Posted June 8, 2017

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

Network News

New Foundation Grants Focus on Quality Standards, Transition, Complex Care
Five new grants announced today by the Lucile Packard Foundation for Children's Health address a breadth of issues aimed at improving the system of care for children with special health care needs. Topics include implementing quality standards, payment for transition to adult health care, caring for children with medical and social complexity, and the use of Medicaid waivers for home and community-based services. Read more about the grants.

Webinar—A New Tool to Improve Care Delivery by Measuring Family Experience of Care Integration 
Register now for a 30-minute webinar that will introduce the Pediatric Integrated Care Survey (PICS), a validated instrument from Boston Children's Hospital that assesses family experience of care integration in order to improve processes of care coordination and care management. 

Thursday, June 15 
10 to 10:30 a.m. Pacific Time
Sponsors: Lucile Packard Foundation for Children's Health, the Catalyst Center, and Family Voices
Read more and register.

Family Engagement

Academy of Pediatrics Offers Framework for Shared Decision-Making by Families, Providers
Decisions about medical treatments for children with special needs often are complex, and they should be made collaboratively by the child, the family, and providers, according to a new clinical report from the American Academy of Pediatrics. To improve health outcomes and satisfaction for all involved, the Academy offers guidance for a systematic approach to shared decision-making. See Shared Decision-Making and Children with Disabilities: Pathways to Consensus.

Also see:

Webinar—Introduction to the Standards of Quality for Family Strengthening & Support
Wednesday, June 14
9:30 to 10:30 a.m. Pacific Time
Host: National Family Support Network
Presenters will describe common language that organizations can use to work more effectively with families, and a representative from Family Support New Hampshire will share the agency’s experience implementing the Standards of Quality for Family Strengthening & Support.
Learn more and register.

Webinar—Achieving True Partnership: Integrating Family Engagement in Systems of Care
Tuesday, June 20 
11 a.m. to 12 p.m. Pacific Time
Hosts: National Center for Medical Home Implementation, Family Voices' National Center for Family Professional Partnerships, and Bright Futures National Center
Third in a three-part series about family engagement in pediatric practices and systems, this webinar will present strategies to encourage and measure family engagement at the system level, especially in partnerships between Title V programs, state AAP chapters, and Family-to-Family Health Information Centers.

California Children's Services

Proposal Aims to Clarify CCS Role in Providing Services in Medical Therapy Program
The Department of Health Care Services has proposed trailer bill language (TBL 642) for the Governor’s Budget May Revision. The proposal would clarify the role of CCS in the provision of occupational and physical therapy for children with disabilities, limiting the responsibility of CCS to those services deemed medically necessary, not those that are solely educationally necessary. Read the trailer bill language (PDF) and an accompanying fact sheet (PDF). 

California Policy

Medi-Cal Children’s Health Advisory Panel to Meet
Wednesday, June 28
10 a.m. to 2 p.m. Pacific Time
1700 K Street, 1st Floor conference room, Sacramento, CA
888-972-9334; passcode: 2642685
The MCHAP is a 15-member independent statewide body that advises the Department of Health Care Services on matters relevant to children enrolled in Medi-Cal and their families. See the MCHAP webpage for updates and past meeting materials.

Also see: Medi-Cal Is Critical for Older Adults and Individuals with Disabilities

National Policy

At a Glance: Medicaid’s Importance for Children with Special Health Care Needs
The Kaiser Family Foundation has created an infographic that outlines the key role of Medicaid (Medi-Cal in California) for the nation’s 11.2 million children with special health care needs, and the impact that reduced federal spending could have on these children. Information also is broken down by state.

Also see:

Funding Opportunity

Developing Models to Improve Home and Community-Based Services for Individuals with Developmental Disabilities
The federal Administration for Community Living is offering grants aimed at improving coordinated home and community-based services to enhance the health, safety, and independence of individuals with developmental disabilities. Selected applicants will develop and test models that include strategies for monitoring participants' well-being and building their capacity to live autonomously.

Learn more about the funding opportunity and join an informational webinar.

Wednesday, June 14
10 to 11 a.m. Pacific Time



Hidden Figures—The Value of Outcome Data Transparency
Tuesday, June 13
11 a.m. to 12 p.m. Pacific Time
Hosts: American Academy of Pediatrics and the National Center for Birth Defects and Developmental Disabilities
This webinar will present challenges, opportunities, and strategies for data transparency for providers working with children living with a birth defect or other special health care need. Data transparency empowers patients and families, as well as providers to make well-informed decisions about their health care options.
Read more and register.

Bullying Prevention for People with Intellectual/Developmental Disabilities
Thursday, June 29
10 to 11 a.m. Pacific Time
USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Read more (PDF) and register.

Archived Webinar

Sexual Assault & Survivors with Disabilities: A Webinar to Raise Awareness, Share Resources, and Highlight Best Practices


13th Annual Disability Capitol Action Day
Tuesday, June 13
Cesar Chavez Plaza & State Capitol, Sacramento, CA
Host: The Disability Action Coalition
This annual event is for individuals with disabilities and their families who would like to learn about community resources and participate in legislative visits with policymakers.
Read more and register.

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at danielle.decosta [at] with your news or updates. Or contact newsletter editor: Eileen Walsh at eileen.walsh [at]