Posted April 13, 2017

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

Network News

How States Are Using National Standards to Improve Systems of Care for CSHCN
In 2012, the Lucile Packard Foundation for Children's Health provided support to the Association of Maternal and Child Health Programs (AMCHP) to develop standards that outline the essential components of a comprehensive system of care for children and youth with special health care needs. The standards represent the consensus of national experts across multiple systems. Today, programs around the country are using the standards to build and improve their systems of care. Read a blog post from AMCHP about how states are implementing the standards, and see a fact sheet (PDF) on the standards and the original full report

California Children’s Services

Advisory Group Addresses Breadth of Topics Related to CCS Redesign
The definition of care coordination, issues with obtaining durable medical equipment, and integrating family participation at all levels of program implementation were among topics discussed at the April 12 meeting of the CCS Advisory Group in Sacramento. The Advisory Group provides guidance to the Department of Health Care Services as it prepares for first-phase implementation of the Whole Child Model. Find the full meeting agenda and the PowerPoint presentation on the Advisory Group website. Also see an updated list of group members (PDF). A summary of the meeting also will be posted on the site.

Family Engagement

Video: Senate Informational Hearing on Children with Special Needs
Parents, policymakers, and a passionate 14-year-old advocate shared their expertise and recommendations on how families can be more engaged in policymaking as part of the third informational hearing of the California Senate Select Committee on Children with Special Needs. A number of family members spoke during the public comment portion of the hearing, highlighting the importance of family representation and offering suggestions for how policymakers can facilitate family and youth engagement. See the final agenda (PDF) and watch the hearing.

California Policy

Medi-Cal Children’s Health Advisory Panel to Consider Managed Care Plans’ Network Adequacy Standards
Tuesday, April 18
10 a.m. to 2 p.m. Pacific Time
1414 K St, 1st Floor Conference Room, Sacramento
Dial-in: 888-324-3816; Passcode: 5821353
The Medi-Cal Children’s Health Advisory Panel (MCHAP) is a 15-member independent statewide body that advises the Department of Health Care Services on matters relevant to children enrolled in Medi-Cal and their families. One topic of discussion for this meeting will be the network adequacy standards for Medi-Cal managed care plans. See the full agenda and meeting materials on the MCHAP website.

National Policy

Advocates Urge Continued Pressure on Congress Regarding Health Care, Medicaid
Although Congress did not repeal the Affordable Care Act last month, efforts are under way to revive the issue. Family Voices and other organizations encourage stakeholders to make their views known to their representatives during the federal legislative break.

Also see: Low-Income Children with Chronic Conditions Face Increased Costs if Shifted from CHIP to Marketplace Plans – from Health Affairs

Transition to Adult Care

Spin the Wheel to Navigate Transition
Family Voices Colorado has created a Transition Guide wheel, which organizes transition preparation activities and tasks by age level for youth with complex needs. Domains include health coverage, career planning, and life skills.

New: Tip Sheet to Help Practitioners Bill for Transition Services
Got Transition and the American Academy of Pediatrics have released their 2017 Coding and Reimbursement Tip Sheet (PDF) for practitioners guiding children and families through the transition from pediatric to adult health care. The updated resource includes detailed coding descriptions for services, and seven clinical vignettes with recommended codes. For more tools and guidance regarding transition for adolescents with special health care needs, see the Got Transition website.


Study Assesses Maltreatment Risk Across Disability Types
Children with disabilities are known to face a higher risk of maltreatment and neglect, but a new Australian study published in Pediatrics found variation in incidence based on the child’s diagnosis. Children with intellectual disability, mental/behavioral problems, and conduct disorder had increased risk, but children with autism, Down syndrome, or birth defects did not. Read the study

National Survey: Families Report Inconsistent Performance in Children’s Hospitals
A parent survey covering 69 children's hospitals in 32 states found a wide range of experiences with hospitals stays, indicating "substantial room for improvement," according to results published in Pediatrics. Parents commented on five categories of care, including communication with parents and with the child, attention to safety and comfort, hospital environment, and the overall experience. Read more



CalABLE Workshop for Service Providers
Monday, April 17
1 to 2 p.m. Pacific Time
Sponsor: California State Treasurer
The ABLE Act creates tax-advantaged savings accounts for individuals with disabilities. This workshop teaches service providers how to assist clients in setting up accounts in California.  

Engaging Diverse Families in Leadership for Systems Change
Thursday, April 20
12 to 1:30 p.m. Pacific Time
Sponsor: Family Voices/National Center for Family Professional Partnerships
This webinar has reached capacity, but you may register to receive a recording of the webinar.

Rescheduled: Breaking the Link Between Special Health Care Needs and Financial Hardship
Wednesday, April 26
10 to 11 a.m. Pacific Time
Host: Catalyst Center
Causes and consequences of financial hardship for families of children with special health care needs, and state strategies and resources to address it.
Learn more and register.
Also see: The updated resource from the Catalyst Center: Breaking the Link Between Special Health Care Needs and Financial Hardship

Occupational Therapy & Sensory Processing for People with Intellectual and Developmental Disabilities
Thursday, April 27
10 to 11 a.m. Pacific Time
Hosts: USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Read more (PDF) and register

Funding Opportunities

  • The Consumer Advocacy for Transformation program at the Robert Wood Johnson Foundation has issued a call for proposals to fund state-based or local consumer health advocacy projects that aim to develop and insert an organized, influential, and permanent consumer voice in state and local health system changes. Applications due May 5. See details.
  • Awesome Disability offers a $1,000 grant every month to projects to support people in the disability community. Learn more.

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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