February 13, 2020
Washington DC Update 2/13/2020

Greetings from Washington!
In the Update this week:
  • The president released his proposed FY 2021 budget. It proposes significant cuts to Medicaid and some other health programs, but is considered “dead on arrival” in Congress.
  • A House committee approved another version of legislation to address surprise medical bills; it had both bipartisan support and opposition.
  • The administration will begin to enforce the “public charge” rule on February 24.

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.

Other useful information:

AND…
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.

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.

IN THIS ISSUE

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

THE ADMINISTRATION
President's Budget Proposal
On February 10, the president released his budget proposal for FY 2021, which begins on October 1, 2020. The president’s budget is just a suggestion to Congress, as noted by the chairman of the Senate Budget Committee, Sen. Mike Enzi (R-WY), who has decided not to hold hearings on the president’s proposals. Congress (particularly the Democrat majority in the House) will not accept the president’s proposed changes to the Medicaid program, which would significantly cut the programs’ funding through work requirements and other measures. See Trump Budget Takes Aim at Medicaid (Politico Pulse, 2/10/20). Ultimately, spending decisions will be made through negotiations between the two chambers of Congress and the administration.

Even though the president’s budget does not hold much sway in Congress (particularly if one house is of the opposing party) it does reflect the president’s priorities. For a broad overview of the health policies reflected in the president’s budget, see the White House Fact Sheet on Health and Wellness . The president’s proposed spending levels for agencies within the Department of Health and Human Services can be found in the HHS Budget in Brief , and more details about each agency can be found here , including explanations about the proposed budgets for HRSA , the CDC , and the Indian Health Service . For information on the proposed budget for the Administration on Community Living, see pp. 159-163 of the HHS Budget in Brief , and this ACL webpage . The White House will release more details about some of the president’s health care proposals next week.

Here is some information about the budget proposals of relevance to CYSHCN and their families:

Title V Maternal and Child Health Block Grant. While the president proposes a funding increase for the Block Grant, he assumes that states will use that funding to carry out the functions of programs he proposes to eliminate -- Autism and Other Developmental Disorders, Heritable Disorders, Emergency Medical Services for Children, and Sickle Cell Disease Treatment. Together, those programs currently receive a total amount greater than the proposed increase in the Block Grant funding. See this statement from the Association of Maternal and Child Health Programs .

See also:

Family-to-Family Health Information Centers (F2Fs). The budget includes a continuation of F2F funding at the current level of $6 million per year through FY 2024, as provided in the 2019 law extending authorization and funding for the program.

A note about F2F funding: There are basically two types of federal spending – “mandatory” and “discretionary.”

“Discretionary” programs - such as the Title V Maternal and Child Health Block Grant and programs created by the Individuals with Disabilities Education (IDEA) Act - are authorized and funded in separate laws. They are authorized to receive funding (usually at a specified maximum level) for a set number of years, or sometimes permanently. Each year, Congress (with the president’s signature) can appropriate more, less, or the same amount the program received the previous year. A president’s budget proposes an appropriations level for each program (“line item”); sometimes the administration will propose to “zero out” a program.

The F2F program is somewhat unusual for a grant program in that it is funded directly through its authorizing legislation; that is, it falls into the “mandatory” spending category. Accordingly, it will be funded at the amount and for the duration specified in the law that authorizes it, without going through the annual appropriations process. (Of course, Congress can amend a law at any time, but has not done so during past F2F authorization periods.) After FY 2024, the F2F program will have to be reauthorized in order to get any funding. In contrast, some mandatory spending programs - like Medicaid, SSI, and Medicare - are open-ended in amount and duration. They are permanently authorized, and the actual spending levels for these “entitlement” programs is determined by the number of people eligible for its benefits. If the eligibility criteria or other aspects of the program (such as covered benefits) are changed by law or regulation, then the actual spending level for the program will change. Thus, “cutting” the Medicaid program at the federal level means that Congress and/or the administration changes a program policy (e.g., eligibility criteria, or the state matching rates) that will have the effect of reducing federal spending.
CONGRESS
Surprise Medical Billing
There are now multiple bills in the House and Senate to address the issue of surprise medical billing, a situation that arises most often when a patient goes to an in-network facility but gets billed by a provider who works within the facility but is not in-network because they are contractors rather than facility employees. The various pieces of legislation take different approaches - one favored by health care providers, the other favored by unions, consumers, and insurers. On February 11, 2020, the House Committee on Education & Labor marked up (considered) a bipartisan bill to address surprise medical billing ( H.R. 5800 , amended in committee). Although the bill was endorsed by Chairman Bobby Scott (D-VA) and Ranking Member Virginia Foxx (R-NC), it was also opposed by members of both parties. Those objecting to it support another bill on the topic that was developed by the Ways & Means Committee and which is scheduled to be marked up on February 12. That bill is considered more favorable to hospitals and doctors than the Education & Labor bill. See House Panel Advances Bipartisan Surprise Billing Legislation Despite Divisions (The Hill, 02/11/20). On February 7, 2020, House Energy and Commerce Committee Chairman Frank Pallone, Jr. (D-NJ), Republican Leader Greg Walden (R-OR), Senate HELP Committee Chairman Lamar Alexander (R-TN), and Ranking Member Patty Murray (D-WA) released this statement :

Surprise medical bills are the outrageous result of a broken system that takes advantage of vulnerable patients. Last summer, our two committees advanced bipartisan solutions to protect patients from these bills, and in December, we announced a bipartisan, bicameral agreement to put an end to this egregious billing practice.

“Protecting innocent patients has been our top goal throughout this effort, and we appreciate that the other two House committees share this priority. We look forward to working together to deliver a bill to the president’s desk that protects patients and lowers health care costs for American consumers.”

In short, there is great interest in addressing this issue, but the path to enacting a law is not yet clear.
House Passes Bill to Provide Assistance to Territories
On February 7, the House passed the Emergency Supplemental Appropriations for Disaster Relief and Puerto Rico Disaster Tax Relief Act ( H.R. 5687 ). The bill would provide direct disaster relief and tax provisions – primarily expansions of the earned income and child tax credits – intended to help Puerto Rico, the U.S. Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands. It is not clear whether the bill will be taken up by the Senate, given opposition from the White House and Senator Chuck Grassley (R-IA), chairman of the Finance Committee, which would have jurisdiction over the tax provisions. See Puerto Rico Aid Package Passes House over GOP Objections (Roll Call, 2/7/20). 
Hearing on the Military's Exceptional Family Member Program
On February 5, the House Armed Services Committee’s Subcommittee on Military Personnel held a hearing, "Exceptional Family Member Program - Are the Military Services Really Taking Care of Family Members?" Witnesses included parents of children with special health care needs whose families are in the military. See the committee website  for more information and to view a video of the hearing.
Hearing on Family Leave
On February 11, the Education & Labor Committee’s Subcommittee on Workforce Protections held a hearing, “Balancing Work, Health, and Family: The Case for Expanding the Family and Medical Leave Act.” See the committee website for a video of the hearing and the witnesses’ written testimony.
MEDICAID/CHIP NEWS, INFORMATION, AND RESOURCES
More on: CMS Guidance Allowing States to Partially "Block Grant" their Medicaid Programs
 As explained at length in the February 5 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).

Update: On February 6, the House of Representatives passed  H.Res.826 , a non-binding resolution expressing disapproval of the guidance and calling on the administration to withdraw it. House Votes to Condemn Trump Medicaid Block Grant Policy (The Hill, 2/6/20). CMS Administrator Seema Verma answered criticisms of the guidance with an op-ed, No, The Trump Administration Is Not Cutting Medicaid (Washington Post, 2/6/20).

An article, The Health 202: Washington Is At War Over Block Granting Medicaid (Washington Post, 2/7/20), provides a good explanation of the issue, and two analyses of the proposal have been prepared by nonpartisan organizations:

For background, see the CMS press release and fact sheet , and Overview of the Centers for Medicare & Medicaid Services’ New Medicaid Block Grant Guidance (National Academy for State Health Policy, 2/3/20).
More on: Proposed Medicaid Fiscal Accountability Rule
 On November 12, 2019, the Centers for Medicare and Medicaid Services (CMS) issued a rather technical proposed rule ( press release ; fact sheet ) that would limit the way that states can raise funds for their share of the Medicaid program. Comments were due on February 1. Organizations - including children’s groups, other groups representing patients, hospitals, and the National Association of State Medicaid Directors - commented on the proposed regulation, expressing concern that states would need to make cuts in their Medicaid programs should the proposed rule be adopted. The bipartisan National Governors Association (NGA) also expressed concern, in this letter urging that CMS gather more data about the impact of its proposal before moving forward with the rule. See Governors Warn Trump Rule Could Lead to Big Medicaid Cuts (Associated Press, 2/6/20). See Strong Opposition Emerges to Damaging Medicaid State Financing and Supplemental Payment Rule (Georgetown Center for Children and Families blog, 2/6/20) ; Proposed Medicaid Changes Could Drastically Cut Funding for Texas Hospitals (Houston Chronicle, 2/10/20). From last week: Medicaid Rule May Have a Huge Impact (Axios Vitals, 2/3/20). 
WORTH REPEATING: Issue Briefs about Medicaid Home and Community-Based Care Services
The Kaiser Family Foundation (KFF) has released two new issue briefs about the latest enrollment and spending data on Medicaid’s home and community-based services (HCBS). The briefs contain data about per-enrollee spending on HCBS by target population, HCBS waiver waiting lists, and a discussion of state policy trends, such as implementation of electronic visit verification and value-based payment models. The briefs are: Medicaid Home and Community-Based Services Enrollment and Spending and Key State Policy Choices About Medicaid Home and Community-Based Services .  
MEDICAID WAIVERS
Pending State Waiver Requests
Illinois: Illinois has submitted an application for a new 5-year section 1115 demonstration seeking authority for three initiatives: (1) Extension of the postpartum coverage from 60-days to 12-months; (2) Managed care organization (MCO) reinstatement for Medicaid beneficiaries who submit late redetermination paperwork within 90-days; and (3) The waiving of hospital presumptive eligibility (HPE) . Comments can be submitted through February 13, 2020.

Waiver Updates:
TRICARE
TRICARE Beneficiary Bulletin Podcast #540 (Feb. 10, 2020) – transcript available
This podcast addresses:
·        Military Health System Nurse Advice Line 
·        Extended Care Health Option 
·        US Family Health Plan

Visit the Multimedia Center for this podcast and previous podcasts.

More TRICARE info can be found at
OTHER NEWS, INFORMATION, AND RESOURCES
Georgetown Report on Children's Insurance Coverage
As explained in this blog post , on February 7 the Georgetown Center for Children and Families released the ninth in its series of reports on the  Future of Children’s Health Coverage . The policy brief provides a menu of ideas to Cover All Children .

RESOURCES
More on: Public Charge Rule
As reported in the January 29 Update , the Supreme Court lifted a nationwide-ban (injunction) on enforcement of the “public charge” rule, pending further appeals. The administration has announced that it will begin enforcing the rule as of February 24, 2020, meaning that immigrants do not need to report the application, certification or approval to receive, or receipt of applicable non-cash public benefits that occurred before February 24. (The rule cannot be applied in Illinois, where there is a statewide injunction.) The “public charge” rule would make it easier for the government to deny green cards or entry visas to people deemed to be at risk of becoming a “public charge,” i.e., dependent on public benefits. It is important to remember that the rule does NOT affect children’s eligibility for Medicaid or other programs, and that a child’s use of such programs will NOT be held against his/her family members.

YOUR INPUT SOUGHT
Please pay special attention to the items marked with ***
Please see above section on Medicaid waivers to comment on state waiver proposals.

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 .

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). 
OF POSSIBLE INTEREST
Authentic Family Partnership in Health Care Improvement: What Does it Take? By Family Partnerships Specialist, and Family Voices staff member, Cara Coleman, JD, MPH (“Insights” blog, National Institute for Children’s Health Quality) 
INFORMATION ON SOCIAL SECURITY SCAMS
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 -

UPCOMING WEBINARS AND CALLS
Thursday, February 13, 2:00 pm ET
ABLE National Resource Center
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)
The presenter is from the Family Run Executive Director Leadership Association (FREDLA). 
Thursday, February 20, 2:00 pm ET
RAISE Family Caregiver Resource and Dissemination Center, National Academy for State Health Policy (NASHP)
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, 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, 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
SAMHSA TA Network

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

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.