Posted October 4, 2016

News, policy updates, resources, events, and advocacy opportunities

California Children's Services

Tomorrow: CCS Advisory Group to Meet; Gov. Brown Signs Redesign Bill
Implementation of SB 586, the CCS redesign bill, will be on the agenda as the CCS Advisory Group reconvenes on October 5. The newly signed law delays movement to Medi-Cal managed care of CCS-enrolled children in 21 counties until at least July 2017, and contains other provisions sought by advocacy groups. Public comment will be taken from attendees at the end of the meeting.

Also see: Gov. Brown Signs Bill Allowing Fragile Children to Keep Doctors for 1 Year

Wednesday, October 5, 10 a.m. to 12:45 p.m.
Sacramento Convention Center, 1400 J St, Room 204
See the meeting agenda (PDF) and more information, including presentation slides, on the Advisory Group website.
Dial-in: 888-989-6488 (listen only); passcode: 1945234

Network News

Spirits, Ghosts, and Jumping: Five Best-Selling Books About Kids with Special Needs
We asked our Facebook community members to tell us their favorite books about children with special needs. With their help, we came up with five bestsellers that deserve to be on your must-read list!

See the list.

Job Opportunity: Part-time Research Associate
The Lucile Packard Foundation for Children's Health seeks applicants for a part-time research associate to work with foundation staff on literature reviews and data analysis related to family engagement and child health care.

California Policy

New Law Allows "Right to Try" Unapproved Medications for Terminally Ill Patients
Inspired by the death of a young boy who was not allowed to try an experimental drug to treat his cancer, advocates around the country have pressed for expansion of "compassionate use" of such medications. Governor Brown has just signed California's law, AB 1668, which would allow, but not require, health plans to cover investigational treatments for patients with immediately life-threatening conditions. The law also protects physicians from disciplinary action if they recommend or prescribe such treatments. Read more.

National Policy

Coming in January: New Federal Criteria for Evaluating Intellectual Disabilities
To more quickly identify individuals who may qualify for federal benefits based on an intellectual disability, the Social Security Administration has published Revised Medical Criteria for Evaluating Mental Disorders, which modifies the criteria used for decision-making. The "final rule" goes into effect on January 1. Read more.

Family Engagement

Comments Sought: Research Topics for USC Center on Developmental Disabilities
The USC University Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles is seeking the public's ideas on topics it should address over the next five years. A survey from the center also asks for ideas about how to improve the lives of individuals with developmental disabilities and their families. Responses are due by October 21. Read more and take the survey (disponible en español).

Complex Care

In Search of Better Strategies to Address Complex Medical, Social Needs
Transforming Complex Care is a new multi-site demonstration project that aims to test and disseminate care models that address the complex medical and social needs of high-need, high-cost adult patients. The project will address strategies that also may be applicable for pediatric patients: model enhancements; data and analytics; workforce development; financing and accountability; governance and operations; and policy and advocacy.


A Boost for Self-Advocacy for People with Intellectual and Developmental Disabilities
A new $2 million federal grant will help establish a National Resource Center for Self-Advocacy that will support people with intellectual and developmental disabilities in advocating on their own behalf. The center will provide research and training assistance, house information on the history of self-advocacy, and offer funding for fellowships. Read more.

Also see: Self-Advocacy Gets National Push

In Brief


Medi-Cal Turns 50 – Month-Long Celebrations Around the State
Medi-Cal, the insurance program that covers half of the state's children, will mark its 50th anniversary with family events all around the state in October, sponsored by the Department of Health Care Services and a coalition of agencies. Local officials and families will speak, refreshments will be served, and entertainment will be provided. Read more and find dates and locations for these free events.

Also see the flyer (PDF).

Pediatric Complex Care Association Annual Conference
October 26-28
Richmond, VA
Pediatric Complex Care Association
For providers of care for children with medical complexity, who may include physicians; nurse practitioners and nurses; pediatric nursing home administrators; occupational, physical, recreational, and respiratory therapists; social workers; speech pathologists; and special educators.
Read more and register. Fee.

Transition to Adult Care

17th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care
October 27-28
Baylor College of Medicine, Houston, TX
Baylor College of Medicine and Texas Children's Hospital
Aimed at health care providers and young adults who have a chronic illness or disability and their parents or guardians.
Find details and register. Fee.

Archived Webinar

Rescue Medication and Seizure Emergency Planning in Education Settings – from the American Academy of Pediatrics

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email Danielle DeCosta at with your news or updates. Or contact newsletter editor: Eileen Walsh at