Posted September 22, 2016

A newsletter to inform advocates for children with special health care needs about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.


New Grant Supports Family Participation in Policymaking
Building on the success of Project Leadership, an advocacy training program for families of children with special health care needs, the Lucile Packard Foundation for Children's Health has awarded a new grant to Family Voices of California to enhance opportunities for families to participate in advisory roles for policymaking. Read more.


Public May Comment on State's Plan to Evaluate CCS Pilots
Consumers have until October 19 to review and comment on the Department of Health Care Services' (DHCS) proposal for evaluating two pilot programs that will test models of care for the CCS program. The outcomes of these pilots eventually could influence permanent restructuring of CCS. DHCS is required to submit a draft evaluation design to the federal Centers for Medicare and Medicaid Services to assess the impact of any pilot projects the state wants to implement. Read more and offer comment.

Also see: Why I'm Fighting the State on Behalf of My Son

CCS Redesign Bill Still Awaits Governor's Action
Gov. Brown has until September 30 to make a decision on SB 586, the "whole-child" bill that makes changes to CCS.

CCS Advisory Group to Meet in October
Wednesday, October 5
10 a.m. to 3 p.m.
1400 J Street, Sacramento
Dial-in: (888) 989-6488; Passcode (listen only): 1945234.
Public comment will be taken at the end of the meeting.
Agenda and meeting materials will be posted on the website.

Quality Assurance Requirements under New Medicaid Managed Care
A series of issue briefs from the Georgetown Center for Children and Families explains quality assurance regulations under the federal government's changes to managed care in Medicaid (Medi-Cal in California). Under its "whole-child model," California plans to move some children in CCS into managed care. One of the briefs, jointly produced with the National Health Law Program, focuses on Looking at the New Medicaid/CHIP Managed Care Regulations through a Children's Lens.

Also see: Webinar – Medicaid/CHIP Managed Care Series: Managed Care Accountability and Transparency
Thursday, September 29
10:30 a.m. Pacific Time
Sponsored by the Georgetown Center for Children and Families
Part of the Center's series on the new Medicaid/CHIP managed care final rule. See background information about the rule, and slides from past webinars.
Register for September 29 webinar.


Center to Highlight Promising Practices in Pediatric Medical Home
The National Center for Medical Home Implementation seeks submissions regarding innovative and promising practices in pediatric medical home implementation. Selected projects will be featured on the website. See criteria and how to apply.


FAQs Answered from Webinar: Looking Outside Hospital Walls: Care Coordination for Children with Medical Complexity (PDF) – Children's Hospital Association
See archived webinar.


Study: Collaboration Improves Hospital Discharge Process for Children
Eleven US children's hospitals participated in a collaborative to test various intervention strategies to improve discharge planning. Collaborative participants had lower rates of discharge-related failures and improved family perception of readiness for discharge. Read the abstract from Pediatrics.

In Brief:


Two from the Catalyst Center

  • The Financing Strategies section of the Center's website outlines strategies that states are using to improve financing of care and coverage for children and youth with special health care needs.
  • Dancing with Data offers tips on how to combine data with family stories to advocate effectively for policy improvements.

Apply: Summer Internships in DC for Youth with Disabilities
Applications are due November 7 for the Summer Internship Program sponsored by the American Association of People with Disabilities (AAPD). The program places college students, graduate students, law students, and recent graduates with all types of disabilities in paid 10-week summer internships in Congressional offices, federal agencies, nonprofit, and for-profit organizations in the Washington, DC, area. Interns also are provided accessible housing, and are matched with a mentor. Read more and find application materials.

Other Useful Resources


Caring for the Caregiver
Monday, September 26
6 to 7 p.m. Pacific Time
Sponsored by the Family Network on Disabilities
Read more and register.

"I Got Hired!" Increasing Employment of Youth & Adults with Developmental Disabilities
Thursday, September 29
10 to 11 a.m. Pacific Time
Sponsored by the USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Read more (PDF) and register.

Care Integration: A Hospital System Approach to Community Integration
Thursday, September 29
12:30 to 1:30 Pacific Time
Hosted by the Center for Care Innovations
Will feature a team of presenters from Children's Health in Dallas discussing the hospital's system-based approach to community integration.
Learn more and register.


The Use of Social Media to Enhance Communication and Dissemination – from the Association of University Centers on Disabilities



Let us know what's happening with your organization or family. Email Program Associate Danielle DeCosta at with your news or updates. Newsletter Editor: Eileen Walsh