Posted on September 17, 2015

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.


Bill to Delay CCS Transition to Managed Care on Governor's Desk
Both houses of the California legislature have approved AB 187 (Bonta), the bill to extend the carve-out of California Children's Services (CCS) from Medi-Cal managed care until January 2017. The bill is now with Governor Brown, who has until October 11 to sign or veto the bill, or allow it to become law without his signature. Read more.

New Website for CCS Advisory Group; Technical Workgroup to Meet September 29
The Department of Health Care Services has launched a new website to update the public regarding the CCS redesign process. The site replaces the Redesign Stakeholder Advisory Board (RSAB) site. It lists upcoming meetings and provides background on the Department's proposed Whole Child Model (PDF) for the redesign. For more information, email the CCS Redesign Team.

A webinar for the new Data & Quality Measures Technical Workgroup, one of three workgroups established to inform the CCS redesign process, is scheduled for September 29 from 1:30 p.m. to 3 p.m. Meeting agenda and materials will be available on the new website. Register here.


How Family Advisory Councils Can Improve Care
When families feel that they are partners with their children's health care providers, the quality of care improves and parents' fears and anxieties are reduced. One avenue for ensuring that families have a strong voice regarding their children's care is establishing Family Advisory Councils (FACs) in health care organizations. To encourage development of effective FACs, the Lucile Packard Foundation for Children's Health funded the creation of the statewide California Patient & Family Centered Care Network. Parents and providers representing 15 pediatric hospitals and clinics took part in the network and shared their experiences with FACs. See the report and a step-by-step guide to establishing effective FACs.

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

 Webinar Series Focuses on Successful Hospital Discharge for Children
The first lecture from the series The Road to Hospital Discharge Success for Children with Medical Complexity is available online. Dr. Marianne Weiss, professor of women's health at Marquette University and an authority on the transition from hospital to home, discusses "Discharge Readiness of Hospitalized Children and their Families." The series, hosted by Dr. Jay Berry, is co-sponsored by Boston Children's Hospital with support from the Lucile Packard Foundation for Children's Health. Listen to the webinar and read more about the lecture series.


No Action on Special Session Funding Bills for Medi-Cal and Developmental Services
Although two bills introduced in a special session on health care spending did not pass out of the 2015 regular legislative session, legislators may continue to address these bills through the fall and into 2016.

  • Senate Bill X2-14 (Hernandez), introduced September 9, proposes a revised managed care organization tax and increased taxes on cigarettes to support Medi-Cal, developmental services, and In-Home Supportive Services. Failure to obtain federal approval on a revised tax proposal on managed care organizations before the current tax expires in June 2016 would result in a loss of $1.1 billion in federal matching funds for the Medi-Cal program. Read more.
  • Assembly Bill X2-18 (Bonilla) would impose a 5-cent tax on cocktails purchased in bars and restaurants. Revenues would fund developmental services.

Bills to Establish ABLE Accounts on Governor's Desk
SB 324 and AB 449, bills authorizing Achieving a Better Life Experience (ABLE) savings accounts in California, are on Governor Brown's desk. The federal ABLE Act allows individuals with disabilities to establish tax-free savings accounts without jeopardizing eligibility for government benefits. 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.


Guidance Issued to Include Children with Special Needs in Preschool
The US Departments of Education and Health and Human Services together have released a policy statement (PDF) pushing states to ensure that young children with disabilities have access to high-quality early childhood programs. The guidance asserts that children with special needs should attend such programs, with individualized support, alongside typically developing children. Read more.

Rule Proposed to Prevent Disability Discrimination in Health Care
The US Department of Health and Human Services has introduced a rule to implement Section 1557 of the Affordable Care Act, further protecting people with disabilities from discrimination in health care provision and insurance coverage. Public comments on the proposed rule are due by November 9. Read more.

Bill Would Enable Individuals with Disabilities to Create Their Own Trusts
The Special Needs Trust Fairness Act would allow people with disabilities to establish special needs trusts without relying on a parent, grandparent, legal guardian, or court. The Senate passed the bill unanimously on September 9. Like the savings accounts to be allowed under the ABLE Act, money saved in these special needs trusts would not compromise receipt of government benefits such as Medicaid or Supplemental Security Income. Read more.


Parents Sought to Respond to Survey on Family Supports Needed for CSHCN in California
Researchers from the UCLA Center for Health Policy Research and Mattel Children's Hospital are conducting a research study to understand the gap between the services that families of children with special health care needs require and what they actually receive. Primary caregivers of a child under 18 living in California who has a health problem or condition that may affect his/her physical health, behavior, learning, growth, or physical development, are invited to participate in this one-time, 25-minute survey in English or Spanish. Respondents will receive a $20 gift card, and all responses will be anonymous. The research is supported by the Lucile Packard Foundation for Children's Health. See more information in English (PDF) and Spanish (PDF).


Healthy Transitions: A Pathway to Employment for Youth with Chronic Health Conditions & Other Disabilities
Young adults with chronic health conditions experience an employment rate consistently below the national average for adults of similar age without such conditions. The US Department of Labor’s Office of Disability Employment Policy conducted a study to explore the effects of disability on employment outcomes, access to health care, and transition to adulthood. The resulting report identifies elements of the Affordable Care Act that may transform how young adults with disabilities transition from pediatric to adult health care and encourage greater workforce participation. Read more (PDF).




Education Policy & Politics: What's at Stake for Students with Disabilities
Monday, September 21
1 p.m. to 2 p.m. Pacific Time
Sponsored by the Virginia Commonwealth University School of Education
Overview of federal policy issues that affect students with disabilities, their families, and their educators.
Learn more (PDF) and register.

Post-Secondary Education for People with Intellectual Disabilities
Thursday, September 24
10 a.m. to 11 a.m. Pacific Time
Sponsored by Children's Hospital of Los Angeles, USC University Center for Excellence in Developmental Disabilities
Impact of the Higher Education Opportunity Act and Student Success Support Program on students with intellectual disabilities.


CaPROMISE: A Study on Increasing Self-Sufficiency of Students with Disabilities on SSI, and Their Families
Sponsored by Children's Hospital of Los Angeles, USC University Center for Excellence in Developmental Disabilities
See the video recording and slides (PDF).


Foster Youth with Disabilities: How to Be an Advocate & Ally in Getting Educational Needs Met
Monday, September 21
12 p.m. to 2 p.m. Pacific Time
Berkeley, CA
Sponsored by the Alameda County Foster Youth Alliance
This workshop with the Disability Rights Education & Defense Fund will cover the education rights of foster youth and students with disabilities, and how to advocate for support in school.

2015 Patient Family Centered Care Conference
Monday, October 26
Los Angeles, CA
Sponsored by Patient Family Centered Care Partners
The conference will offer resources and strategies for engaging patients and families to improve quality, safety, and overall experience of health care. Health care delivery professionals and staff, patients, and family members are encouraged to attend.
Fee. Learn more and register.


Let us know what's happening with your organization or family. E-mail Program Associate Danielle DeCosta at with your news or updates. Newsletter Editor: Eileen Walsh

To see past issues, visit the Network Newsletter Archive.