Posted January 5, 2017

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

California Children's Services

Upcoming CCS Advisory Group Meeting to Include Update on Whole-Child Redesign
Wednesday, January 11
10 a.m. to 3 p.m. Pacific Time
Sacramento Convention Center, 1400 J Street, Room 202
Dial-in: (888) 989-6488; Passcode (listen only): 1945234
The agenda (PDF) includes updates on implementation of the Whole-Child Model. There will be an opportunity for public comments at the end of the meeting. For those unable to attend, comments may be submitted to CCSRedesign@dhcs.ca.gov. All submitted comments will be read during the public comment portion. Comments are due by Monday, January 9. See a December 2016 update (PDF) on Frequently Asked Questions about the Whole-Child Model.

Network News

2016 – See What You May Have Missed
Care coordination and children with medical complexity were two of the topics highlighted in 2016 by the Lucile Packard Foundation for Children’s Health and its grantees and partners. Take a brief look back:

 

First Person: The Making of the "Super Parents" Series
Thousands of people have visited Family Stories, a photo essay series launched last month that documents a day in the life of children with special health care needs and their families. The work was featured on CNN as An Intimate View of the 'Super Parents' of Chronically Ill Children. In a new post, Ling Woo Liu shares some behind-the-scenes moments to explain how and why the Lucile Packard Foundation for Children's Health launched this project, which was shot by Pulitzer Prize-winning photographer Deanne Fitzmaurice. Read her post.

Request for Applications

Apply for Technical Assistance: Adopting Standards of Care for CSHCN
The Association of Maternal and Child Health Programs (AMCHP), in partnership with the National Academy for State Health Policy, is accepting applications from state teams interested in receiving peer-to-peer technical assistance in adopting the National Standards for Systems of Care for Children and Youth with Special Health Care Needs to improve their state system of care for this population. The project is supported by the Lucile Packard Foundation for Children's Health. Contact Kate Taft at ktaft@amchp.org with questions, see more information on the AMCHP website, and download the application form (Word). Deadline: January 23.

Family Engagement

Can't Find In-Home Nursing Care? Speak Up
Disability Rights California (DRC) would like to hear from families with children who have authorization for in-home nursing care through Medi-Cal, but who are unable to find nurses to work the approved hours. Families are encouraged to contact DRC at (888) 852-9241. Download the flyer about the investigation in English, Spanish, and Chinese (PDFs). Read more about DRC.

Research

Assessing the Financial Burden of Caring for a Chronically Ill Child
Families provide billions of dollars' worth of care for children with complex conditions who otherwise might need to be in hospitals or require professional services in the home, according to a new study published in Pediatrics. The authors recommend programs such as paid family leave, improved care coordination, and respite care to ease the financial and emotional burden on families. Read more.

Also see: Families Provide Billions in Unpaid Medical Care to Children with Chronic Conditions

California Policy

Medi-Cal Children's Health Advisory Panel to Meet
Wednesday, January 18
10 a.m. to 2 p.m. Pacific Time
1700 K Street, 1st Floor Conference Room, Sacramento
Dial-in: (800) 779-9041; Passcode: 4829896
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 and their families. See the agenda and meeting materials.

National Policy

Civil Rights Protections for Students with Disabilities
The federal Department of Education has issued guidance for schools on three topics related to children with disabilities. The topics include the differences in the definition of "disability" under federal laws and schools' responsibilities; guidance on the use of restraint and exclusion; and protections for students with disabilities who attend charter schools. Read more.

Webinar

How Can We Engage Families for Systems Change in Early Childhood?
Wednesday, January 11
10:30 to 11:30 a.m. Pacific Time
Hosted by the Center for the Study of Social Policy and First 5 Alameda County
The webinar will address a fresh approach to family-led systems change.
Register.

Archived Webinar

Event

Association of Maternal & Child Health Programs Annual Conference
March 4-7
Kansas City, MO
Sessions will cover topics including children and youth with special health care needs, early childhood services, adolescent health, and more.
Learn more and register by January 26 for the Early-Bird rate.

Resource

  • Complex Child January issue: Emotions. Complex Child is a monthly online magazine written by parents of children with special health care needs.

In the News

We'd like to hear from you

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

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