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Network News

Photo credit: Larry Jernigan via Flickr

A recent meeting of the Rural Children’s Special Health Coalition (RCSHC) in Redding, Calif., helped participants better understand how managed care organizations deal with the influx of large numbers of new enrollees in rural areas. The coalition, one of the 5Cs care coordination grantees of the Lucile Packard Foundation for Children’s Health, is working hard to help inform families, providers and community service agencies about the upcoming transition from traditional Medicaid to Medicaid managed care, which is happening in rural and urban areas statewide. The group is hoping to minimize interruption in care and ensure that families of children with special health care needs receive coordinated care. The managed care organization that will cover this region participated in a Q&A session and provided valuable information to the more than 30 partners who attended. For example, the managed care organization agreed to resolve concerns one parent raised regarding the number of allowed visits to speech and occupational therapy.

California Policy
School Health Services
State legislation to expand school-based mental health services is moving forward and now heads to the state Senate Appropriations Committee. AB 174 would establish a pilot program in Alameda County to offer counseling and other services in schools to youth affected by trauma. A national bill to reauthorize federal funding for school health centers also has been introduced by Rep. Lois Capps.

Regional Centers: Cultural Competence Legislation
A state bill to improve the cultural competence of services provided by the state's regional centers is headed to the Governor's desk. AB1232, sponsored by Assemblyman V. Manuel Pérez, would add new quality assurance measures to ensure that regional center services are provided in a linguistically and culturally competent manner. The state has a quality assessment program in place for its regional center system, but doesn't currently collect data on cultural and linguistic competency.

National Policy
ACA Navigators
The Centers for Medicare & Medicaid Services last week approved final rules for Affordable Care Act navigators charged with helping consumers enroll in health insurance plans. The new regulations spell out how navigators are to be trained and certified, as well as the standards they must meet. Many staffers of groups serving families of children with special health care needs are becoming certified as navigators. More information about navigators>>

Maternal and Child Health Services
A U.S. Senate subcommittee has approved a bill that would guarantee level funding for the Maternal and Child Health Services Block Grant, which provides services to children with special health care needs. The $643.8 million proposed block grant is “is an important statement of priorities and represents a small victory in our ongoing advocacy to sustain funding for the Title V MCH Block Grant,” according to a statement from the Association of Maternal and Child Health Programs (AMCHP).

AMCHP Convenes National Work Group on CYSHCN System Standards
On Jun. 13, the Association of Maternal and Child Health Programs convened a national work group as part of the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN), a project funded by the Lucile Packard Foundation for Children’s Health. The national work group provided guidance and input to a draft set of standards for systems of care serving CYSHCN. AMCHP will continue to work with the group through the fall to achieve national consensus on a set of system standards that state Title V MCH programs, health plans, Medicaid and CHIP agencies, families, provider groups and others could use to inform and guide their work. A final national consensus document is planned for release in December 2013. For more information about this project, contact Karen VanLandeghem at

Genetic Alliance Rare Disease & Genetic Conditions Support Community on Inspire
August 8, 2013
9 a.m. - 10 a.m. PDT

Learn more about this online community on the patients' website Inspire, which connects patients, families, friends and caregivers for support and inspiration. Register>>

Creating Community Solutions
July 20, 2013
9:30 a.m. to 3:30 p.m.
Sacramento, Calif.

This event, part of the National Dialogue on Mental Health, offers opportunities for citizens and youth to learn about mental health and to recommend priority strategies and actions to improve the lives of those living with mental health issues, particularly youth. More information>>

Parent to Parent USA Directors Leadership Institute
Sept. 8-10, 2013
Charleston, SC

This conference offers leadership training and networking for leaders of parent-to-parent groups nationwide. More information>>

New Research
The Financial Impact of a Pediatric Telemedicine Program: A Children's Hospital's Perspective
Telemedicine and e-Health, July 2013

Healthy Families Program (HFP) Transition Frequently Asked Questions
California Department of Health Care Services

California Telephone Access Program
CTAP, a program of the California Public Utilities Commission, provides free adaptive phones and phone equipment to children and adults with even a mild difficulty in hearing, speech, mobility, vision, or cognition.

AMCHP Family Scholars Program
The Association of Maternal and Child Health Programs sponsors leadership and advocacy training for family members of children with special health care needs.

Cultural and Linguistic Competence Checklist for MCH Training Programs
Georgetown University Center for Child and Human Development

Data Advisory: California Children Less Likely to Receive Care in a Medical Home than Kids in U.S. Overall, July 2013 

CSHCN in the News
Tricare Changes Could Limit Treatment for 23,000 Military Children with Autism
Birmingham News, 7/16/13

Senator Calls for Developmental Disabilities Transition Action Plan
DisabilityScoop, 7/16/13

Music Decreases Perceived Pain for Kids in Pediatric ER
Science Daily, 7/15/13

Audit: State Homes for Developmentally Disabled Jeopardized Residents
San Diego Union-Tribune, 7/9/13

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.