Posted July 21, 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.


Webinar: Family Protections and Continuity of Care in the New 'Whole-Child Model' for Children in California Children's Services
Wednesday, July 27
12 to 1 p.m. Pacific Time
Sponsor: Family Voices of California
Presenters from Disability Rights California and Western Center on Law and Poverty will provide information for families who reside in one of the 21 counties where children in CCS may be transferred into managed care. Their topics will include how families can keep their child's existing providers, continuity of care rights, grievances, second opinions, how to appeal decisions, and more.
Read more and register.

Stakeholders Critique State's CCS Redesign Documents
Ten organizations have submitted a joint letter to the Department of Health Care Services commenting on the six CCS redesign-related draft documents the state released on June 29. The authors state that the documents are premature, given current pending legislation (SB 586) and ongoing discussions, and that the documents also lack the specifics needed to measure the transition to the state's proposed whole-child model. The letter also includes extensive comments on the implementation timeline, health plan and county readiness, and the phase-in methodology, along with a list of questions for the department. Read the letter (PDF).

CRISS: Highlighting 20 Years of Advocacy for an Effective CCS Program
The Children's Regional Integrated Service System (CRISS) has worked since 1996 to make CCS a family-centered, effective regional service delivery and care coordination system. CRISS brings together parent advocacy groups, children's hospitals, pediatric provider organizations, and CCS programs in 27 counties in Northern California, and also works with the Los Angeles CCS Workgroup. To mark its anniversary, CRISS has released a timeline (PDF) of its significant achievements.


Congreso Familiar Promotes Education and Leadership
More than a thousand people are expected to gather at Chabot College in Hayward, CA, on August 6 for Congreso Familiar (PDF), California's largest Spanish-language convening of families that have children with special needs. The conference offers 50 workshops on subjects such as transition to adult care, how masculinity in Latino culture affects family life, and immigration. Register.


Reminder: Webinar on Coordinating Care for Children in Families with Complex Social and Health Needs—Research and Practice
Wednesday, July 27
9:30 to 10:30 a.m. Pacific Time
Sponsored by the Catalyst Center and the Lucile Packard Foundation for Children's Health
Read more and register.


'Innovator' Awards Support Research on Community-Based Care
Three new awards from the Lucile Packard Foundation for Children's Health will support research on outpatient and community-based approaches to improving the health and well-being of children, particularly those with complex medical needs. The work, funded by the Foundation's newly established General Pediatric Innovator Awards, will be led by members of the Division of General Pediatrics at Stanford University. Read about the projects.


ACE Exceptional Kids Act Gets Congressional Hearing
Parents and other advocates for children with complex medical conditions testified July 7 in Congress about the long-pending Advancing Care for Exceptional Kids Act (ACE), HR546. The Act is intended to improve delivery of care for children with complex conditions served by Medicaid. The Senate and House have received extensive feedback on the newly revised bill, which focuses on health homes and care coordination and allows treatment across state lines. The cost to Medicaid has not yet been determined. Listen to the testimony at the Health Subcommittee of the House Energy and Commerce Committee. (Hearing begins at 10:12 mark.)

See also:

Celebrating the Accomplishments of the Americans with Disabilities Act
The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. To mark the 26th anniversary of the Act, which prohibits discrimination against individuals with disabilities in all areas of public life, the ADA National Network is promoting a year-long celebration, emphasizing progress made and work yet to be done. See the "one-stop resource" for all things ADA.

In Brief


5Cs Work Highlighted at National Help Me Grow Forum
"What's in it for me?" That was the tongue-in-cheek response from Wanda Davis when she was asked how she engages busy health care program managers and providers in collaborative work. Davis and two other members of the California Community Care Coordination Collaborative recently presented their work at the Help Me Grow National Forum in Greenville, South Carolina. Read their advice for collaboratives.


Table Highlights Medical Home Initiatives around the Country
A newly updated table from the National Center for Medical Home Implementation provides a "State at-a-Glance" overview of pediatric medical home initiatives being developed through Medicaid and the Children's Health Insurance Program (CHIP). The table includes information about states that have active Medicaid payment for pediatric medical home programs.


Subscribe: News about Child Health in California
The California Health Report is an online news outlet that covers health and health policy issues throughout the state, including stories about children, particularly those with complex conditions. The Report, which receives support from the Lucile Packard Foundation for Children's Health, has launched a newsletter highlighting children's issues (see example – PDF) that may be of interest to advocates. Subscribe to the Children's Health Edition.

Other Useful Resources


A Closer Look at the New ABLE Programs
Thursday, August 4
11 a.m. to 12:30 p.m. Pacific Time
Sponsored by the National Disability Institute
Designed to help families understand the differences among various ABLE programs, as well as how to determine which ABLE program might be best for their circumstances. Under ABLE, families may establish tax-advantaged savings accounts without losing benefits. Savings may be used for disability-related expenses for education, medical and dental care, job training, and more.
Read more and register.

Also see: Building Your Assets and Wealth: ABLE Accounts



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