Posted March 17, 2016

A newsletter to inform advocates for children with special health care needs 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.


Legislative Action Could Slow CCS Redesign
After hearing testimony from families and care providers, the Assembly Budget Subcommittee on Health and Human Services on March 14 unanimously rejected a bill regarding the state's plan to move some children covered by California Children's Services into managed care. The "trailer bill" language (PDF) had been added to the Governor's proposed budget, but the subcommittee indicated that the issue should be handled through the policy process. If the Senate Budget Subcommittee concurs, the managed care plan could be delayed. California Healthline reports.

Former San Francisco CCS Medical Director Weighs Pros, Cons of Proposed Redesign
Dr. David Hayashida served as the medical director of San Francisco City and County's California Children's Services (CCS) office between 1995 and 2016. He shares his reflections on the 20 years he spent serving the CSHCN community, and offers his thoughts on the CCS program going forward. Read the Q&A.

CCS Redesign Advisory Group to Meet April 6
The CCS Redesign Advisory Group, which provides the opportunity for interested parties to voice their opinions on the state's proposed transfer of some CCS children to managed care, will meet Wednesday, April 6. Public comment will be taken at the end of the meeting.
10 a.m. to 3 p.m.
1400 J Street, Room 204, Sacramento
Dial-in: (888) 921-8686
Passcode: 961-640-6431
Agenda and meeting materials will be posted on the Advisory Group website.


Senate Select Committee Hearing to Highlight Interagency Care Coordination
Coordination among state systems that serve children with special needs will be the topic of the upcoming second informational hearing of the Senate Select Committee on Children with Special Needs. The committee aims to improve care coordination among the physical health, mental health, developmental disability, and education systems. Network members Derek and Wendy Longwell are featured in a short video about the goals of the committee, along with Network member Allison Gray of Family Voices and Senator Richard Pan, MD, chair of the committee.
Tuesday, April 5
2 to 4 p.m.
Room 2040 of the Capitol Building, Sacramento
Agenda and live streaming information will be posted on the Committee website.

In Brief

  • The next Behavioral Health Treatment Stakeholder Webinar is scheduled for Thursday, March 24, from 1 to 2:30 p.m. State officials will provide updates on the implementation of BHT services, the transition of the services from Regional Centers to Managed Care Plans, and other issues. See the BHT webpage and register for the webinar.
    See also: A letter (PDF) from the US Office of Personnel Management indicates that in 2017 all Federal Employee Health Benefits Carriers will be required to cover Applied Behavioral Analysis therapy for children with autism.
  • Governor Brown has appointed Nancy Bargmann director of the Department of Developmental Services.
  • California Healthline reports on plans to close the state's last three large developmental centers, in Sonoma, Costa Mesa, and Porterville
  • Children Now has issued a fact sheet (PDF) outlining reasons to support Assembly Bill 1644, which establishes new programs to support early mental health intervention.



Telehealth Grants Available for Rural, Underserved Communities
Applications are open for the Telehealth Network Grant Program, whose goal is demonstrating how telehealth programs and networks can improve access to quality health care services in rural and underserved communities. Applications are especially encouraged from networks that will demonstrate how telehealth can expand access to, coordinate, and improve the quality of health care services through School-Based Health Centers, especially those which may also serve the broader community. Deadline: April 8.

2016 Telehealth Summit: Connect, Collaborate, Communicate
April 17-19
Kona Kai Resort and Spa, San Diego
Speakers include James Marcin, MD, of UC Davis, speaking on how telehealth technologies can help address disparities in access, safety, and quality of care, particularly related to acutely ill and injured children.
Read more and register. Fee.


Positive Outcomes as ‘Community Care Teams’ Jointly Address Medical, Social Needs
Recognition is growing that health outcomes are linked to social factors such as income, employment status, and access to food and housing. Read how three states have developed interdisciplinary community care teams that address medical issues and social determinants of health, resulting in improvement in health outcomes and lower costs.


Family Voices: 2016 Family Leadership Meeting: Expanding Our Reach, Impacting the Future
March 30-31
Rockville, MD
Sponsored by the Family Voices National Center for Family/Professional Partnerships and the Maternal and Child Health Bureau
Family leaders from every state attend to learn innovative strategies and best practices, and to strengthen their collective impact on systems serving children and youth with special health care needs.
Find more information and register to attend.


Dating Violence Prevalent Among Teens with Disabilities
More than one in five adolescents with disabilities report experiencing violence (including physical abuse, rape, or sexual assault from a stranger or partner), which is more than twice the rate for youth without disabilities. The US Department of Health and Human Services' Administration on Community Living notes that teens with disabilities often are left out of programs intended to prevent dating violence or support its victims. Find resources to help make programs and services for dating and domestic violence survivors more inclusive.

Essay: Public Health and Rare Diseases: Oxymoron No More
Researchers from the National Center on Birth Defects and Developmental Disabilities make the case for a more robust public health approach to the nearly 7,000 rare diseases that affect about 25 million people in the United States. Rare diseases, such as spina bifida, Huntington disease, fragile X syndrome, and Duchenne muscular dystrophy, present challenges for public health programs because of the difficulty of diagnosing them and the lack of longitudinal data. The authors recommend guidelines for a comprehensive public health approach that could reduce the impact of disease on patients and their families and improve the quality of their lives and life expectancy.

Related Survey: Including People with Disabilities in Public Health Programs
In an effort to increase inclusion of people with disabilities in public health plans and programs, the Association of University Centers on Disabilities is seeking opinions from interested parties.
Fill out a survey or sign up for a small group discussion session, and read more about the project.


ABLE Accounts, Trusts, Financial, and Benefits Planning
Tuesday, March 29
11 a.m. to 12:30 p.m. Pacific Time
Sponsored by the ABLE National Resource Center
Learn how ABLE accounts might interact, and compare to, special needs trust, pooled income trusts, and financial and benefits planning.
Read more and register.

Employment First: Integrated Employment for People with Significant Disabilities
Thursday, March 31
10 to 11 a.m. Pacific Time
Sponsored by the USC University Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles
Part of a monthly webinar series exploring policy issues for people with developmental disabilities, family members, and advocates.
Register by March 30.

Children with Special Healthcare Needs and Disaster Preparedness
Thursday, March 31
10 a.m. Pacific Time
Sponsored by the National Center for Disaster Medicine and Public Health Discussion of how disaster planners and the health care community can establish an effective pediatric management system.
Call in: 1-888-537-7715
Participant Code: 39933371
Learn more and join the webinar on March 31 (pre-registration not available).




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