Posted on July 23, 2015

A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.

Missed a past copy of the newsletter? You can find them all here.


Stakeholder Advisory Board Raises Many Questions About Proposed CCS Redesign
Sharply divergent opinions on the state's Whole Child Model (PDF) to redesign California Children's Services were voiced at the final meeting of the Redesign Stakeholder Advisory Board (RSAB) on July 17. Many of these opinions also were expressed in 20 letters sent to the Department of Health Care Services (DHCS) and in a 23-page list of stakeholder comments (PDF) critiquing various aspects of the proposed plan.

Some members of the RSAB and audience members continued to call on the state to delay implementation of the plan, while DHCS officials presented draft legislative changes (PDF) designed to move the plan forward. Meanwhile, AB 187, which would prohibit changes in CCS until January 1, 2017, is set for a hearing in the Senate Appropriations Committee on August 17. September 11 is the last day for the Legislature to pass any bills, and October 11 is the last day for the Governor to sign or veto.

DHCS officials also released a number of other documents related to plan implementation, including the state's plan for Continuity of Care, a Managed Care Monitoring Overview and an implementation timeline. The RSAB has been dissolved and a new CCS Advisory Committee is scheduled to meet October 7, with many of the same members. The reconstituted workgroups (PDF) will begin meeting in August and September. Updates on the plan may be available on the redesign website.

Also see: Future of Children's Program Up in Air



Health Care Hurdles Highlighted
Several Network members are featured in this article focused on issues facing families of children with special health care needs, particularly a lack of access to specialists in both rural and urban areas. This is the second in a series on access to health care for individuals with disabilities. The first article highlights an innovative Los Angeles clinic that serves individuals with developmental disabilities.

Also see: Those with Medi-Cal Face Difficulty Accessing Care



Family Advocates: Organizations Invited to Apply for 'Train the Trainers'
Family Voices of California and the Lucile Packard Foundation for Children's Health invite California organizations serving families of children with special needs to send one representative to a two-day Project Leadership Train the Trainers workshop in San Francisco. Project Leadership is a parent advocacy training whose overall 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. See the Request for Applications (PDF) for details, and register for an August 5 webinar about the project.

Webinar: Family Engagement in Title V Programs
Friday, July 24
11 a.m. to 12 p.m. Pacific Time
Sponsored by the Association of Maternal and Child Health Programs (AMCHP)

The federal Title V Maternal and Child Health Block Grant provides funding to states to improve the health of women and children, including children and youth with special health care needs and their families. Family engagement is an essential part of Title V programs, yet states and communities struggle with how to meaningfully involve families. With funding from the Lucile Packard Foundation for Children's Health, AMCHP is analyzing family engagement across states' public health agencies and local public health entities in California to identify barriers, best practices and roles of family leaders within Title V programs. This webinar will present preliminary results from the nationwide analysis. Register.



Kern County Project Honored as Promising Practice for Care Coordination
The work of the Medically Vulnerable Care Coordination Project of Kern County, a participant in the 5Cs learning collaborative, has been honored as a Promising Practice by the Association of Maternal and Child Health Programs (AMCHP). AMCHP noted that "this model of community level care coordination accomplished through a community-based collaborative seems replicable and is a potential approach to ease systems use for children and youth with special health care needs. States could use this approach to address delays in access to services due to complex, poorly coordinated systems of care." Read more about the project (PDF).



Feds to Fund Center to Assist Students with Disabilities in Higher Education
The U.S. Department of Education has announced plans to fund a new National Center for Information and Technical Support for Postsecondary Students with Disabilities. Institutions of higher education may apply to operate the center, which would provide technical assistance and information on promising practices for students. Read more.





Fact Sheets for Families
Created by the National Center for Medical Home Implementation and the Catalyst Center, these fact sheets explain specific provisions of the Affordable Care Act that benefit children and youth with special health care needs:  


The Role of Healthcare Professionals in Bullying Prevention
Tuesday, July 28
11 a.m. to 12 p.m. Pacific Time

Sponsored by the Children's Safety Network
This webinar will focus on the role pediatricians can play in screening for, preventing and reducing the impact of bullying. Dr. Matthew Masiello, Chief Medical Officer and Medical Director of Care Coordination for children with complex medical conditions at the Children's Institute of Pittsburgh, will speak.



Let us know what's happening with your organization or family. E-mail Newsletter Editor Eileen Walsh at with your news or updates.