A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.
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Signatures Sought to Support Bill Extending CCS Carve-Out from Medi-Cal Managed Care
Children Now and the California Children's Hospital Association are among the organizations seeking to rally support for AB 187 (Bonta) to extend the carve-out of California Children's Services from Medi-Cal managed care until January 2017. Advocates are asking organizations to attach their signatures and logos by August 10 to a letter to the chair of the Appropriations Committee, where the bill is set for a hearing on August 17. Read the letter (PDF) and a series of talking points (PDF) outlining advocates' reasons for opposing the state's Whole Child Model (PDF) and its draft legislative changes (PDF). Organizations may sign the letter by contacting barellano@ccha.org.

CCS Redesign Technical Workgroup Meeting Postponed
The August 12 meeting of the newly constituted CCS Technical Workgroup on Care Coordination, Medical Homes and Provider Access has been postponed. Meeting dates for that workgroup and the workgroups on Data and Performance Measures and Eligible Conditions, as well as the CCS Advisory Group, will be posted on the DHCS website. See descriptions (PDF) of the workgroups and more about the topics they will address. Questions about the redesign should be sent to CCSRedesign@dhcs.ca.gov.



Report: Realizing the Promise of Telehealth for Children with Special Health Care Needs

Realizing the Promise of Telehealth   Families of children with special health care needs are painfully acquainted with the frequent difficulty of gaining access to specialty care, especially in rural areas. One emerging solution is the use of telehealth technology to allow for remote appointments. Though telehealth has proven to be an effective tool, California health care providers and families are not taking full advantage of its possibilities. A new report explores the barriers to use and proposes some solutions. Read the report and a related fact sheet.

Also see: Telehealth Niche for Special-Needs Kids

American Academy of Pediatrics Evaluates Potential Impact of Telemedicine in Pediatrics

Study on Children with Medical Complexity to Be Presented to Hospital Association Leaders

Standards for delivering care for children with medical complexity will be the topic of a presentation at the Children's Hospital Association 2015 Annual Leadership Conference. The session will include findings from the report The Missing Piece: Medical Homes for California's Children with Medical Complexity, funded by a grant from the Lucile Packard Foundation for Children's Health. The report analyzes the efforts of 11 California medical centers to develop complex care clinics capable of delivering comprehensive quality care, and outlines the many challenges to developing these clinics. Read the report.   The Missing Piece


Managing Chronic Illness throughout Childhood
Researchers from the Group Health Research Institute (GHRI) are developing a conceptual model for managing a child's chronic illness at different stages of life, including the transition to adulthood. The model builds on the Chronic Care Model, a widely used approach to managing chronic illness in adults that was developed by GHRI. As part of the child health work, which is funded by a grant from the Lucile Packard Foundation for Children's Health, researchers held a series of focus groups with parents of chronically ill children and young adults who grew up with a chronic illness. Read Growing Up Is Hard to Do—Especially When You Have a Chronic Illness.

Also see: Transition to Adult Care: What’s Age Got to Do with It?



Now Online: Webinar on Health Homes for Patients with Complex Needs
On July 23 the Department of Health Care Services presented a webinar on frequently asked questions about the state's concept paper on developing health homes for patients with complex needs. The Health Homes Program is an optional Medi-Cal benefit that helps coordinate access to medical and behavioral health services and provides links to community supports. The meeting materials and slides now are available online along with a recording of the webinar.

Behavioral Health Treatment for Autism – Stakeholder Webinar
Friday, August 14
3 p.m. to 5 p.m.
The call-in number for the webinar will be posted on the Behavioral Health Treatment website.

Also see: Study: High Cost of Autism to California



Addressing Disparities and Disproportionality in Systems Serving Individuals with Intellectual and Developmental Disabilities
Friday, August 14
11 a.m. to 12:30 p.m. Pacific Time
Sponsored by the Leadership Institute for Cultural Diversity and Cultural and Linguistic Competence
Learn more and register.



Trust Parents' Instincts: Screening Tool Helps Identify Developmental Delays
According to the American Academy of Pediatrics, studies show that parental concerns about their child’s development are reliable, but parents will stop expressing those concerns if their physician doesn't address them. Routine screening according to AAP guidelines (PDF) helps identify developmental delays early. The Centers for Disease Control and Prevention also provides a tool to assist parents in monitoring their child’s development. See Learn the Signs, Act Early.

Other Useful Resources:  


Videos: How to Select Health Insurance through ACA
The National Disability Navigator Resource Collaborative has released six "Health Insurance Jeopardy" videos addressing topics that people with disabilities should consider when selecting an insurance plan in the ACA marketplace. Among the topics: summary of benefits and coverage, prescription drugs and medical equipment. View the videos.


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


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The California Advocacy Network for Children with Special Health Care Needs is a collaborative organized by the Lucile Packard Foundation for Children's Health.