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National Collaborative Develops Quality Standards for Systems of Care for CSHCN
A just-released report outlines in detail the elements needed for a high-quality, coordinated system of care for children with special health care needs. These evidence-based standards can provide essential guidance as states transform how they organize and pay for care for children with special needs. Developing Structure and Process Standards for Systems of Care Serving Children and Youth with Special Health Care Needs, which includes an accompanying guide to the standards, represents the consensus of a national consortium of public and private organizations. Read the report and standards and a related blog post.


Q&A: Network Member Karen Fessel, Founder and Executive Director, Autism Health Insurance Project

Karen Fessel is known throughout California for her passionate advocacy to get insurers to pay for the services families need for their children on the autism spectrum. Now, she’s branching out to serve children with other special health care needs. Read more.




Package of Senate Bills Addresses Developmental Disabilities, Autism
California Senate President Darrell Steinberg and several other senators have introduced a package of legislation related to developmental disabilities and autism. Information on the bills can be found here. Ongoing updates are available at by typing in the bill number.   

Also see: Autism Treatment at Crossroads, from Medi-Cal Coverage to New Guidelines


Expanding Access to Peer Support for Caregivers
A new study focuses on how four states are working to expand access to peer support for caregivers of children with special health care needs. The study is one in a series of evaluations of projects funded by the Centers for Medicare and Medicaid Services to improve quality of health care for children enrolled in Medicaid and the Children’s Health Insurance Program. Read the report and recommendations for states.  

President Obama Poised to Sign Pediatric Research Funding Bill
A bill that would shift $126 million from the Presidential Election Campaign Fund to the National Institutes of Health to pay for a 10-year pediatric research initiative is awaiting President Obama’s signature. The White House has indicated that he will sign. The bill, which specifies that the money can be used only for pediatric research, authorizes funding but does not appropriate it. The House member who introduced the bill has a child with a chronic health care condition. Read more.


The Benefits of Co-Management by Primary Care Providers and Sub-specialists
Collaboration between pediatric primary care providers and sub-specialists is essential to providing optimal health outcomes for children, patient-centered services and efficient care. A new publication from the Child Health and Development Institute of Connecticut uses three case examples to illustrate that shared care, or “co-management” can provide a model for meeting patient needs. Read the publication.


In California, 2.2% of children who are uninsured have major disabilities. See the data on


Last Few Days! Enrollment Deadline is March 31
Open enrollment ends March 31 for coverage under the Affordable Care Act. See Covered California for information.

Two New Fact Sheets from the Catalyst Center

Children’s Hospice and Palliative Care Coalition (CHPCC) Annual Public Policy and Education Day
April 7, 8:30 a.m. to 3:30 p.m.
California State Capitol
Dr. Robert Dimand, CCS Chief Medical Officer, and Dr. Jill Abramson of CCS will be lunchtime speakers. The day will focus on the scheduled end to the carve-out of California Children’s Services, and the potential impact on programs that have extended children's access to in-home palliative and hospice care. Department of Health Care Services officials are seeking input from stakeholders. Learn more and register.

2014 Department of Health Care Services Stakeholder Advisory Committee Meetings
May 7, 9:30 a.m. to 3:30 p.m.
Sacramento Convention Center
Meetings are open to the public and available for listening by phone.

Children’s Regional Integrated Service System (CRISS) Annual Conference: “The Devil is in the Details: Coordinated Care Under Covered California”
May 9, 9 a.m. to 3 p.m.
State Building, 1515 Clay Street, Oakland, CA
Free nursing CEUs available.
Save the date: Details to come.


How to Discuss Serious Illness in Children
Palliative Care: Conversations Matter is the title of a new campaign from the National Institutes of Health to inform the public that comprehensive treatment of the discomfort, symptoms and stress of serious illness in children is available for families. Resources include videos on starting discussions with patients and families, patient education notepads and more. The campaign website provides information and resources for pediatric patients, their families, and their health care providers. Read more.


2014 Fostering Partnership and Teamwork in the Pediatric Medical Home: A "How To" Webinar
Thursday, March 27, 2014
11 a.m. to noon
National Center for Medical Home Implementation
Part two of a three-part webinar series focusing on promoting teamwork and partnership in pediatric medical homes. This segment is “Enhancing Care Partnership Support.” Learn more about the series and register. Next up: April 24 – Starting and Supporting Family Advisory Groups.

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