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.


June 22: Stakeholder Advisory Group to Consider Proposed CCS Redesign Models
A review of the Department of Health Care Services' (DHCS) proposed updates to the California Children's Services (CCS) program and discussion of its models for CCS redesign are on the agenda for the fourth meeting of the Redesign Stakeholder Advisory Board. The meeting is scheduled for Monday, June 22, from 10 a.m. until 4 p.m. at the Sheraton Grand Sacramento Hotel, 1230 J Street, Magnolia Room. See the DHCS announcement (PDF) for details about the public meeting and for contact information to send comments and questions. Meeting materials will be available in advance of the meeting on the DHCS CCS Redesign webpage and on the UCLA CCS Redesign webpage. Details about past and upcoming meetings also are posted on those sites.

Related Bills to Watch:
  • AB 187 would extend until January 1, 2017, the prohibition of CCS covered services being incorporated into a Medi-Cal managed care contract entered into after August 1, 1994.
  • SB 586 would require the Department of Health Care Services, no later than January 1, 2018, to contract with newly created Kids Integrated Delivery System (KIDS) networks for the purpose of coordinating and managing the provision of Medi-Cal and CCS program services to eligible children.


  In Their Own Words—Families of CSHCN Discuss Their Lives and Their Views of the Service System
Straight talk from 52 parents highlights the limitations of the current system of care for children with special health care needs and their families. A new report summarizes findings from 10 focus groups in which family members discussed what their lives are like, how well their families' needs are being met and how the health care system could be improved. The report describes four themes that emerged and offers dozens of direct heartfelt quotes from those who experience the system firsthand. Read about their views.

Two New Foundation Grants
Achieving high-quality care for children with special health care needs requires agreement on standards of care and application of those standards in practice and policy. Two grants awarded June 4 by the Lucile Packard Foundation for Children's Health focus on creating and disseminating standards that can be adopted nationally. One grant aims to identify key health outcomes that can be used to evaluate and improve the health of children with chronic, complex conditions. The second grant advances previous work on the development of national consensus standards for high-quality health care systems that serve CSHCN. Read more.

See also: Standards for Systems of Care for Children and Youth with Special Health Care Needs



Bills Pending to Establish ABLE Accounts in California
Two bills (SB 324 and AB 449) that will authorize Achieving a Better Life Experience (ABLE) savings accounts are making their way through the California legislature. The federal ABLE legislation allows 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. To qualify, individuals must have been diagnosed by age 26 with a disability that results in "marked and severe functional limitations." Each state must establish its own ABLE process.
  See also:
Webinar: Supported Decision-Making and the ABLE Act, "Achieving Better Life Experience"
Wednesday, June 17
10 a.m. to 11:30 a.m. Pacific Time
Sponsored by the National Resource Center for Supported Decision-Making
The beneficiary of an ABLE account is also the owner of the account. Experts will discuss who will make decisions about savings goals and disbursements from ABLE accounts and whether there are less restrictive options for account owners than guardianship and the removal of decision-making authority.
Register (scroll down).
Webinar to Focus on Medi-Cal Managed Care Performance
Tuesday, June 16
3 p.m. to 4 p.m. Pacific Time
Sponsored by the Department of Health Care Services
Stakeholders can comment and ask questions after a presentation of the Medi-Cal Managed Care Performance Dashboard, which indicates how well the system is performing.



Resilience, Coffee, and Community: How Parents Advocate for Children with Special Needs
Wednesday, June 17
12 p.m. to 1 p.m. Pacific Time
Sponsored by Family Voices of California
Sarah Taylor, MSW, PhD, will discuss advocating for her 8-year-old child with Fragile X Syndrome and the experiences of more than 300 parents who participated in a study about how they advocate for their own children and others at the personal, organizational, community and policy levels.

King v. Burwell: Supreme Court Case on the Affordable Care Act
Thursday, June 18
12 p.m. to 1 p.m. Pacific Time
Sponsored by Families USA
Discussion of the implications of the Supreme Court's upcoming decision on King v. Burwell.



Transportation Update: Where We've Gone and What We've Learned
The National Council on Disability, an independent federal agency, has released a report on the state of transportation for people with disabilities, 25 years after passage of the Americans with Disabilities Act. The report offers recommendations on how to close the gap in transportation access. Read more.



Adolescents Move to Adult Primary Care Later Than Recommended: Study
Youth with chronic and complex medical conditions transfer from pediatric to adult primary care later than recommended and experience consequent gaps in care, according to a study published in JAMA Pediatrics. More research is needed to assess health effects of the delayed timing of transfer; current recommendations say adolescents should transfer to adult-focused providers between ages 18 and 21. Read more.

Also see:  


Families Create Assessment Tool for Family-Centered Care
The concept of family-centered care is central in health services for children and youth with special health care needs, but there has been no tool with which to measure such care. The Family Voices National Center for Family/Professional Relationships, in collaboration with maternal and child health leaders, has conducted a family-led process to develop a tool for defining and measuring family-centered care. Read the study and background information.



Autism Society National Conference and Exposition
July 8-11, 2015
Colorado Convention Center, Denver
Three full days of workshops covering the entire autism spectrum and the whole lifespan.
Read more. 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.