Posted November 12, 2015

A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.

Stay up to date on CSHCN news by following the Foundation's Facebook and Twitter accounts.


The Care Coordination Conundrum
Care coordination almost always tops the list of services desired by families of children with special health care needs. Yet agreement is lacking not only on the definition of care coordination but also on the best methods of financing this much-needed benefit. A new report from the Catalyst Center, with support from the Lucile Packard Foundation for Children's Health, tackles the thorny questions of what care coordination is, who should receive it, who should provide it, and how it should be financed. Read the report.


National Symposium: Designing Systems That Work for Children with Complex Health Care Needs
Tune in to a live webcast on December 7-8 when a major national symposium in Washington, DC, will bring together top national experts to consider how to improve the organization and financing of children's health care, particularly for children with complex conditions.

The meeting will provide a forum to learn from those making progress in system improvement for child health, and also will include those working in adult health care and health policy. Participants will identify solutions to issues and make recommendations for adoption of those solutions in practice, programs, and policy.

The invitation-only symposium is sponsored by the Lucile Packard Foundation for Children's Health in partnership with the National Academies of Sciences, Engineering, and Medicine's Forum on Promoting Children's Cognitive, Affective, and Behavioral Health.

See the agenda and the list of confirmed speakers, and register for the live webcast.

Seeking Families for 'Day in the Life' Photography Project
The Lucile Packard Foundation for Children's Health seeks families of children with special health care needs to participate in a documentary photography project that sensitively captures the realities of caring for CSHCN in California. A photographer will "shadow" families, visiting them in their homes and traveling with them to medical appointments. The Foundation encourages families from throughout the state to participate. Interested families are asked to complete this form.


Upcoming Meetings

Legislative Hearing: The Future of the California Children's Services Program
Wednesday, November 18
11 a.m. to 2:15 p.m. Pacific Time
The California Endowment
1000 N. Alameda Street, Los Angeles
The Senate Health Committee will hold an informational hearing on the future of the California Children's Services program, and hear comments and ideas for program improvement from the public. Read more.

Planning Call for CCS Advisory Group Meeting
Thursday, November 19
12:30 p.m. to 1:30 p.m. Pacific Time
Call-in number: (866) 675-9574; passcode: 5425865
The Department of Health Care Services has invited members of the California Children's Services Advisory Group to contribute to the agenda-planning process for the in-person meeting scheduled for January 6, 2016. At the end of the call, members of the public may offer their ideas or suggestions for the agenda. For more information, visit the CCS Advisory Group website or email

Webinar Recording Now Available: Data & Quality Measures Technical Workgroup
A recording of the September 29 webinar of the Data & Quality Measures Technical Workgroup, part of the CCS Advisory Group, now is available. Register to obtain free access to the recording.


November 16: Medi-Cal Children's Health Advisory Panel
Health coverage for all children will be a key topic at the November 16 meeting of the Medi-Cal Children's Health Advisory Panel. The panel, which advises the Department of Health Care Services on issues relevant to children enrolled in Medi-Cal, will meet from 1 p.m. to 4 p.m. at 1500 Capitol Ave., Sacramento. For call-in information, meeting materials, and the agenda, visit the website.

In-Home Supportive Services Workers to Receive Overtime Pay
After a series of legislative and court battles, California has agreed to meet federal regulations (PDF) requiring overtime pay for individuals who provide in-home care, effective February 1, 2016. Read more.


Parent and Family Engagement Conference
December 1-4
San Diego, CA
Hosted by the National Head Start Association
This national event will explore how partnerships between families, communities, and Head Start program staff can help to address the needs of the whole child in early childhood education.
Learn more and register.

The Changing Landscape of Care for Children with Special Health Care Needs and Their Families
Friday, December 4
Los Angeles, CA
Sponsored by the Los Angeles Partnership for Children with Special Needs
The program includes discussion of dental care access for children with special health care needs, the redesign of the California Children's Services program, and transition to adulthood.
Download the agenda and registration form (PDF).

Association of Maternal & Child Health Programs Annual Conference
January 23-26
Washington, DC
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.


Providers' Use of Coaching Behaviors in Telepractice
Thursday, November 19
10:30 a.m. to 11:30 a.m. Pacific Time
Hosted by the National Center for Hearing Assessment and Management, Utah State University
The potential for providers to use telecommunication to deliver family-centered early intervention is the subject of a recent study with families of young children who are deaf. This webinar will present the results of this research in the context of the growing field of telehealth.
Learn more and register.

Learn About Assistive Technology Online—Livestream Workshop
Thursday, November 19
4:30 p.m. to 5:30 p.m. Pacific Time
Sponsored by the Pacer Center
This workshop will provide Assistive Technology (AT) information and resources for parents and educators, including information about webinars, articles, and social media to make learning about AT fun and impactful.
Learn more and register.


Palliative Care Organizations Join Forces
The Children's Hospice & Palliative Care Coalition (CHPCC) will become a division of the Coalition for Compassionate Care of California (CCCC). This partnership will combine and enhance the advocacy efforts of these two organizations. Read more.

Also see: Meet Devon Dabbs, co-founder of CHPCC, now Vice President of Pediatric Programming and Education at CCCC

Other useful resources:


Career Preparation Video Series for Young Adults with Disabilities
Gaining work experience early is critical for all young people, but especially those with disabilities. The Youth Transitions Collaborative has created a series of videos highlighting the importance of work-based experiences during the transition to adulthood. The "Work Early, Work Often" campaign is designed for young people with disabilities, their family members, and potential employers. View the video series.

Also see: 10 Things You Should Know for National Disability Employment Month



Let us know what's happening with your organization or family. E-mail Program Associate Danielle DeCosta at with your news or updates. Newsletter Editor: Eileen Walsh