Posted May 25, 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.


TOMORROW: Public May Comment on Proposed Topics for CCS Advisory Group's June Meeting
The California Children's Services (CCS) Advisory Group will hold an informal conference call on Thursday to solicit feedback on a proposed agenda for the Group's upcoming meeting on June 29. Currently, the agenda is scheduled to focus half on the Whole-Child Model and half on CCS program improvements statewide. The conference call is open to the public, and public comment will be taken at the end.
Thursday, May 26
10 to 11 a.m.
Call-in number: 866-704-1470
Passcode: 3856049


And the winners are...
The Amazon gift cards for completing our Network Newsletter survey have been awarded, and analysis of the survey results is complete. More than 160 readers offered their feedback, and while the responses on content and frequency were quite positive, we do plan a redesign of the format to make the text more readable and easier to skim. Thanks to all who took the time to respond. See a brief summary of the survey results. 


How Advocates Can Monitor Changes to Medi-Cal Managed Care
In its most recent newsletter, the National Health Law Program outlines some of the major provisions of the new "final rule" that brought broad changes to Medicaid managed care. The article also suggests opportunities for advocates to ensure that beneficiaries have access to the services to which they are entitled. California is considering moving some children covered under California Children's Services (CCS) into managed care.

Explaining Changes to Managed Care
The federal Centers for Medicare and Medicaid Services (CMS) is hosting a series of webinars on the new final rule.
May 26: Program Integrity
June 2: Rate Setting, MLR, and Delivery System Reform
June 9: CHIP Managed Care
9 to 10:30 a.m. Pacific Time for all webinars
Dial in: 1-844-396-8222; Participant Code: 648 116 396

Feds: Children Living Out of Home Entitled to Education Services
The federal government estimates that about 5,000 school-age children nationwide live in nursing homes because of the complexity of their medical conditions. In an April 26 letter (PDF), the US Department of Education reminds states and school districts that they are obligated to identify these children and provide the appropriate education services required under the Individuals with Disabilities Act.

Also see: IDEA Applies No Matter Where Kids Call Home, Feds Say and
Senator Calls for Full Funding of IDEA


Webinar Series on Billing: Coding for Chronic and Transition Care Management Services in Pediatrics
Tuesday, June 7
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. CEU credits available.


Balancing Strengths & Needs: Family Centered Conversations
Thursday, May 26
9 to 10 a.m. Pacific Time
Sponsored by the New England Genetics Collaborative
How a team approach to caring for children with genetic and complex conditions within the Patient Centered Medical Home can improve collaboration, coordination, and satisfaction for families and providers. CME credit available.
Learn more and register.

Family Participation in Discharge Planning: Voices of Patients, Parents, and Advocates
Thursday, June 9
12 to 1:30 p.m. Pacific Time
Sponsored by Boston Children's Hospital with support from the Lucile Packard Foundation for Children's Health
Allison Gray and Elana Ford of Family Voices of California's Project Leadership will be panelists in this conversation about current efforts to engage families in planning for discharge, common sense practices that facilitate dialogue between families and clinicians, and pragmatic steps that hospitals and clinicians can take to improve the discharge experience for families.
Learn more and register.


Health Care Coverage and Financing for Children with Special Health Care Needs: A Tutorial to Address Inequities
The Catalyst Center has created a tutorial to help maternal and child health leaders, family leaders, and other stakeholders understand and address health care coverage inequities that exist among vulnerable subgroups of children with special health care needs (CSHCN).

Other Useful Resources


47 States Provide Some Reimbursement for Telehealth
The 2016 edition of "State Telehealth Laws and Medicaid Program Policies" offers the most current summary guide of telehealth-related policies, laws, and regulations for all 50 states and the District of Columbia. View an interactive policy map and read the full report (PDF) from the Public Health Institute's Center for Connected Health Policy.


Person Centered Planning for People with Developmental Disabilities: What People with Disabilities and Families Need to Know
Thursday, May 26
10 to 11 a.m. Pacific Time
Sponsored by the USC University Center for Excellence in Developmental Disabilities
Read more and register.

Webinar Series: How to Advance Health Equity and Care Quality in the Pediatric Medical Home
May 31: Changing Relationships: How to Foster Effective Communication with Patients and Families
June 8: Changing Practice: How to Understand and Address Social Factors that Shape Child Health
9 to 10 a.m. Pacific Time for both webinars
Sponsored by the National Center for Medical Home Implementation
Read about the series and register.

State Approaches to Providing Health-Related Supportive Services through Medicaid
Thursday, June 2
10 to 11:30 a.m. Pacific Time
Sponsored by the Center for Health Care Strategies and The Commonwealth Fund
Highlighting innovative models of how states are using Medicaid to provide non-traditional supportive services, such as housing, employment, education and training, and environmental modifications.
Read 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