Posted June 23, 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.

Please forward the newsletter and encourage your colleagues and constituents to join the Network.


State Posts CCS Redesign Documents; Advisory Group to Discuss June 29
In anticipation of the upcoming meeting of the CCS Advisory Group, the Department of Health Care Services (DHCS) has released a series of draft documents related to the proposed implementation of the "whole-child model" in 20 counties. In this model, children with CCS-eligible conditions will receive care through managed care health plans in the affected counties. The documents that will be discussed at the June 29 Advisory Group meeting include an implementation timeline, phase-in methodology, and a beneficiary flyer, among others. See the meeting agenda (PDF) and all the documents on the Advisory Group website.

CCS Advisory Group Meeting
Wednesday, June 29
10 a.m. to 3 p.m.
1700 K Street, Sacramento
Call-in Number: (888) 989-6488 (listen only) Passcode: 1945234
Public comment will be taken at the end of the meeting.
Updated information available on the Advisory Group website.

Also see the Meeting Summary (PDF) from the April 6 Advisory Group meeting, which covered CCS program improvement, Medi-Cal managed care health plan and CCS readiness, CCS performance measures, and other topics.

June 28: Assembly to Discuss CCS Redesign Bill; State Responds to Advocates
The Assembly Committee on Health has rescheduled its hearing on Senate Bill 586, which addresses the future of the California Children's Services (CCS) program and the state's proposed whole-child model to move some children covered by CCS into managed care. Advocacy groups in May had proposed revised language for the bill, addressing a variety of topics, including timelines, rates, treatment guidelines, monitoring, evaluation, and family involvement. The Department of Health Care Services now has released a chart of its responses (PDF) to the proposals, indicating agreement or opposition.

Assembly Committee on Health Hearing
Tuesday, June 28
1:30 p.m.
State Capitol, Room 4202
Monitor any changes to the schedule and see how to listen to the hearing.


What Five Dedicated Families Can Do
Friends of Children with Special Needs (FCSN), a Fremont, California-based organization serving Chinese American children and adults in the Bay Area, celebrates its 20th anniversary by opening a second center in San Jose. Read how FCSN grew from five families meeting in a living room to a $4.8-million organization with 75 staff members.

A Parent's Perspective: When Autism Ages Out of the School System
Pam Raymond, mother of a developmentally delayed daughter who just turned 21, decries the limited options for young people when they no longer can attend school, and notes that the problem will continue to worsen. Read her opinion piece in the California Health Report. Ms. Raymond is a graduate of Project Leadership, which is sponsored by Family Voices of California and funded by the Lucile Packard Foundation for Children's Health.


Webinar: Information on Applying for 'Designing Systems That Work' Grants
The Lucile Packard Foundation for Children's Health has scheduled a pre-application webinar to assist potential applicants responding to a Request for Proposals on "Developing Goals and Strategies to Improve the Care of Children with Chronic and Complex Health Conditions." The webinar will provide an overview of the RFP process, and attendees will have the opportunity to submit questions. The grants will support development of single-topic issue briefs on subjects addressed at the national symposium sponsored by the Foundation on December 7-8, 2015.
Tuesday, July 12
11 a.m. to 12 p.m. Pacific Time; 2 to 3 p.m. Eastern Time
Proposals due: September 15

Federal Research Grants Available has posted an announcement regarding proposals for research on critical issues affecting maternal and child health, including services for children with special health care needs. Find details about the grants, sponsored through the Health Resources and Services Administration.


Feds: Don't Delay Special Ed Evaluations for Preschoolers
The U.S. Department of Education has sent a notice (PDF) to states warning that they must not delay or deny timely initial evaluation for preschool and Head Start children suspected of having a disability. Read more.

Rule Addresses Discrimination in Health Care Settings
The Department of Health and Human Services has issued a "final rule" clarifying anti-discrimination protections for individuals with disabilities receiving services from health care providers. Read more.


Project to Focus on Family Leadership
Family Voices National has been awarded a new three-year cooperative agreement from the Maternal and Child Health Bureau to maintain the National Center for Family/Professional Partnerships. The project will develop family and youth leadership, particularly among racially and ethnically diverse families of children with special health care needs. Read more.


Caregivers in the Workplace: Litigation Update
A new report from the Center for WorkLife Law at the University of California Hastings College of the Law provides a 2016 update on litigation related to discrimination because of an employee's caregiving obligations. The report concludes that employers have not implemented effective practices and policies for managing these employees. Read the report.

Other Useful Resources


Siblings as the Next Generation of Advocates
Thursday, June 30
10 to 11 a.m. Pacific Time
Hosted by the USC University Center for Excellence in Developmental Disabilities (UCEDD) at Children's Hospital Los Angeles
The changing landscape of disability services, with siblings of people with developmental disabilities as professionals, advocates, and caregivers.
Download the webinar flyer (PDF) and register.



Positions Open at The Children's Partnership
Two positions are available in the Los Angeles area with The Children's Partnership, a national, nonprofit child advocacy organization that has a strong focus on health and health care. Read the postings for senior director of communications and external affairs and senior policy associate.



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