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Family Voices of California
October 12, 2018

Announcements

SAVE THE DATE! 
17th Annual FVCA Health Summit and Legislative Day
March 10-12, 2019, Holiday Inn, Sacramento — Registration will be available soon. Watch for updates at http://www.familyvoicesofca.org/annual-health-summit/
Spread the word!
Family Voices of CA and the Department of Health Care Services have teamed up to provide information about the Whole Child Model to families and parent center staff in a way that is accessible and convenient for those who it will affect the most! See flyer below for more information. 
Click here to download and share the flyer above! 
California Children's Services (CCS) Whole Child Model Workshop 
Wednesday, November 14, 2018 10:00 AM - 12:00 PM PDT, Matrix Parent Network and Resource Center, 94 Galli Drive, Suite C, Novato, CA 94949-5739
See flyer for more details. 
Hosted by FVCA in partnership with DHCS

Legislative/Regulatory

The Trump administration announced a proposed "public charge" rule that would change requirements for some immigrants to enter the U.S. or become permanent residents.  Information for immigrant families is here
AB 2657, Disability Rights CA's bill to limit the use of restraint and seclusion in schools was signed by Governor Brown 9/30/18
HR 3325 — The Advancing Care for Exceptional Kids Act (ACE) would establish a state Medicaid option to provide coordinated care through a medical home for children with complex medical conditions. Click here to read more. 
S 2227 — The EMPOWER Care Act would reauthorize the Medicaid "Money Follows the Person" program, which helps people transition from institutional to community-based care. Click here to read more.

Conferences

NORD's 2018 Rare Diseases and Orphan Products Breakthrough Summit 
Monday, October 15 - Tuesday, October 16, Washington D.C.

NICU Family Symposium 
Saturday, October 20, 8:30AM - 1:00PM, Rancho Cordova
2018 National Federation of Families for Children's Mental Health Conference
Thursday, November 1 - Saturday, November 3, Houston, Texas. 

Get Involved

Survey: What Doctors Should Know in Caring for Children 
The Council on Medical Student Education in Pediatrics is revising its General Pediatric Clerkship Curriculum, and they are seeking parent input on what you feel are the crucial components any physician needs to know to care for children. It will take approximately 5 minutes to complete the survey
Survey: Private Insurance and Early Start
The Systems Committee of the California Interagency Coordinating Council on Early Intervention is seeking family input regarding their experiences with Early Start services and private insurance coverage. Complete the survey in English or Spanish.
Got Transition is Updating the Six Core Elements of Health Care Transition
Got Transition is seeking feedback from health care clinicians, researchers, government agencies, youth/young adults, family members, and others to update the Six Core Elements of Health Care Transition. Provide comments here

Webinars & Meetings 

Webinar: Why You Should Care About the Midterm Elections
Tuesday, October 16, 2018, 10:00 AM PDT 

Hosted by the National Down Syndrome Congress
Webinar: Dept. of Health Care Services Whole Child Model
Thursday, October 18, 2018, 1:00 PM PDT
Webinar for families and those serving California Childrens Services beneficiaries, outlining the transition to Whole Child Model. See flyer for more details. 
Hosted by the California Department of Health Care Services
Webinar: FVCA Webinar: Using Kidsdata for Action
Wednesday, October 24, 2018, 12:00 - 1:00 PM PDT 
Hosted by Family Voices of California 
Webinar: A Conversation on Ethical Considerations for a Fair and Effective Health Care System
Wednesday, October 24, 2018, 10:00 - 11:00 AM PDT
Hosted by the Lucile Packard Foundation for Children's Health
Webinar: EPSDT for Providers and Advocates: When to Engage the Legal Community
Wednesday, October 24, 2018, 11:00 AM - 12:30 PM PDT 
Hosted by the American Academy of Pediatrics 
California Children's Services (CCS) Whole Child Model Workshop 
Wednesday, November 14, 2018 10:00 AM - 12:00 PM PDT

Matrix Parent Network and Resource Center (94 Galli Drive, Suite C, Novato)
Hosted by FVCA in partnership with the California Department of Health Care Services
Webinar: My Patient Rights — Removing Barriers to Treatment and Care 
Wednesday, November 14, 2018, 12:00 PM - 1:00 PM PDT 
Hosted by Family Voices of California 
2019 Transition Age Youth Conference
Tuesday, February 26, 2019, Sacramento 
Scholarships are available. Apply by November 30, 2018 

Resources

Family Voices Immigration Toolkit
Everything families and health care professionals need to know about providing medical information to immigration officials, which may be needed to argue for allowing a child with special health care needs or the child's parent to stay in the US. 
National Standards for Systems of Care for Children and Youth with Special Health Care Needs
This toolkit reflects national standards for systems of care for CYSHCN, defining the core components of a comprehensive, coordinated, and family-centered systems. Developed by the Association of Maternal & Child Health Programs and the National Academy for State Health Policy, the kit includes tools, information, and resources states can use to design, strengthen, and improve health care systems for CYSHCN and their families.
The Health Resources and Services Administration (HRSA) has released the 2017 National Survey of Children's Health (NSCH) data. An overview and new estimates of key indicators are found in the NSCH Fact Sheet
2018 Disability Data Digest is a compilation of the latest disability statistics.
State Medicaid Fact Sheets Highlight the Role of Medicaid in the U.S. Health Care System
The Kaiser Family Foundation summarizes Medicaid coverage and spending nationally and in each state.  
Infographic: Medicaid and CYSHCN
The Catalyst Center has created a one-page infographic illustrating important elements of Medicaid and children and youth with special health care needs (CYSHCN). 
Updated State Medicaid and CHIP Snapshots
The Georgetown University Center for Children and Families and the American Academy of Pediatrics created factsheets underscoring the importance of Medicaid coverage. 
From the Lucile Packard Foundation for Children's Health
Webinar slides and recording from, "A Conversation on Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction."

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