A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.


Now Online: Stakeholder Groups' Recommendations for CCS Redesign
Over the past year a number of organizations have developed recommendations on how to redesign California Children's Services and the state's system of care in general for children with special health care needs. Links to these documents are now available on the UCLA redesign website, Stakeholder Input Documentation. These papers provide useful background for those interested in the work of the Redesign Stakeholder Advisory Board (RSAB). The Lucile Packard Foundation for Children's health recommends that proposed system designs be compared to standards developed through a national consensus process. The next RSAB meeting is scheduled for Friday, March 20, with location to be announced. Details about past and upcoming meetings are posted on the website. Write to CHPR_CCS@em.ucla.edu for more information.



Recommended for California: A State-Specific Transition Website for Youth and Families
Moving from pediatric to adult health care can be a complicated process for children with special health care needs. To assist in transition, 39 states have developed sponsored websites to facilitate planning and provide support. A new issue brief from the Lucile Packard Foundation for Children's Health highlights useful site content, and recommends that California develop its own state-specific transition website. Read more.
Webinar Series for Providers: Transition of Patients with Special Health Care Needs to Adult Medical Care
Seven-Part Series begins February 11
New York – Mid-Atlantic Consortium for Genetic and Newborn Screening Services
Designed to give health care providers the tools and understanding necessary to care for young adults with special health care needs who are transitioning from pediatric to adult care providers. Patients and families are encouraged to attend to better understand their role in medical care transition. Learn more and register.



Is Bias a Source of Unmet Needs for Medically Complex Kids?
In response to a 2014 study, Inequities In Health Care Needs For Children With Medical Complexity, a pediatric critical care and palliative care physician speculates that children with medical complexity may face the possibility of unmet health care needs simply because of who they are. Richard Boyte, MD, professor of pediatrics at the University of Mississippi School of Medicine, writes in Health Affairs that children with complex needs often are reflexively assumed by many in health care to have lives of very poor quality, and therefore may not receive all necessary care. See information about the original study, and read Boyte's blog.



Medi-Cal at Forefront of Budget Discussions
The Medi-Cal system, which provides coverage for many children with special health care needs, is currently the subject of conversation in a number of arenas. California's Medi-Cal reimbursement rates are among the lowest in the country, and the program has a backlog of applicants that has been the subject of a lawsuit. Dental coverage for children under Medi-Cal also is a concern. The program is funded in part by the national Children's Health Insurance Program, which is up for renewal this year. Several recent articles address these issues. See:
Governor Appoints Jennifer Kent to Lead DHCS
Jennifer Kent will succeed Toby Douglas as director of the Department of Health Care Services (DHCS), Diana Dooley, Secretary of Health and Human Services, has announced. Kent previously worked at DHCS, at Health Management Associates, and at the Local Health Plans of California. Read more about her.

DHCS Stakeholder Advisory Committee to Meet
The Department of Health Care Services Stakeholder Advisory Committee, which advises on the 1115 Bridge to Reform Waiver, will meet on Wednesday, February 11, from 9:30 a.m. to 3 p.m. at the Sacramento Convention Center, 1400 J Street, Rooms 203-204, Sacramento. The listen-only call-in number for the public is 1-866-581-6591, code 2791273. The agenda and additional information will be available on the website.

February 19: Autism Stakeholder Meeting
The monthly meeting regarding Behavioral Health Treatment for children and youth with autism disorders will be held from 3 p.m. to 5 p.m. on Thursday, February 19, at 1500 Capitol Avenue, Sacramento. Recordings and materials from previous meetings are available on the Department of Health Care Services webpage. Write to ABAinfo@dhcs.ca.gov with questions.



More Federal Funds Possible for School-Based Health Services
A long-sought change in federal policy may allow public schools to receive Medicaid funds for health services for the first time since 1997, a move that advocates say could increase health services and care coordination for children with special health care needs. Read more.



Thoughts from Family Voices' New Executive Director
Friday's Child, the e-newsletter of Family Voices, features an essay by the organization's new executive director, Nora Wells, on how family-centered care and family/professional partnerships have evolved over the years. She notes the accomplishments of Family-to-Family Health Information Centers and the need for a stable funding source for the centers. The newsletter contains a range of information for families. Read more (PDF).

Other useful resources:
  • The website of the California MAP to Inclusion and Belonging: Making Access Possible project has been updated. The project supports the inclusion of children with special needs in child care, after school and community settings. See the site.
  • Feeding Tubes are the topic of the February edition of Complex Child.


Can Health System Innovations Improve Care for CSHCN?
An article in Health Affairs describes the changing epidemiology of children's health and discusses how health systems are responding by reorganizing and innovating. See abstract of The Rise in Chronic Conditions Among Infants, Children, and Youth Can Be Met with Continued Health System Innovations.

Annual Review Assesses Medical Home's Impact on Cost and Quality
The Patient-Centered Primary Care Collaborative has issued its annual report. This review of multiple studies gives some indications of improvements in cost, utilization, population health, prevention, access to care and patient satisfaction among primary care practices that adopt the patient-centered medical home model. Read the report.



Beyond Job Applications: Strategies and Supports for Employment
February 17, 2015
6 p.m. to 8 p.m.
UC Davis MIND Institute Auditorium
The Center for Excellence in Developmental Disabilities and the Think Transition Workgroup
Learn more and register (PDF).

Long and Winding Road II: Multi-Topic Conference for Parents of an Adult Child with Developmental Disabilities
February 21, 2015
9 a.m. to 5 p.m.
Sobrato Center for Nonprofits, 1400 Parkmoor Ave., San Jose
Parents Helping Parents
Fee. Learn more and register.

Children's Hospice and Palliative Care Coalition's Annual Public Policy and Education Day
March 3, 2015
8 a.m. to 4 p.m.
California State Capitol
Children's Hospice and Palliative Care Coalition (CHPCC)
Learn more and register.



Strategizing and Crafting an Effective Advocacy Message
February 12, 2015
11 a.m. to 1:30 p.m. Pacific Time
National Consumer Voice for Quality Long-Term Care
First of a four-part webinar series on advocacy skills. Learn more and register.





Final Reminder—Last Days to Sign Up
February 15 is the deadline to enroll in health coverage under Covered California. See the site for details.

Let us know what's happening with your organization or family. E-mail Newsletter Editor Eileen Walsh at Eileen.Walsh@lpfch.org with your news or updates.