress is in recess until September 5, so advocacy groups are urging stakeholders to visit their representatives while they are home to continue to rally against changes to coverage for children with special health care needs. Find out how your Senators voted on the bill that was narrowly defeated on July 28. Some Senators continue to work on passing a repeal of the Affordable Care Act, and others are making efforts to gain bipartisan support for a new health care bill.

Also see:


Toolkit Available—Tablets for Everyone: Hospital Offers App to Engage Patients and Families 
After a successful pilot, American Family Children’s Hospital in Wisconsin has launched a hospital-wide program that provides a tablet-based app to families to allow them to review real-time information about their child’s health care. The team that developed the project has published a free toolkit designed to help other hospitals implement an inpatient portal. Read more.

Family Engagment

Deadline Approaching: Family Voices of California Offers Training-of-Trainers Workshop for Family Leadership
Applications are due September 1 for organizations serving children with special needs that wish to participate in a Family Voices of California two-day Project Leadership Training-of-Trainers Workshop in San Francisco (October) or Los Angeles (November). Project Leadership is a parent advocacy training whose goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Project Leadership is funded by the Lucile Packard Foundation for Children's Health. Read more and apply.

Archived Webinars: Engaging Families in Pediatric Practices and Systems
Webinar recordings and slide decks are now available from a three-part webinar series focused on meaningful family engagement in pediatric practices and systems. A broad range of speakers identified tools, resources, and strategies to strengthen, implement, and measure family and professional partnerships. The series was sponsored by the National Center for Medical Home Implementation, the National Center for Family Professional Partnerships, and Bright Futures National Center. 


Care Coordination Approaches with Children and Youth with Special Health Care Needs & Their Families
Thursday, August 24
10 a.m. to 11 a.m. Pacific Time
Sponsor: Family Voices of Minnesota
Featured speakers are Jeanne W. McAllister, BSN, MS, MHA, and pediatrician Jill Rinehart, MD, FAAP
Read more and register.

Also see: Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs

Managing Social Determinants of Health: A Framework for Identifying, Addressing Disparities in Medicaid Populations
Thursday, September 7
10 a.m. to 11 a.m. Pacific Time
Health Management Associates
Medicaid programs are beginning to analyze social determinants of health as potential causes of health disparities. Speakers will present an analytical framework for understanding the impact social determinants of health have on Medicaid populations. 
Read more and register.


Call for Proposals: Association of Maternal and Child Health Programs (AMCHP) Annual Meeting
Proposals will be accepted until September 1 for the 2018 AMCHP Annual Conference. The conference, which includes a track on children and youth with special health care needs, provides a venue to present ideas, research, innovative programming, best practices, and outreach strategies. Attendees include directors of state programs, federal officials, advocates, family leaders, researchers, and health care providers. The conference is scheduled for February 10-13 in Crystal City, Virginia. Read more.

Funding Opportunities

Webinar: How To Apply for Health Resources and Services Administration (HRSA) Grants
Wednesday, August 23
11 a.m. to 1 p.m. Pacific Time
HRSA Atlanta Office of Regional Operations
An opportunity to learn about programs, priorities, and funding opportunities at HRSA, and how to write a strong application.
Read more and register

Did You Know?

Free Entrance to National Parks for Individuals with Disabilities
The National Park Service offers a free, lifetime Access Pass to US citizens or permanent residents, regardless of age, who have a permanent disability.


In the News

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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.