February 19, 2020
Washington DC Update 2/19/2020
Greetings from Washington!

In the Update this week:

A federal court of appeals upheld the district court’s decision to invalidate the waiver granted to Arkansas that would have allowed the state to implement work requirements as a condition of Medicaid eligibility. 

The Supreme Court indicated that it would make a decision on Friday, February 21, about whether to take up this year the Texas case about the constitutionality of the Affordable Care Act. 

Congress must sort out the competing policies reflected in multiple bills dealing with surprise medical billing.

February is Black History Month .
Visit the Black History Month webpage (HHS Office of Minority Health) to learn more about activities and events, and to download shareable graphics and other related materials.

Rare Disease Day – February 29
HHS and the National Organization for Rare Disorders (NORD) recognize February 29 as Rare Disease Day with the theme, "Rare is many, rare is strong, and rare is proud!" Find information, events, and campaign resources at the Rare Disease Day website. 

Other useful information:
Beware of Social Security Scams. The Inspector General of the Social Security Administration has issued a Fraud Advisory about new twists to Social Security phone and email scams. Please see the end of this Update for information you can share with families.

Coronavirus : You can keep up to date on this topic via the CDC's webpage on the novel coronavirus from China . See also Coronavirus Misinformation Is Spreading Fast (Axios Vitals, 1/28/20).

In case you hadn’t noticed (J), 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.

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 (implementation of the ACE Kids Act), due March 23.


  • The Courts
  • Congress
  • Medicaid/CHIP News, Information, and Resources
  • Medicaid Waivers
  • Tricare
  • Other News, Information, and Resources
  • Your Input Spotlight
  • Of Possible Interest
  • Upcoming Webinars and Calls
  • Information on Social Security Scams

Court of Appeals Upholds Invalidation of the Medicaid Work-Requirement Waiver
In a unanimous (3-0) decision issued on February 14, the US Court of Appeals for the DC Circuit affirmed the district court’s order to vacate (invalidate) the administration’s granting of a waiver that would have allowed Arkansas to establish a work requirement as a condition of Medicaid eligibility. The opinion was written by Judge David Sentelle, a Reagan appointee. The basis of the court’s decision was the same as that of the district court that, in granting the waiver without taking into account whether it would advance the primary purpose of Medicaid to provide medical assistance the Centers for Medicare and Medicaid Services acted in an “arbitrary and capricious” manner in violation of the Administrative Procedure Act. The opinion: Greshem v. Azar

ACA Case
The Supreme Court has indicated that it will decide on Friday, February 21, about whether to hear this year the consolidated cases (formerly Texas v. U.S.) about the constitutionality of the Affordable Care Act – House of Representatives v. Texas and California v. Texas. See Supreme Court Will Weigh Expediting Democrats’ Obamacare Appeals (Bloomberg News, 2/5/2020). 
Surprise Medical Billing
As reported in the February 13 Update, there are now multiple bills in the House and Senate to address the issue of surprise medical billing, which occurs when a patient goes to an out-of-network emergency room or goes to an in-network facility but gets billed by an out-of-network provider working within the facility. Bipartisan bills on this issue have been approved by three House committees and one Senate committee. All the bills would prohibit patients from being billed for costs beyond what they would pay for in-network care, but they take different approaches for determining the amount that the providers should be paid.

Simply put, bills approved by the House Committees on Energy & Commerce and Education & Labor, along with the bill approved by the Senate Committee on Health, Education, Labor & Pensions (HELP), although somewhat different, would set payments based on the median in-network amount paid by insurers in the geographic area. This is known as the “benchmark” approach.

In contrast, the bill approved by the Ways & Means Committee on February 12, would establish provider payments through an arbitration approach (Independent Dispute Resolution, or IDR). The benchmark approach is favored by insurers because they think it will result in lower provider payments than the IDR approach.

The IDR approach is favored by providers including the American Medical Association and teaching hospitals because they think it will yield higher payments. Consumer groups tend to favor the benchmark approach because they fear that higher provider payments will lead to higher insurance premiums.

After they reported out their respective bills, House Energy & Commerce Committee Chairman Rep. Frank Pallone (D-NJ), and Senate HELP Committee Chairman Senator Lamar Alexander (R-TN) developed joint legislation that takes the “benchmark” approach for claims up to $750 and air ambulance claims up to $25,000, with Independent Dispute Resolution for arbitration for larger claims. See An Examination of Surprise Medical Bills and Proposals to Protect Consumers from Them (Kaiser Family Foundation, updated February 10, 2020).

On February 12, President Trump tweeted, “Ending surprise medical billing moving ahead in Congress! Thanks to Way & Means and Education/Labor Committees for your work on Bills to protect patients and end medical bill ripoffs! Work with Energy & Commerce, HELP committees to send BIPARTISAN bill to my desk!”

House Speaker Nancy Pelosi reportedly plans to hold a vote on surprise-billing legislation within the next couple of months, expecting to tie it to other health legislation needed to extend funding for community health centers and some other programs beyond May 22. For more details about this issue, see The Health 202: Power Post Analysis, Feb. 13, 2020, (Washington Post, 2/13/20); and When Your Doctor Is Also A Lobbyist: Inside The War Over Surprise Medical Bills (Kaiser Health News, 2/12/20).
Revisiting CHIP Buy-In Programs For Children (Health Affairs blog, 2/14/20)

More on: CMS Guidance Allowing States to Partially "Block Grant" their Medicaid Programs
As explained at length in the February 5 Update and the February 13 Update, the Centers for Medicare and Medicaid Services (CMS) issued new guidance (in a letter to State Medicaid Directors) outlining its Healthy Adult Opportunity (HAO) initiative for some or all adults in the Medicaid “expansion population” adults that a state opts to cover pursuant to the Affordable Care Act as well as some other adults ( including low-income parents). Here is another, in-depth, analysis of the HAO: The Medicaid Block Grant (Experiment) Cometh (Health Affairs blog, 2/7/20). 
As explained in “The Courts” section, above, a federal court of appeals has affirmed a lower court decision that vacated (invalidated) the administration’s approval of a waiver that would have allowed Arkansas to establish a work requirement as a condition of Medicaid eligibility for certain beneficiaries.

To track state waiver requests, see:
(National Academy for State Health Policy)
The Census – the Count All Kids Initiative
In order to ensure that cities, counties, and states receive the federal aid to which they might be entitled, it is important to have an accurate count of their populations. The 2010 census missed more than 10% of all children under age five in the U.S. The Count All Kids initiative, sponsored by The Partnership for America’s Children, First Focus on Children, Zero to Three, and The Coalition on Human Needs, provides resources for community members so that they can help ensure an accurate count in the 2020 census. To see how hospitals and medical providers are helping in Washington, DC, see Count Your Cuties: How Hospitals and Medical Providers Are Helping Count Kids for the 2020 Census.

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].

(Journal of Public Health Management and Practice, March/April 2020)
As reported in the 2/13/20 NCBDDD Partner Alert, CDC researchers recently explored trends in the number of states that have State Supplementary Payment (SSP) Programs. They found that that SSP program availability has not increased markedly over the last 20 years, with 45 states offering benefits to eligible individuals in 2018. Fewer than half of states reported SSP availability to children with disabilities and their families. 
Please pay special attention to the items marked with ***
Organ Donation Regulations – due February 21, 2020
On December 17, the administration announced a proposed rule intended to increase the number of organ donations. For more information, see the press release, Organ Procurement Organization (OPO) Conditions for Coverage Proposed Rule: Revisions to Outcome Measures for OPOs, and Trump Administration Announces Move Aimed to Increase Organ Donations (The Hill, 12/17/19). The proposed regulation can be found, and comments can be submitted on Regulations.gov .
Proposed Payment Notice and Letter to Issuers – Due March 2
As reported in the February 5 Update, on January 31, the Centers for Medicare & Medicaid Services (CMS) issued the proposed annual Notice of Benefit and Payment Parameters (NBPP) Rule for 2021, also known as the Proposed 2021 Payment Notice. See CMS press release. The NBPP sets requirements and standards for Affordable Care Act insurance reforms and the health insurance marketplaces. Among other things, CMS seeks comment on whether enrollees who automatically re-enroll should have their premium tax credits reduced to $0 unless they return to the marketplace for a new eligibility determination. (See page 2 of this Fact Sheet .) Public comments are due on March 2, 2020, and can be submitted on this page of Regulations.gov .
The U.S. Department of Transportation (DOT) seeks public comments on a new  proposed rule to improve restroom access for passengers with disabilities on single-aisle aircraft with 125 or more seats. The rule is based on  negotiated rulemaking undertaken by DOT's Advisory Committee on Accessible Air Transportation, which included aviation industry representatives, disability rights advocates, and other stakeholders. The proposed regulation addresses lavatory interiors, on-board wheelchairs, and training of flight attendants. Comments are due by March 2, 2020, and can be submitted here
*** 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 .

FDA Patient Representatives
Are you a patient or caregiver who wants to get involved at FDA? Contact the Patient Affairs Staff (PAS) or follow them on Twitter @FDAPatientInfo.

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). 
By Family Partnerships Specialist, and Family Voices staff member, Cara Coleman, JD, MPH (“Insights” blog, National Institute for Children’s Health Quality) 
Wednesday, February 19, 2:00-3:00 pm ET
Community Living Policy Center, Brandeis University
Wednesday, February 19, 2:00-3:00 pm ET
CMS Health Insurance Marketplace
(This presentation will provide guidance about Special Enrollment Periods (SEPs) and will focus on navigating eligibility for SEPs and resolving SVIs and DMIs.)

Thursday, February 20, 12:00-1:00 pm ET
Mental Health Technology Transfer Center Network (funded by the Substance Abuse and Mental Health Services Administration)

Thursday, February 20, 2:00 pm ET
RAISE Family Caregiver Resource and Dissemination Center, National Academy for State Health Policy (NASHP)
Monday, February 24, 1:00-2:00 pm ET
The Family Run Executive Director Leadership Association (FREDLA) and the Early Childhood Family Network
(This webinar will address ways family-run organizations and advocacy groups can inform families about the importance of being counted in the 2020 Census. Resources will be available for you to use in your own communities.)

Monday, February 24, 3:00-4:30 pm ET
National Institute for Health Care Management (NIHCM) Foundation 

Tuesday, February 25, 12:00-1:00 pm ET
SPAN Parent Advocacy Network
Tuesday, February 25, 2:00-3:30 pm ET
SAMHSA’s National TA Network for Children’s Behavioral Health
Tuesday, February 25, 2:00 pm ET
Health Reform: Beyond the Basics /Center on Budget and Policy Priorities
Wednesday, February 26, 2:00 pm ET
Centers for Medicare and Medicaid Services (CMS)

Wednesday, February 26, 3:00-4:30 pm ET
National Center on Advancing Person-Centered Practices and Systems (NCAPPS)
For more information, scroll down to the Feb. webinar on this page of the NCAPPS website.
Thursday, February 27, 1:00-2:00 pm ET
TRICARE/Military OneSource
Thursday, February 27, 2:00-3:00 pm ET
SAMHSA ’s Bringing Recovery Supports to Scale Technical Assistance Center Strategy ( BRSS TACS )

Thursday, February 27, 3:00-4:30 pm ET
Substance Abuse and Mental Health Services Administration (SAMHSA) TA Network

Thursday, March 5, 1:00-2:00 pm ET
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
Beware of Social Security Scams. The Inspector General of the Social Security Administration has issued a Fraud Advisory about new twists to Social Security phone and email scams. Consumers should be aware that Social Security will  never :
  • threaten you with arrest or other legal action unless you immediately pay a fine or fee; 
  • promise a benefit increase or other assistance in exchange for payment;
  • require payment by retail gift card, cash, wire transfer, internet currency, or prepaid debit card; or
  • send official letters or reports containing personally identifiable information via email.

If you actually do need to submit payments to Social Security, the agency will send a letter with instructions and payment options. You should  never  pay a government fee or fine using retail gift cards, cash, internet currency, wire transfers, or pre-paid debit cards. The scammers ask for payment this way because it is very difficult to trace and recover. For more information on Social Security phone scams and how to report them, click here . Learn more about how to spot spam calls and what to do if you receive them from the Consumer Financial Protection Bureau .

To help you inform others of this important information:

Not subscribed to the Washington Update? | SIGN UP HERE

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.