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Washington DC Update 3/5/2020
Greetings from Washington!

In the Update this week:

  • The Supreme Court has decided that it will hear oral arguments in the ACA case during next year’s term, which begins in October 2020. A decision is not likely to be rendered until the following spring.
  • The novel coronavirus of 2019 is taking over the world…of health news, and this Update, at least. Read about the virus and the policies and politics surrounding it, and find links to resources for families and family leaders.

In case you missed it: The February 26 Update reports that the “public charge” rule went into effect nationwide on February 24, and provides resources on the rule for families that might be affected.

IMPORTANT REMINDER: Please see the “Your Input Sought” section below for details and information about how to submit comments on Out-of-State Provision of Medicaid Services for Children with Medically Complex Conditions (part of implementing the ACE Kids Act), due March 23.
You can keep up to date on this topic via the CDC's webpage on the novel coronavirus . You can also subscribe to a new  COVID-19 newsletter , and follow the CDC on social media: @CDCgov ; Facebook ; Instagram . Links to additional resources are provided at the end of this Update.

In case you hadn’t noticed, IT’S AN ELECTION YEAR! The Voting & Elections webpage on USA.gov , provides information on who’s running (federal, state and local), how to register, when and where you can vote, absentee ballots, and more. If you can’t find what you need there, try VOTE411 (from the League of Women Voters). As always, a lot is at stake. Please register, vote, and spread the word. 

  • The Courts
  • Coronavirus News, Information, and Resources
  • Administration
  • Congress
  • Medicaid/CHIP News, Information, and Resources
  • Medicaid Waivers
  • Other News, Information, and Resources
  • Your Input Sought
  • Of Possible Interest
  • Upcoming Webinars and Calls
  • Additional Coronavirus Resources

ACA Case
On March 2, the US Supreme Court announced that it would hear the case (formerly known as Texas v. US) challenging the constitutionality of the Affordable Care Act (ACA) – actually two cases that will be heard together – Texas et al. v. California et al. and California et al. v. Texas et al.

The Court also approved the motion of 33 State Hospital Associations to file a brief as amici curiae (friends of the court). Oral argument will take place during the Court’s next term, which begins in October 2020. Therefore, a decision is not likely to be announced until spring of 2021, possibly as late as June. See Supreme Court Will Take Up Challenge to Obamacare's Individual Mandate (NBC News, 3/2/20). For Q &A about the case, see The Fate of Obamacare Is in the Supreme Court’s Hands Yet Again (Vox, 3/2/20). 
  • The novel coronavirus first identified in Wuhan, China, has been named “SARS‑CoV‑2” by the International Committee on Taxonomy of Viruses. The name stands for “severe acute respiratory syndrome coronavirus 2,” and is based on the determination that the new virus belongs to the existing species, severe acute respiratory syndrome-related coronavirus.
  • The disease caused by the virus has been named “COVID-19” (for “coronavirus disease 2019”) by the World Health Organization.

In Congress

Bill to Fund Coronavirus Response
On Wednesday afternoon, the House passed (by a vote of 415-2) an $8.3 billion supplemental funding bill to respond to the coronavirus. The bill reflects a bipartisan deal reached by the Democratic Chair of the House Appropriations Committee, Rep. Nita Lowey (D-NY), and her Republican Senate counterpart, Senator Richard Shelby (R-AL). The bill provides $7.76 billion to agencies involved in addressing the outbreak. This sum includes $2.2 billion in public health funding for prevention, preparedness, and response, of which $950 million is for state local health departments; over $3 billion for research and development of vaccines, therapeutics, and diagnostics; and nearly $1 billion “for procurement of pharmaceuticals and medical supplies, to support healthcare preparedness and Community Health Centers, and to improve medical surge capacity.” See House Appropriations Committee press release .

As reported in an article from The Hill , the bill requires that any vaccines, drugs, or tests developed by private companies using taxpayer dollars be made available for purchase by the federal government at a “fair and reasonable price,” a provision that had been sought by Democrats. In addition, the bill authorizes Medicare reimbursement for telehealth consultations, at a cost of $500 million. ($7.76 billion + $500 million =$8.3 billion.) Read more about the bill in the House Appropriations Committee press release , and the committee’s section-by-section summary .
The Senate is expected to take up the measure as early as this week, and the president is expected to sign the legislation, even though his initial request from Congress was more modest ($2.5 billion, of which half would have come from re-programming existing funds).

Administration Activities and News

Around the country
Policy Issues:

The Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) both have LOTS of information for consumers and health professionals:

There is a list of other resources and articles about the coronavirus at the end of this Update, including articles about prevention, children, and traveling by plane. The Family Voices website ( www.familyvoices.org ) will also soon have an information page about COVID-19. 
[See above information about the administration’s coronavirus activities.]
There have been no significant developments on legislation to address surprise medical bills or prescription drug prices.
On March 2, the Centers for Medicare & Medicaid Services (CMS) released an Informational Bulletin related to the 2020 Federal Poverty Level Standards and the 2020 Dual Eligible Standards.

Guidance to States on Behavioral Health Coverage Benefit for Separate Children Health Insurance Programs (CHIPs) 
From Medicaid.gov bulletin, 3/2/20
On March 2, the Centers for Medicare & Medicaid Services (CMS) released State Health Official (SHO) Letter: Access to Mental Health and Substance Use Disorder Services for Children and Pregnant Women in the Children’s Health Insurance Program that provides guidance to states on a new congressionally-mandated behavioral health coverage benefit for separate Children Health Insurance Programs (CHIPs). 

States will now be required to:
  • Provide coverage of all the American Academy of Pediatrics (AAP)/Bright Futures recommended behavioral health screenings and all U.S. Preventive Services Task Force (USPSTF) behavioral health recommendations with a Grade of A or B.
  • Provide an array of behavioral health benefits that is sufficient to treat a broad range of behavioral health conditions. 
  • Cover Medication Assistance Treatment for Opioid Use Disorders (OUDs) and tobacco cessation. 
  • Identify a strategy to facilitate the use of validated age-appropriate screening tools. These tools are used to detect a particular concern or condition.
  • Identify a strategy to facilitate the use of validated clinical assessment tools. These tools are used to determine a diagnosis, evaluate the current level of functioning, and develop treatment recommendations.
  • Submit a title XXI CHIP SPA to demonstrate compliance with Section 5022 of the SUPPORT Act. 

To track state waiver requests, see:
Moving with TRICARE from Overseas to Stateside Duty (TRICARE Benefits Updates, 3/4/20)

Learn about the rules that outline how and when you can enroll in a TRICARE plan, and more in these issues of “Health Matters.”

Fear of Medical Bills

IEP Season
From WrightsLaw – “IEP Season: Advocating for Your Child—Getting Started” in this issue of The Special Ed Advocate

Dental Resources for Kids
The Connecting Kids to Coverage National Campaign wants to remind families that with Medicaid and the Children’s Health Insurance Program (CHIP) coverage, children and teens up to age 19 can receive the necessary dental care, including regular check-ups, x-rays, fluoride treatments, dental sealants, and fillings, to keep them healthy and smiling. The Campaign offers a variety of resources to help spread the word about good oral health and to get kids and their families enrolled in Medicaid and CHIP:
  • Twitter and Facebook graphics are available in English and Spanish to share on social media.
  • Organizations can download a tip sheet with advice on sharing dental health education materials.
  • Parents and caregivers can be directed to the “Find a Dentist” tool on our website to locate a dentist in their area that accepts Medicaid and CHIP.
  • In addition to outreach for children of all ages and backgrounds, organizations can find materials specifically for expectant mothers, toddlers, and children with special needs on our Oral Health Initiative page.

Additionally, the Campaign’s Twitter handle, @IKNGov , has been tweeting out messages about dental health coverage throughout February and we encourage you to retweet to get the word out. Together, we can ensure children and teens have access to the dental care they need for greater self-confidence, overall good health, and to stay focused in school.
Organizational Development - UPDATE
The  HCBS Business Acumen Center  has released the FIFTH module of the  HCBS Business Acumen Center Toolkit : “Disability Network Business Strategies: A Roadmap to Financial and Programmatic Sustainability for Community-Based Organizations.” This resource is a ‘how-to’ guide designed to help community-based organizations (CBOs) evaluate, plan, develop, implement, and monitor strategies to help build and sustain their organizations in various business climates.
WORTH REPEATING: State Health Care Snapshots
The Kaiser Family Foundation’s state-specific health care "snapshots" provide data across a variety of health topics for each state, including health care costs, coverage (Medicaid, Medicare, private insurance), the uninsured, health status, and access to care. They also describe each state's political environment in this election year.

WORTH REPEATING: Health Literacy and Communications
From the National Public Health Information Coalition (NPHIC)
The NPHIC Outbreak Communications Guide was developed as part of a cooperative agreement with CDC’s National Center for Immunization and Respiratory Diseases. The guide suggests steps to take before, during, and after an outbreak.
Please pay special attention to the items marked with ***

The National Library of Medicine (NLM) is asking for public comment in its current effort to modernize ClinicalTrials.gov , the world’s largest public clinical research registry and results database. The focus of the modernization includes improving website functionality, submission processes, and use of data standards. For more information on the project in submitting a comment, click here . Send submissions to NLM by no later than Saturday, March 14, 2020, to Patient Affairs Staff (PAS), Office of the Commissioner, U.S. Food and Drug Administration, or fill out this form . (Tel: 301-796-8460.)

*** Request for Information on Out-of-State Provision of Medicaid Services for Children with Medically Complex Conditions – due March 23 ***
On January 21, the Centers for Medicare and Medicaid Services (CMS) published a Request for Information on “Coordinating Care from Out-of-State Providers for Children with Medically-Complex Conditions.” CMS is seeking public comments on:

  • Best practices for using out-of-state providers in coordinating care for children with medically complex conditions;
  • How care is coordinated for such children when that care is provided by out-of-state providers including when care is provided in emergency and non-emergency situations; and
  • Processes for screening and enrolling out-of-state providers, including efforts to streamline these processes or reduce the burden of these processes on such providers and states.
Comments are due on March 23, no later than 11:59 pm EST, and can be submitted HERE .
Traveling by Air with Service Animals – due April 6
On January 22, the Department of Transportation issued a proposed rule on traveling by air with service animals. As explained in the department’s press release , and this news article , the proposed rule would, among other things: define a service animal as a dog that is individually trained to do work or perform tasks for the benefit of a person with a disability; no longer consider an emotional support animal to be a service animal; consider a psychiatric service animal to be a service animal and require the same training and treatment of psychiatric service animals as other service animals. Comments are due on April 6 and can be submitted here .

CMS Has Issued a Request for Information (RFI) to seek public comments about ways to improve healthcare access, quality, and outcomes for women and infants in rural communities before, during, and after pregnancy, as well as information regarding the readiness of providers, including emergency medical services (EMS), to handle obstetric emergencies (i.e., emergencies related to pregnancy, birth, and after birth) in rural areas. Comments are due by 11:59 pm EST on April 12, 2020, and can be submitted by sending an email to [email protected] .

Submit Stories about How Medicaid Has Helped You to “That’s Medicaid”
Through its “ That’s Medicaid ” initiative, the Robert Wood Johnson Foundation is publicizing stories about how Medicaid has helped people in various situations. These stories might be helpful as you educate policymakers and the public about Medicaid. People can submit their own Medicaid stories here (scroll down).

FDA Patient Affairs and Patient Representatives Program®
The Food & Drug Administration has a Patient Representative Program ® , which offers patients and caregivers the opportunity to provide advice to the agency as it regulates drugs, biologics, and devices. The FDA also has a Patients Matter Video Series . The most recent video, What is Expanded Access? explains how to use the Expanded Access Program (also known as “compassionate use”) and features a family’s experience with it. Other videos in the series include Patients Matter: Giving Patients a Seat at the Table, and Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward . You can contact the FDA Patient Affairs Staff at Tel: 301-796-8460 or [email protected] or follow them on Twitter @FDAPatientInfo.
When the Hoofbeats Really Are a Zebra’s, a Patient Community Helps Me Navigate a New Rare-Disease Reality - "Unexpected" is how I understand our new normal living with a rare disease. This has opened my eyes to the importance of patient communities. (Written by an MD mom, STAT, 3/2/20)

Thursday, March 5, 1:00-2:00 pm ET

Thursday, March 5, 2:00 pm ET
Center on Budget and Policy Priorities (CBPP)

Thursday, March 12, 2:00 pm ET
National ABLE Resource Center
Throughout 2020, the ABLE National Resource Center (ABLE NRC) will be conducting “ABLE Program Spotlight” webinars for those who already have a basic understanding of ABLE. This webinar will showcase California’s Qualified ABLE Program, CalABLE.

NEW Patient Safety Awareness Week: Achieving Safe and Reliable Health Care
Tuesday, March 10, 1:00-2:30 pm ET
Health Resources and Services Administration (HRSA)
Dr. Allan Frankel, an internationally recognized expert in patient safety, will discuss the socio-technical framework and practical strategies for improving safety, focusing on teamwork, psychological safety, and accountability.
Call-in: 888-795-3252
Passcode: 3284388

Wednesday, March 11, 3:00-4:00 pm ET
ADvancing States

Tuesday, March 24, 2:00-3:00 pm ET
Justice in Aging

Tuesday, April 14, 1:00-2:00 pm ET
Public Health Foundation

Monday, June 1, 1:00-3:30 pm ET [last in a series ]
National Quality Forum/Administration for Community Living; Centers for Medicare and Medicaid Services
The Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) both have LOTS of information for consumers and health professionals:





Flying Soon and Worried About Getting Sick?

Travel insurance:

You can follow CDC social media for updates:

Sign-up to Receive CDC's New COVID-19 "What's New" Weekly Update

Some of the CDC webpages:

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Thank you for subscribing to the Washington DC Update newsletter. Please feel free to contact Family Voices Policy Director, Janis Guerney , with any questions. Past issues of the Update appear on the  Family Voices website . If you wish to unsubscribe, you can do so via the "SafeUnsubscribe" link below.

Family Voices  is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.