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Guest Opinion: The First Transition: Perspectives on Age 3
Much attention is appropriately focused on the transition of children with special needs to adult services, but another, much earlier transition also can create stress, confusion and difficulties for families. A California Children’s Services administrator and a parent whose daughter transitioned from Early Start services to a special education program at age 3 suggest that our system of care should be updated to enhance continuity of services from birth to age 5. Read their opinion piece.

Foundation Grants Promote Improved System of Care
The Lucile Packard Foundation for Children’s Health has awarded grants totaling nearly $500,000 to improve systems of care for children with special health care needs (CSHCN). One grant encourages increased academic research on CSHCN by pediatric faculty. Two other grants will support projects to assess long-term health care services in California for children with chronic conditions, and to disseminate national standards for health care systems that serve children with medically complex needs. A fourth grant will identify specialized outpatient programs designed to serve CSHCN around the state, and facilitate communication among the programs’ leaders to improve services. See details about the grantees.

Grant Opportunity – Deadline Jan. 24, 2014
Three grants are available to support young academic investigators interested in developing innovative approaches to improve systems of care for children and youth with special health care needs. The awards, sponsored by the Lucile Packard Foundation for Children’s Health and administered through the Stanford Department of Pediatrics, will fund projects of up to 18 months in duration and will provide $15,000 for pediatric fellows and $25,000 for junior faculty at California institutions. A webinar for potential applicants, “Young Investigator Award-Children with Special Health Care Needs; Writing a Successful Proposal,” is scheduled for 10 a.m. Pacific Time on January 6, 2014. Get more information.


President Obama has reauthorized the PREEMIE Act, a federal program to decrease premature births and study the relationship between prematurity and developmental disabilities. The reauthorization includes the National Pediatric Research Network Act, which will support research and treatment options for pediatric rare diseases. The Pediatric Research Network comprises multiple institutions conducting expedited clinical trials, allowing families easier access to new therapies. The Network is expected to produce new treatment options for children with rare conditions.


Regarding Rare Diseases
A mother writes from personal experience about practical ways to get care and support for children with rare diseases.

Academy of Pediatrics Develops Family History Tool for Pediatric Providers
The Genetics in Primary Care Institute of the American Academy of Pediatrics and several other organizations have developed an electronic pediatric family history tool. The tool will assist families and their health care providers in risk assessment and identification of additional evaluation or preventive services children may require based on family history.

The December issue of Complex Child, a parent run e-magazine, is devoted to ways for children with complex conditions to have fun. Articles include Every Child Deserves a Chance to Play Baseball; Hanging Out, Special Needs Style; and Funny Alternative Uses for Medical Supplies.


All Plans Must Meet Minimum Benefits - Consumer Hotline Launched
In November, the governing board of Covered California, the state’s insurance marketplace, decided that the state would not allow consumers to keep existing plans that do not meet the minimum coverage required by the Affordable Care Act (ACA). The board said that the delay authorized by the Obama Administration would offer no benefit to the consumer. Covered California has established a hotline to help enrollees who are changing from their current health insurance plans to coverage under the ACA. The “Coverage Options Hotline” is available at (855) 857-0445 from 8 a.m. to 8 p.m. Monday through Friday, and 8 a.m. to 6 p.m. on Saturday.

Due Process Protection for Patients
The National Health Law Program has issued a publication outlining due process rights guaranteed by the Affordable Care Act that protect the insured from wrongful denial of coverage. The report notes that rights that are well-established for Medicaid beneficiaries and applicants are now explicitly extended through federal regulations to individuals seeking insurance coverage and other benefits through the Health Insurance Exchanges. Read more.




The Importance of Assessments in Helping People with Intellectual Disability and Mental Health and/or Behavioral Challenges: New Ways to Address Antipsychotic Medications and their Side Effects and Ways to Assess Trauma
December 11, 2013
12 p.m. – 1:30 p.m. Pacific Time
Association of University Centers on Disabilities

This webinar will introduce unique approaches to assessing behavioral difficulties in a person with intellectual and developmental disabilities. Learn more and register.

Connecting Kids to Coverage National Campaign
December 12, 2013
11 a.m. – 12 p.m. Pacific Time

The webinar will cover ways to enrich outreach efforts to enroll eligible families who are seeking health coverage. Register.

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