How to Become an Advocate; Complex Care Journal Launched; Elements of Transition Updated

Network Newsletter sent on July 9, 2020

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

Transition to Adult Care

A Fresh Look for the Core Elements of Transition

Got Transition, the federally funded national resource on health care transition, has updated its Six Core Elements of Health Care Transition, including step-by-step implementation guides, and also has posted new tools and resources on its revamped website. The new information, available in English and Spanish, can be used by clinicians, youth, and caregivers to assist young people as they move from pediatric to adult care. See the new website.


A Mother’s Perspective: How People with Complex Health and Social Needs Can Become Advocates for Change

PDF icon idealhealthcaresystem.pdf

Inspired by her daughter, who was born with a host of medical complexities, Mia Matthews embarked on a journey to advocate for continuing education and specialized training for home health nurses who care for people with complex medical conditions. In an article for the National Center for Complex Health and Social Needs, Ms. Matthews, president and executive director of the CHANs Promise Foundation, recounts her story and suggests multiple ways consumers can become advocates. Read more.

In Brief

Children with Medical Complexity

New Journal Highlights Work to Advance Pediatric Complex Care

The first edition of the Complex Care Journal, an open-access publication that aims to advance care for children with medical complexity, is now available. This self-published, peer-reviewed, practice-oriented journal offers a wide range of content, including reports on promising programs from around the country. The editors will accept submissions. Read the first edition (PDF).

In Brief

Family Engagement

‘It Will Consume Your Life’: 4 Families Take on Rare Diseases

A New York Times article chronicles how four families, confronted by rare illnesses that most scientists overlook, had to work out their own approaches to find treatments.

CSHCN and Equity

California Children’s Services

CCS Advisory Group: Whole Child Model, Telehealth, Prescription Drugs

Several key topics were the subject of wide-ranging discussion at the CCS Advisory Group meeting on July 8. Program and payment flexibilities allowed under COVID-19, particularly telehealth services, were noted, along with an extended explanation of the upcoming changes to prescription medications under Medi-Cal. The group discussed updates to the CCS program, including the Whole Child Model and the Medical Therapy Program, as well as issues that have arisen. Members also urged the state to begin post-COVID-19 planning now. The slide presentation provides some details, particularly on the planned prescription drug changes. For more information, write to

Department of Health Care Services Stakeholder Advisory Committee to Meet

Thursday, July 16
9:30 a.m. to 12:30 p.m. Pacific Time Register for the WebEx Meeting
1 (415) 655-0001; Passcode: 1456989997
Details: Agenda is posted on the committee website.

COVID-19 Information

Please see additional information on our COVID-19 web page.

Special Education

Bill to Watch

SB 4112: Child Care and Education Relief Act – Includes funding for the Individuals with Disabilities Education Act (IDEA), and contains other requirements regarding students with disabilities and Individualized Education Programs (IEP) during COVID-19.

California Policy


What are Respite Services?

Wednesday, July 15
10:30 a.m. to 12 p.m. Pacific Time (Spanish)
6 to 7:30 p.m. Pacific Time (English and Cantonese)
Support for Families of Children with Disabilities and Disability Rights California
Details: This webinar will discuss the most common questions about respite services and other family supports for children and adults with developmental disabilities who live at home. Register for the webinar in English and Cantonese or in Spanish.


AMCHP Annual Conference Coming Up

The Association of Maternal and Child Health Programs (AMCHP) will hold its 2020 conference virtually from August 4-6, with the theme “Power of Connections: Building Equity for Healthy Generations.” Fee. Read more and register.

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