Posted September 21, 2017

News, policy updates, resources, events, and advocacy opportunities

California Children's Services

CCS Advisory Group to Meet
Wednesday, October 4
10 a.m. to 3 p.m. Pacific Time
1700 K Street, Sacramento - First Floor Conference Room
Dial-in: (888) 989-6488; Passcode (listen only): 1945234
The Advisory Group provides family and provider viewpoints to the Department of Health Care Services as it prepares to implement the transfer of CCS children to Medi-Cal managed care. See website for meeting details.

Tool Aims to Improve Medicaid Managed Care Contract Language for CSHCN
A new tool (PDF) focused on strengthening Medicaid managed care for children and youth with special health care needs is available from the Association of Maternal & Child Health Programs and the National Academy for State Health Policy. Created to be used alongside Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, this tool provides examples of how four states (Texas, Virginia, Michigan, and Maryland) are incorporating specific provisions and requirements into their managed care contracts to better serve this population of children. Children in 21 California counties are scheduled to move from California Children’s Services to Medi-Cal managed care beginning in 2018. The research was supported by the Lucile Packard Foundation for Children’s Health.

Medical Complexity

Designing a High-Performing Health Care System for Patients with Complex Needs
An international study commissioned by the Commonwealth Fund aimed to outline the prerequisites of a high-performing health care system for "high-need, high-cost" patients and to identify promising innovations in health care delivery for meeting needs of these patients. Although the study focused on adults with complex conditions, the report’s “Top Ten Recommendations for Policymakers” have applicability for children with complex conditions. Read the report.

National Policy

Advocates Urge Action to Oppose Devastating Renewed Health Care Bill
The Trump White House and some senators are pressing for fast-track passage by September 30 of a revived health care bill called the Cassidy-Graham plan, which would repeal the Affordable Care Act, potentially significantly reduce or eliminate coverage for people with complex medical conditions by cutting Medicaid, and undermine support for community care, among other provisions. Advocates are urging constituents to contact their senators. A Senate Finance Committee hearing is scheduled for Monday at 11 a.m. Pacific Time. Comments can be submitted to GCHcomments [at]

Also see:

Children at Risk of Losing Coverage If Children’s Health Insurance Program Funding Not Renewed by Congress
Although a bipartisan agreement to extend funding for the Children’s Health Insurance Program (CHIP) was announced September 12, a vote is not certain before funding ends September 30. CHIP covers almost 9 million children whose families earn too much to qualify for Medicaid. Most states will run out of funds in the next few years if federal funding is not renewed.

Also see: Extending the Children’s Health Insurance Program: High Stakes for Families and States – The Commonwealth Fund

California Policy

New Law Affects Regional Center Services, Operations
On September 15, the Department of Developmental Services sent a letter to all Regional Center executive directors and board presidents outlining multiple changes to service provision and operations that are required under Assembly Bill 107, which the Governor has signed. Of particular note, as of January 1, 2018, current limits on the purchase of respite services will no longer apply. Read the details (PDF).

Family Engagement

Webinar: Reducing the Obstacles—Family Engagement in Shaping Health Insurance Policy and Programs
Thursday, September 28
11 a.m. to 12 p.m. Pacific Time
Sponsors: Association of State and Territorial Health Officials, in partnership with Family Voices
Speakers will highlight state efforts to engage families in shaping health insurance policy and programs. Presentations from Family Voices organizations in Delaware, Idaho, and Oklahoma.
Read more and register.

Register for Family Voices National Leadership Conference
Family Voices' 2017 leadership conference, with the theme "Weaving a Tapestry of Strength through Diversity," will be held in November 15-17 in Washington, DC. The conference brings together Family-to-Family Health Information Centers, Family Voices State Affiliate Organizations, other family-led organizations and family leaders, and professional stakeholders. Read more and register.


Report Examines Need for Paid Family, Medical Leave for People with Disabilities and Their Families
The Arc and the Georgetown Center on Poverty and Inequality released a paper outlining why paid family and medical leave is so critical for the economic security and stability of people with disabilities and their families. Read more.


  • Courageous Parents Network is a website created by families, for families, to support and strengthen them as they care for very sick children.


Policing People with Disabilities: A Call for Procedural Justice
Thursday, September 28
10 a.m. to 12 p.m. Pacific Time
Hosts: The Arc and the National Center on Criminal Justice & Disability
This webinar is the last in a series that educates law enforcement and others about the various intersections that play into discrimination and violence toward people with intellectual and developmental disabilities within the criminal justice system.
Read more and register.

Internship Opportunity

The American Association of People with Disabilities offers summer internships that place college students, graduate students, law students, and recent graduates with all types of disabilities in internships with Congressional offices, federal agencies, non-profits, and for-profit organizations in the Washington, DC area. The deadline to apply for summer 2018 is November 6. Read more and apply.

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email newsletter editor Eileen Walsh at eileen.walsh [at] with your news or updates.