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Washington DC Update 9/30/21
How do you write an update for a week in Washington that has daily, even hourly, twists and turns? In fact, it is guaranteed that whatever I write now will have changed by the time of publication and reading.
Reconciliation and Infrastructure

As of this morning, the infrastructure bill will move ahead to vote in the House by Thursday. Earlier this summer, the agreement among Democratic leaders was to move the votes for the infrastructure and reconciliation bills together in some way. Democratic leaders are moving forward on the infrastructure vote so they can continue negotiating on reconciliation--and so they will not lose votes and momentum on both bills.

How does this affect CYSHCN and families? There will be cuts across the board in many of the Democratic plans to expand services and provisions to those with disabilities and with lower incomes, such as Medicaid, ACA, and home and community-based services. It is unlikely that the proposals will be abandoned completely, but they will likely be scaled back in terms of funding and scope (i.e., Medicaid expansion for limited time versus permanent).

Government Shutdown

By midnight Thursday, Congress must adopt a measure to fund the government or some federal agencies and operations will shutter starting Friday morning. Monday night a bill (called a continuing resolution) that would fund the government, provide billions of dollars in hurricane relief, and stave off a default in U.S. debts--and that passed the House last week--was blocked in the Senate.

Not only is funding the government at issue but so is the debt ceiling--should it be raised or suspended? Simply put, the debt ceiling is the limit as to how much money the government can borrow, and therefore, how much it can add to the cumulative federal debt. Some argue raising it now is to pay for past borrowing, while others assert that raising it now is to pay for additional borrowing. Regardless, a lot of money is at issue that will affect not just the function of the U.S. government and the financial health of our country as a whole (e.g. could trigger a recession), but could also have global financial impacts.
As the federal government negotiates new agendas, perhaps the updates below may be useful in your work to bring about change in local and state systems of care for CYSHCN and with state policymakers.
Roadmap to the Pfizer COVID-19 Booster
On September 22, the Food and Drug Administration (FDA) amended of the emergency use authorization (EUA) for the Pfizer-BioNTech COVID-19 Vaccine to allow for use of a single booster dose to be administered at least six months after completion of the primary series for:

  • individuals 65 years of age and older;
  • individuals 18 through 64 years of age at high risk of severe COVID-19; and 
  • individuals 18 through 64 years of age whose frequent institutional or occupational exposure to SARS-CoV-2 puts them at high risk of serious complications of COVID-19 including severe COVID-19.

More information on the FDA’s authorization can be found here.

Additionally, on September 24, the Centers for Disease Control and Prevention (CDC) recommended:

  • people 65 years and older and residents in long-term care settings should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 50–64 years with underlying medical conditions should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 18–49 years with underlying medical conditions may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks, and
  • people aged 18-64 years who are at increased risk for COVID-19 exposure and transmission because of occupational or institutional setting may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks.

More information on the CDC’s recommendations can be found here. Vaccines are provided free of charge to anyone in the United States. As part of the American Rescue Plan Act of 2021 (ARP), nearly all Medicaid and CHIP beneficiaries must receive coverage of COVID-19 vaccines and their administration, including these boosters, without cost-sharing. People can visit www.vaccines.gov (English) or www.vacunas.gov (Spanish) to search for vaccines nearby.

HHS Secretary Becerra issued this statement about the COVID-19 Booster policy.

Answers about what is in the COVID-19 vaccines and other mythbuster information can be found here.

This is a helpful table created by Your Local Epidemiologist showing efficacy data by vaccine.
National Alliance of Melanin Disabled Advocates (NAMD) Leadership Summit, Our Presence is Our Power! 
Are you a leader or an aspiring leader of a disability organization who aims to defeat systemic barriers and advance racial justice initiatives? Our Presence is Our Power is a one-day conference for Black disabled leaders and leaders of color with disabilities. "We gather change agents, program coordinators/directors, advocates, communicators, and social entrepreneurs looking to sharpen their leadership skills, meet like-minded individuals, and build collective power."
Updates about the American Rescue Plan and HCBS in action
States are using one-time federal funding from legislation enacted in March to enhance, expand, and strengthen Medicaid home and community-based services (HCBS), this Center on Budget and Priority Policies this Center on Budget and Priority Policies review of 37 states’ plans shows. Most states include measures to deliver immediate relief to HCBS providers; expand provider recruitment, retention, and training initiatives; improve technology and access to telehealth; invest in quality improvement programs; expand efforts to address housing and other social determinants of health; expand access to specific services; increase supports for caregivers; and increase funding for people making transitions from institutions to the community.
Updates about the American Rescue Plan and Pediatric Mental Health Access
The American Rescue Plan Act – Pediatric Mental Health Care Access – New Area Expansion (ARP-PMHCA) programs promote behavioral health integration into pediatric primary care by supporting pediatric mental health care telehealth access programs. State or regional networks of pediatric mental health care teams will provide tele-consultation, training, technical assistance, and care coordination for pediatric primary care providers to diagnose, treat, and refer children with behavioral health conditions. Successful recipients will focus on achieving health equity related to racial, ethnic, and geographic disparities in access to care, especially in rural (including frontier and hard-to-reach) and other underserved areas. PMHCA/ARP-PMHCA advance HRSA strategic plan goals to improve access to quality health services, foster a health care workforce able to address current and emerging needs, achieve health equity, and enhance population health.
Updates on existing investments in
Health Connectivity and Public Health IT 
Interested in following the funding trail in your state to support connectivity for telehealth? This FCC program funded by the CARES Act provides immediate support to eligible health care providers responding to the COVID-19 pandemic by fully funding their telecommunications services, information services, and devices necessary to provide critical connected care services. Follow this link to learn which of the providers in every state and territory were funded in round one.

The FCC's Emergency Connectivity Fund (ECF) is a $7.17 billion program that will help schools and libraries provide the tools and services their communities need for remote learning during the COVID-19 emergency period. ECF will help provide relief to millions of students, school staff, and library patrons and will help close the Homework Gap for students who currently lack necessary Internet access or the devices they need to connect to classrooms.

The U.S. Department of Health and Human Services' (HHS) Office of the National Coordinator for Health Information Technology (ONC) awarded $73 million in cooperative agreements as part of its Public Health Informatics & Technology Workforce Development Program (PHIT Workforce Program). Announced earlier this year and funded through the American Rescue Plan, the program aims to strengthen U.S. public health information technology (IT) efforts, improve COVID-19 data collection, and increase representation of underrepresented communities within the public health IT workforce.
RAISE Caregiving Advisory Council initial report to Congress
On September 22, 2021, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council delivered its initial report to Congress. It includes a comprehensive review of the current state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—can better Recognize, Assist, Include, Support, and Engage family caregivers.

The report identifies for 5 priority areas of the recommendations:

  • Increased awareness of family caregiving.
  • Increased emphasis on integrating the caregiver into processes and systems from which they have been traditionally excluded.
  • Increased access to services and supports to assist family caregivers.
  • Increased financial and workplace protections for caregivers.
  • Better and more consistent research and data collection.
Research priorities to advance disability equity
A research workgroup of the Disability Equity Collaborative (DEC) Research recently released its first paper, "Patient Centered Outcomes Research Priorities to Advance Disability Equity.” Funded by the Patient-Centered Outcomes Research Institute® (PCORI®), the publication provides a clear, much needed blueprint for the field, identifying critical areas for research, providing guidance for funding agencies, and outlining gaps that policy makers need to address to assure equitable health care for people with disabilities.

The report identified 14 priorities for disability research, such as:

  • identifying the best methods to collect patients’ disability status in the health care setting;
  • evaluating training approaches for staff and providers on how to deliver accessible, appropriate, and culturally competent health care to people with disabilities;
  • discovering and testing methods for providing timely disability accommodations during all health care interactions;
  • exploring how disability and other identities intersect and affect the health and health care outcomes; and
  • describing current gaps in practice as well as identifying high performing health care organizations.
Information and tools to promote equity
in Medicaid Managed Care
Promoting Equity in Medicaid Managed Care - This guide describes recommended process steps for states to integrate a focus on health equity in their Medicaid managed care programs. It offers a series of concrete steps to be more intentional about advancing health equity in Medicaid, and specifically through Medicaid managed care programs. The guide focuses on the internal agency commitments and changes that are necessary to address systemic barriers to accessing high quality health care and improving health outcomes, particularly among populations that experience persistent health inequities. It is organized into three primary sections, each containing specific actions for Medicaid agencies.

This document shares actual health disparities and health equity language from Medicaid managed care (MMC) contracts and requests for proposals (RFPs) from 15 states and the District of Columbia as well as the contract for California’s state-based marketplace, Covered California. The criteria for inclusion in this compendium were contracts and RFPs that explicitly addressed health disparities and/or health equity. Website links to the full contracts are included where available.
Upcoming Webinars
ACL/CMS Promising Practices Series: Expanding, Enhancing and Strengthening Home and Community-Based Services under Section 9817 of the American Rescue Plan Act
Date: Thursday, September 30, 2021
Time: 3:00 PM EDT - 4:30 PM EDT

The American Rescue Plan Act signed by President Biden in March provided $12.7 billion to increase access to HCBS for Medicaid beneficiaries. In May, the Centers for Medicare & Medicaid Services (CMS) provided states with guidance to receive the enhanced funding.
This webinar will include an overview of Section 9817 of the American Rescue Plan and presentations from Colorado and Massachusetts on innovative initiatives in their initial state spending plans. 
Lessons Learned from Kennedy Krieger Institute: Neurodiversity, Collaboration and Transition Success for Youth with Disabilities
Wednesday, October 20, 2021
1:30 PM ET / 12:30 PM CT / 11:30 AM MT / 10:30 AM PT 

Neurodiversity, system collaborations, and transition services for youth with disabilities are some of the most cutting-edge topics in the wider world of disability employment. Fostering cooperation between different programs is critical for achieving transformative results for people with significant barriers to employment. 

The Neurodiversity at Work programs at the Kennedy Krieger Institute is built on a foundation of interdisciplinary and interagency collaboration. It offers critical lessons and emerging practices for other youth-serving agencies, organizations, and programs. Please join us for this special webinar where we will unpack and discuss in detail what makes Kennedy Krieger’s work successful.  
Federal Policy Priorities on Disability Employment: NDEAM 2021 and Beyond 
Wednesday, November 10, 2021
1:00 PM ET / 12:00 PM CT / 11:00 AM MT / 10:00 AM PT  

19 months into the COVID-19 pandemic and 10 months into the Biden Administration, it is worth taking time to reflect on how the employment landscape has been transformed for workers with disabilities. The federal government is actively working to capitalize on the accessibility gains made by remote work and striving to implement policies to promote the safety of workers in diverse sectors of the economy. This webinar will feature a host of VIP federal leaders reflecting on their work, their priorities and their hopes for the months ahead. As we celebrate National Disability Employment Awareness Month, we look to these leaders for their reflections on how to link greater inclusion, diversity and equity to the economic recovery of America.
Strategic Affiliations: Trends, Tools and Tips for Success 
Tuesday, October 12, 2021
1:00 – 2:00 PM ET 

One of the most transformative trends in health care is the accelerating shift to increasingly interwoven organizations. The new health care environment is driving growing numbers of health care entities to seek new strategic partnerships to enhance their ability to provide high-quality coordinated care, increase net patient revenue, reduce costs, expand access and respond to changing market demands.

How can you find the best path for your organization to navigate the complexities of forming effective strategic affiliations? How can you ensure your affiliations advance your priorities, meet your goals—and deliver sustainable success? A new Manatt Health webinar provides the answers.

Thank you for subscribing to the Washington DC Update newsletter. Please feel free to contact the Family Voices Director of Public Policy and Advocacy, Cara Coleman, 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 "Unsubscribe" 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.