The Power Of Disability Advocacy, Sickle Cell & The ER, & CCS Survey

This newsletter was sent Aug. 1, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights and action items that affect children and youth with special health care needs, please sign up here.

RFA Reminder: FVCA is inviting CA organizations serving families of children with special needs to send one representative to a Project Leadership Training-of-Trainers workshop in SF/LA. For more information, click here, and to register for an informational webinar, click here.

Reflections: ‘Disability Community Advocacy Made The Biggest Difference’

After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click here.

Alison Barkoff, Director of Advocacy at the Center For Public Representation

This success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.  

Alison Barkoff, Director of Advocacy at the Center For Public Representation, shared her thoughts on the devoted work of the disability community during the past few months. To read her blog post, click here.


Updated American Academy Of Pediatrics ‘Principles‘ Aims To Ensure Children Have Affordable Access To Quality Care

Originally published in 2010, the Principles Of Child Health Financing outlines how the design, financing and payment policies of a health care system can ensure children have access to universal coverage with quality, affordable health insurance that covers the full scope of essential pediatric benefits. The updated version now emphasizes that Medicaid and the Children’s Health Insurance Program are hard-won gains for children’s health care and should be upheld in any future legislation. To read the updated policy, click here.

New Tip Sheets On Improving Quality Of Care For Emergency Department Patients With Sickle Cell Disease

The National Center On Birth Defects And Developmental Disabilities has developed two new tip sheets focused on improving the quality of care for patients with sickle cell disease who visit the emergency department — a place where they often experience barriers to care. One tip sheet is for patients, and the other is for doctors.

Pediatric Symptom Checklist To Assess Emotional And Behavioral Problems

The Pediatric Symptom Checklist from Massachusetts General Hospital can be used by parents and pediatricians to assess how 4-16 year-olds are functioning in different settings. The screening can help families recognize potential behavioral problems so that appropriate interventions can be initiated as early as possible. To access the checklist, click here (available in multiple languages).

Relatedvideos from Talking Is Teaching on fostering social-emotional development in children


Survey: Does Your Child Receive California Children’s Services (CCS) In A County Scheduled For Transfer To Medi-Cal Managed Care Plans?

Beginning next year, the Department of Health Care Services (DHCS) will transition kids currently enrolled in CCS in these 21 counties into Medi-Cal managed care plans to better integrate their care.

If your child receives CCS services in one of the above counties, FVCA invites to share your questions and concerns about the planned rollover so that we may assist you in this transition. 

To take our survey, click here (for Spanish, click here). For more information about the Whole Child Model click here, and for county-specific phase-in information click here.

Survey: Kidsdata Seeking Feedback On Website And Resources, a program of the Lucile Packard Foundation For Children’s Health that provides high-quality data on children in California, has created a survey to help inform their website and outreach activities. The questions should take an estimated 10 minutes to complete, and everyone who participates will be entered in a drawing to win one of five $50 Amazon gift cards. To take the survey, click here.

First 5 Contra Costa To Host Focus Group For African American Families

First 5 Contra Costa will be holding a focus group on Aug. 14 for African American families with young children to learn how the organization can provide better support and programs for this population. The meeting will take place from 6-8 p.m. in Concord. Dinner, child care and a $40 stipend will be provided. To register, call (925) 967-4709.


August 2: Debunking Achieving A Better Life Experience (ABLE) Myths

Hosted by: National Disability Institute

More information and registration here.

August 3: Project Leadership Training-Of-Trainers RFA Informational Webinar

Hosted by: Family Voices Of California

More information and registration here.

Related: Learn more about Project Leadership Training-Of-Trainers here.

August 3: Autism And Epilepsy

Hosted by: American Autism Association

More information and registration here.

August 3: Integrating Oral Health Into Oregon’s Coordinated Care Model

Hosted by: National Academy For State Health Policy

More information and registration here.

August 7: Use Of Telepsychiatry To Improve Access To Care For Rural Populations

Hosted by: Association Of State And Territorial Health Officials

More information and registration here

August 8: Americans With Disabilities Act (ADA) Network Overview

Hosted by: National Information And Referral Support Center

More information and registration here

August 16: Mental Health Parity: Ensuring Equal Access To Treatment For Children

Hosted by: Family Voices Of California

More information and registration here.

Related: ‘What Is Mental Health Parity’ Infographic

August 23: Medi-Cal Services For Children With Autism Spectrum Disorder And The Family Focused Model Of Care

Hosted by: Family Voices Of California

More information and registration here.

Archived Webinar: Medicaid Undone? Covering The Safety Net’s New Future


Disability Advocates Relieved By Failure Of Health Care Bill

Medicaid Is Integral To Children With Complex Health Care Needs

Bay Area Kids With Type 1 Diabetes Seek Funding In D.C.

California Needs Equality When It Comes To Mental Health Care

‘I Am Totally Burned Out’: Patients Watch Health Care Debate With Dread

For Medi-Cal Patients Who Need Specialists Or Mental Health Treatment, Where You Live Will Determine Your Access

‘Social Camouflage’ May Lead To Underdiagnosis Of Autism In Girls

At A Growing Number Of Schools, Sick Kids Can Take A Virtual Trip To The Doctor

For Kids With Cancer, Focusing On Quality Of Life

For Those Who Can Afford Them, Swimming Lessons Can Save The Lives Of Children With Autism

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