A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.
Please forward the newsletter and encourage your colleagues and constituents to join the Network.


Tomorrow: Redesign Stakeholder Advisory Board Meeting Changed to Webinar
The agenda (PDF) now is available for the webinar that will be held from 10 a.m. to noon tomorrow, Friday, May 29, in place of the scheduled in-person meeting of the CCS Redesign Stakeholder Advisory Board (RSAB). The webinar agenda includes updates from the technical workgroups, information about the Department of Health Care Services' Program Improvement process and discussion of next steps for the redesign. Join the webinar here. Call-in number (listen only) is 888-921-8686. Passcode is 961 640 6431. The next in-person meeting is scheduled for June 22. Details about meetings are posted on the redesign website. Write to CHPR_CCS@em.ucla.edu for more information.



Transition to Adult Care: What's Age Got to Do with It?
The transition to adult medical care often presents challenges for adolescents with chronic health problems, their families and their care providers. In a provocative article just published in Pediatrics, Edward L. Schor, MD, offers a proposal for innovative collaboration among physicians based on the patient's condition rather than an arbitrary age. Read more.

Also see: Doctors Largely Unprepared to Treat Adults on the Spectrum


Webinar: Promoting a Lifetime of Health and Well-Being for California Children
Tune in on June 2 for a webinar focused on the strengths and limitations of California's current health care system for children and families. Experts will discuss a recent report from the California Budget & Policy Center and review the report's recommendations for how public policy can bolster support for children's health and well-being. The report was funded by the Lucile Packard Foundation for Children's Health. Read more.

Full Funding of Medi-Cal Is Focus of June 2 Rally
“Medi-Cal Matters” is the theme for a rally scheduled at the west steps of the State Capitol building in Sacramento on Tuesday, June 2, from 11 a.m. to 3 p.m. More than a dozen organizations are sponsors of the event. Many children with special health care needs are covered by Medi-Cal, and California's provider reimbursement rates are among the lowest in the nation. Read more.

Also see: Medicaid Facts: California (PDF),
Governor Plans to Put Federal Children's Health Money Into General Fund and
Medi-Cal Director Talks Shortages and Modernization
State Budget: Advocates Seek Support for Developmental Services
As the Senate and Assembly consider the state's budget, The Arc of California and other organizations concerned with the developmental services system continue to ask advocates to contact their legislators in support of a 10 percent across-the-board increase for services and programs. Read more.

Council on Developmental Disabilities Requests Consumer Opinion
The California State Council on Developmental Disabilities is conducting a survey about the state's system of services and supports for people with intellectual and developmental disabilities. The Council will use the information in writing its five-year state plan. Take the survey in English or español.



Assuring Adequate Health Insurance for CSHCN: Progress from 2001 to 2009-2010
An examination of the 10-year trend in providing adequate private or public health insurance for children with special health care needs has found an overall decrease in the number of children without insurance. The study, published in Academic Pediatrics, also found a decline in private insurance and an increase in public coverage for CSHCN, as well as persistence of inequities in public coverage for CSHCN based on a variety of factors. See the abstract and read more about the findings.



  UC Berkeley Roundtable Offers Perspectives on Children with Special Health Care Needs
"The Changing Landscape for Children with Special Health Care Needs in California" was the focus of an April event sponsored by the UC Berkeley School of Public Health. Topics included pressing policy issues for CSHCN, a parent's perspective on systems integration, and research on planning for the transition to adult care. For a summary of the event, and to access videos of some of the presentations, scroll down to page 9 of this PDF.

Board Members Sought for Youth Advocacy Group
KASA (Kids as Self Advocates) is seeking youth ages 13-26 with a disability to join its Advisory Board. KASA is a youth-run disability rights organization that aims for system change by producing educational materials and encouraging youth to become involved in their communities. Read more about KASA and the advisory board (PDF) and view and download (PDF) the fillable form to apply.



Feds Propose Rule on Medicaid Managed Care
In the first update in more than a decade, the federal Centers for Medicare & Medicaid Services (CMS) has posted a proposed rule to govern managed care regulations in Medicaid and the Children's Health Insurance Program (CHIP). The proposed rule will be posted in the Federal Register on June 1, and the deadline to submit comments is July 27. A summary of the key provisions is available here (scroll down).

Also see: CMS Unveils Proposed Rule for Medicaid Managed Care Plans,
New Medicaid Rules Put States in Tough Position and
CMS Fact Sheet: Improving the Beneficiary Experience (PDF)

Funding Extended for Family-to-Family Health Information Centers
As part of the recently passed Medicare Access and CHIP Reauthorization Act of 2015, the federal government will award $5 million in grants to support Family-to-Family Health Information Centers, the nonprofit organizations run by and for families with children and youth with special health care needs. In California, the San Francisco-based Support for Families of Children with Disabilities was awarded one of the grants. Read the announcement.



The ADA & Your Disability Identity
Friday, May 29
1 p.m. to 2:30 p.m. Pacific Time
Sponsored by the National Collaborative on Workforce and Disability for Youth
A youth-driven webinar to provide youth and their adult allies with an understanding of the rights provided under the ADA and its impact on youth disability identities.
Register here.

Trauma and Healing in the Lives of People with Disabilities
Tuesday, June 2
1 p.m. to 2:30 p.m. Pacific Time
Sponsored by the Council on Quality and Leadership
The webinar will address the definition of trauma, the incidence and effect of trauma in the lives of people with disabilities, healing from trauma, and more.
Register here.

How to Achieve a Shared Plan of Care for Kids with Primary Care Providers, Families, and Specialists
Thursday, June 4
9 a.m. to 10 a.m. Pacific Time
Sponsored by New England Genetics Collaborative
The webinar will outline the principles of achieving a shared plan of care and offer communications tips for building lasting relationships with specialists.
Register here.

Also see: Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs

Online Tool to Help Families Prepare for Medical Visits
Thursday, June 11
12 p.m. to 1 p.m. Pacific Time
Sponsored by Family Voices National Center for Family/Professional Partnerships
Families and providers can make the most of their well-child visits by using the Well Visit Planner, created by the Child and Adolescent Health Measurement Initiative (CAHMI).
Presenters: Christina Bethell, PhD, MBA, MPH, Director of CAHMI; Michele Soloway, PhD, CAHMI Senior Research Associate; Melissa Vickers, MEd, Family Voices Project Coordinator
Register here.



Grants for Pediatricians
Grants of up to $10,000 for pediatricians and fellowship trainees and $2,000 for pediatric residents are available from the Community Access to Child Health program. Applications are sought for innovative initiatives to ensure that all children, especially underserved children, have medical homes, timely immunizations and access to health services not otherwise available in their communities. Applications are due by July 31. Assistance is available in preparing the application.



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.