You can help build the Network! Encourage your friends and colleagues to join today.


Network Member: Sherry Torok, Exceptional Family Resource Center
Having spent 25 years with the Exceptional Family Resource Center, which serves San Diego and Imperial counties, Sherry Torok is happy to see how agencies serving children have evolved in their thinking about family-centered care. Read more.



Dentistry and Telehealth – Legislation Proposed
California families living in areas where there is a shortage of dentists who accept Medi-Cal often must drive long distances for dentistry services. Telehealth is an increasingly popular solution to this barrier to care. On January 14, the California State Assembly Health Committee will hold a hearing on AB 1174 (Bocanegra). This bill addresses scope of practice and adds teledentistry or Virtual Dental Homes (VDH) as a Medi-Cal reimbursable service. For more information about this legislation see this legislative analysis and a background piece from The Children’s Partnership, which supports the bill.

New Statewide Children’s Health Advisory Board Proposed
Also on January 14, the Assembly Health Committee will discuss AB 357 (Pan). This legislation would repeal the Healthy Families Advisory Board, rename it and expand its scope. A new Children’s Health Advisory Board would be charged with developing a statewide vision for children’s health. The bill requires that at least one member of the Board be a family member of a child with special health care needs. A coalition of agencies serving children supports the bill.

Children Now Issues Annual Report Card
Children Now issued its annual report on child health indicators this week, including a finding that no more than 30% of developmental disabilities or delays are identified before children enter kindergarten. The report offers a range of policy recommendations regarding children’s health, education and welfare. Read more.


Federal Government Increases Hiring of Individuals with Disabilities: Report
In December, the US Office of Personnel Management released its Report on the Employment of Individuals with Disabilities in the Federal Executive Branch. The report comes in response to a 2010 executive order from President Obama to increase hiring of individuals with disabilities. According to the report, more people with disabilities are working in federal service by percentage and in real terms than at any time in the last 32 years. Read the report.


The percentage of children with special health care needs who repeated a grade in school is double that of children without special needs, in both California (12.2% vs. 6.4%) and nationally (14.9% and 7.2%). See the data on


New Guide Offers Advice for Physicians on Youth Transition to Adult Health Care
United Cerebral Palsy and the Cerebral Palsy International Research have just released an online Physician’s Guide: Assisting Adolescents with Cerebral Palsy in Transition to Adult Healthcare. The one-page, eight-step guide offers advice that applies to the transition of any adolescent with special health care needs. See the guide.

Preparing for Emergencies
The American Academy of Pediatrics offers information on how families who have a child with special health care needs can prepare for emergencies, such as the extremely cold weather that hit parts of the country recently. View the guidelines and emergency forms


Fact Sheet: What Families Need to Know
Open enrollment for insurance under Covered California, the state’s exchange, runs through March 31, 2014. CRISS (Children’s Regional Integrated Service System) has prepared an informative fact sheet: Covered California and Children: What Do Families and Professionals Working with Them Need to Know? The brief explains levels of coverage and essential benefits, and suggests questions to consider. Read more.

Also see:


Survey: Care in a Medical Home
Receiving care in a medical home is an especially critical measure of health care quality for children with special health care needs. A new analysis from AMCHP (Association of Maternal and Child Health Programs) reports on findings about medical home accessibility from the 2011-2012 National Survey of Children’s Health. See the results.

Pilot Program on Telehealth Services for Pediatric Obesity Patients Yields Positive Results
In an effort to overcome the logistical problems of patients traveling long distances to multiple appointments, UCLA researchers set up a pilot program using telehealth technology — a secure system that allowed patients to see and speak with their health care providers at UCLA over a computer from their local health clinic. The study found that approximately 80 percent of participants reported they were satisfied with their telehealth appointment and would be willing to schedule another one. Responses from the health care providers were similarly positive. Learn more.



The Affordable Care Act and Children with Vision and Eye Health Needs
January 14, 2014
Noon – 1 p.m. Pacific Time
Catalyst Center

Scheduled speakers include Meg Comeau, MHA, Co-Principal Investigator, The Catalyst Center
An Overview of the Consumer Protections and Coverage Options in the ACA; Alison Manson, MPH, Director of Government Affairs, Prevent Blindness America; How the ACA Impacts Children's Vision; and E. Eugenie Hartmann, PhD, Professor of Vision Sciences, University of Alabama at Birmingham
Vision Considerations for Children with Special Medical Needs. Learn more and register


Department of Health Care Services Stakeholder Advisory Committee Meeting
February 21, 2014
 9:30 a.m. to 3:30 p.m. Pacific Time
 Sacramento Convention Center

12th Annual Family Voices of California Health Summit and Legislative Day
February 24-25, 2014
Holiday Inn, Capitol Plaza, Sacramento

7th Annual Developmental Disabilities Public Policy Conference
The Arc of California, United Cerebral Palsy in California, and California Disability Services Association
March 2-3; Legislator Visits March 4

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