Posted May 12, 2016

A newsletter to inform advocates for children with special health care needs about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.

Please forward the newsletter and encourage your colleagues and constituents to join the Network.


New: Symposium Proceedings Highlight Ideas for Improving Care for Kids with Chronic Needs
In an effort to jump-start a national conversation on care for children with complex conditions, the Lucile Packard Foundation for Children's Health in December sponsored a symposium, "Designing Systems That Work for Children with Complex Health Care Needs." Experts from around the country discussed issues such as care planning and coordination, national health policy, self-management support, and financing. Speakers highlighted progress made in some areas, and identified potential solutions to ongoing issues. A new publication of the full proceedings captures the discussions.

Related Request for Proposals: Designing Systems That Work
Following up on ideas discussed at the symposium, the Foundation is seeking applications for grants to develop single-topic issue briefs that describe goals and processes to improve aspects of the system of care for children with chronic and complex health conditions. The briefs must provide specific, scalable recommendations for action related to practice, research, programs, and policy. Proposals are due September 15, 2016, and selected projects will begin December 1, 2016.


CCS Redesign Bill Amended
Amendments favored by advocacy groups have been made to Senate Bill 586, which addresses the future of the California Children's Services program and the state’s proposed plans to move some children covered by CCS into managed care. The amended language addresses a variety of topics, including rates, treatment guidelines, monitoring, evaluation, and family involvement. SB 586 now returns to the Assembly Health Committee. See the revised language.

Related: State Makes Changes to Managed Care Program for Elderly, Disabled

CCS Care Coordination/Medical Home/Provider Access Technical Workgroup—Webinar only
Friday, June 3
10 to 11:30 a.m.
Registration and meeting materials will be posted on the CCS Advisory Group website.


Department of Health Care Services Stakeholder Advisory Committee to Meet
Monday, May 16
9:30 a.m. to 3:30 p.m.
Sacramento Convention Center, 1400 J Street, Room 204
Public comment will be taken at the end of the meeting.
Dial-in: 800-369-1745; Passcode: 1372738
See agenda and meeting materials.

Also see: Meeting Summary (PDF) from the February 25 meeting of the DHCS Stakeholder Advisory Committee


Explaining New Rule on Changes to Managed Care
The federal Centers for Medicare and Medicaid Services (CMS) recently released a final rule that updates Medicaid managed care regulations. CMS is hosting a series of webinars on the final rule.
Next up:
Managed Care Quality
Thursday, May 19
9 to 10:30 a.m. Pacific Time
Dial in: 1-844-396-8222; Participant Code: 648 116 396
Or join the webinar.

See also: Major New Rule Seeks to Modernize & Improve Quality of Medicaid Managed Care


Webinar Series on Billing: Coding for Chronic and Transition Care Management Services in Pediatrics (Part 1)
Thursday, May 26
10 to 11 a.m. Pacific Time
Presented by the American Academy of Pediatrics with funding from the Lucile Packard Foundation for Children's Health
Read more and register. Free.

Resources from care coordination programs nationwide:


Physicians' Toolkits Aid in Transition to Adult Care
To help ease the transition of young adults into adult health care settings, the American College of Physicians has released targeted toolkits, which emphasize providing frameworks for clinicians who treat adults. Two of the kits focus on young adults with intellectual/developmental disabilities (PDF) and those with physical disabilities (PDF). The collaborative group that developed the toolkits included Got Transition, the organization that promotes the Six Core Elements of Health Care Transition.


Medical Home Series: Patient-Centered Communication
Monday, May 23
9 to 10 a.m. Pacific Time
Sponsored by the Johns Hopkins University School of Medicine and the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening

REACH for Transition: Integrating Health into the Transition IEP
Wednesday, May 25
9 to 10:15 a.m. Pacific Time
Sponsored by Statewide Parent Advocacy Network of New Jersey
Learn more and register.

Becoming ABLE Ready: Choosing the Right Program for You
Thursday, May 26
11 a.m. to 12:30 p.m. Pacific Time
Hosted by the ABLE National Resource Center
Learn more and register.

Also see: An informative video on Understanding ABLE and
What Are Able Accounts?


What You Need to Know about Regional Centers
Public Counsel, the nation’s largest pro bono law firm, has prepared "Regional Center Basics," an orientation to California's Regional Center system. The manual, produced with support from the Lucile Packard Foundation for Children's Health, covers Regional Center history, services, fees, individual program plans, the appeal process, and more.

Changes at the Catalyst Center
The Catalyst Center, the national center dedicated to improving health care coverage and financing for children and youth with special health care needs, is now part of the Center for Advancing Health Policy and Practice (CAHPP) at Boston University School of Public Health. The Catalyst Center website now is available as part of the new CAHPP website. You also can sign up for the new CAHPP quarterly newsletter.

Other Useful Resources


Video Contest Highlights Family Emergency/Disaster Planning
To encourage sharing of helpful ideas, Family Voices is seeking home-made, short videos from families of children with special health care needs who have had experiences dealing with emergencies or disasters. Accepted videos win a $100 prize. Deadline is May 31.


It's All in the Family
Monday, May 16
9 to 10:30 a.m.
Braille Institute, 741 North Vermont Avenue, Los Angeles
Sponsored by Infant Development Association of California and the Child Development Institute
Will address the impact on families of having a child with special needs, and provide strategies for family strengthening.
Fee. Continuing Education units offered.
Learn more and register.



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