Posted October 20, 2016

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

Care Coordination

Webinar: Developing an Effective Care Plan for Children with Special Health Care Needs
What does it take to create and implement an effective, family-centered plan of care for a child with special health care needs? Two experts will discuss their approaches to the process of care planning in two very different settings—Children's Hospital of Philadelphia and a small private practice in Vermont. Register for the webinar, sponsored by Family Voices, the Catalyst Center, and the Lucile Packard Foundation for Children's Health.
Wednesday, November 9
10 to 11 a.m. Pacific Time; 1 to 2 p.m. Eastern Time

California Children's Services

Advocates Comment on Proposed Evaluation for CCS Pilots; Key Points of SB 586
The Department of Health Care Services has developed a draft evaluation design for two CCS pilot projects that will test models of care delivery. The pilots are the existing Medi-Cal managed care plan at the San Mateo County Health Plan, and a provider-based Accountable Care Organization that will be tested at Rady Children's Hospital in San Diego. The evaluation plan possibly could be the template for all CCS evaluations that will be required under SB 586, which recently became law. Evaluations may be used at the end of the five-year demonstration period to make decisions about permanent restructuring of the CCS program.

Eleven major advocacy organizations have submitted detailed comments to the state on the draft design, which must be approved by the federal government. See the draft evaluation (PDF) and the advocates' comments (PDF).

CRISS (Children's Regional Integrated Service System), one of the organizations that signed the comments letter, also has prepared a summary of the major points covered by SB 586 (PDF).

Also see:

Network News

Opinion: A Parent's Call to Train a New Workforce for In-Home Care
Diane Stonecipher's son, now 24, is blind, quadriplegic, profoundly delayed, and has been in hospice twice. Yet he doesn't qualify for nursing care at home. Stonecipher, herself a nurse, says it's time to train a new kind of workforce for in-home and residential care. Read her opinion piece.

Family Engagement

Family Voices of California Seeks Applicants for Training of Trainers Workshop
Family Voices of California invites California organizations serving families of children and youth with special needs to send one representative to a two-day Project Leadership Training of Trainers workshop. Project Leadership is a parent advocacy training that aims to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Project Leadership is funded by the Lucile Packard Foundation for Children's Health. The workshop will be offered in San Francisco and Los Angeles. Read more and apply (Word doc).

Pediatrics Now Accepting Articles Co-Authored by Patients, Families, and Providers
Pediatrics, the peer-reviewed journal of the American Academy of Pediatrics, has expanded its criteria to accept "Family Partnerships" articles that reflect the joint perspective of patients, families, and health care professionals. The journal seeks articles written collaboratively on topics related to children's health. Accepted articles will be made available without charge to the general public. Read more.

Reminder: Applications Due for DC Internships
November 7 is the deadline to apply for the Summer Internship Program sponsored by the American Association of People with Disabilities, which places youth in summer internships in Washington, DC. Read more and find application materials.

California Policy

Department of Health Care Services Stakeholder Advisory Committee to Meet
Monday, October 24
9:30 a.m. to 3:30 p.m.
1414 K Street, First Floor, Sacramento
1-800-369-3159 (listen-only); Passcode: 8818269
To view meeting materials, visit the website. The agenda (PDF) includes an update on the California Children's Services program.

Medi-Cal Children's Health Advisory Panel to Meet
Tuesday, November 15
10 a.m. to 2 p.m.
Department of Health Care Services, 1700 K Street, 1st Floor conference room, Sacramento
888-469-1573; Passcode: 2862614
The MCHAP is a 15-member independent statewide advisory body that advises the Department of Health Care Services on matters relevant to children enrolled in Medi-Cal. To view the agenda and meeting information, check the website.

National Policy

Supreme Court Will Hear Case on Public School Education for Children with Disabilities
The parameters of a "free appropriate public education" will be examined by the US Supreme Court, which has agreed to hear a Colorado case regarding the requirements for school districts using federal funds to provide education under the Individuals with Disabilities Act (IDEA). The case, which involves a student with autism, could affect children and families around the country who disagree with how their schools interpret the law. Read more.

2016 Report to the President on People with Intellectual Disabilities Released
Family engagement, federal education policies, transition to adulthood, and self-determination are the focus of the 2016 report from the President's Committee for People with Intellectual Disabilities. The newly released report provides recommendations for creating federal policies to bolster societal inclusion of individuals with intellectual disabilities. Read the report (PDF).

Small Increase in Supplemental Security Income (SSI) Payments for 2017
Monthly Supplemental Security Income (SSI) will rise by just 0.3 percent in 2017, according to information released by the Social Security Administration. Read more.

Obama Signs Bill Regarding Rare Pediatric Medicines
On September 30, the president signed a controversial bill that temporarily awards vouchers to drug makers if they develop medicines for rare pediatric diseases. Pharmaceutical companies can redeem the vouchers with the Food and Drug Administration (FDA) to speed review of other drugs they are developing. Some advocates support the new law because it provides incentives for companies to create drugs for diseases that have been neglected, but the FDA strongly opposes it. Read more.

Did You Know?

New on Data on Childhood Adversity, Resilience
Childhood adversity, sometimes referred to as ACEs (Adverse Childhood Experiences) has come to be seen as an urgent public health crisis. The higher the number of traumatic events a child experiences, the more long-lasting impacts those events may have on the child's physical, mental, and emotional health. On October 19, introduced this topic on the site, posting 56 indicators related to adversity and resilience. See the Childhood Adversity and Resilience data.


Study: Bullied Children with Disabilities Tend to Respond in Kind
A new study from the University of Missouri has found that children with disabilities, particularly those with learning or emotional disabilities or autism, are more likely to respond with bullying or fighting when they are bullied, not only to their bullies but to other children as well. The researchers suggest that students with disabilities be taught appropriate response skills. Read more.



Maximizing Insurance Enrollment: Strategies to Enroll Hard-to-Reach Populations
Tuesday, October 25
11 a.m. to 12:30 p.m. Pacific Time
Family Voices and the Association of Maternal & Child Health Programs
Second in a three-part series, "Maximizing Insurance Enrollment in Maternal and Child Health."

Navigating the Criminal Justice System for People with Intellectual/Developmental Disabilities
Thursday, October 27
10 to 11 a.m. Pacific Time
USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Read more (PDF) and register.

Silence=Violence Webinar: Empowering People with Disabilities to Recognize and Report Abuse
Tuesday, November 1
1 p.m. Pacific Time
California Foundation for Independent Living Centers
Read more and register.

In the News

We'd like to hear from you

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