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Washington DC Update 5/8/2020
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Greetings from Washington, DC
Once again, Congress is developing legislation to address the health and economic consequences of the coronavirus. States and their Medicaid programs are in financial binds, but it could be weeks before something is passed. CMS released an updated set of Medicaid & CHIP COVID-19 FAQs for State Medicaid and CHIP Agencies. And HHS provided a grant of $1 million to Family Voices to facilitate the use of telehealth for children and youth with special health care needs and their families. Read about these topics and more in this week’s Update.

Please note: In light of the COVID-19 pandemic, CMS has re-opened the comment period for responding to its “Request for Information about Coordinating Out-Of-State Medicaid Services for Children with Medically Complex Conditions.” Read more in the “Your Input Sought” section, below. Comments are due on June 3.

Special Announcement:
Family Voices LFPP Virtual Family Engagement Convening
The Family Voices Leadership in Family Professional Partnerships (LFPP) Virtual Family Engagement Convening is underway! This event is for family leaders, Title V professionals, and other stakeholders to discuss successful strategies and best practices on how to improve engagement of families, particularly those from medically underserved populations. The sessions also cover emergency responsiveness in times of crisis; organizational development; assessment of family engagement; and more. In place of an in-person convening, eight online Zoom sessions are scheduled from April 21 to May 19. Read more and register .
  • Coronavirus News, Information, and Resources
  • The Courts
  • Administration
  • Congress
  • Medicaid and CHIP
  • Civil Rights for People with Disabilities--HHS Office of Civil Rights
  • Telehealth
  • Other COVID News and Resources
  • For Families
  • New and Updated CDC Resources
  • Medical, Scientific, Other Coronavirus Information
  • TRICARE and Military Health System (COVID and non-COVID issues)
  • Your Input Sought
  • Upcoming Webinars and Calls
  • Of Possible Interest
The Courts
May 7 was a deadline for the administration to change its position on the lawsuit challenging the constitutionality of the Affordable Care Act (ACA). The White House decided to maintain its position that the entire law should be overturned. The Supreme Court will hear oral arguments in the case sometime after October 2020. A decision probably will not be rendered until the spring of 2021.
The Administration
(HHS Press Release, 4/30/20)
On April 30, the U.S. Department of Health and Human Services, through the Health Resources and Services Administration, awarded $20 million to increase telehealth access and infrastructure for providers and families to help prevent and respond to COVID-19. Family Voices is among the grantees, receiving $1 million to “Expand telehealth services for families of children with special health care needs through trainings for families and national family organizations on accessing telehealth, including for routine care and services they’re not accustomed to accessing virtually.” Other grantees are the American Academy of Pediatrics, the Association of Maternal and Child Health Programs, and the University of North Carolina-Chapel Hill. These funds were made available through the 2020 Coronavirus Aid, Relief, and Economic Security (CARES) Act, signed into law on March 27, 2020.

(CMS Press Release, 4/30/20)
Among the changes effective for both Medicare and Medicaid: As mandated by the CARES Act, during the COVID-19 pandemic, nurse practitioners, clinical nurse specialists, and physician assistants will be permitted to (1) order home health services; (2) establish and periodically review a plan of care for home health patients; and (3) certify and re-certify that patients are eligible for home health services. They will no longer need the certification of a physician. 
In Congress
As explained the April 27 Update , Congress is in the process of developing another bill to address the coronavirus pandemic and its economic consequences. The new legislation is being referred to as CARES 2, or Package/Phase 4. Members of Congress and a dvocates are asking for a number of provisions in the next bill. See Pelosi Seeks to Wrangle Caucus Behind Next COVID-19 Bill (The Hill, 5/7/20). The legislation will likely spur more controversy than the previous coronavirus bills. While Democrats would like to move quickly and “go bold”— Schumer, Pelosi Set to Unveil 'Rooseveltian' Relief Package (The Hill, 5/7/20)—Senate Majority Leader Mitch McConnell (R-KY) would like to hit “pause” to see how previously enacted measures are working. See Pelosi Pushes New Virus Package as McConnell Hits 'Pause' (KTBS, 5/5/20). In contrast to Leader McConnell, Democrats and some Republicans would like to provide financial assistance to states, which are experiencing massive revenue losses. See McConnell under Mounting GOP Pressure to Boost State Aid (The Hill, 5/7/20).
On May 5, the American Academy of Pediatrics, Children’s Defense Fund, Children’s Hospital Association, Family Voices, First Focus Campaign for Children, March of Dimes, and National Association of Pediatric Nurse Practitioners sent a letter to congressional and committee leadership urging that the next coronavirus bill include provisions to protect and enhance Medicaid and CHIP by, among other things, increasing the federal Medicaid match rate when states experience economic downturns, providing emergency support to Medicaid providers, and retaining the previously-enacted Medicaid “maintenance of effort” (MOE) provisions, on which the extra federal Medicaid match is conditioned. Among other requirements, the MOE bars states from disenrolling Medicaid beneficiaries or reducing benefits during the public health emergency. See Families First Coronavirus Response Act – Increased FMAP FAQs (updated 4/13/20). Because it is costly, some governors of both parties would like to weaken the MOE. See the “Medicaid & CHIP” section, below, for more information about the Medicaid funding challenges faced by states.
Medicaid and CHIP
State Medicaid Programs in Peril
As more people lose their jobs, and with it their insurance coverage, the Medicaid program is increasingly important. Yet state Medicaid programs are in peril because state revenues have fallen drastically as people shelter in place. Since states must balance their budgets each year, they are making or contemplating reductions in Medicaid benefits and reimbursement to cut their spending. See States Cut Medicaid as Millions of Jobless Workers Look to Safety Net (Politico, 5/5/20). To make it worse, when states cut their Medicaid spending, they are also losing their federal match, meaning that the actual loss of services is greater than it might seem, and is greater in states with higher federal match rates, i.e., in states with lower family incomes. See State Budget Cuts to Medicaid Means Reduced Federal Funding, Larger Total Cuts (Georgetown Center for Children and Families blog post, 5/7/20).

At the same time, numerous pediatric practices, community health centers, children’s hospitals and other providers that serve many Medicaid patients are suffering financially because well-child visits, routine sick visits, and elective surgeries have also fallen drastically as people shelter in place. Unfortunately, the first distribution of federal funds for health care providers made available under the CARES Act was based on Medicare billing, meaning very little of it went to providers who serve children and non-elderly adults. See $50b In Cares Act Provider Relief: Where'd It Go? Where's It Going?  (Health Leaders, 4/23/20).

Therefore, many health care providers and patient advocates are urging Congress to provide help to Medicaid providers and states in the next coronavirus bill. See Bipartisan Group of Medicaid Directors, AMA, MACPAC, and Stakeholders Issue Urgent Pleas for More Medicaid Help for Safety Net Providers (Georgetown Center for Children and Families blog, 5/1/20).

Other Medicaid Information and Resources:

States’ Recent 1115 Waiver Applications Include Provisions to Support Children during the Pandemic (National Academy for State Health Policy, 4/27/20). Among the waivers are some (for Georgia and New Hampshire) that provide reimbursement to family caregivers for youth with special health care needs. Other waivers allow states to augment payments to foster caregivers, and to coordinate care through telehealth for Medicaid managed care organizations.

50-State Survey of Medicaid Pharmacy Directors (Kaiser Family Foundation and Health Management Associates (5/7/20)

CMS Releases Additional Medicaid & CHIP COVID-19 FAQs for State Medicaid and CHIP Agencies (CMS News Alert, 5/7/20)
The updated FAQs cover a variety of Medicaid and CHIP topics, including emergency preparedness and response, benefit, financing, eligibility and enrollment flexibilities, information technology, and data reporting.

  • Coverage for American Indians and Alaska Natives [living in another state] (p. 16): Can state Medicaid programs consider students living in the state solely for the purposes of education whose parents or caretakers live out-of-state, including American Indian and Alaska Native (AI/AN) boarding school students, to be state residents?

  • What other options are available for State Medicaid programs to address payment for services provided to out-of-state students? Can states develop interstate residency agreements? (p. 16)

[Not new] Pharmacy/Prescription Drugs (p. 32)

  • Will CMS issue guidance on loosening prior authorization requirements for medication and supplies for medically fragile children and other populations who may be quarantined? The answer to this question depends on whether the child receives their care through Fee-For-Service (FFS) or managed care. FFS/Supplies: States have flexibility to establish and manage prior authorization processes without CMS approval. Given that medically fragile children are subject to Early and Periodic Screening, Diagnostic and Treatment (EPSDT) requirements, there should be no hard limits on services provided to these children. A SPA [State Plan Amendment] may be needed, depending on the state’s goals. FFS/Pharmacy: States have flexibility to establish the prior authorization process without CMS approval, including length of time and units approved. A state may need to amend their SPA for a change in quantity dispensed. Managed Care: Under Medicaid managed care, states may develop the specific standards and criteria that best meet the needs of their program, including accelerated or relaxed requirements during times of emergency. Federal law does not prohibit or limit states from requiring managed care plans to temporarily suspend prior authorization requirements, extend prior authorizations through the termination of the emergency declaration, and expedite processing of new prior authorizations with flexibility in documentation (e.g., physician signatures).

  • Can states provide an additional month of medication to a beneficiary when their Medicaid eligibility is ending? States have flexibility to determine the quantity of medication covered per prescription fill. Federal financial participation (FFP) is available for a prescription if the date of service falls during the individual’s Medicaid eligibility period.
Civil Rights
In this pandemic era, there is the possibility (and have been cases) of discrimination in the allocation of health care resources based on patients’ disabilities or pre-existing conditions. The Office of Civil Rights in the Department of Health and Human Services has issued a statement to make it clear that such discrimination is illegal. Please see the April 27 Update for more information about this issue. If you become aware of any instances of discrimination based on disability or medical condition, or of state or facility policies that seem discriminatory, you can file a complaint with the HHS Office of Civil Rights.

Another type of discrimination arises from blaming certain populations as the cause for the disease. Historically , pandemics have led to such scapegoating, and different populations are being blamed for today’s pandemic (such as Muslims in India , Asian-Americans in the US ). A recent statement from the Department of Justice cautions against discrimination based on race, ethnicity, disability, and other traits, and provides information on where to report such discrimination: Statement by Assistant Attorney General for Civil Rights Eric S. Dreiband Protecting Civil Rights While Responding to the Coronavirus Disease 2019 (COVID-19)
HHS Awards $20 Million to Combat COVID-19 Pandemic through Telehealth (HHS Press Release, 4/30/20). Please see “Administration” section, above, for more information.

Using Telebehavioral Health to Increase Access to Care (Association of State and Territorial Health Officials). For more resources, visit ASTHO's COVID-19 page .

As explained in an April 23 press release , the Center for Medicare and Medicaid Services (CMS) has released a State Medicaid & CHIP Telehealth Toolkit , with a focus on pediatric considerations, including the impact of HIPAA, FERPA, IDEA, and age-of-consent laws. The Toolkit includes a checklist of policy questions intended to serve as a tool for states to assess telehealth in their state. More about the toolkit: CMS Releases Telehealth Toolkit with Special Emphasis on Pediatrics (Georgetown Center for Children and Families blog, 4/23/20).

The Center for Connected Health Policy provides up-to-date information on state actions and federal Medicare and Medicaid policies related to telehealth. 
Other COVID News, Information, and Resources
Asian American and Native Hawaiian & Pacific Islander in-language COVID-19 resources 
The Asian & Pacific Islander American Health Forum (APIAHF) has launched a crowd-sourcing project to collect Asian American and Native Hawaiian & Pacific Islander in-language COVID-19 resources. APIAHF will gather all of the responses and organize them by language here , so that people can see the variety of available resources. Please fill out the form here to submit a resource.

(Fierce Healthcare, 5/5/20)

Secretary DeVos Reiterates Learning Must Continue for All Students, Declines to Seek Congressional Waivers to FAPE, LRE Requirements of IDEA (Department of Education Press Release, 4/27/20): “As requested by Congress in the  Coronavirus Aid, Relief, and Economic Security (CARES) Act , Secretary DeVos examined certain federal education laws to determine what, if any, additional waiver authority the Secretary believes is necessary to provide limited flexibility to state and local education agencies during this unprecedented time. The Secretary determined there is no reason that a student's access to free appropriate public education (FAPE) cannot continue online, through distance education or other alternative strategies.”

For Families

Family Voices Resource eBlast: COVID-19 Series
This special Resource eBlast series focuses on a variety of topics aimed to support families of CYSHCN in the context of COVID-19. Giannina Lopez Perez of the Puerto Rico Family-to-Family Health Information Center translated the first three parts of the series to Spanish to share with families in Puerto Rico.

Worth repeating: Advice on health care and education for families with CSHCN are highlighted in a special COVID-19 edition of Complex Child .

Worth repeating: COVID-19 Disability Form
This form can be giving to health care providers to help ensure with proper medical treatment in case of hospitalization due to COVID-19-related symptoms. English | Spanish
New and Updated CDC Resources

Need Help Communicating Health Risk to Your Audience?
You can take the online ‘ Fundamentals of Communicating Health Risks ’ course for FREE by registering on CDC-TRAIN . The course information can be used by clinicians, public health professionals, and media specialists.

CDC Websites and Mailing Lists to Learn More
What’s New? Features a running list of web pages that have been updated.
Medical, Scientific, Other Coronavirus Information

NEW More time to provide comments on the CMS Request for Information, “Coordinating Out-Of-State Medicaid Services for Children with Medically Complex Conditions” – due Wednesday, JUNE 3.
In light of the COVID-19 pandemic, the Center for Medicare and Medicaid Services (CMS) decided to re-open the comment period on the Request for Information that it originally issued in January. 
Monday, May 11, 12:00 pm ET
National Academies of Sciences, Engineering, and Medicine

Tuesday, May 14, 3:00-5:00 pm ET
Maine Parent Federation, Center for Community Inclusion and Disability Studies, Mainely Kidz

Thursday, May 14, 5:00-6:30 pm ET
Maryland Chapter of AAP and the Child and Adolescent Health Measurement Initiative (CAHMI)
Pre-registration required

Monday, May 18, 2:00-3:30 pm ET
University of Maryland-Baltimore
This webinar was developed to support helpers in System of Care grant communities understand how exposure to various types of trauma that are prevalent in tribal communities can impact them.

Wednesday, May 20, 3:00 pm ET
Christopher & Dana Reeve Foundation's Paralysis Resource Center
This webinar is about the services of the Aging and Disability Networks including the Eldercare Locator.

» Check out the resources from the Family Voices/CAHMI webinar, “Partnering for Success: How Family Organizations and Title V Agencies can Utilize the Data Resource Center for Child and Adolescent Health.” ( slides , recording , and NSCH Redesign Manuscript from MCHB )

ADvancing States (formerly National Association of States United for Aging and Disabilities)
This free course is designed to help Information and Referral/Assistance (I&R/A) professionals to improve services and resources provided to people with intellectual and developmental disability (I/DD) and their families, and to integrate cultural and disability competence into their work with this population. To take the course, log in to ADvancing States iQ and search for the course, "Strengthening Disability and Cultural Competence in Information and Referral/Assistance (I&R/A) Work with People with I/DD and their Families." If you are new to the iQ learning center, you will need to create an account first. Click here to log in or create an account.
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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.