Medi-Cal At Risk, Home Health Bill & Feeding Study

This newsletter was sent March 14, 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.

The proposed American Health Care Act would repeal and replace the Affordable Care Act (ACA). This bill would completely restructure California’s Medi-Cal program. For a look at how these changes could impact your family, check out the Kaiser Family Foundation’s brief, What Coverage and Financing is at Risk Under a Repeal of the ACA Medicaid Expansion and video, Medicaid’s Role: What’s at Stake Under a Block Grant or Per Capita Cap.

ACT NOW — Urge Congress to protect Medi-Cal! 

Send an Email or Letter

Use this template letter to easily explain why Medi-Cal matters to your family. You’ll find mailing addresses and emails for key representatives on the second page (if your family doesn’t use Medi-Cal but you know someone who does, please use this template). 

FVCA has also created a list of key Medi-Cal services CYSHCN commonly access, which can be found here. 

Make a Phone Call

White House public comment line: (202) 456-1111

United States Capitol switchboard (the operator will connect you with the office you request): (202) 224-3121

Use this phone script if you’d like a framework for your message, and refer back to the list of key Medi-Cal services here, if needed (if your family doesn’t use Medi-Cal but you know someone who does, please use this phone script). The Consortium For Citizens With Disabilities has also created a list of Medicaid talking points, which can be found here

Use Social Media

Use this social media toolkit to participate in online advocacy. The toolkit includes daily action items, sample tweets, hashtags, and a Thunderclap campaign that will send out the same Twitter post from multiple people at the same exact time. To take part, click here (all you need is a Twitter account, and you must sign up by Thursday at 8am).

Send a Text

Use ResistBot, a texting program that allows you to effortlessly contact your representatives. You don’t have to download anything — just text the word Resist to 50409 to get started.

In addition, here’s a list of other resources that may be helpful:


Support Needed For Bill Seeking To Improve Medi-Cal Rates For Home Health Agencies

Advocates are urging individuals to write letters in support of AB 654, legislation that would require the Department Of Health Care Services to establish an incentive-based, supplemental payment program for home health agencies that treat children who are receiving continuous nursing care or private duty nursing services at home through Medi-Cal. To access a sample letter, click here, to read a fact sheet on AB 654, click here, and to read a separate fact sheet on incentive payment legislation, click here.

Related: Families Struggling To Find At-Home Nursing Help (article further discussing AB 654)

Researchers Recruiting Young Children With Disabilities To Participate In Feeding Study

Food science researchers from Washington State University are conducting a feeding study on children with down syndrome and/or autism (1-4 years old). They’re looking to address texture perception and sensitivity. Participation will take place over one week and involves recording your child trying food. Families selected to participate will receive a $125 gift card. Email Ben at

Researchers Seeking Input On School-Based Social-Emotional Services For Autism

Students at the University Of South Dakota are conducting research on behalf of the South Dakota Leadership Education in Neurodevelopmental and Related Disabilities program regarding social-emotional school-based services for children with autism. They’d like to know what kinds of social-emotional services children receive, and what aspects of these services could be improved. To take their online survey, click here.


The National Health Law Program’s webinar series, “Protect Medicaid,” examines how proposed federal cuts to the program would impact our most vulnerable populations. The next webinars are scheduled for March 17 (Medicaid Expansion), March 24 (Consumer Protections/Due Process), and April 7 (Section 1115 Authority). To register, click here, and to read related issue briefs What Makes Medicaid, Medicaid? Services and Evaluating Medicaid Block Grant & Per Capita Cap Proposals, click here and here.

March 22: Research Updates On Transcranial Magnetic Stimulation (TMS) For Autism

Sponsor: Autism Research Institute

More information and registration here.

March 22: Family And Community Engagement In Addressing Childhood Trauma

Sponsor: Center For The Study Of Social Policy

More information and registration here.

March 23: Teaching Social Expectations Around Hygiene And Sexuality To Young Men With Verbal Autism And Aspergers

Sponsor: Parents Helping Parents

More information and registration here.

March 23: Being The Difference In Difficult And Shifting Times: Is It Lobbying? Is It Not?

Sponsor: National PLACE

More information and registration here.

March 28: Navigating The Transition Years For People With Autism: From Preteen To Adulthood

Sponsor: The Johnson Center For Child And Health Development

More information and registration here.

March 29: Using Evidence To Achieve Effective State Health Policy

Sponsor: National Academy For State Health Policy

More information and registration here.

March 30: Conservatorship: What People With Disabilities And Families Need To Know

Sponsor: University Center For Excellence In Developmental Disabilities (USC UCEDD)

More information and registration here. Note: This webinar will be presented in Spanish.

March 30: Effective Grassroots Advocacy

Sponsor: National PLACE

More information and registration here.

March 30: Irritable Kids: What The Research Tells Us

Sponsor: National Institute Of Mental Health

More information and registration here.

March 30: Autism And The Criminal Justice System: What Happens When Your Adult Child Is Detained Or Arrested?

Sponsor: Parents Helping Parents

More information and registration here.

March 31: How To Get The Best Wheelchair To Meet Your Needs

Sponsor: United Spinal Association

More information and registration here.


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Disabled, Shunned, And Silenced In Trump’s America

In Breakthrough, Researchers Detect Autism Signs In Infants

Syphilis Among California Newborns Spikes Amid Broader STD Epidemic

Education Department Records Uptick In Special Ed Enrollment

Simulation Lab Helps Parents Care for Kids At Home

Study Finds Medicaid Waivers Help Parents Stay Employed

My Autistic Sister Has A Voice That Needs To Be Heard

CDC Report: Youth Suicide Rates In Santa Clara County Highest In Palo Alto, Morgan Hill

New Report Finds Children At A Higher Risk Of Led Exposure In Several California Cities

Doctors Consider A Last Best Hope For Obese Teenagers: Surgery

Well-Child Care: Steady Growth In Breadth And Content

People With Autism, Intellectual Disabilities Fight Bias In Transplants

When You Don’t Speak The Same Language As Your Child’s Doctor

Is Teacher Preparation Failing Students With Disabilities?

A Mysterious Medical Condition Gets A Name — And A Genetic Link To Deafness

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