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


TOMORROW: Redesign Stakeholder Advisory Board to Meet in Sacramento
Formation of technical workgroups will be the focus of the second meeting of the CCS Redesign Stakeholder Advisory Board (RSAB) scheduled for tomorrow, January 23, from 10 a.m. to 4 p.m. at the California Lottery, 700 North 10th Street, Sacramento. The full agenda is posted on the redesign website along with additional materials regarding past and upcoming meetings. A "listen-only" call-in line will be available at (888) 921-8686; Meeting ID Number: 103-120-2607. A list of advisory board members (PDF) also is available. Write to CHPR_CCS@em.ucla.edu for more information.

For suggested guiding principles to inform the redesign discussion, see Key Components of a System for Publicly Financed Care for CSHCN in California, an issue brief by Ed Schor, MD, of the Lucile Packard Foundation for Children's Health, who is a member of the RSAB. Dr. Schor presented the brief January 20 to members of the Children's Regional Integrated Service System (CRISS), which promotes an improved service delivery system for children with special health care needs.

Update on CCS Five-Year Needs Assessment Process
CCS is required to conduct a needs assessment every five years to identify priorities for improving services for children with special health care needs. The Family Health Outcomes Project at UCSF, which is managing the assessment process, conducted a stakeholder meeting on January 6. See the meeting materials, including priorities and the criteria for prioritization.



Supporting Self-Management Skills for Families
Self-management skills, which assist families in caring for their children with special health care needs, are the focus of two grants awarded by the Lucile Packard Foundation for Children's Health. On January 14, Health Affairs featured a blog post on the topic by Ed Schor, MD, senior vice president at the foundation, highlighting the goals of these grants. Read his post.


No Overtime Pay for Home Health Workers
California officials announced that the state will not provide overtime pay for home health workers after a federal judge overturned a U.S. Department of Labor rule that would have required minimum wage and overtime pay. Home health worker unions say they will continue to press for the payments. Read more.
See also: Paid Sick Leave for Home Health Workers Returns to Legislature
Home Care Overtime Decision Leaves $200 Million Question Mark in State Budget

Dental Care: State Budget Disappoints Children's Advocates
Despite a recent critical report from the state's own auditor, Governor Brown's budget proposal does not address shortcomings in providing dental care for California children on Medi-Cal, advocates say. The California Dental Association, The Children's Partnership and other organizations plan to pursue changes to the budget, according to California Healthline. Children with special health care needs, many of whom are covered by Medi-Cal, frequently require special dental services, and they are more likely to have unmet dental care needs than other children.
See also: Filling a Special Need at the Dentist
Dental Care Access for Children in California: Institutionalized Inequality
Department of Health Care Services: Weaknesses in Its Medi-Cal Dental Program Limit Children's Access to Dental Care (PDF)



Upcoming Changes to Medicaid's Home & Community Based Services (HCBS) Regulations
January 29, 2015
10 a.m. to 11 a.m. Pacific Time
Children's Hospital Los Angeles, USC University Center for Excellence in Developmental Disabilities
Read more and register.

Schools' Systems of Health Care Services for Children with Special Health Care Needs: What Happens During the School Day?
February 4, 2015
12 p.m. to 1 p.m. Pacific Time
Family Voices California
Dr. Dian Baker, a pediatric nurse practitioner and professor at Sacramento State University, will discuss her findings from a study about school nursing care for California's children with special health care needs. Approximately 50% of California's schools do not provide nursing services, yet school nurses are the primary source of health care in schools for children with special needs. Dr. Baker will offer suggestions for parents regarding legal requirements and advocacy for safe school health services. Her study was supported by the Lucile Packard Foundation for Children's Health. Learn more and register.
See Fact Sheets on Nursing in California Schools



ACA Enrollment Deadline Coming Up February 15—Fact Sheets Provide Guidance for CSHCN
Open enrollment for insurance coverage under Covered California, including Medi-Cal, ends February 15. See the state website for information on how to enroll or make changes. In addition, the National Center for Medical Home Improvement and the Catalyst Center have created a series of four easy-to-understand fact sheets that explain specific provisions of the Affordable Care Act that benefit children and youth with special health care needs. Topics include Concurrent Care for Children, Habilitative Services, Health Home Programs and Coordinated Care, and Health Insurance Marketplace and Medicaid Coverage for Children with Disabilities. Read the fact sheets. Also, the National Disability Navigator has created a fact sheet for professionals to help them guide families of children with special needs in making coverage choices.



Cost Savings for Children with Medical Complexity?
Medicaid spending on hospital and emergency room costs for children with medically complex conditions outpaces spending on primary and community care, according to research published in Health Affairs. The authors discuss how cost savings might be achieved through potential reductions in hospital and emergency department use, and show how the savings could underwrite investments in outpatient and community care. Read more.

Potential Adverse Drug Combinations in Pediatric Hospital Patients
In a study of nearly 500,000 children and teenagers who were hospitalized in 2011, researchers found that nearly half were given combinations of drugs that could have potential interactions leading to adverse outcomes such as sedation, bleeding and breathing issues. Painkillers and antibiotics appeared to be the most commonly involved drugs, according to the study in Pediatrics. Read more.



Helping Families Discuss End of Life with Children
Advice for parents on how to talk to children with life-limiting illnesses now is available through The Conversation Project. The Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child provides information and advice from parents and palliative care specialists that can help parents navigate the approach to a conversation about the end of life, based on the personality and cognitive level of the child. See the kit (PDF).



Rally for System Upgrade—Sustainability for Developmental Disabilities Services and Budget
January 23, 2015
12 p.m. to 1:30 p.m.
Civic Center Plaza, San Francisco
Learn more (PDF).

The Law and Ethics of Those with Special Needs: Fair Is What Fair Is
February 18-20, 2015
The University of Arizona – College of Medicine Phoenix
Phoenix, Arizona
See agenda and register.

Youth Leadership Forum for Students with Disabilities—Apply by February 27
July 27-31, 2015
California high school juniors and seniors with disabilities may apply now for this no-cost five-day leadership program. See the website for information and instructions on how to apply. Applications are due by February 27.

8th Annual Developmental Disabilities Public Policy Conference
March 8-10, 2015
Holiday Inn Capitol Plaza Hotel, 300 J Street, Sacramento
The Arc and UCP California Collaboration
Learn more.

13th Annual Family Voices of California Health Summit and Legislative Day
March 16-17, 2015
Holiday Inn Capitol Plaza, 300 J Street, Sacramento
The statewide Health Summit and Legislative Day brings together families, youth, providers, policymakers, advocates, state agencies, insurers and other stakeholders to identify and address the health challenges of children and youth with special health care needs. Learn more.



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.