Posted December 1, 2016

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

Network News

Apples and Oranges: Serious Chronic Illness in Adults and Children
The US health care system is designed primarily for adults. As a result, important aspects of children's health care needs are unappreciated and unaddressed, especially when children have complex chronic conditions. A new article in The Journal of Pediatrics assesses the key differences between the service needs of adults and children with chronic illnesses, and suggests changes to the design, operation, and financing of health care to improve outcomes for children. Read the article by Edward Schor, MD, and Eyal Cohen, MD, MSc.

Opinion: Mistaking a Toy Truck for a Gun—Why Law Enforcement Officers Need Education on Special Needs
Irene Litherland, the mother of an adult son with autism, reflects on the North Miami police shooting of a therapist who was trying to help a young man with autism. Law enforcement officers must be trained to protect the entire population, she says. Read more.

California Children's Services

New: Grievance, Appeal, and Fair Hearing Processes for CCS Whole-Child Model
The Department of Health Care Services has just published information on how to file a grievance or request an appeal or a fair hearing on behalf of a child participating in the state's Whole-Child Model. The document addresses decisions made about CCS program eligibility, satisfaction with a health plan, or a health plan's decision to deny health care services. Read the policy (PDF) and see FAQ about Whole-Child Model implementation (PDF), including which counties are scheduled to be included.

Children with Medical Complexity

Recognition and Management of Medical Complexity
Children with medical complexity, a subset of children with special health care needs, have extensive needs for health services, experience functional limitations, and are high resource utilizers. A new report defines this population of children and discusses opportunities for health care providers, policymakers, and payers to develop strategies to enhance care delivery, decrease costs, improve quality of life, and optimize medical outcomes. Read the report from the American Academy of Pediatrics, co-authored by Drs. Dennis Kuo and Amy Houtrow.

Related Webinar: Manage Children with Medical Complexity in Your Practice
Thursday, December 15
11 a.m. to 12 p.m. Pacific Time
American Academy of Pediatrics (AAP) Council on Children with Disabilities
This webinar will describe the population of children with medical complexity and provide strategies on how pediatricians can optimize medical and health outcomes.
Read more and register. If unable to attend, register to receive recording and materials.
Also see: Report Calls for Doctors, Payers, Policymakers to Meet Needs of the Medically Complex

Family Engagement

Family Voices of California: Project Leadership Noted as "Promising Practice"
Project Leadership, developed by Family Voices of California, is now featured (PDF) as a promising practice on Innovation Station, a website of the national Association of Maternal and Child Health Programs. Project Leadership includes a seven-session curriculum and a mentoring program designed to help family members develop the capacity to engage in public policy advocacy. The project is supported in part by the Lucile Packard Foundation for Children's Health. See the Project Leadership training materials.

Care Coordination

Health Homes Learning Collaborative Offers Lessons in Care Coordination, Integration
A four-year Health Homes Learning Collaborative, supported by the state of New York, brought together 35 health home providers, community partners, state officials, and other stakeholders to identify and share best practices in health home design and implementation for individuals on Medicaid with chronic physical and behavioral health needs. Although focused on adults, the collaborative's findings may have relevance for pediatric health homes and care coordination. Read a related blog post.

In Brief

National Policy

Kaiser Family Foundation Considers Key Medicaid Questions Post-Election
The presidential election has evoked great uncertainty about future funding for Medicaid, the largest payer for medical services for people with disabilities (Medi-Cal in California). The Kaiser Family Foundation has published an analysis of how a new administration potentially could change the program, and the possible implications, including limited funding for children and people with disabilities. Read more.

In Brief

California Policy

Comment Sought: Employment Opportunities for Individuals with Developmental, Intellectual Disabilities
The public has until December 30 to comment on California's Competitive Integrated Employment (CIE) Blueprint. Developed by three state departments—Developmental Services, Rehabilitation, and Education—the Blueprint is designed to increase opportunities for individuals with intellectual or developmental disabilities to be employed in an integrated setting at a competitive wage. The Blueprint is available in multiple languages on the CIE website. Written comments may be sent to, or join a stakeholder call:
Tuesday, December 13
1:30 to 3:30 p.m. Pacific Time
Dial-in: 888-946-2714; Passcode: 2778914


A Comprehensive Approach to Managed Long-Term Services and Supports
Wednesday, December 7
10 to 11 a.m. Pacific Time
Health Management Associates
Read more and register.

In-Home Supportive Services for People with Intellectual/Developmental Disabilities
Thursday, December 15
10 to 11 a.m. Pacific Time
USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Learn more (PDF) and register.

Archived Webinar


AAP Seeks Pediatric Primary Care Practices for Quality Improvement Project for CSHCN
The American Academy of Pediatrics Division of Children with Special Needs, with support from the Centers for Disease Control and Prevention, is recruiting primary care practice teams to participate in a quality improvement project focused on improving developmental surveillance, screening, and referral for developmental concerns. Participating practice teams also will have an opportunity to join a community of learners from around the country to test and share strategies. The project will provide access to practical tools and resources, and teams will receive ongoing technical assistance. Interested practices should complete the online application by December 9.

Joseph P. Kennedy, Jr. Foundation Fellowship Program
The Joseph P. Kennedy, Jr. Foundation seeks applicants for its Public Policy Fellowship. Applicants should be professionals, people with disabilities, or family members of people with intellectual and/or developmental disabilities. The fellowship prepares mid-career leaders to assume leadership in the disability public policy arena at the state or national level. Learn more (PDF) and apply for the fellowship. Applications are due December 15.


Association of Maternal & Child Health Programs Annual Conference (AMCHP)
March 4-7, 2017
Kansas City, MO
Sessions will cover topics including children and youth with special health care needs, early childhood services, adolescent health, and more.
Learn more and register now for the Early-Bird rate.

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