A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.
Please forward the newsletter and encourage your colleagues and constituents to join the Network.


Revised Members List for CCS Redesign Stakeholder Advisory Board
The membership list (PDF) for the CCS Redesign Advisory Board (RSAB) has been updated. The next meeting is scheduled for May 29 in Sacramento. Check the website for the agenda and updates on the RSAB and the meetings of its technical workgroups.

Meetings Scheduled for Title V Needs Assessment Workgroups
California is required to conduct a needs assessment every five years to identify priorities for improving children's services funded under Title V, which includes CCS. The Family Health Outcomes Project at UCSF is managing the process for the state. Workgroups on Organization of Services, Transition, Medical Home and Improve Access are scheduled in the next week. See the calendar.



Fact Sheet: Key Elements of Care Coordination
In a 2012 Advocacy Network survey, families of children with special health care needs identified care coordination as their top priority. A new fact sheet from Holly Henry, PhD, manager of the California Community Care Coordination Collaborative (5Cs), provides a concise summary of the elements necessary for a quality system of care coordination. Read the fact sheet.



Children's Health Insurance Program, Centers That Serve CSHCN a Step Closer to Two-Year Funding Extension
A two-year extension of funding for Family-to-Family Health Information Centers, which serve families of children with special health care needs, is included in long-sought legislation that was passed by the US Senate on April 14. The bill also extends the Children's Health Insurance Program (CHIP) funding for two years, along with the Maternal, Infant and Early Childhood Home Visiting program. President Obama has said he will sign the legislation, which is part of a broader "doc fix" bill to repair a longstanding flaw in how payments to physicians who accept Medicare are calculated. Read more.

See also: State Urged to Spend New CHIP Money Only on Children's Health Care



Key Upcoming Meetings
  • Medi-Cal Children's Health Advisory Panel – Tuesday, April 28, from 2 to 3 p.m. at the Department of Health Care Services, 1501 Capitol Avenue, Ste. 6001, First Floor, Pine Room, Sacramento. Conference Call Line: 866-704-1470; Participant Passcode: 3856049

    The Department of Health Care Services will continue the ongoing discussion about network adequacy standards in Medi-Cal managed care health plans, and address questions raised at the March 18 meeting. This session is in addition to the upcoming May 22 meeting. For questions or comments, email MCHAP@dhcs.ca.gov.
    April 28 Meeting Agenda (PDF)
    Network Assessments and Monitoring Presentation (PDF)
    Advisory Panel Website

    See also: Lawmakers Effusive Over Medi-Cal Rate
  • Autism Stakeholder Meeting – Thursday, April 23, from 9:30 to 11:30 a.m. Webinar only—register on the webpage. Write to ABAinfo@dhcs.ca.gov for information.
State Bills Pending on Tax-Free Savings Accounts for People with Disabilities
In December, the Achieving a Better Life Experience (ABLE) act became federal law, allowing individuals with disabilities to establish tax-free savings accounts in which they can deposit up to $14,000 annually, up to a total of $100,000, without jeopardizing eligibility for government benefits and Medicaid (Medi-Cal in California). Each state is required to enact its own conforming legislation, and California now has two bills pending. See status of SB 324 and AB 449.

Members Sought for In-Home Supportive Services Advisory Committee
California is establishing a new Stakeholder Advisory Committee to provide advice and recommendations on its In-Home Supportive Services (IHSS) program. At least half of the committee's 13 members must be consumers. The committee will advise the IHSS Statewide Authority and the Departments of Social Services and Health Care Services. Applications must be postmarked or submitted electronically by May 1. Read more and see application.

Related: Feds Warn Governors to Prepare for Minimum Wage, Overtime for In-Home Supportive Services
In January, California officials put minimum wage and overtime provisions for home health workers on hold after a federal judge overturned a U.S. Department of Labor rule that would have required both. The Labor Department filed an appeal that is scheduled to be decided some time after early May. On March 20, the U.S. Labor Secretary sent a letter (PDF) to Governors advising them to factor provisions for minimum wage and overtime into their upcoming budgets. Read more.



Transition Ideas from Around the Country
The March/April edition of Pulse, the newsletter of the Association of Maternal & Child Health Programs, is devoted to Children with Special Health Care Needs and Transition. Read the newsletter.

Federal Agencies Joining Forces to Improve Coordination of Transition Services
The Federal Partners in Transition Workgroup has released its five-year strategy to improve interagency policy and service coordination to support all youth, including youth with disabilities, in successfully transitioning from school to adulthood. Goals include better access to health care and work experiences; enhanced self-determination and individual planning; connection to programs and services; development of leadership and advocacy skills; and involvement with family and other caring adults. Read the plan.

Webinar Series for Providers: Transition of Patients with Special Health Care Needs to Adult Medical Care
Seven-Part Series – Sixth segment, April 22
10 a.m. Pacific Time
Topic: Social Determinants of Transition – Employment, Housing, Life Skills, Building Assets
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. Learn more and register.



According to kidsdata.org, 11.3 percent of California children were enrolled in special education in the 2013-2014 school year, with county figures ranging from 6 percent to 18 percent. See the data.



Encouraging End-of-Life Conversations
The April edition of Complex Child is devoted to Preparing for End-of-Life, including discussions about palliative care, preservation of memories, financial planning and more. Additionally, the New York Times recently published an article on the national movement to have end-of-life discussions with teenagers and young adults, giving them a voice in the difficult decisions that must be made: Teenagers Face Early Death, on Their Terms.

Developmental Screenings
Children Now and the First Five Association of California have produced an infographic that highlights how California lags in timely developmental screenings. It notes that two in five California parents with children under age 6 report having concerns about their child's physical, behavioral, or social development.



Status Update on the Lanterman Coalition 10% Initiative
Wednesday, April 22
6:30 to 7:30 p.m. Pacific Time
Lanterman Coalition
Tony Anderson, executive director of The ARC of California, will discuss the status of the Lanterman Coalition efforts to secure an across the board 10 percent increase in rates for agencies that provide services to persons with developmental disabilities.
Read more and register.

Leadership Essentials to Integrate and Accelerate Patient and Family Centered Care
Friday, April 24
12 to 1 p.m. Pacific Time
Patient Family Centered Care Partners
Presented by Co-founders of Aefina Partners, Kris White, RN, MBA, and Barbara Balik, RN, EdD.
Register. Fee.



Act Early Network Virtual Networking Event
Thursday, April 23
12 to 1 p.m. Pacific Time
Association of University Centers on Disabilities
Experts will discuss effective program methods and strategies that have improved the early identification of autism and other developmental disabilities.
Learn more and register.

Advancing Equity in Education & Health Care
Friday, May 1
San Diego
California School-Based Health Alliance
Speakers, workshops, exhibits and networking for health care providers, educators and children's health supporters.
Learn more and register. Fee.

See also: Health Services in Schools Conference: From Cost-Effectiveness Studies to Distributional Justice

California Mental Health Advocates for Children and Youth Annual Conference (CMHACY)
May 13-15
Asilomar Conference Grounds, Pacific Grove, CA
Founded in 1980, CMHACY is dedicated to advancing children's mental health services in California.
Learn more and register. Fee.



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.