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July 25 Webinar: CCS Reform Included Under Upcoming "1115 Waiver" Renewal
The Department of Health Care Services (DHCS) is planning to renew its request to the federal government for an "1115 waiver," which allows states to waive sections of Medicaid law and use funds for research and demonstration projects. California Children's Services (CCS) is included in the waiver request, with DHCS indicating that it wishes to "explore options for improving care delivery, quality and cost" in CCS. DHCS will hold a series of stakeholder meetings seeking comment on the overall waiver proposal, with the goal of submitting a request early next year. The first webinar is scheduled for 2 p.m. on Friday, July 25. Read the state's concept paper (PDF), which briefly mentions ideas for CCS, and sign up to participate.

CCS Regional Stakeholders to Meet
Also on July 25, representatives from organizations interested in potential changes to the California Children's Services (CCS) program will meet to continue developing a concept paper for a regional CCS model in a managed care environment. The group plans to present the paper to the Department of Health Care Services. The meeting will be from 10 a.m. to noon at the Alameda County Public Health Department, 1000 Broadway, Oakland. See the agenda (PDF). The meeting is open to the public, but an RSVP is requested. Please contact For those unable to attend, the teleconference dial-in info is: (888) 675-2535, access code 3620086.



Network Profile: Jim Santucci, CPA, Executive Director, Kara
Jim Santucci, an advocate at the forefront of California's pediatric palliative care movement for seriously ill children, talks about an innovative Medi-Cal hospice program and its uncertain future. Read more>>


Care Coordination Programs Get Boost from New Funds; Grants Available for Next Round
Two coalitions from the California Community Care Coordination Collaborative (5Cs) have secured outside funding. The Contra Costa County coalition has received an award from the Kaiser Permanente Community Benefits Program of Northern California in support of a CSHCN Service System Coordinator position. The Central California Care Coordination Project in Fresno County has received a private donation to carry forward their project as they pursue other funding opportunities. Grant applications are being accepted now by the Lucile Packard Foundation for Children's Health for the second round of the 5Cs project. Read about how to apply.



Advisory Panel for Medi-Cal Families to Hold Public Meeting July 31
The Advisory Panel for Medi-Cal Families (formerly the Healthy Families Advisory Panel), will meet July 31 from 10 a.m. to 1 p.m. in Sacramento. See the meeting agenda (PDF), which includes the call-in number for those who can't attend in person. For additional information click here or contact Phoebe Sadler at



Workforce Legislation to Assist Youth with Disabilities
On July 22, President Obama signed the Workforce Innovation and Opportunity Act (H.R. 803) which, among other provisions, requires states to assist young adults with disabilities to either continue their education or secure employment in competitive settings rather than in sheltered workshops that pay less than minimum wage. Read the details and the bill.

Food and Drug Administration Launches Plan to Address Rare Pediatric Diseases
A strategic plan for accelerating development of therapies for pediatric rare diseases was released July 8 by the U.S. Food and Drug Administration. Hundreds of stakeholders from academia, clinical settings, patient and advocacy groups, industry and government contributed to developing recommendations for how to speed up treatment for diseases that affect only a small group of patients. Read a summary and the full plan (PDF).



Feds to Invest $100 Million to Accelerate Medicaid Reform
The U.S. Department of Health and Human Services on July 14 announced a plan to invest more than $100 million to help states jumpstart reform of their Medicaid programs (Medi-Cal in California). The Medicaid Innovation Accelerator Program is designed to help states streamline their payment process and review state data to find ways to improve patient care. Read more.

Also see a related report prepared by Mathematica Policy Research that examines the idea of enhancing care coordination in California by creating a statewide health care information portal that would integrate the administrative functions of the California Children's Services and Medi-Cal programs. The report, commissioned by the Lucile Packard Foundation for Children's Health, includes examples of portals from North Carolina and New York State.





Study: Higher Risk of Abuse, Neglect for Kids with Developmental Disabilities
Researchers at Saint Louis University found that children with developmental disabilities may be more prone to abuse and neglect by parents and caretakers than those who develop at a typical rate. Inappropriate expectations for these children may lead to lack of empathy, the study's lead author said. Read more.



Sickle Cell Disease: Myths and Realities
Wednesday, Aug. 6, 2014
Noon – 1 p.m. PDT
Presentations on the physical, psychological and social aspects of sickle cell disease as well as treatments and outcomes. Advice on how to advocate as a caregiver, a patient or a provider to improve outcomes of emergency department visits. Register.


Academy of Pediatrics Chapters Collaborate with Title V Programs
A news article from the American Academy of Peiatrics (AAP) notes that in at least three states AAP chapters have joined forces with state Title V directors to identify and address issues related to children with special health care needs. Examples include training for physicians to provide screening services, and development of regional centers to support children through an integrated system. Read the article.

Other Useful Resources:
  • United Cerebral Palsy has issued Ten Commandments of Etiquette for Communicating with People with Disabilities. Read the guidelines.

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