Identifying and Serving Children with Medical Complexity; Foundation Funding Opportunity; CCS Workgroups Meet

Network Newsletter sent on February 28, 2019

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

Children with Medical Complexity

Webinar: Identifying and Serving Children with Health Complexity – Spotlight on “Pediatric Care Together”

Thursday, March 14
10:30 a.m. to 11:30 a.m. Pacific Time
Oregon Pediatric Improvement Partnership (OPIP) and Kaiser Permanente Northwest
Deatils: Health systems play an important role in addressing the unique medical and social factors that affect the health and health care of children with medical complexity (CMC). Speakers from OPIP and Kaiser will discuss their joint effort to use system- and practice-level data to better identify and serve CMC. Read more and register. Also see a publication describing the work in detail. 

In Brief

Network News

Foundation Funding Opportunity: Letters of Inquiry Due

Brief Letters of Inquiry (LOI) for funding from the Lucile Packard Foundation for Children’s Health may be submitted until Monday, March 4. Please read the funding criteria carefully before submitting an LOI. Do not submit a full proposal unless requested.

California Children’s Services

CCS Transition to Adulthood, NICU Workgroups Meet

The CCS Transition to Adulthood Workgroup met February 27 in Sacramento. See the agenda and slide presentation and the member list on the CCS Advisory Group website. The next meeting is scheduled for March 27. The Neonatal Intensive Care Unit (NICU) Workgroup began meeting in February. Those meetings are not open to the public, but results from the workgroup will be shared at future CCS Advisory Group meetings. The next Advisory Group meeting is scheduled for April 10. 


Transition to Adult Care

Family Engagement

National Family Voices’ Tool to Enhance Family Engagement Will Be Focus of Panel at AMCHP Annual Conference

Family engagement is becoming an important aspect of work in both the public and private sectors. Panelists will discuss Family Voices’ upcoming Family Engagement in Systems Assessment Tool in a workshop at the Association of Maternal and Child Health Programs (AMCHP) Annual Conference on March 11. Release of the tool is expected this summer. 

Register for National Family Voices 2019 Leadership Conference

Registration opens tomorrow, March 1, for “Families as Partners Shaping Systems Change,” this year’s national Family Voices Leadership Conference, scheduled for May 8-10 in Washington, DC. Attendees will explore ways to improve supports to families, learn new strategies for managing nonprofits, and increase capacity for families to partner in systems change. Read more

In Brief

  • Family Navigation Story Wall – Family navigators help guide families of CSHCN through the complexities of the health care system to improve their access to care. On this website, family navigators tell their first-person stories about how they became navigators and discuss the challenges, benefits, and rewards of their role.

Care Coordination

Worth Another Look: Ten Essential Characteristics of Care Coordination

Photo of Edward SchorCare coordination is a critical service for CSHCN and their families, but there are multiple definitions, expectations, and approaches to its provision. As a starting point for discussion to advance care coordination provision and measurement, Edward Schor, MD, senior vice president at the Lucile Packard Foundation for Children’s Health, proposes 10 principles, drawn from a review of key indicators of the quality of care coordination. Read more. The original article was featured in JAMA Pediatrics (subscription required).

Also See: Pediatric Care Coordination


National Policy

California Policy

Assembly Subcommittee to Consider Rate Increase for Care Providers

On March 6 a California Assembly Budget Subcommittee will discuss issues affecting people with disabilities, including a request for a minimum 8 percent across-the-board rate increase for providers to stabilize services for people with intellectual and developmental disabilities. Assemblymembers Chris Holden and Jim Frazier have submitted a letter (PDF) to the Senate and Assembly committees documenting the need. The hearing is scheduled for 2:30 p.m. in Room 437 at the Capitol.


How We Are Leading: Voices from Alumni (Cultural Diversity)

Thursday, March 14
11 a.m. to 12:30 p.m. Pacific Time
Leadership Institute for Cultural Diversity and Cultural and Linguistic Competence at Georgetown University
Details: The Leadership Institute is a catalyst for change in networks supporting individuals with intellectual and developmental disabilities. This webinar is first in a series to discuss challenges and opportunities associated with leading cultural diversity and cultural and linguistic competence within developmental disability agencies. Register.

Archived Webinar


2019 Developmental Disabilities Public Policy Conference

March 18 to 20
Holiday Inn Sacramento
300 J St, Sacramento 
The Arc and United Cerebral Palsy
Details: Attendees will explore the theme “Intersections – Where Disability & Life Meet.” People with intellectual and developmental disabilities experience many intersections throughout their lives when critical choices must be made. This conference will explore those intersections and the implications for public policy. Register.

Early Bird Registration Deadline: California School-Based Health Conference

“Advancing Wellness and Best Practices for the Future” is the theme of the California School-Based Health Conference scheduled for May 9-10 in Redondo Beach. Fee. Last day for early bird registration is today, February 28. Read more and register

In the News


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