Posted February 2, 2017

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

Care Coordination

New Tool Helps Measure How Families Experience Integration of Care
Researchers at Boston Children’s Hospital, Harvard Medical School, and Harvard T.H. Chan School of Public Health have created a validated tool for measuring a family’s experience with the integration of health care and related services for children and youth with special health care needs. Read more and get access to the tool.

Network News

Zona Roberts—Grandmother of Disability Rights Movement Says ‘We Will Prevail’
Decades before the Americans with Disabilities Act, Zona Roberts battled for public education, health care, and independence for her son, Ed, after he contracted polio and became quadriplegic and dependent on an iron lung. Ed Roberts grew up to be the driving force behind the nation’s disability rights movement and also served as director of California’s Department of Rehabilitation. His legacy is celebrated every year on Ed Roberts Day, January 23, and his mother says he would be ready today to do battle again. Read her story.

Also see: Google Doodle Honors Pioneering Disability Activist Ed Roberts

California Children's Services

Key Points from CCS Advisory Group Meeting
CRISS, the Children’s Regional Integrated Service System, has prepared a document noting the major points that emerged from the CCS Advisory Group meeting on January 11, including delay of implementation of moving some children into managed care until July 1, 2018. Read the details (PDF).

Feds Outline Required Benefits for Children Insured Under Managed Care
A new informational bulletin (PDF) from the Centers for Medicare & Medicaid Services (CMS) explains services that must be included under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit for children insured through managed care. The bulletin notes that states should include enough specificity in managed care plan contracts to avoid confusion about what the EPSDT benefit includes and what entity is responsible for delivering it, and sets forth three specific ways that states can ensure such specificity. 

California Policy

Medi-Cal Children’s Health Advisory Panel Seeks Member
The Department of Health Care Services (DHCS) is recruiting a parent or legal guardian of a Medi-Cal enrollee to serve on the Medi-Cal Children’s Health Advisory Panel (MCHAP). The Medi-Cal enrollee must be under 21, and have received mental health services under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program within the past six months. Send a Statement of Interest (PDF) and resume to by February 15. MCHAP advises DHCS on policy and operational issues that affect children in Medi-Cal.

Department of Health Care Services Stakeholder Advisory Committee to Meet
Thursday, February 16
10 a.m. to 3:30 p.m. Pacific Time
1414 K Street, First Floor, Sacramento
Dial-in: 888-603-7038; Passcode: 6415291
The Stakeholder Advisory Committee provides the Department of Health Care Services (DHCS) with feedback on health care policy issues that affect the department. View meeting materials and information from prior meetings on the DHCS website, including a summary (PDF) of the October 24, 2016, meeting.

Family Engagement

Regional Center Clients: Add Your Voice Regarding Therapy Services
Disability Rights California (DRC) is investigating the experiences of Regional Center families in obtaining therapy services for children through Medi-Cal or private insurance. Families can download and submit the survey (Word).

Take the Survey: Family and Individual Needs for Disability Supports
The Arc, in collaboration with the Research and Training Center on Community Living at the University of Minnesota, has launched the 2017 Family & Individual Needs for Disability Supports Survey. Individuals over 18 who provide primary unpaid and frequent support to a person with an intellectual or developmental disability are invited to complete the anonymous survey, which will be used to inform policymakers, researchers, and service providers about how best to support caregivers.

National Policy

Opinion: ‘My Daughter Is Alive Because of Medicaid’
Marta Conner’s daughter, Caroline, was diagnosed with Rett Syndrome at 17 months. In a blog post for the Georgetown Center for Children & Families, Marta explains how Medicaid plays an essential role in managing Caroline’s extremely complex needs, and notes that babies are born every day to families who never expected to need Medicaid. She writes that uncertainty about the program’s future compels her to speak. Read her essay.

Also see

 In Brief


  • Navigating School – The Arc@School website helps students with disabilities and their families with special education advocacy.
  • CalABLE Fact Sheet (PDF) about a program that allows people with disabilities to establish a tax-advantaged savings account without losing public benefits.
  • Catalyst Center worksheets provide overviews of Title V, Medicaid, and the Children’s Health Insurance Program, and can be customized by state.
  • Minority Health Toolkit (PDF) offers resources aimed at improving health care for minorities and at-risk populations, including people with disabilities.
  • Zika Coalition formed by March of Dimes.

Fellowship Opportunity

Fellowship in Digital Media, Advocacy for Storytellers with Disabilities
Individuals with disabilities are invited to apply for a six-month fellowship in digital media storytelling that offers the opportunity to develop skills for possible careers in media production, journalism, online advocacy, or digital design. Fellows will write and film two brief videos with support from a production team. Fellows also will digitally attend workshops on the history of the disability rights movement, current policy issues, and the role of media in the movement. The fellowship is managed by Rooted in Rights and the American Association of People with Disabilities. Participation is a part-time commitment and is conducted remotely. Applications due March 15. Learn more and apply.


Lobbying and Advocacy 101: Legal Tips for Nonprofit/Disability Advocates
Thursday, February 9
11 a.m. to 12 p.m. Pacific Time
Host: National Association of Area Agencies on Aging
Read more and register.

Patient Advisory Councils from Scratch: Putting Together the Nuts and Bolts
Thursday, February 16
12 to 1 p.m. Pacific Time
Host: Center for Care Innovations and UCSF Center for Excellence in Primary Care
Read more and register.

Relationship-Centered Care: A Healthcare Provider's Guide to Patient Engagement, Shared Decision Making, and Improved Outcomes
Thursday, February 16
10 to 11 a.m. Pacific Time
Host: Health Management Associates
Registration required.

Protecting Health Care, Medicaid, SSI and More for People with Disabilities
Thursday, February 23
12:30 to 1 p.m. Pacific Time
Host: The Arc
Due to high demand, webinar registration is full. Complete the registration form to be notified when an additional session is scheduled


15th Annual Family Voices of California Health Summit & Legislative Day
February 27-28, 2017
Sponsor: Family Voices of California
Read more and register.

Changes and Choices: Leading the Charge (Developmental Disabilities)
Thursday, March 2
8:30 a.m. to 4:30 p.m. Pacific Time
California Endowment, Los Angeles
Host: Inclusion Institute and the State Council on Developmental Disabilities, Los Angeles Office
Experts will discuss the many changes taking place in the developmental services system. Topics include self-determination, self-advocacy, and the Home and Community-Based Services Rule (HCBS).
Fee. Registration must be received by February 17. Download the registration flyer in English (PDF) and en español (PDF).

In the News

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Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at with your news or updates. Or contact newsletter editor: Eileen Walsh at

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