Posted February 16, 2017

News, policy updates, resources, events, and advocacy opportunities

California Children’s Services

CCS Families: Take the Durable Medical Equipment Survey (Time Sensitive)
Has your family had issues obtaining durable medical equipment (DME)—such as wheelchairs, walkers, lifts, etc.—for your child with special health care needs? California’s Department of Health Care Services (DHCS) has asked Family Voices of California to collect family input to help inform the CCS redesign team. Share your DME concerns and ideas for solutions in this survey. All responses submitted by tomorrow, February 17, will be sent to DHCS, and stories received after this date will be used in future advocacy efforts.

Comment on Managed Care Network Adequacy Standards: Deadline February 28
A final rule issued by the federal government in April 2016 affects many important provisions of Medicaid managed care (Medi-Cal in California), including care coordination and network adequacy. Now, the Department of Health Care Services seeks public comment on its proposal to meet the new standards, which apply to pediatric primary and specialty care and hospitals, among other providers. Standards include time and distance requirements, timely access for non-urgent appointments, and more. Questions and comments should be submitted to by February 28. Read the proposal (PDF).

Care Coordination

Health Plans Take Novel Approaches to Care Coordination
A just-published report highlights various strategies that safety net health plans are implementing to improve care coordination for children with special health care needs and their families. Innovative Approaches in Care Coordination and Care Delivery offers examples from programs around the country, including two in California, and covers topics such as establishing partnerships with providers; quality measurement; data mining; supporting non-medical needs; and creative payment models. The report was prepared by NORC at the University of Chicago for the Association for Community Affiliated Plans. 

Identifying Pediatric Care Coordination Activities Nationwide
An environmental scan from the National Center for Care Coordination Technical Assistance provides information about how states are implementing pediatric care coordination practices. Respondents from 35 states reported on successes and challenges. Read more (PDF).

Network News

This American Heart Month, Meet 4-Year-Old Isabella
February is American Heart Month. Isabella, a 4-year-old with Down syndrome and developmental delays, had open-heart surgery to correct a heart defect when she was 6 months old. Meet Isabella and her family, who were featured in the “Super Parents” project.

Related: Two Chances to View 'Super Parents' Photo Exhibit 
A photography exhibit based on the “Super Parents” family stories project will be displayed at the California State Capitol Building, in the Annex Hallway, on February 27-28, to coincide with the Family Voices of California Health Summit. From March 5-7, the exhibit will be on display at the Association of Maternal & Child Health Programs (AMCHP) annual conference in Kansas City, MO. For more information about the exhibit, email


Young Investigators Tackle System Change from Many Angles
Eleven young researchers have completed projects and published journal articles on ways to improve the health care system for children with special needs. Their work covers a breadth of issues including children’s transition from hospital care to primary care; education of pediatric residents; and transition of care from adolescence to adulthood. The Lucile Packard Foundation for Children’s Health launched the Young Investigator-CYSCHN program in 2012. Read more

Seeking Best Practices in Managed Care for Individuals with Intellectual/Developmental Disabilities
Researchers at the University of Illinois at Chicago are working with the State of the States in Developmental Disabilities project to identify best practices in managed care for people with intellectual and developmental disabilities. Complete the survey to submit suggestions about programs or policies. Recommendations will be disseminated nationwide. For more information, contact Caitlin Crabb at Survey responses are requested by March 1.

Transition to Adult Care

National Policy

Survey of School Leaders Highlights Impact of Potential Medicaid Cuts on Children with Special Needs
Educational leaders are expressing concern about the economic effects on special education programs if Republican proposals to refinance Medicaid are enacted. A survey by the School Superintendents Association queried 1,000 school leaders about the educational and economic consequences of the proposed cuts. Read the full report: Cutting Medicaid: A Prescription to Hurt the Neediest Kids (PDF).

Related Webinar: Medicaid and Public Schools
Tuesday, February 21
11 a.m. to 12 p.m. Pacific Time
Host: Learning First Alliance
Read more and register.

Medicaid: Essential for Children with Special Health Care Needs
Public health insurance programs like Medicaid cover nearly half of the population of children with special health care needs (CSHCN) nationally. The Kaiser Family Foundation recently released an article outlining the important role that Medicaid plays in the lives of these children and their families. Read more and see specific data on California’s one million CSHCN, along with national comparisons.

Also see: 5 Key Questions: Medicaid Block Grants & Per Capita Caps, which explains the basics of Medicaid funding and potential implications of proposed changes. 


Funding Opportunity

Feds to Fund CSHCN Research Network
The Health Resources and Services Administration (HRSA) is soliciting applications to develop the Children with Special Health Care Needs Research Network (CSHCN-RN). The Network will lead, promote, and coordinate national research activities to strengthen the evidence base related to key components of a comprehensive, high-quality system of care for children with special health care needs. Applications are due March 16.


Housing for People With Intellectual and Developmental Disabilities
Thursday, February 23
10 to 11 a.m. Pacific Time
Host: USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Read more (PDF) and register.

Creating Systems for Individuals Who Experience Co-Occurring Mental Illness and Intellectual Disabilities
Wednesday, February 22
11 a.m. to 12:30 p.m. Pacific Time
Host: Federation of Families for Children's Mental Health
Sponsor: Substance Abuse and Mental Health Services Administration
State systems are searching for the most cost-effective strategies to provide supports to people who experience co-occurring mental illness and intellectual disabilities. This webinar will present one state's response.


Association of Maternal & Child Health Programs (AMCHP) Annual Conference
March 4-7
Kansas City, MO
Sessions will cover topics including children and youth with special health care needs, early childhood services, adolescent health, and more.
Learn more and register. Fee.

In the News

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Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at with your news or updates. Or contact newsletter editor: Eileen Walsh at

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