Posted December 17, 2015

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.

Missed a past issue of the newsletter? You can find them all here.

Dear Readers,
The next edition of the Network Newsletter is scheduled for January 7, 2016. We will send updates if any major developments occur in the interim. Wishing everyone a joyous and peaceful holiday season.
      – Eileen Walsh and Danielle DeCosta


Experts Examine Challenges to a Better System of Care for Children with Medical Complexity
If you were unable to listen to the live stream of the recent national symposium on designing a better care system for children with medical complexity, you now can view videos of all six sessions, along with the speakers' slides. This lively symposium, with a highly engaged audience, included sessions on the family perspective, risk assessment, care planning and coordination, self-management, team care, and cost, financing, and payment.

Study: Pediatric Residents Identify Four Challenges in Caring for Kids with Complex Needs
A lack of care coordination and inadequate training for providers were cited by pediatric residents in a recent study as two of their major challenges in caring for children with chronic, complex health problems. Study participants also noted complex technology management and pervasive psychosocial needs of patients as barriers to quality care. The research, published in Academic Pediatrics, was sponsored by the Lucile Packard Foundation for Children's Health. Read the abstract.

Support for Families Featured on Newscast
Juno Duenas, longtime advocate and executive director of Support for Families of Children with Disabilities, discussed the organization's work on Bay Area Focus on CBS in San Francisco, along with Joe R. Goyos, director of the organization's education program. Watch the six-minute interview.


Next CCS Advisory Group Stakeholder Meeting
Wednesday, January 6, 2016
10 a.m. to 4 p.m. Pacific Time
Sacramento Convention Center, 1400 J Street, Sacramento
Call-in number: (888) 921-8686; Passcode: 961-640-6431
Find details.

Mental, Behavioral Health Are Focus of CCS Technical Workgroup Webinar
At the December 11 CCS technical workgroup meeting, representatives from the California Community Care Coordination Collaborative (5Cs) in Alameda County presented information about their mental health initiative. The meeting also featured an overview of California's county public mental health services for children, and a segment on integration of behavioral health services for children with chronic illness. View the presentation slides (PDF) and visit the technical workgroup webpage to view the webinar recording.


Comments Due December 24 on State's Health Homes Proposal
The Health Homes Program is an optional federal benefit that allows states to provide supplemental support to Medicaid beneficiaries with complex conditions, including children. Health homes provide assistance in coordinating access to medical and behavioral health services and offer links to community supports. The Department of Health Care Services (DHCS) is in the process of developing a program for California, and has just released an updated concept paper on the program design, based on stakeholder feedback. Read the concept paper (PDF) and email comments to by December 24.

Autism: State Outlines Managed Care Plans' Obligations for Behavioral Health Treatment
The Department of Health Care Services on December 3 sent a letter to all Medi-Cal managed care health plans in the state listing their responsibilities for providing behavioral health treatment (BHT) coverage for children diagnosed with autism spectrum disorder. Autistic spectrum disorders are among the most common chronic conditions affecting children. Read the requirements (PDF).

Also see: New CDC Data: Prevalence and Characteristics of Autism Spectrum Disorder Among 4-Year-Old Children


Controversy in Florida Over Eligibility Determinations for Health Coverage for CSHCN
Approximately 9,000 Florida children have lost coverage under the state's Children's Medical Services (CMS) since May, as officials implement a state law changing CMS from a fee-for-service plan to a state-run managed care plan. The state denied coverage to children based on parental response to a question from the nationally recognized "screener" that uses a series of questions to identify children with special health care needs. Experts who created the screener called it a misuse of the tool. Parents and health care providers have objected strongly to the CMS changes, and the issue continues. Read newspaper stories from October and December.


Family-Controlled Organizations Invited to Apply for Program to Address Mental Health
The Substance Abuse and Mental Health Services Administration is accepting applications for Statewide Family Network Program grants of up to $95,000 per year, for up to three years. The program aims to enhance the capacity of states to meet the needs of children and youth with mental health challenges and their families. Applications are due January 21, 2016.

Funds Available for Patient/Caregiver/Healthcare Provider Collaborations
Up to $5.5 million will be granted in 2016 by the Patient-Centered Outcomes Research Institute (PCORI) for development of research ideas and proposals designed by partnerships of patients, caregivers, and other health care stakeholders who are non-traditional candidates for research grants. Letters of Inquiry are due January 18, 2016, but the specific research topic can be identified later. Read more about the Pipeline to Proposal Awards Initiative.


American Academy of Pediatrics Offers Physicians Information on Special Education
In a clinical report published in Pediatrics, the American Academy of Pediatrics urges doctors to play a role in ensuring that children with disabilities receive an appropriate education. The report provides a summary of key components of the Individuals with Disabilities Education Act (IDEA), which guarantees that all children receive the early intervention and special education services to which they are entitled. Read the report.

Other resources:

  • The December issue of Complex Child focuses on Spirituality.


Caregivers Benefit from Pediatric Palliative Care, Too
The provision of palliative care, which is a valuable service for children with serious health conditions, also results in reduced stress and worry for their caregivers, according to research published in the Journal of Hospice and Palliative Nursing. The study, which focused on Partners for Children, a special state program in California that allows concurrent palliative and curative care, was led by researchers at the UCLA Center for Health Policy Research. Read more and see the abstract.

The Business Case for Palliative Care
Clinical and financial motivations for community-based practitioners to operate palliative care programs often seem at odds. An article in the Journal of Pain and Symptom Management provides an argument for how business and clinical motivations for palliative care actually align, making the case that providers should offer this support to patients and families


Youth Leadership Forum for Students with Disabilities
July 23-29, 2016
This five-day leadership program provides information about employment, education, independence, and assistive technology for high school juniors and seniors with disabilities. Students have the opportunity to interact with their peers and program staff with various disabilities. Visit the website for more details.
Applications (PDF) are due January 15, 2016.

Young Adult Story: 'If I Knew Then...'
Mallory Cyr, a young adult leader in the maternal and child health community, shares her experience growing up with special health care needs. Read her story, published in the latest Pulse newsletter from the Association of Maternal & Child Health Programs (AMCHP).



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