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


Family-Centered Care and CSHCN: What Does the Literature Tell Us?
Numerous studies demonstrate the benefits of family-centered care for children with special health care needs (CSHCN), including fewer unmet health care needs and increased satisfaction with care. A new literature review presents findings from selected research on family-centered care. The review, conducted by the University of California, San Francisco, and commissioned by the Lucile Packard Foundation for Children's Health, examines what has been learned about the problems families face in having their needs met, and explores how high-quality family-centered care might be developed and implemented. Read the review.


Still Time to Nominate Members for CCS Redesign Stakeholder Advisory Board
The first stakeholder meeting regarding the redesign of California Children's Services will be scheduled for early December in Sacramento, according to officials at the UCLA Center for Health Policy Research, which is managing the redesign process. See the website for updates and details about how the process will work. Nominees are still being accepted for a 25-member stakeholder advisory board. Submit names to CHPR_CCS@em.ucla.edu.

Meeting November 14: Local CCS Stakeholders Continue Work on Model
A CCS Stakeholders Group that has met over the past year in Northern California will hold its last meeting in Oakland on November 14. There will be a discussion of the pros and cons of three new models that the group has identified as possible alternatives to the current CCS program. The group plans to submit its ideas to the State. The meeting, from 9 a.m. to 11 a.m., is open to the public, but an RSVP is requested. To attend, or to receive more information about this group, contact Will.Hickling@acgov.org. You also may participate through a call-in number, (888) 675-2535, access code 3620086.
Also see: Key Components of a System for Publicly Financed Care of CSHCN in California and
Standards for Systems of Care for Children and Youth with Special Health Care Needs



Autism Stakeholder Meeting Today; State Submits Medi-Cal Coverage Plan to Feds
A meeting is set for 3 p.m. to 5 p.m. today, October 16, regarding behavioral health treatment for children and youth with autism disorders. The meeting is at 1500 Capitol Avenue, Sacramento, in the Auditorium. If you are unable to attend, you may join via webinar by registering. For more information, see the web page or write to ABAinfo@dhcs.ca.gov. The Department of Health Care Services has submitted a state plan amendment (PDF) to the federal Centers for Medicare and Medicaid to add behavioral health treatment as a Medi-Cal benefit retroactive to July. Read details about the submitted plan in this California Healthline article.
Also see: Pentagon to delay autism spending cuts

October 22: Meeting to Discuss New Medi-Cal Children's Health Advisory Panel
With the passage of AB 357, as of January 1 the state's Advisory Panel for Medi-Cal Families will be renamed the Medi-Cal Children's Health Advisory Panel and will be part of the Department of Health Care Services. The panel will advise the Department on policies and issues that affect children covered by Medi-Cal. Previously, the Panel was the advisory body to the Healthy Families Program, which has been discontinued. The current panel will meet on October 22, and the agenda will include discussion of the scope and responsibilities of the new panel, panel membership and recruitment, and related issues. The meeting will be from noon to 3 p.m. at 1700 K Street, Sacramento. Call-in number: 1-888-397-5124 Code: 3612132. See the agenda and other information here. For inquires, e-mail medi-calforfamilies@dhcs.ca.gov.
Also see: It Takes A Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California



First Phase of 5Cs Collaborative Offers Recommendations from the Field
Ideas for how to improve local systems of care coordination for children with special health care needs are available from the California Community Care Coordination Collaborative (5Cs), which has been operating in seven counties across the state for the past 18 months. The Collaborative, which is funded by the Lucile Packard Foundation for Children’s Health, brings stakeholders together to address local issues while also working on system change. The first phase ended in September, but the coalitions continue to meet. A second phase will begin in January. View a slideshow to learn about the progress, products and recommendations from each coalition. For more information, or to obtain copies of the products, please contact holly.henry@lpfch.org.



Letters of Support Sought for Renewal of Children's Health Program
First Focus and other advocacy groups are requesting letters of support by Friday, October 17, for renewed federal funding for the Children's Health Insurance Program (CHIP), which provides coverage for children in families who earn too much to qualify for Medi-Cal. The program is set to expire in September 2015, and bills have been introduced to renew it through 2019. Opponents say that these children now can be covered under the Affordable Care Act, but advocates warn that some children will not qualify and that family out-of-pocket expenses may increase. Supporters also note that states are currently developing their 2016 budgets, so it is important to know whether CHIP funds will be forthcoming. In California, CHIP funding supports Medi-Cal. See the First Focus sign-on letter.



How Medical Practices Can Help Ease Transitions
Tools to assist medical practices that work with young adults transitioning from pediatric to adult care are available from Got Transition, a cooperative agreement between the federal Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. The Six Core Elements of Health Care Transition 2.0 offers three tool packages in English and Spanish.



Teaching Healthcare Teams to Coordinate Transitional Care Across Multiple Care Settings
Wednesday, October 22, 2014
9 a.m. to 10:30 a.m. Pacific Time
National Transitions of Care Coalition (NTOCC)
Jeffrey Levy, M.D., will discuss and demonstrate CareCases, a program that addresses specific challenges faced by healthcare professionals dealing with difficult Transitions of Care situations. The event will include discussion of NTOCC's Seven Essential Intervention Categories. Register.

Our Children Eat Differently: Raising a Child with a Feeding Tube
Wednesday, October 29, 2014
12 p.m. to 1 p.m. Pacific Time
Family Voices
Speakers include Dr. William Berquist, professor of pediatrics in gastroenterology at Lucile Packard Children's Hospital Stanford, and Michele Byrnes, a parent raising a child with a feeding tube. Register.

Managed Care and the Developmentally Disabled: Innovative Approaches to Care Coordination
Tuesday, November 4, 2014
10 a.m. to 11 a.m. Pacific Time
Health Management Associates
Shane Spotts of Health Management Associates, an expert on trends in managed care and people with developmental disabilities, will provide an overview of the most recent initiatives in care coordination, including an assessment of what's working and why. Register.

Tools & Resources from Family Voices to Help You in Your Work with Families of CYSHCN
Wednesday, November 5, 2014
12 p.m. to 1 p.m. Pacific Time
Family Voices
A walk through two Family Voices websites that assist family leaders and other professionals to support families raising children and youth with special health care needs, and a look at additional tools and resources available for families. Register.


A Conversation about Telehealth and Children with Special Health Care Needs
Family Voices
Also, the Children's Partnership continues to seek interviews with families of children with special health care needs who have experience with telehealth/telemedicine. They would like to discuss barriers to such care and ideas for how telehealth might be helpful to address their needs. Contact Jacob Vigil at jvigil@childrenspartnership.org or (310) 260-1220.

Care Coordination under the Medicaid Benefit for Children and Adolescents [EPSDT]
National Academy for State Health Policy





Clinical Study: Out-of-Home Placement for Children and Adolescents with Disabilities
The American Academy of Pediatrics has released a report outlining the options for out-of-home care for the relatively small group of children with complex chronic conditions who are unable to remain at home. The authors describe various settings and the care and services that are provided in them. They also discuss reasons families choose out-of-home placement for their children, barriers to placement, potential effects of this decision on family members, and the role of the pediatrician in making this decision. Read more.

Reproductive Guidance Lacking for Teens with Chronic Conditions
Many young adults living with chronic disease face challenges as they consider decisions about sexual activity, contraception and having children. According to a small study conducted at Children's Hospital Los Angeles, the adults in these young people's lives often are not initiating serious conversations about what kind of reproductive future they want, and how their condition might shape those possibilities. Read more.



Two Useful Tip Sheets:  


Respecting Choice, Creating Innovation, & Fulfilling Dreams: A Statewide Informational and Networking Conference on California's New Self-Determination Program
Friday & Saturday, November 7-8, 2014
8:30 a.m. to 5 p.m. Pacific Time
DoubleTree by Hilton Los Angeles—Westside
A conference for consumers and professionals involved with California’s Regional Centers. Learn more and register.



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