Posted on September 3, 2015

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.


State Modifies Some Language in 'Whole Child' Proposal
The Department of Health Care Services is proposing several changes to the Whole Child Model (PDF) for CCS redesign that it released in June. The Department highlights five key changes, based on consumer feedback. See a Fact Sheet released on August 26 that highlights the changes (PDF) and also see proposed amendments to the statutory language (PDF) the Department released in July.

Bill to Extend CCS Carve-Out Closer to Decision
Assembly Bill 187, which would extend the carve-out of California Children's Services (CCS) from Medi-Cal managed care until January 2017, has passed out of Appropriations and is scheduled for a third reading in the Senate today. Also, the California Children's Hospital Association is seeking stories from families about the importance of CCS in obtaining the care their children need. Send stories to

Also see: Florida Judge to Decide Dispute About Special-Needs Children

CCS Advisory Group to Meet; Technical Workgroup Dates Pending
The first meeting of the newly formed CCS Advisory Group, which is a continuation of the Redesign Stakeholder Advisory Board, has been rescheduled for Wednesday, October 21, from 10 a.m. to 4 p.m. in Sacramento, with details forthcoming. The Department of Health Care Services also plans to announce late September dates for meetings of the Care Coordination/Medical Home workgroup and the Data and Quality Measures workgroup. For information see the redesign website or write to


Commentary: CCS Redesign Must Preserve Specialty Care Network
One of the most significant benefits provided by the California Children's Services (CCS) program is the network of pediatric subspecialists and special care centers, including children's hospitals, that CCS has developed through its credentialing process and enhanced reimbursement rates. Preservation of that network should be the top priority in any CCS redesign, says David Alexander, MD, president and CEO of the Lucile Packard Foundation for Children's Health. He notes that the network makes subspecialty care available to all the state's children with complex needs, not only those covered by CCS. Read his commentary.


Bill Introduced to Support Developmental Services
Assembly Bill X2-18, colloquially known as the Cocktails for Healthy Outcomes Act, proposes imposing a 5-cent tax on cocktails purchased in restaurants and bars. The revenue would reverse some of the cuts that have been made in the past decade to services for individuals with developmental disabilities and provide an estimated $200 million annually for Regional Centers and community-based services. Read more.

Also see: Statewide Rally for Developmental Services

Upcoming Meeting

Medi-Cal Children's Health Advisory Panel
Thursday, September 10
1 p.m. to 4 p.m.
Dial-in: 888-968-3517; Passcode: 8245294
Meeting materials will be posted on the MCHAP webpage. The 15-member panel advises the Department of Health Care Services on topics that affect children covered under Medi-Cal. Contact with questions or comments.

Also see: Half of Kids and a Quarter of Adults in California Are Enrolled in Medi-Cal and
Calif. Lawmakers Work to Save $1B in Federal Medi-Cal Funds


Stockton Record Profiles 5Cs Member
As executive director of the Family Resource Network in Stockton and a member of the California Community Care Coordination Collaborative, Ann Cirimele helps families of children with special health care needs navigate the health care system and works with local agencies to improve it. Read the story.

Also see: Turning Stumbling Blocks into Stepping Stones


Feds End 'Modified' Tests for Students with Disabilities
Under a new rule from the US Department of Education, states no longer will be able to consider some students with disabilities academically proficient without meeting grade-level standards. With this rule, the Department aims to ensure that students with disabilities who are capable of meeting general education standards with proper supports receive the assistance they need. Students with the most significant cognitive disabilities still will be allowed to take tests based on "alternate academic achievement standards." Read more and see the rule.


Catalyst Center Seeks Family Stories on Access to Health Care
The Catalyst Center is searching for families to share their experiences with barriers and disparities in finding and paying for health care for their children with special health care needs. They are particularly interested in hearing from families of color, immigrants, those who do not speak English or those who have limited income. Catalyst, based at the Boston University School of Public Health, is a national center dedicated to improving health care coverage and financing for children with special needs. Catalyst intends to share these family stories with policymakers, advocates, family leaders, and others who can generate "real world" solutions to the challenges of obtaining health care. Families can choose to keep their identifying information private. Learn more (PDF).


Tech Toolbox
A one-stop-shop directory of websites, apps, devices, and other technology designed for people with intellectual or developmental disabilities, created by The Arc through partnership with the Comcast Foundation. See the directory.



National Medicare Education Program (NMEP) Web Meeting
Wednesday, September 9
10 a.m. to 12:30 p.m. Pacific Time
Sponsored by the Centers for Medicare & Medicaid Services (CMS)
This public-private partnership supports education about programs administered by CMS, including the Children's Health Insurance Program (CHIP). The discussion will include Medicaid managed care and CHIP reauthorization.

Education Policy and Politics: What's at Stake for Students with Disabilities
Monday, September 21
1 p.m. to 2 p.m. Pacific Time
Sponsored by the Virginia Commonwealth University School of Education
A round-up on federal policy issues that have an impact on students with disabilities, their families, and those who educate them.
Learn more (PDF) and register.


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

To see past issues, visit the Network Newsletter Archive.