Posted August 3, 2017

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

Network News

Foundation Grant Supports Development of Model for Complex Care Clinics
Many academic medical centers house complex care clinics that can serve as medical homes for children with chronic and complex conditions, centralizing service and care coordination. However, these clinics often face challenges when they try to create partnerships with community pediatric practices. To address this issue, the Lucile Packard Foundation for Children's Health has made a planning grant to the Cottage Children's Medical Center at Santa Barbara Cottage Hospital to develop a model of a community-based complex care program emphasizing care coordination. Read more

California Children's Services

State Seeks Comment on Pediatric Palliative Care Waiver Renewal
The Department of Health Care Services is accepting comments on its proposal to renew the Pediatric Palliative Care Waiver. The waiver serves children who have a CCS-eligible medical condition with complex needs. The waiver allows curative treatments in addition to palliative care and helps children remain at home. The 30-day comment period begins August 4. Comments may be sent to CCSPPC@dhcs.ca.gov until September 6 at 5 p.m. Read more

Reminder: Take a Family Voices Parent Survey on CCS Pending Changes
Families whose children receive CCS services in one of the 21 counties (PDF) where children are scheduled to be transferred into Medi-Cal managed care in 2018 are invited to share questions and concerns by taking a short survey prepared by Family Voices of California, which is interested in learning how the organization can help families during the transition process. Take the survey in English or español.

Also see: Alabama Scuttles Plans for Managed Care (may require free registration)

National Policy

Advocates Call for Bipartisan Approach to a New Health Care Bill
Advocacy groups are reminding constituents to thank their senators who voted against the health care legislation last week, noting that the next steps in Congress are unclear but some legislators have not yet given up on repeal and replace. Organizations, including Family Voices (PDF) and the National Health Law Program, say that stakeholders must continue to counter efforts to undermine the Affordable Care Act and support a bipartisan, transparent approach to health care reform. Find your senators.

Also see:

California Policy

  • As of July, an updated membership list (PDF) is available for the Department of Health Care Services Stakeholder Advisory Committee. Committee members advise the Department on how it implements its programs, including California Children’s Services. 

Family Engagement

Registration Open for Family Voices National Leadership Conference
Family Voices’ 2017 leadership conference will be held in November in Washington, DC, bringing together Family-to-Family Health Information Centers, Family Voices State Affiliate Organizations, other family-led organizations and family leaders, and professional stakeholders. The theme is "Weaving a Tapestry of Strength Through Diversity," and early-bird registration is now available. Read more and register

Research

A Call to Improve Relationships Between Primary Care Pediatricians, Specialists
As the number of children with chronic and complex conditions continues to grow, the need for specialty care increases, yet access often is limited. A commentary in the The Journal of Pediatrics reflects on the need to improve interactions between primary care pediatricians and specialists, and offers potential solutions to improve care delivery. The article touches on issues such as access, communication, care coordination, and family-centered care. Read the commentary.

Related—Great Expectations: The Challenge to Pediatric Practice in the 21st Century
The demands placed on pediatric practices are getting out of hand, writes pediatrician Edward Schor, and he suggests that it is long past time for a major redesign of both training and practice. Read his blog

Resource

  • ABLE National Resource Center Launches #ABLEtoSave Campaign – An educational campaign to inform the public about Achieving a Better Life (ABLE) accounts. These accounts allow individuals with disabilities to open tax-advantaged savings accounts without jeopardizing benefits such as Medicaid and Supplemental Security Income.  

Webinar

Introduction to the National Family Support Network’s Parent Advisory Committee Training and the Standards of Quality for Family Strengthening and Support
Wednesday, August 16
9:30 to 10:30 a.m. Pacific Time 
Sponsor: National Family Support Network
Learn more and register

Mental and Behavioral Health

Webinar—Mental Health Parity: Assuring Equal Access to Treatment for Children and Youth in California
Wednesday, August 16
12 to 1 p.m. Pacific Time
Host: Family Voices of California
This webinar will present information about the federal and state mental health parity laws, and provide attendees with the knowledge, skills, and tools needed to appeal the denial of insurance coverage. 
Learn more and register

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@lpfch.org with your news or updates. 

Take Action!

Newsletter

Join forces with the 1200+ members of the California Advocacy Network for Children with Special Health Care Needs.