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Washington DC Update 10/27/21
Finish Line? Congress has not yet crossed a finish line with reconciliation and infrastructure, but it appears that there may be agreement in sight. 

Although not set in stone, there appear to be some clear indications about some proposals that will not be in this bill: free community college, paid medical leave (if included, it will be just 4 weeks leave with conditions), lowering prescription pricing (if in, will be very narrow). The Child Tax Credit, Medicaid coverage gap, and tax credits for health insurance premiums look to still be included but only for a year or two.

The goal remains to cross the finish line by Halloween. Congress will go on recess for Thanksgiving Holiday and then return to tackle the other looming deadline with the debt ceiling and federal budget.
House Energy and Commerce Committee News
The work of Congress continues in a variety of ways alongside the Build Back Better negotiations. Energy and Commerce Committee Chairman Frank Pallone, Jr. (D-NJ) and Health Subcommittee Chairwoman Anna G. Eshoo (D-CA) released a joint statement after the House of Representatives passed four public health bills last week. The titles with brief descriptions are below with highlights indicating aspects that might affect CYSHCN and families. These bills have just passed the House and will need Senate approval to become law.

H.R. 4369, the “National Centers of Excellence in Advanced and Continuous Pharmaceutical Manufacturing Act,” was introduced by Pallone and Health Subcommittee Ranking Member Brett Guthrie (R-KY). The bill would amend the 21st Century Cures Act to provide the Food and Drug Administration (FDA) with the authority to designate institutions of higher education that provide research, data, and leadership on advanced and continuous manufacturing for pharmaceuticals, as National Centers of Excellence in Advanced and Continuous Pharmaceutical Manufacturing. The bill passed on the House Floor by a vote of 368-56.
H.R. 3635, the “Strengthening America’s Strategic National Stockpile Act of 2021,” was introduced by Rep. Elissa Slotkin (D-MI) and 15 other original cosponsors. The bill would enhance the capabilities of the Strategic National Stockpile (SNS) in order to ensure the federal government can sufficiently respond to the ongoing COVID–19 pandemic and prepare for future public health emergencies that require distributions of drugs, devices, vaccines, or other ancillary medical supplies from the SNSThe bill passed on the House Floor by a vote of 397-22.

H.R. 654, the “Drug-Free Communities Pandemic Relief Act,” was introduced by Reps. David Joyce (R-OH) and Derek Kilmer (D-WA). The bill would waive a federal grantee’s matching requirements during the COVID-19 pandemic if they are unable to meet the match for the Drug-Free Communities Support Program, which is a program that supports community-based drug prevention coalitions in the United States. The bill passed on the House Floor by a vote of 395-30.

H.R. 2379, the “State Opioid Response Grant Authorization Act of 2021,” was introduced by Reps. David Trone (D-MD) and Mikie Sherrill (D-NJ). The bill would amend the 21st Century Cures Act to authorize the State Opioid Response (SOR) Program and harmonize the uses of these grants with funding provided by the Substance Abuse and Mental Health Services Administration. The bill would also require the U.S. Government Accountability Office (GAO) to assess how grant funding is allocated to states, state perspectives on funding levels, and how grant funding is awarded under similar programs. The bill passed on the House Floor by a vote of 380-46. 
Getting Ready! COVID-19 Vaccine for Children 5-11 Years Old
Take time to explore the CDC webpage created to aid in planning for COVID-19 vaccination among children age 5 to 11. It includes links to scientific research, as well as strategies to plan and promote vaccination in your community.

This Kaiser Family Foundation issue brief explores policy implications and considerations as we prepare to roll out vaccinations for this next age group of children, such as scale-up, supply, equity in access, and the importance of trusted messengers.
"One-Stop Shop" for ARPA
The Centers for Medicare & Medicaid Services (CMS) launched a new "one-stop shop" for state Medicaid agencies and stakeholders on Medicaid.gov to advance transparency and innovation for home and community-based services. Home and community-based services allow people enrolled in Medicaid to receive services and supports in a preferred setting outside of an institution, such as in their own home. Through this new webpage, state Medicaid agencies and stakeholders can access information about states' plans to enhance, expand, and strengthen home and community-based services across the country using new Medicaid funding made available by the American Rescue Plan Act of 2021 (ARPA).

To view the home and community-based services webpage with states' ARP section 9817 spending plans and narratives, letters issued to states on their spending plans and narratives, and other important information related to the implementation of ARP section 9817, please visit this page at www.medicaid.gov. For additional information on ARPA funding for home and community-based services, see the guidance that CMS issued to states via a State Medicaid Director Letter - PDF in May of this year.

Consider accessing the recording of a webinar previously hosted by CMS and ACL, Expanding, Enhancing and Strengthening Home and Community Based Services under Section 9817 of the American Rescue Plan Act, which includes an overview of Section 9817 of the American Rescue Plan, as well as presentations from Colorado and Massachusetts on innovative initiatives included in their initial state spending plans. You can also find information background information on the May 2021 ACL blog.
Benefits of Medicaid Continuous Eligibility for Latino Children
Georgetown Center for Children and Families and Unidos US released a new report last week entitled, "Advancing Health Equity for Children and Adults with a Critical Tool: Medicaid and CHIP Continuous Coverage." The report highlights the important role Medicaid/CHIP play for Latino children and how 12-month continuous eligibility could advance equity by minimizing gaps in access to care. You will find links to the full report, a blog on the topic, and a social media toolkit through the link above.
Make Health Information Understandable
October is Health Literacy Awareness Month! Healthy People 2030—an initiative that identifies public health priorities to help individuals, organizations, and communities across the United States improve health and well-being across a 10-year timeframe—addresses both personal health literacy and organizational health literacy. According to Healthy People 2020:

  • Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

  • Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

The CMS Office of Minority Health has health literacy resources available in multiple languages to work to achieve these goals.
CMS Innovation Center Strategic Directions
Consider looking through this white paper recently released from CMS regarding the strategic directions of their innovation center over the next decade. Table 1 outlines issues/challenges and next steps in a digestible way with implications for CYSHCN, such as developing more Medicaid-focused models, call for quality measurement, and increase uptake from learning collaboratives to transform delivery and alignment of models.
Webinars of Interest
Webinar: Assistive Technology and HCBS
Wednesday, November 10, 2021 | 3:00pm ET

Assistive technology (AT) is a critical service among long-term services and supports (LTSS) to give persons with disabilities an option to institutional care. Medicaid Home and Community-Based Service (HCBS) waivers are one important resource for provision of AT. This webinar will provide an overview of HCBS waivers, how the American Rescue Plan Act (ARPA) is giving states the opportunity to provide additional HCBS services and supports, and how Assistive Technology Act programs are involved with their state’s HCBS waivers and other LTSS.

Webinar: Essential Health Benefit Benchmark Plans - Who Decides?
Tuesday, November 9, 2021 | 2:00pm ET

State officials can address health disparities and close coverage gaps by updating their Essential Health Benefits (EHB) benchmark plans, which establish minimum health coverage standards in each state. However, who chooses a state’s EHB benchmark, and how that determination is made, is not always obvious. In this webinar presentation, attorneys from the National Health Law Program (NHeLP) and the law firm Hooper, Lundy & Bookman will examine state decision-making in EHB benchmark selection, ranging from legislation governing the selection process to the default option when no EHB benchmark is selected. 

Remind me again…What is an EHB? The Affordable Care Act (ACA) establishes essential health benefits as the coverage standard for health plans sold in the individual and small-group markets for all fifty states and the District of Columbia, including the health insurance Marketplaces.

How does this affect CYSHCN? “Pediatric services” is one of the required classes of EHB coverage under the ACA. However, other than oral health and vision care, neither the act nor the regulations for implementing it define what these services should be.

Additional reading on EHB:

  • This NHeLP blog describes how Colorado used the EHB benchmarking process to advance health equity with regard to gender-affirming care.

  • Specific to Pediatrics and EHB: check out this Health Affairs (free access) article that investigated how state benchmark plans—the base plan chosen in each state as the standard or benchmark of coverage in that state under ACA rules—address pediatric coverage in plans governed by the essential health benefits standard.

REIMAGINE: A Week of Action to Reimagine Our National Response to People In Crisis
November 15 - 19, 2021

  • NAMI is bringing together leading organizations and advocates for REIMAGINE: A week of action to reimagine our national response to people in crisis, taking place Nov. 15–19, to elevate crisis response and coordinate federal and state advocacy efforts to establish and fully fund our country’s crisis response systems. During that week, on Nov. 16-18, join people across the country interested in improving our response to people in crisis for a virtual summit to:
  • Hear personal stories from individuals with lived experience of our current crisis system
  • Join panel discussions with organizations that bring civil rights, providers, law enforcement and youth perspectives to the conversation of how crisis response intersects with other key factors
  • For individuals leading or engaging in advocacy efforts, join a 988 Advocacy Intensive to gain insight on policy details and advocacy tactics
  • Contact policymakers to share why they should prioritize improving our crisis system
  • For more information and to register, visit https://reimaginecrisis.org/ Questions? Please contact reimaginecrisis@nami.org

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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.