Posted November 3, 2016

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

Network News

New Grants Address Quality Measures, Tiering of Services, and Family Engagement
The Lucile Packard Foundation for Children's Health has made three grants aimed at improving the health system for children with special health care needs. One grant will support efforts to expand use of quality metrics in assessing care for children covered by Medicaid and managed care. A second will focus on providing more efficient and effective services for children with complex conditions through development of standardized categories, or tiers, based on the child's and family's need for services. A third grant will support development of tools to measure the impact of family engagement in policymaking for children with special health care needs. Read more about the grants.

Care Coordination

Coming Up on November 9: Webinar on Developing a Plan of Care
It's not too late to sign up for Beyond Checklists: Care Planning for Children with Special Health Care Needs, a webinar sponsored by Family Voices, the Catalyst Center, and the Lucile Packard Foundation for Children's Health. Two experts will discuss their approaches to the process of care planning. Register now.
Wednesday, November 9
10 to 11 a.m. Pacific Time; 1 to 2 p.m. Eastern Time

Online: Care Mapping How-To Guides for Families and Professionals
Care mapping is a process that guides and supports implementation of family-centered, coordinated care. Boston Children's Hospital has created two guides to help families and pediatric professionals collaborate on the creation and use of care maps to enhance the pediatric medical home model.

California Children's Services

State Updates Answers to Questions about CCS Redesign and Whole-Child Model
An October update from the Department of Developmental Services covers frequently asked questions (PDF) about implementation of the whole-child model, the impact on enrollees in affected counties, and the future of CCS.

California Policy

New Law Addresses Transportation Requirements for Medi-Cal Beneficiaries
After decades of legislation and lawsuits, a new law is now on the books that requires Medi-Cal managed care plans to provide transportation services to members when they cannot access health care services without help. The law goes into effect in July 2017. Read Lessons from CA: Ensuring Medi-Cal Plans Provide Transportation Assistance, prepared by the National Health Law Program.

Medi-Cal Children's Health Advisory Panel to Meet
Tuesday, November 15
10 a.m. to 2 p.m.
Department of Health Care Services, 1700 K Street, 1st Floor conference room, Sacramento
888-469-1573; Passcode: 2862614
To view the agenda and meeting information, check the website.


Home Health Nursing Care and Hospital Use for Medically Complex Children
A study published in Pediatrics found lower rates of readmission to hospitals for children who received home health care after discharge than for those who did not receive such care. The researchers were exploring whether home health nursing care may be a valuable approach to long-term optimization of health for children, particularly those with medical complexity. Read the abstract.

In Brief

Family Engagement

Engaging Parents, Developing Leaders
Many nonprofit organizations and schools are interested in finding better ways to work with and engage families. The Annie E. Casey Foundation has released a toolkit that provides a self-assessment and planning tool for organizations to see how they are faring. See the toolkit.



Every Student Succeeds Act (ESSA) – How It Affects Students with Intellectual/Developmental Disabilities
Thursday, November 17
10 to 11 a.m. Pacific Time
USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Learn more (PDF) and register.

Understanding the Investment Side of ABLE
Tuesday, November 15
11 a.m. to 12:30 p.m. Pacific Time
National Disability Institute
Read more and register.


Association of University Centers on Disabilities 2016 Conference – Navigating Change: Building Our Future Together
December 4-7
Washington, DC
Highlighting the change that comes at the end of a presidential term as well as the need to work together to create a future in which children and adults with disabilities are able to participate fully in all aspects of life.
Read 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 Danielle DeCosta at with your news or updates. Or contact newsletter editor: Eileen Walsh at