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California Community Care Coordination Collaborative
On June 4, 15 members of the California Community Care Coordination Collaborative (5Cs) came together with staff of the Lucile Packard Foundation for Children’s Health in Palo Alto to present their progress and discuss challenges in improving their local systems of care coordination. Two common themes emerged during the meeting: first, the coalitions want to make the system easier for families to navigate, and second, they hope to improve provider and agency collaboration and training, leading to greater effectiveness and use of existing care coordination services. Collaborative members will participate in technical assistance events provided by the Foundation this summer and fall, followed by a second in-person meeting at the Foundation in January of 2014. (Additional information on the 5Cs project is available at

California Policy
New Report: CSHCN and the Affordable Care Act: Covered California
In just a few months, many families of children with special needs will have the opportunity to purchase health insurance through the state’s new insurance market, Covered California. Families will have a choice of five benefit plans that differ substantially in the cost of monthly premiums, the amount of copayments for each service, and the amount families must spend before the insurance begins to pay (deductibles). So what should families choose -- high-end “platinum” coverage, basic catastrophic coverage, or something in the middle? A new issue brief from the Lucile Packard Foundation for Children's Health assesses the strengths and weaknesses of the proposed plan, notes issues of concern, and offers comprehensive charts regarding services and coverage.

In many ways, the news is good, according to the brief’s authors, Peggy McManus and Harriette Fox of the National Alliance to Advance Adolescent Health. California’s decision to adopt the Kaiser Small Group HMO 30 Plan for Small Businesses as its benchmark plan meant that the proposed plan will offer a broad set of essential health benefits. Yet there still are some services important for CSHCN that aren't covered under the benchmark plan, and questions remain. McManus also presented the findings from this report at a legislative briefing in Sacramento in April. You can view her remarks here.

Medi-Cal Provider Cuts
Thousands of health workers rallied at the California State Capitol Tuesday to protest a 10 percent cut in provider rates called for in Gov. Jerry Brown's proposed state budget. A federal judge recently upheld the state's right to impose the controversial cuts, but provider groups have said they will appeal that decision to the Supreme Court. We'll continue to monitor the issue.

Healthy Families Transition
State lawmakers have suggested appropriating $50 million to ensure that children with autism who are covered by Medi-Cal are able to receive applied behavioral analysis therapy through the end of the year. Some families of children who transitioned from Healthy Families to Medi-Cal this year found that their children could not continue their ABA treatment because of differing benefits coverage under Medi-Cal managed care. The proposal assumes that in 2014 ABA therapy will be included as an essential benefit under the Affordable Care Act. We'll continue to monitor the status of this proposal.

National Health Policy
In-Home Supportive Services (IHSS)
A new proposed federal rule that would require overtime pay for in-home caregivers could potentially disrupt services for children served by the In-Home Supportive Services program, a California program that helps pay for caregivers who often are family members. It's unclear when the rule might be implemented. We'll update the situation in our next newsletter.


Recession Led To A Decline In Out-Of-Pocket Spending For Children With Special Health Care Needs
Health Affairs, June 2013 issue

Motor Delays: Early Identification and Evaluation
Pediatrics, published online May 27

Current Status of Transition Preparation Among Youth With Special Needs in the United States
Pediatrics, published online May 13

Globally, Kids With Disabilities Struggling, UNICEF Finds
Disability Scoop, June 4

HHS Secretary Sebelius Calls for Review of Child Organ Transplant Rules
ABC News, June 1

DSM-5 criteria 'at odds' with early autism diagnosis
Family Practice News Digital Network, May 29

Autism After Age 21
Transition Guide, Easter Seals

National Respite Care Locator
ARCH National Respite Network and Resource Center

Keep in Touch
Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at at with your news or updates.