Posted March 30, 2017

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

Network News

Pediatricians Discuss Benefits, Challenges of Caring for Children with Special Health Care Needs
Although children with special health care needs (CSHCN) fare better when they are cared for in a "medical home," only a small percentage receive such care. A newly published two-part study queried California pediatricians about their experiences caring for CSHCN and their thoughts on system changes that could facilitate their participation in medical homes for these children. Respondents identified "time"—for extended visits, for administration, for care coordination—and low reimbursement rates as two key barriers to seeing CSHCN. Study participants also discussed their comfort level in providing care for CSHCN; issues in access to specialty care; and a range of other topics.

Also see: An abstract in Academic Pediatrics: Pediatricians’ Comfort Level in Caring for Children with Special Health Care Needs

California Children's Services

CCS Advisory Group to Meet
Wednesday, April 12
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
Agenda and details to be posted.

Performance Measures Technical Workgroup Meets
Family participation, transition services, and care coordination were among the topics discussed March 22 by technical workgroup members who are advising on the creation of standard performance measures for children with special health care needs across the CCS program. The work is part of the CCS redesign process. See the meeting agenda (PDF) for a full list of topics discussed, and the membership list (PDF) of the Performance Measures Technical Workgroup.

California Policy

Senate Hearing on Special Needs to Feature Director of Department of Health Care Services
Monday, April 3
10 to 11:30 a.m. Pacific Time
State Capitol Room 2040
Jennifer Kent, director of the Department of Health Care Services, is among the panel of speakers scheduled to discuss how families can be more involved in policymaking in California. Other announced speakers include Senator Richard Pan; Juno Duenas, executive director of Support for Families of Children with Disabilities; Katie Schlageter, California Children’s Services administrator for Alameda County; and Ted Lempert, president of Children Now. See the agenda (PDF) and hearing information.

Online Now: Senate Hearing on Disparities in Regional Center Purchase of Services 
If you missed the March 14 Senate hearing on disparities in Regional Center purchase of services, you now can download the full recording. Family members, advocates, and state officials testified about racial and ethnic inequities, and advocates provided policy recommendations (PDF).

In Brief

National Policy

Supreme Court Unanimously Expands Rights of Students in Special Education
In a major decision, the US Supreme Court on March 22 issued a unanimous ruling (PDF) that a "free, appropriate public education," as guaranteed under the Individuals with Disabilities Education Act, must meet more than minimal standards. The Court said that the law "requires an education program reasonably calculated to enable a child to make progress in light of the child’s circumstances." Read more.

Also see: Supreme Court Nominee’s Rulings on ADA, IDEA Have Advocates Worried

What May Come Next for Affordable Care Act, Medicaid
Although the effort to repeal and replace the Affordable Care Act (ACA) and restructure Medicaid did not come to a vote in Washington last week, the next steps are not clear. Various organizations and news outlets are tracking some possibilities. Changes to the ACA and Medicaid could affect children with special health care needs and their families.

Family Engagement

Family Voices: Joining Forces in Sacramento
Nearly 200 individuals interested in promoting the health and well-being of children with special health care needs took part in Family Voices of California’s 15th Annual Health Summit and Legislative Day in Sacramento in February. See highlights (PDF) of the summit, along with photos and recommendations. Read more about Family Voices of California.

Medical Complexity

Framework Proposed for Designing and Evaluating Complex Care Programs
Care providers and policymakers often are faced with a challenge when asked for evidence about whether a complex care program actually works. A new report proposes a four-phase framework to guide development and evaluation of such programs. Although this article does not specifically address children’s health, it may be of interest. Read more.


Can You See Me Now? Authentic Representation of People with Disabilities on Television
Wednesday, April 5
9 to 10 a.m. Pacific Time
CUNY School of Professional Studies
Read more and register.

Webinar Series for Youth and Young Adults: Telling Your Story for a Public Policy Purpose
Tuesday, April 11
4:30 to 5:30 p.m. Pacific Time
Family Voices, the National Center for Family/Professional Partnerships and others. For youth and young adults only.

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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