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:

Changes To Medi-Cal’s Eligibility Benefits In The Proposed ACA Repeal Bill (Western Center On Law And Poverty)
Why Proposed Mediciad Per Capita Caps & Block Grants Matter For Families Of Children With Special Health Care Needs (Lucile Packard Foundation For Children’s Health)
How The ACA Helps Children With Special Health Care Needs (Family Voices)
The Importance Of Medicaid To Children With Special Health Care Needs (Family Voices)
What You Need To Know: The ACHA And Home/Community Based Services
Protect Medicaid: Critical Opportunities To Support Children, Youth, And Families Involved With Child Welfare (the Center For The Study Of Social Policy)
Promoting Healthy Outcomes For Young Children And Families: Implications Of Proposals To Restrict Medicaid, CHIP, And The ACA (the Center For The Study Of Social Policy)
Protecting Rare Disease Patients: Principles For Health Coverage Reform (National Organization For Rare Disorders)

OPPORTUNITY FOR INPUT

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 charles.bernhard@wsu.edu.

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.

WEBINARS

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.